The content presented in this book is meant for inspirational and informational purposes only.

The
purchaser of this book understands that the author is not a medical professional, and the information
contained within this book is not intended to replace medical advice or to be relied upon to treat, cure
or prevent any disease, illness or medical condition. It is understood that you will seek full medical
clearance by a licensed physician before making any changes mentioned in this book. The author and
publisher claim no responsibility to any person or entity for any liability, loss or damage caused or
alleged to be caused directly or indirectly as a result of the use, application or interpretation of the
material in this book.

First published in 2021

Copyright © Bridget Hustwaite 2021

All rights reserved. No part of this book may be reproduced or transmitted in any form or by any
means, electronic or mechanical, including photocopying, recording or by any information storage
and retrieval system, without prior permission in writing from the publisher. The Australian
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Allen & Unwin

83 Alexander Street
Crows Nest NSW 2065
Australia
Phone: (61 2) 8425 0100
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ISBN 978 1 76087 908 2

eISBN 978 1 76106 122 6

Internal design by Alissa Dinallo Internal illustrations by Mika Tabata Index by Kerryn Burgess Set
by Bookhouse, Sydney Cover design: Alissa Dinallo
For fifteen-year-old Bridget,
who knew her shitty periods
weren’t normal
 Contents

Welcome!
My story

WHAT TO KNOW
1. Endo 101
2. Diagnosis
3. Surgery and recovery
4. Associated conditions

HOW TO DEAL
5. Social media and self-advocacy
6. Let’s get physical (therapy)
7. Mental health matters
8. Let’s talk about sex, bby
9. You are what you eat
10. Complementary therapies
11. Fertility and parenting
12. Work and study
13. Rest and play
HOW TO HELP
14. Endo is for everyone
15. For the friend, colleague, relative or partner
A final word

Acknowledgements
Recommended resources
Endnotes
Index
 Welcome!

I’ll be honest: I have NO idea how to start this thing! Which may seem
strange for someone who can confidently greet a national audience on live
radio every single weeknight. But this is very different.
Much like with writing, there is a structure when it comes to radio
presenting. Even though there are a lot of announcers out there who have
this wonderful ability to sound quite spontaneous and casual, we’ve all been
trained to follow some kind of formula. For instance, the first talk break of
my show is the most important one to nail because it will basically
determine whether or not the listener will stay tuned or switch stations. The
general flow is this:
Greeting (Hi! What’s up! Welcome!) > Forward Promote (Here’s what’s
coming up/why you need to stay tuned) > Play First Song.
All in all, it takes about 90 seconds. Usually with some audio grabs to
keep it colourful but it needs to be straight to the point. Keep it tight and
adapt a ‘word economy’, as my former boss would call it.
It is the absolute opposite of writing a book, where there is simply no
such thing. Instead, you are punching towards tens of thousands of words.
Allllll the words. I’m freeeeee to say as much as I want!
So, hi! It’s nice to meet you and I’m so excited that you have picked up
this book. You may have done so because:

You’re searching for an endometriosis diagnosis

You have already been diagnosed
You have a loved one with endometriosis and you want to learn more
about it
 None of the above—maybe you listen to me on the radio or thought
this book looked cool (don’t blame you). ¯\_(ツ)_/¯

Whatever the reason, I’m glad you’re here and I want you to know a few
things before you dive in. Like why I have decided to write a book on
endometriosis. Well, you could say that experiencing the blows of this
chronic illness firsthand has sparked a real fire in my belly. I mean, she was
already inflamed but I just don’t want others to deal with what I had to. The
physical damage, the emotional distress, the constant dismissal. Not to
mention all the things I was never told or warned about when it came to
navigating life with an incurable disease with no known cause. My journey
of personal research and self-advocacy has been long and confusing. I
mean, where do you even start? How do you endo?
In a perfect world, this book wouldn’t even need to exist because there
would be sufficient awareness, research and funding surrounding
endometriosis. You’d be taken seriously by doctors and have access to the
right treatments. Your loved ones would understand and your relationships
would continue to blossom. You would feel supported in your professional
life and personal ambitions, whatever they may be.
Alas, this perfect world is not yet ready for us so, in the meantime, let
this book be a way to comfort you through the shitty times and to reassure
you that what you are feeling is very real. Let it educate you on the things
that so many of us were never taught. Hopefully, it saves you some coin as
well, because managing endo ain’t always cheap.
But I hope some of my personal advice, as well as the expertise of others,
will help you make informed choices that are friendly to your body and
your wallet. I’m certainly no medical professional and while I don’t have all
the answers, I hope this book is enough to get you going on the right path.
Think of this book as a set of training wheels while you learn to ride a bike.
We might be a bit wobbly sometimes but ideally by the end, you’ll be ready
to pedal off into the sunset on your own. Just remember which side the front
brake is on so you’re not sent flying over the handlebars, okay?
Nobody likes a spoiler, but it is important that you know that there is no
single way to live with this disease. There is no standard fit to surviving and
thriving with endo because, just like adulting, we are still figuring it out.
Plus, everybody’s end goal is different, but that doesn’t mean you are alone
in this journey. Let this book be a way of us doing it together.
So, you ready?
Let’s get into it!
 My story

‘OMG, I think this is my period?!’

Ahhh, your first time. Hard to forget, isn’t it? Mine was during the first
week of Year 7 which made for a timely welcome to high school. I
remember power walking (read: smugly strutting) to the toilets with a liner
hidden in my dress pocket, giggling as my new friends followed in
excitement. I was one of the first in my friendship group to receive a visit
from Aunty Flow. I mean, it wasn’t a competition, but this new experience
made me feel pretty cool (or kewl, cos 2003). Plus, Mum had said she
would buy me a new teddy bear when I got it and as an eleven-year-old
going on twelve, I still very much loved my plush toys. I didn’t think too
much into why Mum felt like I needed a new bear, or ‘period bear’ as she
emphasised. I was just pumped to add a new one to the collection sitting
cosily on my bed.
The first few cycles were fine, just some light bleeding that only required
liners. But soon enough, I came to understand the purpose of Poppy the
Pink Period Bear. You see, instead of a gradual increase in flow, duration
and general discomfort, my period decided to go from zero to 100. Like, it
was a real nek-minute situation. Those first period giggles were quickly
replaced with groans, while that smug strut to the toilet became more of a
walk of shame. I was popping more painkillers than any normal
menstruating teen should require and awkwardly asking Mum to buy me
overnight pads because ‘regular’ just didn’t cut it. I found myself wearing
multiple pairs of undies to prevent leaking and the only way to wear my
school jumper during shark week was tied around my waist. Even if the
weather suggested otherwise, I was willing to risk the cold for no red
marks. Come summertime, the most commonly asked question you’d get
from me was never regarding curriculum. It was instead to my friends as we
got up at the end of each class: ‘Can you check the back of my dress?’
Poppy was a much-needed comfort because my period was just as
inconvenient at home. I avoided using the nice, fluffy towels after a shower
in case I ruined them with stains. I would sleep on an old towel to prevent
the blood from leaking on to my sheets. I even remember blood literally
pouring out of my vagina and straight on to the carpet one morning in my
bedroom, as I’d been too slow in changing my underwear and pad. By the
way, there is no such thing as too much information in this book. The
sooner we normalise period conversations, the better, because I know I’m
not the only one who has dealt with this! Anyway, I was horrified by what
had happened and scared that I would get in trouble for the stain. I can still
hear the concern in my mum’s voice: ‘You always have bad periods.’ Up
until this point, I thought that maybe everybody dealt with such bullshit
cycles and they were just better at hiding it. But my two sisters never had
periods like mine, and Mum’s concern was enough to suggest that we
should do something.
I first saw a doctor about my period in Year 10, so I would have been
fifteen at the time. Endometriosis was not in my vocabulary and I guess it
wasn’t in the doctor’s either. I was prescribed Levlen, a contraceptive pill,
and sent on my way. To say I hated taking the Pill would be an
understatement. I know birth control works differently for everyone but, for
me, the pill triggered weight gain and I still experienced the physical
symptoms of my period. It would start with a pulsing headache, which I
learned to recognise as my body’s way of saying, ‘Heads up, Aunty Flow’s
coming to visit and she isn’t happy.’ And the cramps, UGH the cramps! I
flinch whenever I think of those dull, nauseating throbs that felt like my
ovaries were in a punch-on before they were doused in petrol and set on
fire.
Then came sex. I lost my virginity to my first serious boyfriend when I
was eighteen. I expected it to hurt because, you know, I was new to the
whole thing, but the pain just didn’t feel right. It felt like it was more than
just typical cherry-poppin’ pain and it continued for a long time.
Throughout our relationship, it was common for us to have to stop mid-sex
because the sharp, burning sensation would just take over. I would then
crawl into the foetal position and wonder, What is wrong with me? I
remember it being so bad one night that I just got up and drove back home
because the best way to suffer was in the comfort of my own bed. My first
boyfriend never made me feel like it was my fault, but I knew that he knew
it wasn’t normal. After our relationship ended, my sexual encounters were
rare and usually involved alcohol. Looking back on it now, I feel like the
alcohol was a way of masking how my body was really feeling.
Three years out of high school and the pain extended to my abdominal
area. I was two weeks into my Visual Merchandising diploma in
Melbourne, when I suddenly experienced a sharp, stabbing sensation along
my belly one afternoon during class. It was such an unfamiliar feeling and,
at the time, I thought it was the result of something I’d eaten. I sat there,
squirming in my seat and gripping the edge of the table until I could take no
more and stumbled out of the classroom, hunched over. I was taken to the
ER in an ambulance, asked if I was pregnant and received strong pain relief
until I felt better. Nurses and doctors didn’t do tests or scans, and I didn’t
know what to ask for. Endometriosis still didn’t exist to me, let alone the
knowledge that this was a likely symptom.
For the following four years, this pain would strike at any given moment.
Like during a retail shift when I was running the store by myself and had to
wait nearly two hours for my regional manager to come and take over. Or at
dinner in Korčula in Croatia with my friends, where I had no choice but to
get up and run back to my cabin before the food arrived. I still mourn that
Margherita pizza, RIP. Even on one of my first dates with my current
partner, he genuinely wasn’t sure if I was in pain or just making it up to get
out of the date—we’d paid, like, $40 to ice skate and I hate wasting money
so rest assured, Jenno, I wasn’t faking it!
In 2015, I was referred for an endoscopy. The only conclusion my doctor
made from that procedure was the potential risk of high acid levels in my
stomach—but nothing definitive. While this random abdominal pain was
plotting its next attack on my body, things were Absolutely Not Improving
on the period front. I could sense its impending arrival in the form of
extreme cravings for chocolate, followed by a throbbing, nauseating pain
and then a nice blood clot or two sitting in my undies, as if to say, ‘I’m
baaack and bearing gifts!’ My cycle got shorter and shorter; my period
returned every three weeks, sometimes fortnightly. The pain on the first day
would knock me so hard I would often have to call in sick to work. I felt
heavy, sluggish, pretty darn useless and had no choice but to start
scheduling my life around my period.
 Throughout this time, I sought advice from numerous GPs. Only one
took my case seriously enough to provide a referral for a gynaecologist but
I was earning peanuts as a travel agent and simply could not afford the
consultation fee. It was literally a choice of either paying for groceries that
week or having the appointment, so you can guess which one I went with. I
think this GP may have been the first professional to mention the word
endometriosis, but it was mainly through my friend Hayleigh that I grasped
a rough idea of what this condition entailed. We worked in retail together
before I become a travel agent, and I remember her having to take days off
before receiving her diagnosis. But we never got too deep into the
discussion and I can’t help but think it was due to us feeling silenced by the
menstrual taboo.
In 2017, I was back living at home with my parents in Ballarat and had
some money saved, so I decided to see a local female GP who was
recommended to me based on her specialisation in women’s health.
Alongside a gynaecologist referral, I also needed a pap smear and
something for a cold I had, so I made sure to call up in advance and book a
longer appointment. I was beyond excited at the thought of seeing someone
who would finally understand my pain, but it turned out to be my most
disappointing encounter with a medical professional. Ever. From the
moment I entered the room, this GP didn’t want a bar of me. I’m not sure if
she was having a bad day but the whole time, she was beyond disinterested.
Closed body language, no eye contact. It looked like it took every last
ounce of strength for her not to eyeroll. And then she said it. ‘You don’t
have endometriosis. Others have it worse than you.’
Talk about a shutdown! You know that scene from The Simpsons where
Lisa tells Ralph she never liked him and Bart replays it to her? ‘You can
actually pinpoint the second when his heart rips in half!’ It kinda felt like
that.
I didn’t know the diagnostic process for endo but this felt Very Off, so I
persisted for a gynae referral. ‘I’ll give you one, but I don’t think you need
it,’ she sighed as she handed me the letter. As for the cold, I got an
antibiotics prescription. The pap smear? ‘We can do it next time.’ Umm?
What about my extended appointment? But, honestly, I was so shook by
this entire consult that I just walked out, returned to my car and sat
wondering what the fuck just happened. I didn’t follow through with the
gynaecologist, again, but it wasn’t about money this time around. I actually
feared that the GP was going to call up the gynaecologist and warn them
about me or something.
After moving to Sydney for my dream job in 2018 and securing a good,
stable income, I thought it was the perfect chance to have another crack. I
needed to get on top of my pain, find a decent GP and follow through with
it. A few google searches of ‘women’s health doctor’ led me to a doctor
who I found to be so warm, attentive and compassionate as I railed off my
history of pain and symptoms. She had no doubt that it was endometriosis
and not only referred me to a gynaecologist but also for an ultrasound
straight away. Next thing I knew, I was chugging a litre of water in
preparation for this examination, which my sensitive bladder absolutely
despised. I had no idea what to expect and since it was my first scan of this
kind, I was both curious and nervous. What if it hurt? What if they didn’t
find anything? What if I peed myself before we even began? Thankfully, the
sonographer made the process as comfortable as it could be and while the
scan picked up a few cysts on my ovaries, no endometriosis could be
detected. I was assured that this was not the be-all and end-all, so I tried not
to feel deflated by these findings.
My first appointment with the gynaecologist went well. He was friendly,
attentive and after performing an internal examination, he was pretty
confident that all signs pointed to endometriosis, despite the ultrasound not
picking up any clear indication of the disease. We agreed to do a diagnostic
laparoscopy, which basically meant keyhole surgery through my abdomen.
But because I didn’t have private health insurance, I wasn’t going to have
this gynaecologist operate on me. Instead, he would be supervising students
in training. I wasn’t fussed, I was happy to be the guinea pig if it meant no
exorbitant out-of-pocket costs. The waitlist for surgery was five months but
work was busy, so I didn’t have a problem with an August date. Even
though it meant enduring five more painful periods and taking various sick
days, I was very chill about it all. Had I known the extent of my
endometriosis however, I probably would have gone about things
differently.
The night before surgery, Jenno arrived from Melbourne. We were
navigating a long-distance relationship and, luckily, he’d scored some time
off work to fly up to Sydney and look after me for five days. It felt so
comforting to have a familiar face there with me but the nerves were hard to
shake. I remember crying as we got ready for bed. What if it’s really bad?
What if they don’t find anything?
To be honest, I was more terrified of the latter and my pain remaining a
mystery. All I wanted was answers and the next day, I got them. Stage four
endometriosis. Both superficial and deep infiltrating lesions were found and
excised from my bladder, pelvic side walls, distal rectum and pouch of
Douglas, which is the small area between the uterus and rectum. I’d also
agreed to have an IUD inserted during the procedure as I’d been told it
could help manage my pain and ‘reduce the likelihood of my endo growing
back’. Given my experience with the contraceptive pill, I was really hesitant
to try another form of hormonal treatment, but I figured I wouldn’t know
unless I tried. The surgery took twice as long as expected and due to the
extent of my endo, I had to stay overnight.
Waking from anaesthesia has always been hit-and-miss with me. Having
gone under eight times before this surgery (for different procedures—knees,
ears … my body, she is a hot mess!), I have found that my mindset can
really affect how I respond to the drug. I remember when I got my tonsils
out, I sat up in the recovery ward as soon as I came to and started laughing
hysterically because I thought everyone was clapping for me like I was a
hero, returning victorious from the war that was tonsillitis and glandular
fever. Whereas for my left knee lateral release, I was another kind of
hysteric in the form of uncontrollable sobbing. Luckily, I was pretty chill
waking from this laparoscopy and based on my first question to the nurse,
my procedure was not even front of mind. ‘Can we watch the Honey
Badger?’ It was a really good season of The Bachelor, okay?
My diagnosis was bittersweet. I was absolutely stoked to hear that there
was a reason behind my pain—it felt so validating to know it wasn’t all in
my head or that I was weak. Sure, it sucked that there was no cure, but I
didn’t ponder that much as I was distracted by all the lovely messages I was
receiving. My colleagues at triple j documented my experience for our
flagship youth affairs program, Hack. Given that triple j is our national
youth broadcaster and reaches millions of people, having my story shared
on air and across their social media platforms really blew up my inbox. I
received hundreds and hundreds of messages from our listeners—who were
all reaching out for various reasons. Some had already been diagnosed,
some were seeking answers and others had someone in their life going
through the same thing. Hearing how my experience helped other people
learn about endo or have those important conversations with their loved
ones brought me so much comfort in my recovery. Even through the aching
of my abdomen and the intense shoulder tip pressure from the gas used to
allow better viewing of my organs, I was feeling confident that I could
bounce back from this. I even emailed the GP from Ballarat to share my
diagnosis and the links to the online coverage surrounding it. I wasn’t
expecting a response, nor did I receive one, but it felt good.
Then, reality kicked in. Jenno was due to return home so I would no
longer have his warm, comforting hand as he helped me walk, eat,
medicate, shower and pee (he really saw it all). I don’t know how I could
have done those first few days without him and was devastated when he
left. I was still struggling with my new life in Sydney and the thought of
having to combat the rest of my recovery alone was terrifying. The process
was harder and slower than I anticipated, and it really took all my strength.
It took twice as long to get ready for work and I would sit with a heat pack
right until I had to leave. The train station was too far away for me to walk
to in my sore state, as was the bus stop, so for six weeks I took a rideshare
to work. In the evening, I would return home absolutely exhausted and with
the dread of having to do it all again the next day. I often found myself
softly sobbing in my room, completely overwhelmed and alone in my
thoughts. I was living in a four-bedroom share house with people I rarely
saw due to our differing work schedules, and while I know they would have
helped if I had asked, I always insisted I was fine. In my stubbornness to be
independent and my fear of losing control, I would also downplay my pain
to my colleagues and friends. It felt more convenient than trying to explain
what my recovery really entailed and, looking back now, this turned out to
be a pretty toxic way of internalising my suffering, because I saw it as my
body and therefore my problem.
I thought that once the endo was removed, the pain would disappear. My
gynaecologist said that the IUD could take up to six months for my body to
adjust to and, naturally, I trusted him.
But my body wasn’t the same. I bled for weeks following surgery, which
I think was due to a combination of recovery and my period deciding to rear
its ugly head. Instead of being able to exercise after six weeks as I was told,
it took five months to do it pain-free. Five. Months. One of the harshest
realisations I had of the long road ahead was ten days following the surgery,
when I attempted a slow, solo walk to a local BONDS outlet, a one-
kilometre stroll from home. I was determined to stock up on some
comfortable trackies and even more determined to make the distance on
foot. Each small step was met with discomfort, but it wasn’t until the final
100 metres that an overwhelming sensation washed painfully across my
pelvic area like a crashing wave, making me really light-headed. I could
feel my vision fading as the giant cramp within my cervix intensified, like
my IUD was banging the walls, trying to escape. I crouched down on the
pavement and tried to call one of my housemates in the hope that she could
pick me up, but she didn’t answer. I eventually mustered the strength to
hobble the last hundred metres—did I mention I’m pretty stubborn? I mean,
I could see the store ahead. I was so close! Nothing was going to come
between me and these trackies, but you bet I ordered a rideshare home. I
remember sinking into the back seat with my purchase, completely
exhausted and astounded at how an innocent walk to the shop could turn
into such a gruelling ordeal, with the driver completely unaware as we
made the one-kilometre trip home.
Sex was still painful and I began to experience random flare-ups that felt
like a sharp, burning pressure, unlike anything I had dealt with before. It
would strike at any given time—on a plane, in the car, riding a bike, lying
in bed, you name it. I felt stalked by my own body (or my own pain) and, as
a result, I developed a lot of anxiety. I was scared to socialise or be
anywhere without my heat pack. It felt safer to isolate and while I remained
chirpy on air during my radio show, I was turning into a shell outside of
work.
I couldn’t adjust to life in Sydney so at the end of 2018, I returned to
Melbourne and was lucky enough to bring my job back with me. Jenno and
I found an apartment to rent together and everything started to feel like it
was falling into place. The random flare-ups still struck at their own
convenience, but being home was a huge boost to my mental state and I was
ready to take on 2019.
At 2 a.m. on the morning of my first day back at work, I suddenly woke
in the most excruciating pain. It was a sharp sensation completely
overwhelming the lower area of my abdomen. It might sound odd but there
are definitely different types of sharp pain and this one was completely
foreign to me. I immediately knew that I needed to go to hospital, but I
couldn’t move. I shrieked in agony, shocking Jenno awake. With one arm
over his shoulder, I limped to the car and we drove straight to emergency. I
tried to stay calm as I angled my body awkwardly in the passenger seat, but,
man, I don’t think I have ever dropped so many f-bombs as during that
twenty-minute drive.
The pain intensified as we arrived at the emergency room and I was
sobbing as I tried to explain what I was feeling while reciting my name and
address to the triage nurse. They took me in straight away as they suspected
I was pregnant. I definitely wasn’t. I was worried they would think I was
there just for drugs as I had heard some ER horror stories from other people
with endo, but the nurses believed my suffering and kept me in for thirteen
hours. I was wheeled to the ultrasound room at 9 a.m., and they confirmed
that a haemorrhagic cyst had burst. Haemorr-who? Turns out they’re some
blood-filled baddies, and a 0/10 experience that I would not recommend. I
was also told that my left ovary was immobile. I wasn’t entirely sure what
that meant but an ovary that was seemingly stuck didn’t sound good. I was
sent home with a script for Endone and told to come back for a follow-up
appointment in eight weeks to see if any more cysts had decided to show up
uninvited, like a nosy neighbour. No treatment plan, just a ‘see how you
go’.

Eight months after my diagnosis, I continued to receive DMs and questions

from my followers about my endometriosis. I had no idea just how common
this condition was, nor how interested people continued to be in my
experience. Because of this, I decided to launch a separate Instagram page
dedicated to sharing information and raising awareness. Fittingly named
endogram (full credit to Mum), this account led me to undertake a great
deal of research and, holy guacamole, I was actually shocked at how little I
knew! I didn’t realise the extent of this disease at all and what it meant for
my life. I didn’t even know the importance of excising endo rather than
ablating it—which you’ll learn all about in Chapter 3. I got lucky with my
diagnostic laparoscopy using the preferred removal technique, but I was
still experiencing these new flare-ups and I knew that I needed to seek a
second opinion.
Because I had returned to Melbourne, I needed to find a new specialist
and after consulting a few different local support groups, I found my guy. I
put together a manila folder with my full endometriosis history—every
scan, my operation notes and photos, my ER admission notes—everything.
He examined the photographs from my first laparoscopy and said while
they did a good job of excising the disease, he suspected not all of it was
correctly removed. This, alongside my recent ultrasounds detecting an
immobile left ovary, was enough for him to recommend another surgery.
Noooooooo!
Part of me expected this response but I couldn’t help bursting into tears. I
was only just starting to feel semi-normal again so the thought of going
through another surgery was so draining. I did not feel ready. However,
because I had only just taken out private health insurance, I needed to wait
ten more months for the waiting period to end, so we booked in for June
2020.
The time leading up to my second surgery was extremely weird. COVID-
19 had made its way into Victoria and we were in lockdown. Businesses
closed, working from home was the new normal for those who could do so
and hospitals had no choice but to reduce their theatre capacity. Instead of
operating four days a week, my specialist was only operating every
Wednesday. A wall of anxiety tumbled over me—what if my surgery gets
delayed? How long will I have to wait? What if there is endometriosis that
is worsening? What if it’s too late for my immobile left ovary? It also didn’t
help that my period decided to show up for three consecutive months and
the flare-ups became more frequent. Luckily, my procedure not only went
ahead but it was six days earlier than planned, thanks to my private health
insurance waiving the three days left on my waiting period.
On 10 June 2020, I had my second excision surgery through the private
health system and my specialist’s suspicions were confirmed. Severe
endometriosis was on my pouch of Douglas and pelvic side walls—not a
recurrence, but leftover disease from the first surgery. I also opted, after
much consideration, for my IUD to be taken out. The entire procedure took
two hours and I stayed two nights in hospital with a drainage tube to
remove any extra fluids in my body and a catheter to let my bladder rest. I
was super sore and found the removal of the drainage tube to be one of the
grossest feelings ever but, despite all this, I had a really good experience. I
was lucky to have my own room that had a beautiful view of some of
Melbourne’s skyline and golden hour was sahhh glorious. All of my nurses
were fantastic and my specialist was incredibly diligent. He visited me the
night of my surgery with operation notes and photographs but, naturally, I
was off my rocker, so I don’t remember too much. The next morning, I
asked about my IUD, as I was curious to know what state it was in before
its removal.
He responded, ‘It was sideways.’
Cooooooool, love that for me!

Recovery this time around was different from my first procedure in many
ways. In some respects, it felt better—I didn’t have any shoulder tip pain
like I’d had previously from the gas used in surgery! On the other hand, I
ended up sleeping on our little two-seater couch for the first week because
our mattress felt too hard on my tender body. I also needed double the time
off work (four weeks as opposed to two) and experienced a mild nerve
injury called neuropraxia which felt like some sort of electrical shot
throughout my upper thigh, but which thankfully passed. My first two
periods after surgery were pretty horrendous, but I am yet to experience a
random flare-up, which I can’t help but link to having the IUD removed.
It’s been a long journey and it’s still ongoing because chronic illness,
bby. You’ll hear more bits from my experience throughout the book but
TL;DR:

too many years dealing with unexplained pain

too much incorrect info from doctors
two surgeries
I’m a boss.

For real though, my endometriosis has taught me so many things. It has

taught me to listen to my body because I’m the only true expert of it and I
deserve the best care. It has reminded me of my strength and it has helped
me find my voice. Which sounds weird given how often people hear me on
the radio, but you know what I mean. Ultimately, it’s exposed a real drive to
share my learnings, my mistakes, everything with other people—those who
have been through it, those who are about to but don’t know where to start,
and anyone who is looking after them.
 1

Endo 101

Endome … *muffled mumbling*

Close …
Endo … metri … huh?
Getting closer …
Endocalifragilisticexpialidocious?
Okay chill, Mary Poppins. Let’s start again.

En-doh-me-tree-oh-sis
So, you’ve just read about my experience with this painful thing that has a
weird name and you’re probably wondering, What the heck is going on
down there? Well, it’s complicated but consider this a crash course on the
disease that’s hard to say, see and solve. Welcome to Endo 101!
 Endometriosis, or endo for short, is a chronic inflammatory condition in
which cells that are similar to the lining of the uterus (endometrium) grow
outside of this layer and result in Pain with a capital P, inflammation, organ
dysfunction and, in some cases, infertility. I put an emphasis on the term
‘similar’ because there are a lot of incorrect definitions that refer to endo as
the endometrium, despite histological and genetic variations. If we want
more awareness for this condition, we gotta make sure everyone is across
the right description—so, say it with me, endometriosis is not the
endometrium! The difference between the cells that form in the uterine
lining and these cells that are found outside the uterus is that the innies have
an exit point each month—our period. But the outies have nowhere to go!
They just stay there, thickening with each month that passes and can lead to
the formation of adhesions and endometriomas, aka ‘chocolate cysts’. Not
sure what they are?
Adhesions are bands of scar tissue that can bind organs together and
create a different kind of pain that some consider to be a sharp or tugging
sensation.
Endometriomas are fluid-filled sacs/pockets in an ovary or on its
surface and are often called ‘chocolate cysts’ which sounds kinda yum but
it’s not really because the fluid is old (dark) blood.
 While the most common place for endometriosis to occur is within the
pelvic cavity and on reproductive organs, it is still regarded as a whole-
body disease because it can be found in other places too. Endometriosis can
be classified as:

Endopelvic—lesser/minor pelvis, ovaries, fallopian tubes, recto-

uterine pouch and ligaments posterior of the uterus
Extrapelvic—pretty much all disease found outside the reproductive
organs. We’re talking abdominal wall, scars of the perineum
(between the anus and vulva), the urinary and gastrointestinal tract,
the thorax, brain and even the lining of the nasal cavity (nasal
mucosa if you want to get fancy)
Thoracic—chest cavity, diaphragm, lungs
Sciatic—sciatic nerve, which branches from your lower back through
your hips and butt and down each leg.

So, what does endometriosis look like? A common assumption is that the
disease is purely of a dark appearance, but the lesions can come in all sorts
of colours such as white, red, yellow, brown and even clear. They can be
thick and they can also be as fine as strand of hair but unfortunately, not all
gynaecologists and specialists have the skills to correctly identify all forms
of endometriosis.
 Whether it’s superficial or deep infiltrating, endo is BRUTAL. In 2019,
the National Health Service (UK) listed endometriosis as one of the top
twenty most painful health conditions—endo pain can be so disabling it can
inhibit daily tasks. Endo was named alongside the likes of fibromyalgia,
heart attacks and broken bones. It can be so damaging that some people
may require an ileostomy bag (an external pouching system that collects
intestinal waste), a walking aid or a wheelchair. If that doesn’t give you an
idea as to how hectic this condition can be, here’s some ways in which my
endogram followers have described their pain.

‘Like two knives stabbing into my uterus.’

‘A cheese grater in my uterus.’
‘Like my ovaries and fallopian tubes are being twisted and pricked with
needles.’
‘Red hot coal burning inside my guts.’
‘A chainsaw across your uterus and lower back.’
‘Sitting on a knife with pain shooting up through my bowel and to my
belly button.’
‘Burning, like someone is holding a lighter to my insides.’
‘Like a bowling ball being dropped on to my pelvis.’
‘It’s as if I’m birthing barbed wire.’
‘Feels like my organs are being twisted and squeezed.’
 In her 2019 book Pain and Prejudice, Australian journalist Gabrielle
Jackson reflects on the pain she’s endured over the years, ranging from a
broken back to being hit by a train in India. Yep, HIT BY A TRAIN. She
says:

But this pain—this pain after the laparoscopy and the pain of
endometriosis—is nothing like that. This ache, this always
present gnawing, is the pain that makes me feel bad. No
painkiller puts me in a happy mood with this pain. No bliss
overcomes me. No drug can stop the nausea once it arrives. Only
stillness helps. But stillness is so hard. I’ve felt ten, and I can tell
you, this pain is worse.

But wait, there’s more! Another super fun fact about endo is that there is
no prevention, no cure and no determined cause. There are a few theories
floating around but none can fully explain why endometriosis occurs and,
due to the lack of evidence, I’m not going to include them in this book—I
don’t think it helps. According to the Center for Endometriosis Care, it is
likely that a number of factors including genetic/epigenetic predispositions
play significant roles in determining which, when and whether an individual
will develop this condition. The main thing to know is that it is NOT your
fault. You don’t have endometriosis because you did or didn’t do
something.
Endometriosis affects one in ten people assigned female at birth and in a
national study of 13,508 Australian cisgender women, one in nine were
diagnosed with endometriosis by age 44. There are more than
approximately 800,000 endo warriors in Australia, around 1.5 million in the
UK, and worldwide, the estimation is at least 176 million. Experts call
endometriosis the ‘silent epidemic’. However, it’s not just a women’s health
issue. Endo can affect teens as well as transgender and non-binary people
and, in rare cases, cisgender men.
You’ll notice that I refer to endo sufferers as people with endometriosis.
Unfortunately, due to the lack of awareness and research on this condition,
it is difficult to speak authoritatively on behalf of transgender and non-
binary sufferers who have been excluded from research studies. Any data in
this book is based on cisgender women (unless stated otherwise) but I hope
that, moving forward, research will be more inclusive and representative.
We have a long way to go in terms of how we can help gender-diverse
people navigate their health and I will be reflecting on that later in the book.

What are the symptoms?

Well … there are a cheeky few.
A common misconception is that endometriosis is just bad periods, but it
is so much more than that. In fact, one of the biggest complexities of this
condition is the varying range of symptoms and how individualised they
are. Everyone experiences endo differently and my pain may not match
yours or vice versa. There are even people out there who don’t experience
any symptoms of endo! Alongside heavy/ irregular bleeding and pain
connected to ovulation, the abdomen, back and pelvis, some common
symptoms include:
Pain when emptying the bladder
This is one of my biggest symptoms—it turns out that endo implants on the
bladder can cause inflammation and muscle tension, resulting in painful
pees. And do you ever feel like you have twenty litres of urine ready to go,
but it ends up only being a few drops? That’s the story of my life, and it’s
due to hypersensitivity of the nerves.
Pain during or after sex
When there’s thrusting or penetration during intercourse, the endometrial
implants in the pelvic cavity can stretch, pull or push. And it bloody hurts,
fam! It is not pleasant. It also doesn’t help that our bodies respond to this
pain by clenching up which in turn promotes more pain. The number of
nerves multiply, it’s all too sensitive and what should feel good, doesn’t.
We’ll touch on this in more detail later in the book.
Fatigue
As noted by the Endometriosis Foundation of America, the main cause of
endometriosis-related fatigue is the body’s effort to eliminate the diseased
tissue. While the immune system attempts to combat endo, cytokines (aka
inflammatory toxins) are secreted by the tissue. What we feel to be fatigue
is the result of these internal chemicals. A particularly shitty thing about
endo fatigue is that it tends to go unnoticed as a symptom. There’s
definitely stigma and an assumption that it’s not legitimate because it’s
technically not pain—but fatigue is not just being tired, either. We are
talking about a constant lack of energy due to the internal battles our bodies
are fighting and something that not even a good night’s rest can solve.
Pain during bowel movements
Speaking of shitty! Did you know that endometriosis has a direct
relationship with our gastrointestinal tract? Also referred to as our gut, the
GI functions as the centre of our body’s digestive system. It’s where our
large intestine, colon, small intestine, small bowel and rectum sit together.
Endo implants on or near the GI tract can not only trigger muscle tension
and painful bowel movements but also diarrhoea, constipation, nausea and
…
Abdominal bloating
Aka endo belly. Endo causes scar tissue that can bind up the abdominal
organs and slow down the intestines. On top of this, endometriosis lesions
can flare up at different times throughout the menstrual cycle, causing an
immune response which creates swelling. For some people, this swelling
can be so intense that they look pregnant which is a pretty cruel irony …

Infertility
We will explore this later in the book but, in short, studies show that there
are two ways in which endo may affect fertility. One being its inflammatory
power preventing a suitable environment for egg fertilisation. The other
suggests a more structural issue in that our anatomy can be distorted
through scar tissue and adhesions, potentially causing the blockage of
fallopian tubes.

What’s with the stages of endometriosis?

Endo has been classified into four stages by the American Society of
Reproductive Medicine to measure the physical presence of the disease. It
is super important to highlight, however, that these stages of endometriosis
have been determined based on the impact on fertility and spread of lesions;
they do not reflect the level of pain or presence of symptoms. For example,
I was diagnosed with stage four which means I had A LOT of endo spread
across various spots, but I’ve never passed out from my pain, nor has it
prevented me from holding down a full-time job. However, I know people
who often black out from their flare-ups and cannot commit to full-time
work due to their debilitating pain, and they’re a stage two or three. The
American Society for Reproductive Medicine also use a weighted point
system but as someone who dropped maths in Year 10, I am completely
thrown off whenever I see numbers. I find this stage-by-stage breakdown
easier to follow.
 Stage one—minimal with few superficial implants
Stage two—mild with more frequent and deeper implants
Stage three—moderate with many deep implants, as well as small
cysts on one or both ovaries and the presence of filmy adhesions
Stage four—severe with many deep implants, as well as large cysts
on one or both ovaries and many dense adhesions.

The stages are good to refer to when you receive your diagnosis but,
again, they absolutely do not factor in or reflect the pain and/or symptoms
that you endure. I personally disagree with measuring your endo experience
according to this framework as it can invalidate those in the earlier stages.
We need a staging system that factors in the severity of symptoms and the
impact endo can have on your life.

So, what’s being done about endometriosis?

Endometriosis is as common as asthma and diabetes yet it falls so far
behind in terms of awareness, research and funding. In 2016, the Australian
National Health and Medical Research Council (NHMRC) allocated $14.7
million to asthma research, $64.1 million to diabetes research and $837,433
to endometriosis research. Why such a difference? Well, here’s what I’m
seeing. I’m seeing two conditions that are known to affect ‘everyone’, and
another that is regarded as just a cisgender women’s health issue. This isn’t
an isolated issue. From heart disease to chronic pain, research has always
been based on the anatomy of a cisgender man. Since literally forever,
women’s pain has been downplayed in the world of medicine and
healthcare. Just google ‘hysteria’ and you’ll see what I mean. Even in terms
of research, it was as recently as 2013 that a case study was published
where the research question was to consider physical attractiveness in
women with and without endometriosis. Physical attractiveness. You
couldn’t possibly find something more distasteful, tone-deaf and irrelevant.
At the 2019 RANZCOG (Royal Australian and New Zealand College of
Obstetricians and Gynaecologists) Annual Scientific Meeting, Professor
Peter Rogers (University of Melbourne, Royal Women’s Hospital)
advocated for a change in priorities to aid endometriosis research. ‘We are
way behind in terms of clinical trials and the capacity and resources to do
them,’ he claimed.
Despite that, there has been promising progress for recognition of
endometriosis. In 2016, a groundbreaking documentary called Endo What?
was released to high acclaim from all over the world. The following year,
Irish author Sally Rooney published her debut novel Conversations With
Friends, with her fictional female protagonist suffering from endo. The
National Action Plan for Endometriosis, rolled out by the Australian
Government Department of Health in 2018, was designed to improve public
awareness of endometriosis, patients’ understanding of the condition,
treatment options and research programs into endometriosis and chronic
pelvic pain. We’ve seen public figures like Lena Dunham, Halsey and
Emma Watkins (Emma Wiggle) step up to share their own endo journeys
along with millions of people using social media as a tool for conversation
and advocacy. Patients have taken it upon themselves to lead for change
and, to be frank, it is bloody inspiring.
Think of endometriosis as a big and often frustrating puzzle. There’s
never a clear starting point and piecing it together takes a lot of time and
patience. Sometimes you will definitely want to just flip the whole thing
and walk away. The puzzle isn’t complete and sometimes I wonder if it ever
will be—yet we persist, uncovering its connections and patterns along the
way.

Endo myths—BUSTED!
Look, there’s a lot of BS floating around regarding endometriosis. Lots of
theories, lots of misinterpretation and a whole lotta myths. So, let’s set the
record straight on a few things.
Hysterectomy does NOT cure endo
Endometriosis is tissue similar to the lining of the uterus, that grows outside
of the uterus. Therefore, removing the uterus will not remove the endo. It
may relieve some symptoms, but it won’t cure endo. Why? Because there is
no cure for endo!
Pregnancy does NOT cure endo
Some people with endometriosis may experience temporary suppression of
their symptoms while pregnant but, again, there is no cure for endo! Also,
it’s pretty cooked to suggest this to someone with endo given that infertility
is a particularly devastating symptom for a number of people, so can we
stop doing that?

Teenagers CAN get endo

Prior to the introduction of laparoscopy in the 1970s, endometriosis could
only be diagnosed during a laparotomy, which is a major surgical procedure
resulting in some decent-sized scars. We’re talking a ten to fifteen
centimetre incision into the abdomen, so pretty gnarly stuff. Because of the
risks and costs associated with a laparotomy, this procedure was only really
performed as a last resort for those with super severe symptoms, who were
past child-bearing age. So, obviously, not teens. Nobody is too young to
have this condition and it’s often throughout adolescence that our symptoms
develop—even though many of us won’t receive a diagnosis until we’re in
our twenties or thirties. Endometriosis has even been found in unborn
foetuses!
Menopause does NOT stop endo
As you probably know, menopause is when you stop menstruating. The
body’s production of estrogen and progesterone slows down and your
hormone levels fall to a point where your ovaries stop releasing eggs.
However, there is no guarantee that menopause will stop your endo because
the lesions create their own localised estrogen.

Birth control does NOT stop endo

Birth control can treat the symptoms of endo, but there’s no evidence to
suggest it can treat or stop the growth of the actual disease itself. I know
birth control has relieved pain for some people, which is awesome and each
to their own, but it’s important to remember that it is there serving as a
bandaid.

Endometriosis is NOT a menstrual disease

One of the proposed theories surrounding endometriosis is this thing called
retrograde menstruation, which is when blood flows backwards into the
pelvis instead of out of the vagina during menstruation. However, the
problem with this theory is that regardless of whether you menstruate or
not, endo’s gonna endo. It does not grow in accordance to menstrual cycles
and, as mentioned previously, endo has been found in people who do not
have uteruses; therefore, it cannot be regarded as a menstrual disease or a
disease of the uterus. Why? Because …
Endometriosis is NOT the endometrium
Therefore, it doesn’t always correspond to the usual hormonal changes that
induce menstruation. Honestly, I feel bad for all the hate and resentment
directed towards the uterus. Endo is in a different lane and the uterus is not
to blame!
 2

Diagnosis

Endometriosis is a tricky name to pronounce but it’s even harder to

diagnose. How hard? According to new research from Endometriosis
Australia, it takes an average of six and a half years. I always thought it
took me six years but if we actually base it on the first time that I
approached a doctor with period concerns, which was in 2006, it would be
double that. Twelve years! It can be a little sad to look at my life in that
time frame. Don’t get me wrong, my life has been very good. I’ve travelled,
fallen in love and, all in all, I am really proud of what I have achieved. Yet,
I can’t help but think how many times over these past twelve years I have
felt extremely limited by this condition. How many times I’ve curled up in
agony, how many painkillers I’ve taken or how many hours I have spent
staring aimlessly into the microwave as my heat pack warms up on a
Saturday night while everyone else is out. I’ve pushed these thoughts to the
back of my mind but when they do seep through, it’s a little melancholic,
imagining how much better my quality of life could have been if my
diagnosis was made earlier.
So, why the heck does it take so long to diagnose endo?! It’s a big, valid
and frustrating question that has several answers beyond the obvious lack of
recognition, education and awareness for the disease.

Society has normalised pain, but not periods

Does that heading make you want to scream into a pillow? Because same.
As we have learned, endometriosis isn’t just a bad period but that is usually
the first red flag. A big problem here is that there is no frame of reference
for menstruators to compare our pain to—we’ve always been told it’s just
how they are and that we should suck it up. A study in Austria and Germany
found that normalisation of period pain means that menstruators often wait
two to three years from the onset of symptoms before consulting a medical
professional.
We want to talk about our pain but because of the social stigmas attached,
we choose pain over shame.

Attitudes of health professionals

This is a big one. I’m definitely not saying all health professionals are bad
but, frankly, too many have failed us. I mean, we are talking about a system
that historically has been rooted in sexist notions of women’s hysteria. To
take just one famous example, English doctor Isaac Baker Brown surgically
removed the clitorises of thousands of women as a cure for insanity,
epilepsy and hysteria.
I can’t believe I’m about to refer to Reddit in my debut book but 2020
has proved that anything and everything could happen, so here we are. As I
write this, a screenshot from Reddit is currently going viral:

R/ASKREDDIT
Q. Autopsy doctors of Reddit, what was the biggest revelation
you had to a person’s death after you carried out the procedure?
A. Assisted with a post-mortem when I was a student. Female
patient died in her 40s. Her medical history had extensive
complaints of abdominal pains. One doctor even referred to her
as a ‘hypochondriac’ and others commented on apparent anxiety.
Opened her abdomen and she had extensive scar tissue, she was
absolutely massacred inside from endometriosis. She suffered for
decades and never got referred for a laparoscopy.
She didn’t have fucking anxiety, she had a medical condition.

Again, it’s from Reddit so I can’t 1000 per cent verify it and anxiety is a
real condition, but the devastating reality is that anyone with endometriosis
reading this would not be surprised. At all. I believe it! I believe it based on
the twelve years it took me to get an answer for my pain. I believe it based
on your pain. I believe it based on, basically, all of the above!
Symptoms are often mistaken for other conditions
When you experience pain during sex, you’re more likely to be tested for a
UTI than for endo. Period pain is usually passed off as dysmenorrhea
without further investigation into endo or adenomyosis. Bloating? It’s just
Irritable Bowel Syndrome. All legitimate things but the problem with many
medical professionals is that they don’t look beyond these conditions. Nor
do many connect the dots and consider the whole-body effects of
endometriosis.

There is no simple or straightforward way to test for

endometriosis
Currently, the only definitive way to obtain a pathological diagnosis for
endo is by laparoscopic excision surgery. Surgery being the only true form
of detection is a barrier for many reasons. Not everyone can afford time off
for surgery, nor can everyone afford the surgery itself. There could also be
extended wait times, depending on whether you go through the private or
public health system and where you live (i.e. rural or metro). It’s a bit of a
hot mess, but we will explore other ways in which endo can be detected
shortly.
Seeking a diagnosis for endometriosis is particularly chaotic because
where do you even start? There is no step-by-step handbook out there to
guide us along this confusing and daunting path, so it’s hard not to feel
completely paralysed like a deer in headlights. But that’s why I’m here! Let
this book steer you across that dangerous road as we follow a more
promising route together.
Before we take off, we need to pack. And while snacks are always a good
idea, I’m talking about packing some sweet, sweet knowledge! Our first
stop is the GP’s office to refer us on to a specialist, but I wouldn’t leave it to
them to decide you who see. Unless your GP is a total legend and has
already flexed some expertise regarding endo, I highly recommend doing
your own research on which specialist you would like to take on your case.
When I say specialist, I’m not referring to an obstetrician-gynaecologist.
Yes, an OB-GYN specialises in two things that concern endometriosis,
being pregnancy and reproductive health, however they may not necessarily
have the sufficient training to surgically detect and remove endo. You’ll
hear more about this procedure in the next chapter but to put it simply, endo
is not simple! You ideally want to see a specialist whose work revolves
around this disease, not someone who’s delivering babies at all sorts of
hours and then scrubbing in to check out some endo. That may come across
as dismissive but it’s the truth: this condition requires full-time investment
and not all OB-GYNs have completed the advanced training and
fellowships that are required for treating endo.

Endometriosis specialists
It’s not easy to find an endo specialist and it requires a lot of research, but
thanks mainly to the advocacy of the patient community, this information is
more accessible than ever before. A good place to start would be your local
online support group where you can read through posts from others who
have outlined their experiences and offered recommendations. Another
would be Nancy’s Nook Endometriosis Education, which is a private
Facebook group and also a website (you’ll find the details in the
Recommended Resources section). After doing this, I would then have a
good suss out on the internet to see if the recommended specialist you’ve
found has a website and what information is available regarding their
qualifications and training.
At the very least, they should have a fellowship in minimally invasive
gynaecology surgery and accreditation with the relevant body, such as
AGES (Australian Gynaecological Endoscopy and Surgical Society) or
RANZCOG (Royal Australian and New Zealand College of Obstetricians
and Gynaecologists).
In 2019, committees from both bodies signed off on guidelines for
performing gynaecological endoscopic procedures. While the information
doesn’t serve as an official assessment, it’s such a handy document that we
can access (for free!) online to help gain a better sense of our consulting
professional’s level of experience.
For example, a true specialist should have accreditation and credentialing
in Level 6 Scope of Clinical Practice with RANZCOG. Level 6 indicates
they have been trained in excising stage one to four endometriosis. Whereas
Level 1 only indicates training in ablation surgery.
 One tool that has been designed to help streamline the process of finding
the right specialist is iCareBetter. It basically serves as an endometriosis
specialist directory where surgeons who wish to be listed need to pass a
vigorous reviewing process that evaluates their surgical and excision skills.
It’s currently available in the United States but there are plans to extend it
throughout multiple countries and continents so there’s real potential for it
to be a worldwide game changer for the patient community.
Once you’ve done your checking around and have decided on a specialist
you would like to see, it’s time to take that request to the GP’s office. And I
truly pray you do not have the same experience that I did with old mate who
told me flat out that I didn’t have endo.
This step can be pretty daunting because you do feel like you have to
justify yourself—it’s almost as if you’re presenting a pitch. Like, we have
to convince them to believe us? Shouldn’t they just … believe us?

Come with receipts

Have you ever walked into a medical consult feeling super confident but
when it’s your turn to speak, nothing comes out? Your mind blanks? This
has happened to me plenty of times, but one thing I have found super
helpful is bringing in my receipts! I don’t mean your supermarket dockets, I
mean receipts in the form of previous scans, a pain diary, study papers and
any research you think applies to your case. Go in with guns blazing!

Diarise your symptoms

A pain diary is going to make it so easy for you to answer some of the GP’s
questions. You can do this the old-fashioned way with a pen and notepad, or
perhaps there’s an app out there that you already use to track period-related
symptoms, so why not incorporate your endo symptoms? In June 2020,
Australian organisation QENDO launched a free app for those suffering
with endometriosis, adenomyosis, polycystic ovary syndrome or chronic
pelvic pain. I highly recommend downloading this one as it allows you to
rate your pain and describe your period—you can track everything!
Take notes
I don’t know about you, but too many times I have left a medical consult
only to forget what was said. It can be really hard to retain all the important
information that they are providing, so ask if you can take notes. Sometimes
we’re too scared to do this and worried that it might offend the doctor or
strike a blow to their ego. It’s really just how you word it with them—try
something like: ‘If you don’t mind, I’d really love to take some notes as this
is really important to me and I value what you have to say. I want to make
sure I can check the details when I get home.’

Back yourself
Medical consults are intimidating at the best of times but they’re even more
scary when it’s concerning an invisible illness. It doesn’t matter how many
medical professionals you deal with and it doesn’t matter how much
experience they have, YOU are the expert of your own body. No-one else.
You live in this body, day in, day out. You know it better than anyone else.
Plus, you have rights! When you walk into that consultation room, you are
in control and the GP is there to help YOU. You are entitled to know all the
risks and benefits of all treatment options put forward. You also have every
right to refuse any treatment method or procedure that you are
uncomfortable with.

Listen to your gut

If the doctor doesn’t feel like the right fit, chances are they’re not. Go find
someone else. There is a systemic distrust of doctors within the
endometriosis community—and for good reason—but they’re not all the
same. Finding an expert doctor can be difficult at times, but it doesn’t mean
you should stick around with a bad one.
There are also a number of tools available to help GPs and patients, such
as:
 Diagnosis and Management of Endometriosis in New Zealand—a
publication developed by a taskforce of representatives from the
New Zealand Ministry of Health, RANZCOG, the Royal New
Zealand College of General Practitioners (RNZCGP), the Faculty of
Pain Medicine of the Australian and New Zealand College of
Anaesthetists (FPMANZCA), Endometriosis New Zealand and
those who live with endometriosis. It’s not a formal clinical
guideline, but it provides a consensus view of best-practice
principles that aim to improve the diagnosis and management of
endometriosis in New Zealand in primary and secondary healthcare.
Raising Awareness Tool for Endometriosis (RATE)—an accessible
electronic resource designed to help health professionals and
patients identify and assess endometriosis and endometriosis-
associated symptoms. RATE was developed by gynaecologists,
general practitioners, pain medicine specialists, fertility specialists,
emergency physicians and nurses working with RANZCOG.
The Pain Perception Project, by Ohnut.co and Duvet Days—a
patient-founded initiative producing various tools for better
understanding pain, starting with an online Pelvic Pain Assessment
that helps patients effectively communicate their symptoms with
doctors.

Seeing your specialist

You’ll need to repeat a few of the things you said when speaking with your
GP. Bring your medical history, pain diary and take notes. You’ll want to
ask a few more questions because it’s important to establish whether or not
you feel good moving forward with this specialist.
Here are a few to help you get started (but honestly, there could be
100,000 more!):

What is your training and fellowship background?

Can you tell me more about the appearance of endo?
How many endometriosis cases do you deal with annually?
 What is your success rate in terms of patients returning for additional
surgeries?
What is your preferred method of removing endometriosis and why?
(See Chapter 3!)
Where do you stand on hormonal treatment for endometriosis? (See
Chapter 3!)
What is your post-op approach in terms of ongoing management of the
condition?
Do you work alongside others who specialise in other areas of the body
that endo may be found (that is, a colorectal surgeon, a urologist, a
cardiothoracic surgeon, etc)?
Do you operate in both public and private hospital settings?
Do you have a waitlist?
What would you recommend for pain management while I wait for a
surgical diagnosis?

If you are not satisfied with how your questions are answered, seek a
second opinion. It may seem daunting, but it can have a huge pay-off. Just
ask Brooklynn Chess, my endo mate from Seattle who runs the Instagram
account @the_endo_chronic_ills. It took ten years for Brooklynn to receive
her endo diagnosis and, even then, she was misinformed by her first
gynaecologist, who insisted on combining a gonadotropin-releasing
hormone receptor (GnRH) such as Lupron or Orilissa with an
antidepressant as treatment. Brooklynn trusted her gynaecologist and agreed
to a diagnostic laparoscopy. Despite detecting stage three endometriosis,
Brooklynn’s gynaecologist decided against removing the disease and
continued to endorse these drugs, claiming they would stop Brooklynn’s
endometriosis from progressing any further. Brooklynn told me:

There were many factors that contributed to my decision to seek

a second opinion. I had pretty much always put my faith in my
medical team and listened to their recommendations, but when
my first doctor repeatedly downplayed my symptoms and made
me feel as though they were all in my head—then diagnosed me
with endometriosis that was too difficult for her to treat—I knew
there had to be better options for me, and thus far nobody had
 helped me, so I decided to take more control of my diagnosis and
medical care.

Brooklynn turned to Nancy’s Nook on Facebook where she learned about

excision surgery and immediately started searching for a specialist. After
considering four options, Brooklynn decided on The Center for
Endometriosis Care in Atlanta, Georgia, and it changed everything.

When I first spoke to my endometriosis specialist, I instantly felt

validated and understood. He never downplayed my symptoms or
made me feel like it was in my head. Prior to surgery I received a
forty-page pre-op packet and was directed to the Center for
Endometriosis Care’s website which contains a plethora of useful
and educational information that I still refer back to, to this day.
I think I had tears in my eyes the whole time during my pre-op
appointment because it was the first time in my life that I was in a
healthcare setting where I was actually understood.

Brooklynn underwent excision surgery alongside other procedures

(video-assisted thoracoscopic surgery (VATS), appendectomy, cystoscopy,
hysteroscopy and chromotubation) and received a detailed diagnosis of
widespread endometriosis that her first gynaecologist was unable to do. She
was provided with post-operation photos and her post-op report was fifteen
pages long. Seeking a second opinion was the best decision she ever made.

Once you’ve found a specialist you’re happy with, the next step they will
likely take is to talk through some methods that can help confirm suspicions
of endo.
Manual pelvic exam
Your specialist may want to perform a manual pelvic exam which involves
them feeling around areas within your pelvis for cysts or signs of scar
tissue. This allows them to check for pain, tenderness and any ovarian
abnormalities. Your specialist should always ask for consent first and you
should not feel pressured to agree to this examination if you do not feel
comfortable.

Ultrasound
As you probably know, an ultrasound is an imaging method in which
soundwaves are used to produce pictures of the inside of the body. An
ultrasound technician, called a sonographer, will apply a special lubricating
jelly to your skin. This prevents friction so they can rub the ultrasound
transducer on your skin. The transducer sends high-frequency soundwaves
through your body, which echo as they hit an organ or bone. Those echoes
are then recorded by a computer to form a picture that can be interpreted by
the doctor.
A standard transvaginal ultrasound is an internal ultrasound which
involves observing the pelvic area by scanning it with an ultrasound probe
placed just inside the vagina. Your specialist might ask for a DIE (deep
infiltrating endometriosis) scan which is a more thorough ultrasound.
Superficial lesions of endometriosis can never be diagnosed on ultrasound
as they have no real mass, only colour.

MRI
Magnetic resonance imaging is a scan that uses strong magnetic fields,
radio waves and a computer to take pictures of the soft tissue inside of your
body, but not all endo can be detected through an MRI scan.
Depending on your situation, you may be asked to bowel prep for an
ultrasound and MRI. Bowel preparation is a bowel cleanse with a laxative
drink, tablets and/or enema. I have done only one bowel prep before a DIE
scan using a fleet enema. It’s a clear liquid in a bottle, you insert the nozzle
into your butt and squirt the full contents of the bottle into the rectum. It is
awkward and uncomfortable but ya gotta do what ya gotta do.
Sometimes a diagnosis can be suggested based on these tests but there is
no definitive way to know without having a laparoscopy.
Your specialist may also want to prescribe some pain medication and
suggest some other pain management techniques such as:

Heat relief
You know the term ‘crazy cat lady’? That’s me but with heat packs. I have a
whole bathroom drawer dedicated to my warm little friends. These glorious
sacks are instant comfort. Well, after a few minutes in the microwave they
are. Alternatively, you can try stick-on heat pads or an electric heating
blanket.

TENS machine
Another drug-free form of relief that people with endometriosis turn to is a
Transcutaneous Electrical Nerve Stimulator (TENS) machine. These are
small, unobtrusive machines with electrodes that attach to the skin and send
electrical pulses into the body. The pulses do not hurt, they’re more of a
mild tickle and they’re supposed to work by either blocking the pain
messages as they travel through the nerves or by helping the body produce
endorphins which are natural pain-fighters. TENS machines vary in price
and size and some can be clipped to a belt. Personally, I’m yet to have any
luck with them relieving my pain, but it’s different for everybody.

Birth control
There are various forms of birth control such as the Pill, IUDs and
contraceptive implants that can help suppress your symptoms but there is no
evidence to suggest that birth control will stop your endo from growing
back. It’s entirely up to you as to whether you want to try them, just
remember to be fully informed about the potential risks and know that, in
terms of endometriosis, birth control merely serves as a bandaid.
Be cautious of GnRH drugs too, like what Brooklynn was offered by her
gynaecologist in the form of Lupron and Orilissa. They don’t do anything to
prevent endo from growing back and can present some serious side effects,
so make sure you do your research before deciding on any treatment.
Remember, hormonal suppression is symptom management and that is not
the same thing as actually treating endometriosis and its progression as a
disease.
 3

Surgery and recovery

As we have covered already, the way in which endometriosis is surgically

detected and removed is through a laparoscopic procedure. A laparoscopy,
also known as keyhole surgery, is where a surgical telescope and video
camera is passed through a small cut, a ‘keyhole’ in the abdomen, usually in
the belly button. The patient is placed under general anaesthetic and their
abdomen is inflated with carbon dioxide gas so the pelvic organs are clearly
visible and operable. Instruments can be passed through one or more other
small cuts in the wall of the abdomen, which are referred to as incision
points and are usually about one centimetre in length. Alongside the
removal of endometriosis, a laparoscopy can be used to treat scar tissue as
well as assessing fertility and functionality of fallopian tubes and ovaries.
Your specialist should communicate which procedures they plan on
undertaking, the purpose of each and hopefully they help you pronounce
them too, because we are dealing with words that are Big and Technical. To
give you an idea, this is what I had done during my second laparoscopy, in
addition to excision of endometriosis:

Tubal patency—tests whether fallopian tubes are open or not

Neurolysis—surgical application of physical or chemical agents to a
nerve to cause a temporary degeneration of targeted nerve fibres,
relieving neurological symptoms resulting from nerve infiltration by
endometriosis
Oophoropexy—surgical technique that utilises a dissolving suture to
temporarily suspend the ovaries away from the pelvic sidewall, to
which they might otherwise adhere to in the post-op period
 Adhesiolysis—surgical procedure to divide adhesions that are fusing
organs together
Hysteroscopy—surgical procedure in which a small camera is
inserted through the cervix to examine the uterus
D and C (Dilatation and Curettage)—where a sample of the lining
is removed and sent for analysis
IUD removal—pretty straightforward, removing IUD from uterus.

If your gynaecologist/specialist has recommended surgery, they also need

to tell you about the two ways in which endometriosis and scar tissue is
removed—ablation and excision. Unfortunately, it’s not often that patients
will be told any of this and it wasn’t until after my first laparoscopy that I
became aware of the two methods! If they don’t raise it, you are within your
rights to ask because you really do need to know which one they are using
and the reason behind that choice. Why is it so important, you may wonder?
Well, it turns out that the technique has a huge influence on a lot of things
like recurrence of endo, recovery and how you deal with pain moving
forward.
Ablation
Ablation uses heat energy to burn/vaporise the endometrial cells. Ablation
is generally more accessible and less expensive but that’s because it
requires less training than excision, therefore more gynaecologists can do it.
That may sound beneficial but it’s actually quite concerning because not all
gynaecologists specialise in endometriosis, especially its removal. Think of
ablation as like burning the leaves off weeds. It eliminates that top layer, but
it leaves behind everything else like the root and other scar tissue—and
therefore the recurrence rate of endometriosis growing back is high.
Because of this, deep infiltrating endometriosis cannot be sufficiently
removed by ablation and, because of the nature of the procedure, there is
also no way to obtain a specimen for true pathological diagnosis. The
number of stories I have heard from people in online support groups who
have had multiple ablations without knowing the real information is
heartbreaking. In the incredible book Beating Endo, Dr Iris Kerin Orbuch
recalls one patient who had gone through nineteen (NINETEEN!) ablation
procedures, each bringing mild relief for a brief period of time. Little did
this patient realise that these surgeries weren’t to treat returning
endometriosis, but in fact the endo had simply never left in the first place.
Its core and root remained while the surface continued to be skimmed over
and over again.

A quick note on endometrial ablation: this is something that may or

may not pop up throughout your endo journey. Endometrial ablation is
a different procedure to the ablation of endometriosis as it is primarily
used to treat heavy period bleeding by burning the uterine lining.
However, it does little for endo pain because endometriosis is not the
endometrium. Endometrial ablation should also not be used on people
who are pregnant or those who plan to conceive. Consult your
specialist for more information.
Excision
Although not a cure, excision is deemed the gold standard when it comes to
treating endometriosis as it surgically removes the entire lesion from its
root. This can be done with surgical tools, a laser used as a knife and
through robotic assistance. You know how I likened ablation to burning the
leaves off weeds? Excision is like a trowel that physically cuts the whole of
it out. This way, surrounding organs are less likely to be damaged or
removed and the chance of recurrence is significantly lower than with
ablation. However, due to the more invasive nature of excision as opposed
to ablation, specialists are required to undertake more study and training to
be able to perform it. For this reason, finding an excision specialist can be
harder than hitting up a regular OB-GYN. Not only that, expect a longer
recovery time.
Excision allows for pathological diagnosis of the disease and while it
may be harder and more expensive to seek, the sheer precision is so worth
it. An easy way to remember excision as the superior method is with a good
old alliteration. Excision = excellent.
Or, check out this analogy by Dr Abhishek Mangeshikar, the founder and
director of The Indian Centre for Endometriosis (ICE), who likens the
treatment of endometriosis to a splinter. A patient walks into the offices of
various doctors, seeking advice on this painful condition.

Doctor 1: Take these pills, they should sort out the pain (medical
therapy)
Doctor 2: There’s no splinter, it’s all in your head (medical gaslighting)
Doctor 3: I’m just going to burn off the top of the splinter and that will
take care of the problem (ablation)
Doctor 4: I think we need to remove the entire finger (hysterectomy)
Doctor 5: We need to remove the splinter in its entirety, including the
root embedded in the flesh (excision)
I don’t know about you, but I think I’ll be hitting up Doctor 5.
Leading up to your procedure
There are a few things you can be doing in the lead-up to your procedure
that will help improve your recovery. You should seek specific advice from
your surgeon as they may have some additional instructions such as bowel
prep, but here are some general tips to get you started:

stop smoking
abstain from alcohol
try to do at least two weeks of daily gentle exercise (even if it’s a thirty-
minute walk every day)
practise pelvic stretches and deep breathing exercises
try to maintain a healthy diet of fresh vegetables and fruits, etc
drink lots of water and …

Stay calm! The lead-up to surgery can be daunting for many reasons.
Perhaps you fear the idea of being put to sleep or maybe you are worried
that they won’t find anything. These feelings are totally valid and we all go
through it. I have been placed under general anaesthetic ten times now for
various procedures and I still get scared! I think what really helps is just
accepting that you can’t control everything and whatever happens, you will
be able to handle it like the boss you are. Any concerns you have, your
surgeon and anaesthetist are there to help. You might like to ask:

What is the expected duration of my procedure?

How much time off work/study do you anticipate I will need to take?
What will you do if endo is found somewhere you were not expecting
it? Will there be other specialists available to assist or would we look
at addressing this in a separate surgery?
Will there be anyone in training who may operate or is it just you?
How soon after my procedure will I see you?
 Be sure to also share any concerns regarding painkillers and possible
nausea, in case they need adjust your planned prescriptions. For additional
support, I recommend seeking an online endo group in your area.
What to pack for hospital
Even if you are booked in as a day procedure, it’s still a good idea to pack a
bag in case they decide to keep you overnight. This happened for my first
surgery, I was supposed to be in and out but due to the severity of my endo,
they wanted to keep me in for monitoring. I didn’t have a problem with that
but, boy, it was not easy trying to tell my partner where he could find my
belongings around my share house. Because we were doing long distance,
he obviously had no idea where anything was in my bedroom and, honestly,
giving instructions is the last thing you want to do when you are riding that
trippy anaesthetic wave. Learn from my lack of preparation! Some
important things to pack include:

ID, bank cards, health insurance information

phone charger
pads (you will be too sore for tampons and sometimes the hospital only
give you cardboard-like pads, so pack some from your favourite brand)
comfortable, loose-fitting underwear and PJs
comfortable, loose-fitting clothes to wear home (trackies and a button-
up shirt are super easy to put on)
slip-on shoes (that is, thongs or sandals) for showering and for wearing
home. Last thing you’ll wanna deal with is shoelaces!
hairbrush and hair elastics
toothbrush, toothpaste, floss, deodorant
heat pack and/or stick-on head pads (in case they cannot provide heated
towels for your stomach)
earplugs and eye mask (in case you’re in a shared room)
headphones
download music and TV shows onto your phone (in case your room
does not have a TV).
What to have at home
Someone to help you! You shouldn’t be doing any housework—no
cooking or washing
Comfy pillows including a tri pillow for extra back support and a small
one to pop on your stomach when sneezing/coughing
Heat packs, for your stomach AND your shoulders!
Peppermint tea and De-Gas/Gasx capsules to help relieve any shoulder
tip gas pain
Regular painkillers and any post-op prescribed medication—talk to
your specialist about this
Pre-prepared meals (you’ll need to avoid exerting yourself following
surgery), soft foods like soup, smoothies, salads and steamed veggies,
etc
Walking stick and shower chair if you need
Plenty of water because hydration is always essential, especially for
speeding up the healing process
Comfortable sheets: you’ll need to rest!
Recovery
So you’re fresh outta surgery, rocking some new scars and a tender, bloated
belly. You’re feeling pretty floaty from the drugs and you’ve probably got a
million questions swirling around in that hazy brain of yours. Your surgeon
may visit you in recovery or the next day if you are required to stay
overnight. They may even advise that you will receive the information in
your post-op consultation which is usually in the weeks following your
procedure and, if that happens, I would hold my ground and persist for
some sort of detail because screw having to wait a few weeks! Here are a
few questions you may like to consider asking in addition to any others you
have planned:

How long did my procedure take?

Did you find any endometriosis?
If so, was it superficial or deep infiltrating?
Where was it located and what stage would you consider it to be?
Were you able to remove it all and how was this done?
Ablation/excision—why/why not?
Was there any damage to any of my organs?
Were there adhesions and scar tissue?
How is everything looking fertility-wise?
Was there a suggestion of any other condition like adenomyosis?
(Adenomyosis is like endo’s evil sibling—more on this in Chapter 4.)
What post-op symptoms or pain should I call you about or present
myself to ER for (for example, infections, clots)?
What are the next steps that you recommend for managing and treating
my endo (for example, pelvic physio)?

Following your procedure, you should also be provided with:

 Post-op instructions specific to your situation (for example, when to get
stitches out, when you can drive, exercise, lift/carry objects, have
sexual intercourse, etc)
Medical certificate for work/study.

The below may not be available until your first post-op appointment but
it is important to request:

Operation notes detailing what was detected, examined and removed

Pathology results
High-quality operation photographs of your endometriosis.

You are 1000 per cent entitled to these documents for your own health
records. Plus, being your own health advocate means you need to be ready
to pull out those receipts if something goes wrong or if you start seeing
another specialist. Make sure you get them!
Another thing that will be occupying your mind is the next step in terms
of recovery. How long will it take for things to feel normal again? When
will the pain subside? The one thing about recovery that I can’t stress
enough is that it is different for everyone. This is due to a number of
reasons, such as duration of procedure, extent of the endo found and
removed, the doctor’s surgical skills, how we respond to pain, additional
conditions and more. No two people will have the same recovery, nor can
you expect to have the same experience for each surgery.
To give you an idea, here are just some of the ways in which my two
recoveries have differed:

2018
Stayed overnight in hospital
Vomited
Painful bowel and bladder movements for at least a week
Shoulder-tip pain from the carbon dioxide gas rising from my abdomen
Instant period for nearly two weeks
Took two weeks off work.
2020
Stayed two nights in hospital with a drainage tube and catheter
No vom!
No shoulder-tip pain or painful bladder/bowel movements
Nerve pain surrounding incision sites and neuropraxia in my upper
thighs
Bled for a few days and experienced first period two and a half weeks
later
Took four weeks off work.

You would think that recovery round two would have been easier, I
certainly thought it would be! In many aspects, it was better but looking at
it from a time-off-work perspective, things took a bit longer. Recovery is an
overwhelming thing and you can never pre-determine how it will play out,
so if I could share any tips with you, it would be these:

Accept that recovery is not linear

The road to recovery is not straight, my friend. She is windy, she is bumpy
and she might be longer than you expect. You are going to experience some
awesome days and you deserve to celebrate them but don’t you dare beat
yourself up on the shitty days. They’re gonna happen but they’re not going
to erase the time and effort you have put into healing so far.
Listen to your body
This is so important. Only you know your true limits and if you don’t listen
to your body, you could end up doing more harm in the long run. I’ll give
you an example from my second surgery. I returned to work nineteen days
after my procedure and I thought that was PLENTY of time, despite not
feeling 100 per cent. I thought if I got my body back into the swing of
things, she would adjust. I was oh-so wrong. I knew I was in for a difficult
night the moment I arrived at my heavy, soundproof studio door. Ah shit, I
forgot about you. With no-one else around, I struggled to do the most basic
tasks, like opening that damn door, reaching across the panel to press
buttons and make phone calls. I couldn’t even bend down to adjust the
chair! Two hours into my show and I could finally switch my microphone
off and hit play on some pre-recorded live music sets. My fake smile
quickly evaporated as I slumped on to the desk and burst into tears. It was a
terribly painful shift but what I struggled most with was accepting that I
wasn’t ready to be at work again. So, I listened to my body and took the rest
of the week off to continue my recovery. The following Monday, I was back
on air, feeling so much better. All I needed was those extra few days.
Honour your feelings
Post-op blues are a real thing, y’all. They can be a reaction to a number of
things, from the general anaesthetic and pain/discomfort to the lack of
mobility and independence as you recover. With an invasive procedure like
endometriosis surgery, we tend to just focus of the physical side, but your
emotional state also needs to heal.
Even if your physical recovery is going really well, it’s not unusual to
become sensitive, anxious or agitated. You might even experience
nightmares or randomly burst out sobbing and that is okay. I cannot begin
to tell you how many times I ugly-cried into my heat pack, weeks after my
surgery. Just remember that it will pass in time, so be gentle and patient
with yourself. You got this!
During those overwhelming moments, try to make peace with what you
cannot control (easier said than done, I know). Journal your feelings
alongside your recovery progress and remember that every emotion is an
experience you can learn from. You are doing your best.
This has been a pretty general overview of the surgical and healing
process for removing endometriosis so keep in mind that every case is
unique, but I hope you found it somewhat useful!
And while we’re on the topic, I just want to put it out there and say that I
think it is such BS that endometriosis surgery is generally treated as a day
procedure, especially here in Australia and particularly through the public
health system. I cannot disagree more with classifying this as a minor
operation because it is Absolutely Not! We are talking about a procedure
that can be so invasive and involves so many important organs. It affects
your entire core and the recovery should not be downplayed. Not one bit.
I’ve heard from many people who were discharged on the same day only to
find themselves back in ER with a complication that probably could have
been avoided had they stayed overnight. Endometriosis surgery is not some
in-and-out process like a fast food drive-thru. Dr Jeff Arrington recently
said online, ‘This disease is by far the most difficult surgical treatment we
see in benign gynaecology. This is often a worse disease and more difficult
surgery than gynaecological cancer.’ If this is the case, then all healthcare
systems need to reassess how endometriosis surgeries are dealt with in
hospitals.
 4

Associated conditions

Hey, well done you on making it this far! We’ve smashed through some
solid information on endo and your brain probably feels like it’s ready to
explode, which is fair enough. Getting to know the basics of this complex
disease is a pretty overwhelming process but look at you, ya bloody did it!
I’m proud as punch.
Now, are you ready to meet the family?
… Family?
Hmm, yes, I may have failed to mention that endo has a bit of a crew.
Sometimes it’s just endo hanging out but you might catch it mingling with
others. Distant relatives, you could say. But don’t be nervous! I mean, I
can’t say they are harmless as these associated conditions aren’t exactly a
walk in the park, but I reckon they’ll appreciate the fact that you’ve made
some effort in getting to know who they are. You may never have to
personally deal with these conditions but they’re handy to be across, as
learning about them can help broaden your understanding of endo and what
your body is going through.
Adenomyosis
Say hi to adenomyosis! It’s pretty much like endo’s cousin and, between
you and me, it’s a piece of work too. Adeno is when the glands and stroma
that comprise the endometrium (lining of the uterus) grow within the
myometrium (muscle wall of the uterus).

The term is derived from the words:

adeno—gland
myo—muscle
osis—condition.

Adenomyosis can be classified into two different pathologic types:

Diffuse adenomyosis—this means more widespread. There is a diffuse non-
capsulated involvement of both anterior and posterior walls of the uterus.
The posterior wall is the most commonly affected side. Diffuse
adenomyosis is found in approximately two-thirds of cases.
Focal adenomyosis—this means more nodular or localised to one
area and results in an asymmetric uterus. The area of adenomyosis
may have a pseudo-capsule, which is a structure, similar to a
capsule, that surrounds some abnormal cells. Focal adenomyosis is
found in one-third of cases.

Similar to endo, the cause of adenomyosis is unknown. There are a few

theories floating around but nothing has been proven in clinical trials. Some
people have both endo and adeno but having one doesn’t mean you will
necessarily have the other, despite some symptoms overlapping. Adeno
symptoms may include: abnormal and/or heavy menstrual bleeding
including blood clots lower back pain
chronic pelvic pain painful sex
painful bowel movements infertility
upper thigh pain
hip pain.

Another key sign of adeno is a soft, ‘boggy’, enlarged uterus. It is also

worth noting that some people with adenomyosis are asymptomatic.
Like endo, adenomyosis isn’t the easiest thing to diagnose. There are a
few ways in which it may be detected such as: Manual pelvic
examination—which may reveal an enlarged and tender uterus.
Expert guided transvaginal ultrasound (ETVUS)—this involves a
probe being placed in the vagina like a routine test. However, this
one should preferably be performed by a gynaecologist who
specialises in ultrasounds, as opposed to a general sonographer who
may lack experience in diagnosing and detecting adenomyosis.
MRI (magnetic resonance imaging)—this collects pictures of soft
tissue such as organs and muscles that don’t show up on X-ray
examinations.

The only true form of diagnosis is via pathology after a hysterectomy.

That’s right, while a hysterectomy cannot cure endo, it CAN diagnose and
serve as a cure for adenomyosis because by removing the uterus, you are
removing the adeno. Endo grows outside of the uterus, so taking the uterus
out isn’t going to stop the growth. Having a hysterectomy is not a decision
to be made lightly, so please take time to consider the potential risks,
complications and what’s going to work best for you and your own
situation. Your body, your choice.
In terms of pain management, there are a few options such as anti-
inflammatory medications and hormonal treatments to alleviate symptoms
but, again, they won’t cure adeno. There are some instances where people
with adenomyosis receive uterine ablation. This isn’t the same as ablating
endometriosis which is inferior to excision surgery. Uterine ablation
involves burning of the endometrium to stop heavy bleeding, but this is not
a permanent fix and it should not be performed if you intend to have
children. There’s also a procedure called a Presacral Neurectomy (PN) that
surgically removes the presacral plexus, aka the group of nerves that
conduct the pain signal from the uterus to the brain. It can be done via
laparoscopy but it’s a very delicate procedure with some risks, so you need
to make sure you are dealing with a super-experienced specialist. Always
consult with an informed medical professional.

Polycystic Ovary Syndrome (PCOS)

Next up, Polycystic Ovary Syndrome (PCOS). PCOS is a common but
complex hormonal condition with its name referring to many cysts. The
reason why it is labelled as a syndrome is because it involves a group of
symptoms that affect the ovaries and ovulation. People with PCOS tend to
have many partially formed follicles on the ovaries, which each contain an
egg but these rarely reach maturity or trigger ovulation. The lack of
ovulation alters levels of estrogen, progesterone, follicle stimulating
hormone (FSH), and luteinising hormone (LH). Estrogen and progesterone
levels are lower than usual, while androgen (male hormone) levels are
higher than usual. Consequently, the menstrual cycle is disrupted, so those
with PCOS get fewer periods.
 Although some people may develop cysts on their ovaries, many do not.
People with PCOS can also experience: weight gain
fatigue
unwanted hair growth (also known as hirsutism) thinning hair on the
head infertility
acne
mood changes
pelvic pain
headaches
sleep problems irregular periods
increased inflammation in the body.

As you can see, some of the symptoms do overlap with endo so it is

possible to have both but just because you have one doesn’t necessarily
mean you will have the other. To be diagnosed with PCOS, two of these
three things must be present: 1. Irregular/delayed periods—or fancily
referred to in the medical world as oligomenorrhea and anovulation 2.
Hyperandrogenism—we’re talking characteristics such as acne, scalp hair
loss or increased facial and/or body hair growth, or a blood test showing
higher levels of androgen hormones 3. Twenty follicles on either ovary—
detected via ultrasound.
The list above is known as the Rotterdam Criteria, formed in 2003 to
help health professionals correctly diagnose PCOS. A long-term approach is
key to managing PCOS as there is no cure but treatment options such as
diet and lifestyle changes and birth control should all be discussed with a
medical professional.
The four Ds
The four Ds aren’t the easiest to pronounce but they’re pretty
straightforward. Many medical professionals are very familiar with these
conditions and will usually point to them before an endometriosis diagnosis.

Dysmenorrhoea (dis-meh-nuh-ree-ah)
This is the medical term for excessive pain when menstruating. There are
two types of dysmenorrhoea. Primary dysmenorrhoea typically occurs in
the absence of pelvic disease. Secondary dysmenorrhoea results from
anatomic or macroscopic pelvic pathology, as seen in people with
endometriosis or chronic pelvic inflammatory disease. So, if your medical
professional ever mentions secondary, they definitely need to be exploring
further for endo.

Dysuria (dis-ur-ria)
This condition is characterised by pain or discomfort when urinating. Your
doctor can usually make a diagnosis based on symptoms you describe and
the analysis of a urine sample (urinalysis). Treatment for dysuria can vary
from prescribed medication to eliminating chemicals from shower gels and
body lotions, but it really depends on the cause of the pain, whether it’s due
to infection, inflammation, dietary factors, or a problem with the bladder.

Dyschezia (dis-keez-ia)
Dyschezia involves excessive straining with stools. It’s basically lacking
coordination within the pelvic muscles when pooping and while it is often
seen in babies and toddlers, dyschezia can also affect adults. Exercises for
the pelvic floor are usually recommended to help as well as diet
modifications.
Dyspareunia (dis-par-roo-nea)
This condition presents as pain as a result of penetrative sexual intercourse
or activity. It can be diagnosed based on medical and sexual history and via
a manual pelvic exam. If your doctor suspects a particular cause for
dyspareunia (that is, endo), they may refer you for an ultrasound. Some
ways this condition can be treated are through pelvic physiotherapy and
seeing a sexologist.
Dyspareunia can often be mistaken for two other conditions: vulvodynia
and vaginismus. Vulvodynia is chronic pain or discomfort around the
opening of your vagina (vulva), whereas vaginismus occurs when the
muscles around the vagina tighten or spasm involuntarily. Vaginismus
usually occurs when the genital area is touched but it’s not just about
sexytime. This pain may occur before attempting to insert a tampon or
during a gynaecological examination.
Fibromyalgia
Fibromyalgia is a chronic and complex condition that involves widespread,
ongoing pain affecting various systems in the body. It is not considered an
autoimmune or inflammation-based illness but, according to the American
College of Rheumatology, research suggests the nervous system is
involved. Because of its multi-system nature, it’s common for people to
experience different symptoms but the most common include: pain and
tenderness in joints and muscles fatigue, lack of energy and trouble
sleeping.
Fibro can be fierce, man. I have friends with the condition who
experience sensitivity to wearing clothing or even to light. The severity and
debilitating nature of some of the symptoms were echoed in a US National
Health Interview Survey: 87 per cent of participants reported having pain
on most days or every day of their lives. There is no set test for
fibromyalgia so it can be quite difficult to diagnose as your doctor must
solely rely on your reporting of your symptoms. Medications, cognitive
behavioural therapies and gentle exercise may assist in the management of
fibro but there is no cure.

Irritable Bowel Syndrome (IBS)

Have you ever been mistaken for somebody else? In high school, I was
frequently told that I looked like another girl in Ballarat and I vividly
remember meeting my alleged doppelganger while working at McDonald’s
one night. The restaurant was full and I was serving at the front counter
when, among the crowd of customers, Elle appeared at my register. It was
so amusing as we stared at each other with wide eyes and big smiles,
knowing exactly who the other was. We laughed as we could finally see
why so many people told us how similar we looked. I resembled Elle more
than my actual biological twin! (Yes, I am a twin.) I feel like endo and IBS
would have a similar reaction if they ever ran into each other because it is
SO common to be diagnosed with IBS instead of endometriosis. They’re
like distant cousins who on first glance look more like siblings, but as you
get to know them you see how they differ. There is no medical test to detect
IBS—rather, it is usually based on reported symptoms and medical history.
Therefore, it can be pretty easy and convenient for medical professionals to
suggest this condition instead of considering the fact that endometriosis
may actually be present on the bowel or somewhere on the gastrointestinal
tract.
Irritable Bowel Syndrome is pretty self-explanatory—a condition
affecting the functioning of the bowel. The main symptoms of IBS include:
recurring diarrhoea or constipation bloating
pain or discomfort that is relieved by passing wind or going to the
toilet.

IBS can be managed in numerous ways. One is through modification of

diet (specifically increasing fibre and eliminating triggers). Another may be
stress management as stress may influence IBS flare-ups. Some people may
require medical therapy and, in extreme cases, surgical intervention for
complications like bowel obstruction (blockage) or abscesses (built up pus).
Pelvic physiotherapy can also help, which you will learn more about later in
this book.

Interstitial Cystitis (IC)

Trying saying this one fast! IC is a chronic pelvic pain issue that is basically
the sibling of IBS but, instead of bowel issues, we’re looking at irritative
bladder symptoms. These can include: a persistent, urgent need to urinate
pain in pelvis or between the vagina and anus frequent urination, often
small amounts, throughout the day and night pain/discomfort while the
bladder fills and relief after urinating painful sexual intercourse.
In terms of diagnosis, there are a few options. Alongside reported
symptoms and a manual pelvic exam, a urinalysis may be required as well
as a cystoscopy. During this procedure, a tube-like instrument called a
cystoscope is inserted through your urethra and into your bladder to detect
ulcers, swelling and any possible signs of infection. During this procedure,
a biopsy may be taken from the bladder and the urethra to check for bladder
cancer and other rare causes of bladder pain.
 Treating interstitial cystitis may require a multimodal approach through
means of pelvic physio, oral medications and the use of a TENS machine
which may increase blood flow to the bladder.
Uterine fibroids
Finally, meet fibroids. Also known as a myoma, fibroids are non-cancerous
tumours that grow in and around the uterus. Like many of these associated
conditions, the cause of fibroids is unknown and while it is common to be
asymptomatic, some symptoms are similar to endometriosis: heavy
and/or prolonged menstrual bleeding pelvic pressure/pain frequent
urination and/or difficulty emptying the bladder constipation
backache or leg pains.

There are three major types of uterine fibroids:

1. Intramural fibroids—found within the muscular uterine wall 2.

Submucosal fibroids—found more towards the uterine cavity 3.
Subserosal fibroids—found closer to the outside of the uterus.
They can be detected via gynaecological examination, pelvic ultrasound
or during surgical procedures such as hysteroscopy or laparoscopy, usually
intended for other conditions. Treatment options for fibroids are super
varied depending on their size, number and location, and range from just
monitoring them to taking medication or undergoing a surgical procedure to
remove them. It’s best to consult with your specialist.

So there we go, a quick little meet’n’greet with some associates of

endometriosis. Keep in mind, though, that all of this information is really
just scratching the surface so I highly recommend extending your research
on these conditions and, as always, speaking to a medical professional for
further clarification.
You know you have endo when …

You have abs at 8 a.m. and look five months pregnant by 8:10 a.m.

Jeans do not exist in your vocabulary, let alone your wardrobe.

White pants? I simply do not know her.

You see your specialists more than your friends.

You start talking to your heat pack. You also pat it like a treasured pet.
Goooood girl!

5/10 is a successful pain day. WOO!

What cramps? All I feel is the burning of my skin from my heat pack!
This is fine!

Your purse is actually a pop-up pharmacy that could cater for your
entire suburb.
The only action in your DMs is from people asking ‘Have you tried
… ?’

You buy your clothes in two sizes—one for normal wear, one for
bloating and flare-ups.
 5

Social media and self-advocacy

Okay, I’m about to spill some piping hot tea on you, much like the time I
literally fell asleep sitting upright in bed with a cup of piping hot tea in my
hand. I’m still trying to get the stains out of my doona. ANYWAY, here we
go …
I have learned more about my endometriosis from social media than from
any consultation with any medical professional. Yep. I know that sounds
bizarre, and it IS bizarre, but that is the (kinda sad) reality for anyone
suffering an invisible, incurable condition like endo. The lack of awareness,
support and education from the medical field has given sufferers no choice
but to be their own advocates AND their own experts.
Upon my diagnosis, endometriosis was just a name for my pain but it
wasn’t until I chose to embark on a journey of self-advocacy and education
that I came to know the true depths of this chronic disease and the ways in
which it had already influenced my life and what it meant for me moving
forward.
How does it make you feel reading that? Scared that you’re not qualified
enough to self-advocate? Confused because as a sufferer, that shouldn’t
even be your role anyway? I FEEL YOU. Now, I’m definitely not saying
that we should dismiss our doctors’ advice, pretty pls do not do that! But the
unfortunate fact of the matter is that much of their advice is simply not
enough and will not equip us with the adequate information we truly need
to navigate life with endometriosis. Therefore, we need to take it upon
ourselves to find the missing pieces of our endo puzzle. And just like we do
for many other things—recipes, reviews, even the weather—we turn to the
internet.
According to Google Health boss David Feinberg, the popular search
engine receives approximately 70,000 health-related searches every minute.
That figure does not surprise me, but I wonder how often people really find
the answer they are looking for. And when it comes to an isolating,
misunderstood condition like endometriosis, sufferers are searching for
more than answers. They are searching for validation and comfort. Not only
do we feel neglected by the medical system, but we can also feel hugely
isolated from our friends and family. God love ’em, but sometimes they just
really don’t get it. This is where social media enters the chat (cue old-school
MSN Messenger notification sound, am I showing my age here?).
These days, it’s pretty easy to associate social media with influencers and
fake news (cheers, Trump). But I’m here to guide you past the teeth-
whitener #sponcon and general misinformation to help you find what you
really need. Before I share some tips on using social media for your endo,
I’d love to take you through my own experience.
My endo social life began on Facebook after booking in for my first
surgery in 2018. My friend Hayleigh put me on to one local support group
and from there, I joined a few others to seek as much advice as possible
regarding surgery prep and recovery. I didn’t really have any expectations,
but I found sooo much comfort in these online communities. Not only was I
surrounded by people who actually understood what I was going through
and how I was feeling but I knew they were there, willing and ready to pass
on what they had learned from their own experiences. If it wasn’t for these
groups, I would have never known that there are two ways to surgically
remove endo and which is the superior method. Nor the true wonders of
peppermint tea in relieving the post-surgery gas pain from your shoulder
tips. About the importance of requesting your operation notes and photos
for your own records. To meal prep because cooking after surgery is the
LAST thing you’ll wanna do. Things that were never covered in my
appointments or in the brochures I received, but were essential to my endo
journey. I also probably would not have found my current specialist either!
After sharing my diagnosis on triple j, I received countless DMs from
listeners with endo, as well as those who thought they might have it. I even
got messages from their friends/ partners who wanted to learn more about
the condition! My heart! Whenever I’d do a Q&A on Instagram, I would
always be asked how I was recovering or what advice I could pass on, so in
May 2019, I launched endogram. A separate account to my personal page, I
wanted endogram to have a ~strong aesthetic~. Or, in my language, I
wanted it to be a fucking FABULOUS visual delight—full of vibrant
illustrations and work from contemporary artists with informative captions
exploring different aspects of this chronic illness. I always wanted
endogram to be particularly accessible for a younger audience because I can
totally empathise with how difficult it is to have these kinds of
conversations with your peers and the fear of being judged for your pain. In
high school, I wasn’t taught a damn thing about endo and if I had been, I
reckon it could have drastically decreased the time it took for me to get an
official diagnosis. Instead of twelve years from first experiencing
symptoms, it could have been two years. I’ll never forget receiving a
message from a sixteen-year-old who told me how much endogram has
helped her start conversations with her friends in school because they all
love the artwork I share. THAT is what it’s about, fam!
I seriously love Instagram. It’s my favourite social media platform and a
large majority of my daily screen time is aaaabsolutely thanks to my
relentless scrolling on it. Yeah, there’s a bit of rubbish and filtered
perceptions of life that may be a bit eyeroll-y but let me tell you, Instagram
has been my main gateway to a powerful and passionate community of
endometriosis advocates. From celebrities like Alexa Chung, Sarah Hyland
and Lena Dunham to people just like you and me, it’s crazy how a few
hashtags can lead to an incredible network of people who stand in
solidarity, despite living thousands of kilometres apart. Through endogram,
I have forged genuine friendships with people that I’ve never even met. I
am constantly inspired by the validating posts of Georgia Stuart
(@theendojournal) who reminds me it’s okay to slow down and listen to my
body. And the no-bullshit approach of Kellie Niebling (@thatendogoddess)
who will fearlessly shut down any insincere marketing scheme or fear-
mongering content directed at our already vulnerable patient community.
One of my closest connections is with Claudia Wright (a.k.a.
@me_myself_and_endometriosis), who shares the ups and downs of living
with multiple chronic conditions with over 9000 followers. Claudia, who
launched her account in 2018 about five months following her diagnosis,
says this about it:

My health was rapidly declining, I was six weeks away from

flying to the US for surgery, expecting my period and had just
been discharged from the hospital after an accidental overdose
trying to control my severe pain.
 The account was made almost immediately after returning
home. I didn’t even think about the name for more than ten
minutes, I just knew I wanted to scream about how serious
endometriosis is!

Like me, Claudia quickly realised the power and potential of social
media to help people with chronic conditions.

In the months following my diagnostic surgery and leading up to

starting this account, I was researching everything I could about
endo. I quickly became blown away because the most factual,
evidence-based data I could find was on social media, presented
by those who had fought through hell with this disease, made it
out and then were kind enough to come back with supplies for
those of us still struggling. Reading this information and hearing
these stories truly changed my life in a number of ways. It taught
me the facts of this disease, how it should be treated and who
could treat it. It introduced me to friends I will have for life. It
made me feel validated and part of a community. But it also
ignited a type of burning passion inside, like nothing I had
experienced before.

To put it simply, Claudia knows her shit. From her posts and story
highlights to endless Q&A sessions, Claudia puts an immense amount of
time into creating her content and ensuring that it is accurate and accessible.
She even launched a gorgeous endo necklace for people to purchase online
and it sold out worldwide, within minutes! Beyond endo, we have also
found similarities in the music we enjoy, our shared outlook on life—and it
turns out we even share the same birthday. We are literally endo-sisters, just
a few hours apart! To think that I found her and my own online support
system simply by punching a few endo hashtags into my Instagram search
bar is pretty damn cool.
The great news is that you and I can share the same social media outcomes.
You are SO WELCOME to tap into this empowering endometriosis
community, share your story and form friendships with those who are going
through the same struggles. The (Instagram) world is your oyster!
Not gonna lie though, getting started can be a bit overwhelming. Like,
where do you begin? All it can take is one hashtag to lead you into an
overflowing feed of content from bloated endo bellies to fertility updates,
post-surgical scars and even crying selfies which is totally fine but it can be
a bit triggering at times. You may feel like you are suddenly taking on an
extra emotional load as you expose yourself to other people’s experiences.
Or it may instead bring you a great deal of comfort—we all react differently
and that is absolutely okay.
Here are some tips that I hope will help you make the most of endo social
media. ♡

Establish your purpose—what are you really

looking for?
Everyone is on endo social media for different reasons. You may want to
make new friends, feel less alone or you might just want to find some
specific information regarding endometriosis. You are in control of your
intent and what you consume, so it’s important to stop and ask yourself:
‘What do I want to get to out of this?’ Knowing the answer to that question
will help you navigate the Explore feed and the accounts you choose to
follow and connect with.
If you are there purely to seek accurate information, I would recommend
joining Nancy’s Nook Endometriosis Education. Just type those four words
into your Facebook search bar and you will come across a private group
with over 100,000 members. Yep, that’s how popular it’s become. The
group primarily consists of patients but there are also loved ones and even a
bunch of doctors and endometriosis specialists who are members. This
group is described as a self-serve library. There’s no open discussions that
provide support as such, instead members are encouraged to use the files to
find the info they need and become their own expert. It’s factual and frank.
If you’re looking for support groups where you can have a vent and a
D&M with other endo warriors, best to look elsewhere. Find out if your
national organisation runs any online support groups, for example QENDO
(Australia) has Facebook groups for all capital cities. They also organise
Endo Meets—whether that is in person or via Zoom—offering a safe space
for you to share your problems. It’s a cost-effective way of connecting with
new people and, heck, these interactions could even save you from
splashing coin on a therapy session!

Put yourself out there—you can do it!

This one applies to anyone who wants to make a post, create an endo
account or reach out to a fellow warrior for advice or friendship. For one of
my endogram giveaways, I wanted my followers to share their most recent
endo win. Something that they were really proud of and wanted to celebrate
or acknowledge. The responses were all so amazing but I was particularly
proud to hear from those who decided to open up and share their own
journey with others.

I posted on Instagram about my endo experience so far and was

able to help a few girls after they reached out about their own
personal concerns. I was nervous to post but realised I needed to
raise awareness and try and help others—@elishadalli

If it’s any comfort, I was totally shitting myself about creating endogram.
I was so scared of judgement. I was worried it would be received poorly but
I put myself out there and it’s pretty much led me to writing this book! It is
always a daunting thing to step out of your comfort zone and use your
voice, but you deserve to be heard and your story is so important to share!
Never forget that. Plus, you can make some seriously awesome connections
with people all around the world.
Just because endo accounts are run by endo
patients does not mean they can or should give
you medical advice
Okay, this one is really important, fam. There’s a difference between
learning about endo on social media and taking medical advice about endo
on social media. Big difference.
Unless someone can legitimately prove they are qualified, they cannot
and should not be handing out such sensitive information. Nopeeee, nope,
nope. It’s super irresponsible and can do more harm than good.
Endometriosis is already complex enough as it is, we don’t want to be
making it even more complicated. Plus, we all deal with the condition and
its symptoms SO differently. My experience with pain and particular
treatments may not be the same for you and vice versa. Whether it’s
concerning birth control, hysterectomies, which specialist to see—use the
information you obtain from social media to make informed decisions for
yourself.
I’m all about providing factual information regarding these things—for
example, hysterectomies cannot cure endometriosis. But nobody can say,
‘YOU should/should not do this’ because they simply don’t know your
situation. Your body, your choice. Plus, if you’re not sure about something
that has been posted, ask for further details like a website or study, or you
can consult a credible source like Nancy’s Nook or the Center for
Endometriosis Care. It’s pretty easy for false information to spread like
wildfire, so always ensure what you are sharing and what you are
consuming is factual.

Beware of people trying to use your condition to

sell you stuff!!!
We know the internet can be pretty dodgy and, unfortunately, vulnerable
people with chronic illness make for easy targets when it comes to money-
making. Let’s start with MLM. If you’re not across it, MLM is short for
Multi-Level Marketing, and is also referred to as network/referral
marketing or word of mouth/direct/pyramid selling. Products and services
are sold but distributors associated with the company can also earn income
by recruiting new sellers—so for each sale their ‘down line’ makes, the
referring distributor earns a small commission. This can be done through
DM transactions (buying via your social media inboxes) or promoting
through private groups … that kind of thing.
MLM strategy has drawn criticism for having a similar business model to
that of a pyramid scheme. It’s a complex conversation for our community in
particular, because from a sales perspective, it could actually be a perfect
job for a chronic-illness sufferer. Flexible hours, work from home, your
own client base—you’re essentially the boss of your own small business. It
kinda reminds me of when I was a travel agent, as your desk was referred to
as your own business. We were responsible for what sales and commission
we made.
Now, I appreciate the hustle, but I have a huuuge problem with strategies
like MLM deciding to target people who they know are so desperate for
relief that they are willing to try anything. People like you and me. These
strategies use our vulnerability and suffering to their advantage by selling
products not on the basis of evidence but on emotion. They not only use our
condition as a buzzword and a selling point, but they are often unqualified
to be peddling products that are labelled as health and wellness. It’s gross
and there’s a reason why these strategies are banned from multiple groups
that are moderated by legitimate endo organisations.
My mate Kellie has had her fair share of people sliding into her DMs and
inviting her to private ‘wellness’ groups that are full of products directed at
endo and PCOS sufferers. She shared on her Instagram:

I used to be that vulnerable young girl wasting all my money on

products because another girl on the internet said it worked for
her. So many of these multilevel marketers don’t care about their
audience. You’re talking about a disease that at times destroys
mental health, impacts relationships and can potentially shatter
people’s chances of becoming parents. It’s not a fucking fad to
make fast cash.

Like Kellie, I was invited to join a private Facebook group to learn more
about some oral drops for endo. I was hugely sceptical—particularly
because the single PDF product description that I was provided with made
no mention of endometriosis—but I was still curious about the testimonials
that alleged these drops could eliminate endo symptoms. As I scrolled
through the posts, I found two common themes—weight loss and the
number of surgeries that people had for their endo. We’re talking ten or
more surgeries, which is really concerning. For one person to have that
many surgeries suggests a few things—the use of ablation, the continuous
formation of adhesions as a result of ablation and a regular OB-GYN who is
not equipped to deal with endometriosis. Instead, the focus of the posts was
on how these drops saved them and did a better job than any surgery could.
These posts were riding on emotion and not facts, so I wanted to help and
share some additional information and evidence-based tips. My post was
deleted by admins because ‘it didn’t fit with what the page is about and
what the hub provides’. I was removed from the group shortly after.
So, look, you are free to try whatever you want, but if you ever receive
an unsolicited message about a product claiming to heal your endo, be super
cautious. Oral drops, powdered drinks, vaginal steaming, supplements and
even CBD come up on these posts. The most effective thing you can do for
your endo is to get it excised.
Alongside MLM, be wary of ‘coaches’. I’m talking life coaches,
wellbeing coaches, even ‘endo coaches’. Not only is coaching an
unregulated industry—anyone can claim to be one—but nothing actually
defines their scope of practice. Whilst we may be the experts of our own
bodies, having endometriosis does not qualify anyone to coach or manage
another person’s illness, especially if they’re offering to do this purely
online. If you want to seek expert advice for managing your endo, please
make sure you check the qualifications and credentials of the people who
claim that they can help you.
Language matters
I try to be very careful with how I talk about endometriosis because it
doesn’t just affect women. As you will read later in the book, there are also
transgender and non-binary people who suffer from this condition and our
language can really influence how they navigate the health system.
Constantly referring to endo as a ‘women’s health condition’ is not
inclusive. Endo is already isolating enough as it is, let’s not make it even
harder for our fellow trans and non-binary warriors. ♡
Check in with yourself
This is so important because, as I mentioned earlier, by exposing yourself to
the endo experiences of others, you may subconsciously be taking on an
extra emotional load and that may not be so great for you. Even sharing
your own story can be quite draining. Make sure you monitor your social
media usage and especially stay aware of how everything is making you
feel. Do you feel better from seeing this content or is it making things worse
for you? If it’s helping, great! If it’s not, it’s time to reassess what you are
consuming, who it’s from and how to change it. It’s also important to
maintain that balance of online community and physical connection with
the people around you. Like the sixteen-year-old girl I mentioned at the
start of this chapter, how cool that she could show her friends my posts
which sparked face-to-face conversation and understanding? It’s important
that we take breaks and that we don’t entirely shut off from the people
physically around us. It’s not healthy to consume social media all the time
about a condition that already takes up so much of your physical energy.
Look after yourself!
 6

Let’s get physical (therapy)

As we know, the average time it takes for someone to be diagnosed with

endometriosis is six and a half years. That, my friend, is a LONG time to
not only obtain answers, but it’s also plenty of time for endo to cause some
real havoc inside. From nerve hypersensitivity and muscle spasms to
postural alignment problems and a weakened core, a lengthy diagnosis can
result in years of damage for many people and, unfortunately, that cannot
be resolved by surgery alone.
Taking the disease out at its root through excision is, of course, the gold
standard but a common misconception is that it will also remove our
symptoms. I wish it were that easy! In order to fully get on top of our endo
management, we need to take a multidisciplinary approach.
A multi-huh?
Sounds a bit fancy, right? A multidisciplinary approach essentially means
combining specialities and looking at endo from a whole-body perspective
because, let’s be real, it is a whole-body disease. There’s such a wide
varying range of symptoms but when you think about it, endo has a real
domino effect on our bodies. Pain can rear up in so many different areas
and it can be triggered by various things such as diet and sex. Pain can also
affect our mental health and our relationships. We owe it to ourselves to
address all of these things and the most effective way of doing so is through
the formation of a multidisciplinary team.
More specialists = more money?
Unfortunately, yeah, bringing more people on board means working out
that bank account. Endometriosis is expensive. As tax time was nearing, I
thought it would be fun (?) to look through my bank statements and
calculate my out-of-pocket expenses for endometriosis in the last twelve
months (1 July 2019–1 July 2020).
 Acupuncture and traditional Chinese medicine (TCM)—$1559
Pelvic physio—$1192
Specialist appointments—$400
Ultrasounds—$350
Private health insurance—$1658
Surgery (surgeon out-of-pocket gap fee, anaesthetist out-of-pocket,
hospital fee, insurance excess $200)—$6150
Total = $11,309

For a visual representation of my reaction to this total, please google

‘Kristen Bell Laugh Cry GIF’.
I then did what none of us should do and pondered what that money
could have gone towards. A (pre-COVID) holiday, a decent second-hand
car, a little juice-up to my house savings … It was like self-inflicted salt in
the wound.
Although I had to implement some budgeting in order to afford these
costs, I’m still privileged that I could make it work. It’s just so utterly sad
that as endometriosis sufferers, we have to go to such financial lengths in
order to live a semi-normal life. I cannot help but feel for those who are
unable to be in a similar position, because the extent of their endo does not
allow them the comfort or stability to earn consistent streams of income.
In 2019, research from Western Sydney University and the University of
New South Wales revealed that endometriosis costs an individual and
society $30,000 per year. Around one-fifth of this cost was in the health
sector, for medications, doctors’ visits, hospital visits, assisted reproductive
technology such as IVF and any transport costs to get to these
appointments. Of this, $1200 were out-of-pocket costs.
It’s pretty simple: our quality of life with endometriosis is dictated by
money. But that’s why I’m here as your wingwoman to not only navigate
this condition, but the costs associated with it as well. I want to save you a
few coins before you start calling everyone and anyone for appointments.
Think of the next few chapters as speed dating. I’m going to give you a
taste of each component and introduce you to some experts who will share
some vital information to help you make the best decisions for your
situation. It’s then up to you to swipe left or right on the areas you think are
important to focus on in your multidisciplinary approach to endometriosis.
For our first stop, let’s get physical!
The pelvic palace
Welcome to the pelvic floor, or as I like to call it, the pelvic palace! It’s a
group of muscles that are arranged within the pelvis, almost like a
hammock, connecting the front, back, and sides of the pelvis and sacrum.
The main purpose of these muscles is to provide support to the organs of the
pelvis and allow normal urination, bowel movements and sexual
intercourse.
I refer to it as a palace because I’ll take any opportunity for alliteration
but, also, I think it’s a really important part of our body that we really
should treat like royalty! Especially when we are dealing with
endometriosis which can cause some pretty big dysfunctions. In fact,
endometriosis has a strong association to Pelvic Floor Dysfunction (PFD),
with abnormal muscle tension developing as a protective response to our
pain. Pelvic Floor Dysfunction is when these muscles cannot effectively
coordinate contraction and relaxation. Consequently, PFD can cause some
or all of the following symptoms:

urinary urgency, frequency, hesitancy, stopping and starting the stream

of urine, painful urination, or inability to empty the bladder
constipation, straining, pain with bowel movements
lower back pain or pain in the pelvic region, genital area or rectum
pain during or after intercourse, orgasm or sexual stimulation
uncoordinated muscle contractions causing the pelvic floor muscles to
spasm.

Think about all those bad periods that have caused you to crawl into a
foetal position. While it’s a basic protective response to pain, curling up in
this position actually creates tension within your abdominal muscles, the
inner thigh muscles and pelvic floor muscles. Similarly, if you feel pain
during penetrative sex, a natural response is to squeeze the muscles around
your vagina. That kinda stuff can’t really be fixed by surgery. In order to
address the dysfunction found in the muscles of the pelvic floor, we need to
look at pelvic floor therapy. This can be done by seeing a physical therapist
or physiotherapist who specialises in pelvic pain.
I personally was super hesitant to see a pelvic physio following my first
surgery because everything I’d heard about it sounded pretty invasive. By
everything, I mean the constant reference to kegel balls which, by the way,
are not beneficial for people with endo so if you’re ever told to use one,
RUN! It also didn’t help that the random bulk-billing GP I saw admitted
they didn’t know of any highly regarded therapists. Extremely comforting!
It wasn’t until I returned to Melbourne in 2019 that I started seeking
recommendations via endo support groups and found Alison Harding, a
physiotherapist with a Graduate Certificate in Pelvic Floor and Women’s
Health. I left our first consultation feeling so relieved that I was in the hands
of someone who practised in such an informative and caring manner. What
I also love about my sessions is that I have gained a greater understanding
of the pain process within my pelvic palace. Being aware of how the
muscles work and respond makes me feel so much more in sync with my
body and I find that really comforting. So, say hi to Ali! She has answered
some questions to help you form a better understanding of her field.

What is the role of a physiotherapist and pelvic floor therapy in

managing endometriosis?
Physiotherapists provide a whole-body approach to assessment and
management of endometriosis. The journey will often start with taking a
thorough history and listening to the person’s story. As many who have
experienced endo will know, this can be quite a long and winding road and
an individual’s story helps us, as physios, to develop a strong sense of
possible contributing factors and a path in to start promoting new learning
and change with our bodies and pain system. Pelvic floor physios will
assess a number of systems within your body. This can involve your
musculoskeletal system (muscles and bones/joints), your pain system
(central nervous system), your whole nervous system, your bladder and
bowel health, your sexual health and your exercise history.
When it comes to endometriosis, what can sometimes be overlooked is
how our body and its protective pain system respond to the ongoing tissue
changes that occur in the pelvis as a result of the condition. Our pain system
is our warning or alert system, and we know sometimes in cases where
people have experienced longer term pain, it can become sensitive and extra
protective. This can result in the body misinterpreting general sensations as
painful (for example, someone lightly touching your stomach or pelvis).
What we also know is that our muscles, bones, joints, ligaments and nerves
are very good at protecting us. When this becomes maladaptive, it can result
in dysfunction in many muscles around the pelvis, including the abdominal
muscles, your hip muscles, lower back muscles and certainly the internal
pelvic floor muscles. Over time, these muscle groups can become tense and
protective, leading to poor coordination and relaxation, in turn leading to a
number of symptoms which can include issues with bladder and bowel
emptying, painful intercourse and pelvic pain. This muscle tension can
contribute to the pain experienced with periods.
By assessing any musculoskeletal changes and using a number of tools to
evaluate the sensitivity of your pain system, we can start working together
on treatment and self-management strategies. Many people are often
surprised by the relief that can be achieved from treating these broader
musculoskeletal issues and addressing your pain system changes.
Physiotherapists are strong advocates of informed care and provide
education to empower and promote self-management strategies, working
with you and your other health professionals to provide a true,
multidisciplinary team approach.
Whether you have had surgery, plan to have surgery or if surgery is not
an option for you, assessing and treating your whole body will help aid
recovery, prepare you for surgery, and in many cases can be an effective
option to help you understand your pain, take back control and dramatically
improve your quality of life.
Treatment usually involves a number of options and can include:
resources to explain and understand your pain, manual therapy or hands-on
treatment techniques to address any of the aforementioned findings, pelvic
floor down-training or relaxation strategies, pelvic floor muscle release,
dilators (or trainers)—which are used to desensitise the pelvic floor muscles
to information they are receiving, bladder and bowel health education and
advice on emptying and mechanics, sexual rehab specific strategies and
general exercise and lifestyle advice. As this is a complex condition with
many facets, not all of this will be relevant to every person with endo and
everybody’s starting point will be different!
How do I know if I need to see a physio and how would I go
about finding the right person?
In my (perhaps biased!) opinion, almost all those with endometriosis could
learn and benefit from seeing a pelvic health physiotherapist. It can be very
empowering to learn about the connections within your own body and the
relationship endo has with other structures in the body.
If you have experienced symptoms including pelvic pain, abdominal,
lower back and hip pain, painful intercourse, vulval pain, bladder issues
(including difficulty emptying, pain with emptying, frequency and
urgency), bowel issues (difficulty emptying, constipation, pain with a bowel
action, bloating and gut concerns) and difficulty engaging in your regular
activities such as exercise and work, then it is likely that a pelvic floor
physio would be able to help!
When it comes to choosing the right person as your physio, it is
important to find someone who has experience in treating pelvic pain and,
equally importantly, someone who fits well with you. Your therapist will
form an integral part of your care team, therefore, it is crucial to find
someone who you will be able to work well with so you feel confident that
you are seeing progress with your treatment.
Often GPs, gynaecologists and other specialists will be able to refer you
to someone within your local area. There are also a number of websites that
list physiotherapists in your area with experience in pelvic health, including
CFA Physios Victoria and the APA (Australian Physiotherapy Association).
Some public hospitals have specialised pelvic pain clinics and the Jean
Hailes Foundation also has a pelvic pain clinic with a multidisciplinary
team, including physiotherapists. If you are part of any support groups, you
will also often be able to find recommendations from other members.
At the end of the day, the most important thing is finding the right person
for you. Someone to have in your corner and to form part of your team!

What does the first appointment typically involve?

The first appointment will start with taking a history and talking through
your concerns. People may present to a physio at any stage, so it is
important to gauge what their current goals are, in order to direct treatment.
Pelvic floor physios understand that you are the most important person in
your care team. We aim to work together, with you, to establish goals,
suitable and reasonable treatment options, and support to allow you to
improve your quality of life. By adopting this model of patient-centred care,
we find we are able to individually tailor treatment options, promoting more
successful outcomes. There is no one-size-fits-all approach when it comes
to dealing with the wide world of endo.
A physical examination will usually occur over a number of sessions and
can include: an analysis of your movement, including lower back, hips and
pelvis, the quality and function of muscle groups within your body and
often, at a time that is appropriate, a pelvic floor muscle examination, which
is usually an internal vaginal examination. Care will be taken by the physio
to ensure the examination is done in a timely manner for each person and
you will be talked through each step of the process. These examinations
help inform your treating therapist of the condition of your muscles in order
to allow more targeted treatment and can also provide invaluable feedback
about your own body—so you can again start to regain control and learn
how to make the appropriate changes!
These assessments and examinations all help to develop a tailored
treatment approach, which is the best way to achieve optimal outcomes. If
you don’t feel something is relevant to you, have this conversation with
your physio! We are very good listeners and we know the best outcomes
come from working together in a collaborative approach.

How frequent would visits need to be and when do people

typically start to notice changes?
Everyone’s path is different and we often describe the journey as one with
small speed bumps along the way. However, a generalised treatment
program would usually start with a series of approximately fortnightly
appointments (taking into consideration a number of individual
circumstances), for between three and twelve months, and then likely
progress to monthly appointments and ongoing reviews as required. As with
all things endo, the symptom spectrum is enormous and some may require
far less physio, others may be involved with physio for longer, depending
on the degree of contributing factors that can be addressed by
physiotherapy.
 What we often notice is that people experience small progressive changes
and we would expect to see this from the beginning of our journey together.
Our goal is to establish a new baseline within your body and build on that,
with foundational and functional steps until we reach your goals. As you
will be learning a lot about how different parts of your body work and
interact, many people are amazed by the things they didn’t know! It can be
transformative and empowering to have a new-found awareness, confidence
and understanding of your pelvis, and this will open the door to reclaiming
this part of your body.

Endometriosis is a costly condition to manage. Do you have any

tips for people who may not be able to afford regular consults or
things we could do at home to support our pelvic floor?
One of the most beneficial things is to discuss with your GP the option of
an Enhanced Primary Care Plan. While everyone may not be eligible, it can
sometimes be an option for people and provides a Medicare rebate for a
certain number of sessions, which is very helpful to ease some of the
financial burden. We are also fortunate to have many excellent public health
clinics and facilities in Australia that can be accessed through referral by
your GP. There are many valuable resources on the internet, including
Endometriosis Australia, Jean Hailes, EndoActive and guided pelvic floor
relaxation videos/recordings, etc which can be a nice starting point for
learning about your pelvis.
If you can be connected with a pelvic floor physio, they will often be able
to tailor a treatment program to suit your constraints, where you can learn a
lot and get started. It’s amazing what a difference a session or two can
make!

What forms of exercise would you consider to be endo-friendly?

Everyone is different and what works for one person may not be appropriate
for the next. We are often recommending exercise routines that promote
functional use of ‘core’ muscles—including abs, lower back and pelvic
floor. For many people, gentle forms of yoga, encouraging lengthening,
breathing, opening and stretching can be very useful. We also find many
people with endo often respond well to low-impact exercise, which helps
release happy hormones and utilise your brain’s own in-built drug platform
but doesn’t reinforce unhelpful and maladaptive movement patterns within
your body. Some examples are walking and swimming.
Clinically based Pilates, particularly if run by a physio with an
understanding of pelvic pain, can be a helpful and functional way to retrain
these muscles and allow you to functionally exercise well. It can be the case
sometimes that too much Pilates can be reinforcing lots of ‘core’ tension
and other exercise forms may be more appropriate. This is something your
physio can help to guide you through.
At the end of the day, if you are engaging in movement and exercise that
feels good for your body, there is no need to stop, and if there are things
you aren’t sure about or know definitely contribute to flare-ups, it is worth
exploring other options with your physio.
Extra resources
As Alison mentioned, your therapist should be able to tailor a treatment
program to suit your constraints and this should consist of exercises you can
do at home. There are a number of stretches designed to relax the muscles
surrounding the pelvic area and you can find them on many websites like
The Pelvic Pain Foundation of Australia. Try to do these daily—I
personally incorporate these stretches into my morning routine and it feels
like a nice way to start each day. Remember, it’s not a quick fix but it does
make for a good start in releasing muscle tension and cooling the central
nervous system.
Start with some controlled, deep breathing. This will help relax the
muscles and put your body in a state of calm. I call this going into butter
mode. No, really. I do my deep breathing and I visualise my body going
into a butter state, my muscles melting (relaxing). It works a treat!
A mini pep talk on exercise …
I know, I know. When we’re in pain, the last thing we want to do is
exercise. Often our immediate perception or idea of exercise is something
that is high intensity and triggering to our pain, so naturally we have a
negative association. I’m not here to say, ‘Let’s go smash some sprints and
burpees before a decathlon!’ Personally, not my jam, but if you want to go
do that, power to you. As Ali mentioned, there are a number of low-impact
movements that work well for people with endo and they can do some
pretty good things for us! Some benefits of exercise include:

Increasing anti-inflammatory and antioxidant markers within the body.

Reducing estrogen levels.
Happy hormones! Honestly, I think this is the best thing about
exercising. When I go on my walks, I do it to feel good, not to lose
weight. Endo can be quite a hit to our mental wellbeing, but exercising
is a nice way of producing natural endorphins and giving us a mood
boost.
Motion helps the motions! For real though, exercise reduces the time it
takes for the food you eat to pass through your large intestine. In turn,
this limits the amount of water that gets absorbed from your stool into
your body. The less water that your body takes from your stool, the
easier it is for you to pass it and the more regular your bowels become!

Top tips for movin’ that bod

Do something you enjoy! Maybe it’s dance classes, aerobics, a swim or
cycle. Abso-freakin-lutely stick with the exercise that makes you feel
good because that’s the first step to true health.
Pace yourself. Especially if you are trying a new form of movement. It
might take a bit of trial and error in figuring out the most suitable
intensity and duration. Keep in mind this could also change throughout
your cycle so keep track of what you’re doing, when and how it feels.
 Don’t compare yourself! Just because you see someone else with endo
pumping some hard iron doesn’t mean you need to. Everybody is
running their own race.

What’s the deal with yoga anyway?

Some of us endo warriors can’t help but eyeroll when we hear this word
because there’s a lot of unsolicited opinions out there from people who do
not have endo, but ‘have a friend’ whose endo was ‘cured by yoga’. While
this can never be true, I don’t want to fully knock this practice because it
does in fact offer some benefits. (Not a cure.)
In their book Beating Endo, Dr Iris Kerin Orbuch and Dr Amy Stein
discuss the effect of yoga on the vagus nerve. The what? Don’t worry, I had
no idea the vagus existed either but turns out it’s the longest cranial nerve in
our body and look, she’s a social butterfly! Vagus interacts with basically
everyone and everything, linking the brain stem to the heart, lungs and gut.
All the key organs know her and whatever we do, vagus has some sort of
involvement.
Orbuch and Stein spoke with Dr Ginger Garner who said there are five
mechanisms of pain that yoga can alleviate via the vagus nerve:
inflammation, the sympathetic nervous system, oxidative stress, brain
activity and opioid receptors. Dr Garner explains:

The more we influence the vagus nerve through yoga, the less we
experience inflammation. Where the constant perception of pain
is concerned, yoga’s influence on the vagus nerve can actually
reverse the perception by combating the blood vessel constriction
and muscle tension that chronic pain induces. All this plus its
ability to influence the opioid receptors without pharmacological
compounds make yoga’s influence on vagus nerve activity
incredibly valuable.

In 2017, Brazilian researchers randomly divided 40 women with endo

into two groups: those practising hatha yoga and those going about their
regular lives. For two months, the yoga group attended two 90-minute
classes each week. At the end of the study when the two groups were
compared, the women doing yoga reported significantly less daily pain, as
well as an improved sense of wellbeing.
I’ll leave this one with you but whether it be for movement or
mindfulness, the concept of yoga is definitely a ‘don’t knock it until you try
it’ kind of thing when it comes to pain management and relief in pelvic
health. If you do decide to try it, I’d suggest Hatha yoga as it is much
gentler than the likes of Ashtanga. I strained a muscle during Vinyasa, lol.
But, hey, each to their own!
 7

Mental health matters

So, you’ve been diagnosed with an incurable chronic condition after

experiencing what has likely been years of pain and dismissal from medical
professionals who have perhaps made you feel like it’s all in your head, as
well as a lack of understanding from those in your personal and/or
professional life which in turn has made you feel like a complete burden,
and now you’re faced with the uncertainty and anxiety that comes with it
all, like whether you can have children or if you will ever been pain-free.
*exhales* It’s a lot to take in, isn’t it?
The pain of endometriosis doesn’t start and end with your period. So
often, we focus on the physical consequences of this disease, but it is
important to also recognise the mental and emotional toll endo can take.
Admittedly, I never considered this until I attended the RANZCOG Annual
Scientific Meeting in 2019. It’s basically this big conference event full of
workshops, discussions and keynote addresses concerning the OB-GYN
world. There were a range of presentations including one session from
Associate Professor Christina Bryant called ‘The Role of the Psychologist
in Chronic Pelvic Pain’. In Bryant’s presentation, she explained the unique
position that psychologists are in to address some of the key concerns of
people with chronic pelvic pain and it was at this moment that I felt
Extremely Seen. Holy shit, endo has totally cooked my mental wellbeing.
Turns out that I’m not the only one feeling this way. A 2019 report
conducted by the BBC in collaboration with Endometriosis UK found that
out of the more than 13,000 participants, 94 per cent said that endometriosis
had affected their mental health. Nearly 50 per cent stated they have
experienced suicidal thoughts.
Sadly, I don’t think anyone with endo would be shocked to hear these
stats. Think about everything you’ve endured—that’s going to abso-freakin-
lutely affect your work, your relationships with others and, of course, the
relationship you have with yourself. Endometriosis can bring about so many
feelings and emotions, like the following.

Grief
Difficulty accepting your diagnosis
reduced quality of life due to the limitations that pain presents—losing
opportunities
mourning the person that you used to be and the relationships that may
have diminished throughout the course of your condition
unsuccessful attempts at conceiving
cancellations and delays to treatments/surgery.

Anxiety
Doctors not believing you and rejecting your symptoms/ pain
infertility
experiencing a new symptom
the thought of being away from home and in pain
uncertainty regarding the future, for example, having a job, a partner
and/or family
financial burden of the disease
fear of pain arising at any given time
fear of pain never improving
fear of constant judgement (usually dealt with through concealment of
disease)
fear of conflict (usually dealt with through self-silencing).

Guilt
Letting your colleagues down by taking time off or not being able to
complete all tasks due to your pain
letting your friends down by not being able to see them as often and
missing special events due to your pain
 letting your family down by possibly having to borrow money for
treatments or not meeting their expectations of success due to your
pain
letting your partner down due to lack of intimacy
becoming dependant on others
‘killing the mood’ when you open up about your endometriosis
struggles.

Confidence
Declining self-esteem and belief that you can do anything
negative relationship with your body due to changed appearance
(bloating, surgical scars) and functionality (fitness, painful sex, etc)
talking yourself out of pursuing goals or relationships
externalised self-perception (self-judgement based on external
standards).

Losing a sense of purpose

Lack of independency and identity
feeling that endometriosis defines you and the life you live.

Loneliness and isolation

Not being able to go out with friends, family and/or partner
feeling like no-one understands your pain or not knowing anyone else
who has endo
difficulty dating or making new friends
internalising pain.

Medical trauma
Being told by medical professionals that it’s all in your head or that
others have it worse than you, also known as medical gaslighting
 being misdiagnosed or declined the request to see a specialist
bad reactions to drugs or examinations, especially without true
informed consent
repeated ineffective surgeries and complications
unnecessarily removing reproductive organs
being deemed hysteric or difficult by clinicians.

These are just some of the ways in which endometriosis can impact you
mentally and the list is so huge that it really deserves its own book. And, of
course, your mental state is going to influence your physical wellbeing. As
Dr Pamela Stratton explains in the 2016 Endo What? documentary, there is
a real pain cycle when it comes to endometriosis.

Pain causes suffering, suffering causes depression, depression

can then feed back into pain and so, they are interacted on an
emotional-physical level. But they’re probably connected on a
biochemical and mind-body level as well.

For all of these reasons, it is vital to include our mental health in the
management of endometriosis.
But how do we do that? I’m going to take you through a few different
ways, starting with the most obvious—a psychologist.
A psychologist has a role to play throughout your entire endo journey,
from that moment of you questioning your pain, trying to find a diagnosis,
accepting the diagnosis and the challenges that may come with it, for
example, hysterectomy, fertility.

Psychologist versus pain psychologist … What’s

the difference?
Psychologists and pain psychologists are both allied health professionals
who specialise in the treatment of mental health problems and human
behaviour. But a pain psychologist focuses on the human behaviour that
accompanies chronic pain. There’s no right or wrong one to see, it really
just comes down to the psychologist themselves and whether you feel they
suit your situation.
Katie is 27 years old, from Melbourne and follows endogram. Unlike
most people, it only took her a year to be diagnosed with endometriosis, but
the process involved a great deal of research. One of the biggest discoveries
she made was how beneficial a psychologist was as part of her
multidisciplinary approach. She says:

It has honestly changed my life. My psychologist helped me deal

with a lot of anxiety that came with having an endometriosis
diagnosis, as well as the stresses before I was officially
diagnosed. She gave me a number of strategies to help me deal
with anxieties around the fear of what endo may cause me to miss
out on—especially being in too much pain to attend social events
and then let my friends or family down, or miss out on work
opportunities, or negatively impact my studies. She also helped
me realise that my pain was often worse when I was stressed, and
the importance of making sure I do everything I can do to
minimise general stresses in my life, and how that would help
with my pain levels significantly, but in an indirect way. Things
like making sure I exercise, eat well, drink a lot of water, get at
least eight hours of sleep—all of the things that are important for
your mental health that also happen to help endometriosis
symptoms!
 Katie has a unique perspective as she has also seen a pain psychologist,
an experience she described to me as both amazing and confronting.

Through appointments with my pain psychologist, I had to deal

with certain events and trauma in my past that turned out to be
linked to the pain I was experiencing. The body has a way of
storing and dealing with trauma that I had no idea about!
Through some emotionally taxing but very rewarding sessions, I
learned more about that and worked through a lot of feelings and
can say I came out of it much more informed, sure of myself and
comfortable with my past. This knowledge has also enabled me to
help a few of my friends who have experienced similar situations
and have talked to me about it, which I am grateful to now have
the knowledge to do.

In addition to this, Katie’s pain psychologist provided valuable insight on

the links between the brain and the body, which is something that Katie first
heard of in her regular psychologist appointments.

My pain psychologist taught me about the benefits of

visualisation techniques in meditation, as well as giving me a lot
of techniques to deal with the pain whilst it was happening. She
taught me that the way you frame the pain in your mind matters. I
recognised, with her help, that although I was experiencing pain,
because we knew the cause of the pain (endometriosis, of course)
and we knew that the pain wasn’t putting me in any danger, it was
not a threat, so it is better if I can deal with it in a more positive
way. My favourite thing that she taught me to do was to literally
talk to my uterus (out loud) when I am in lots of pain, and to say
to it that ‘I know you are feeling pain now, it’s just endometriosis
pain because the cells similar to your uterus lining are growing
places that they shouldn’t, it is okay and it’s not a dangerous
pain.’ I used to feel really silly when I did this and it definitely
makes my partner laugh, but I think it really helps!
 Elise, 28 and from Melbourne, was diagnosed with endo in 2011 and we
actually had our second surgeries on the same day by the same specialist!
For Elise, she found a regular psychologist to be the perfect fit. Elise says:

I would recommend shopping around for psychologists if you

don’t feel you connect in the first few sessions. My psych isn’t a
chronic-pain specialist and that may be helpful for some, but she
was just what I needed. She helped me stop feeling guilty about
my illness. Being a high achiever, I had negative feelings around
work and not being good enough or productive enough. I also
had issues with bailing on social events and feeling like I couldn’t
keep up with my friends. My psychologist made me see how self-
critical and downright bitchy I was being to myself and helped
me find ways to turn my thinking around. She made me realise
how important looking after myself is. She let me vent, justified
my angst and introduced me to coping tools to assist with my
anxiety—mainly based around understanding my thoughts,
breathing and meditation. I saw her up until February 2020,
before she went on maternity leave and now, I see a new psych
who is also wonderful. Seeing a psych turned my life around and
I think was one of the main tools I acquired that truly started the
healing process for my endo.

While it is super encouraging to hear the experiences of Elise and Katie,

it is an unfortunate reality for many people with endo that ongoing
consultations with a psychologist or pain psychologist are not financially
possible. With that in mind, I want to suggest some ways in which you can
help manage your mental health on a budget.
Suss out government assistance
This will vary depending on where you live, but in Australia, if you have
lived with chronic pain for at least six months you may be eligible for a
rebate through Medicare for allied health services to help manage your
condition. If you are experiencing mental health issues associated with
chronic pain, you may be eligible for a GP Mental Health Treatment Plan.
At the time of writing this book, Medicare rebates are available for up to ten
individual and ten group allied mental health services per calendar year to
patients with an assessed mental health issue who are referred by a GP. For
more information, visit the Australian Government Department of Health
website and speak with your GP.
Support groups and helplines
You will see this pop up a few times throughout the book because they are
honestly going to help you so much. If you can afford to see a psychologist
or pain psychologist, a great way to find local recommendations is through
the experiences of others shared on support groups. If these kinds of
consultations are outside your budget, utilise online support groups instead
because they can also serve as a safe, interactive space for you to seek
advice and connect with people going through the same thing. These
support groups can feel like free therapy!
If talking to someone on the phone is more your thing, there are a range
of 24/7 hotlines around the world that allow you to receive immediate
support anonymously. Even some endo organisations like QENDO and
Endometriosis UK have their own phoneline that you can call to speak with
a trained volunteer who has personal experience with endometriosis. While
they cannot provide medical advice, they can help answer any questions
you may have concerning the condition and serve as a listening ear. You can
find both their numbers in the Recommended Resources section of this
book.
Journalling
When I say journalling, I’m not referring to those after-school ‘Dear Diary’
entries we would often write about our BFFLs and crushes then slam shut
and padlock before anyone could see. BUT if you want to do that, I fully
back you.
For real though, journalling is a therapeutic form of self-expression that
can improve your mental wellbeing by helping you address problems, fears,
and concerns. By tracking symptoms daily, you can come to recognise
triggers and learn ways to control them better. Journalling also creates a
safe space for identifying and resolving negative thoughts. Even when you
don’t feel positive about your situation, you can still be positive to yourself
and journalling is a great way to practise that healthy kind of self-talk.
Mindfulness
Mindfulness is all about being engaged and aware of what is happening in
the present moment. No distractions, no judgement, just self-observation
and acknowledgment of the effects that certain thoughts have on your body
and mind.
Let’s say you’re sitting in a park, for example. Instead of sitting there and
thinking about your last doctor’s appointment, what to cook for dinner and
when you are due for your next period, you are thinking about … sitting in
the park! Feeling the grass beneath you, the sunshine radiating from above
and taking in the sights and sounds. You are fully present, not thinking
about anything else in your life, just what is happening right here, right
now. By teaching the mind to be present, we are teaching ourselves to live a
life that is more mindful and less reactive.
Mindfulness is poppin’ right now. In 2019 alone, there were 1449 studies
on mindfulness published in peer-reviewed scientific journals. It seems like
a pretty basic concept on first glance, but mindfulness is not a habit that can
be developed overnight. If you are seeing a psychologist, they may like to
try Mindfulness integrated Cognitive Behavioural Therapy (MiCBT). It’s
pretty self-explanatory, MiCBT blends mindfulness with some basic
elements of Cognitive Behavioural Therapy (CBT) in order to help improve
the way we feel and change unhelpful behaviours. However, MiCBT
focuses more on changing the process of thinking, not just the content of
our thoughts. As outlined by the MiCBT Institute, this is done over four
stages:

1. Personal stage—notice and let go of unhelpful thoughts and emotions

in order to address life’s challenges successfully. Develop insight and
realise that you don’t have to be prey to every thought that enters your
mind and every emotion that you feel.
2. Exposure stage—apply these self-regulation skills in situations that
you might be avoiding, which will result in an increase in self-
confidence.
3. Interpersonal stage—develop better interpersonal understanding and
communication skills when encountering tense situations with people
 and learn to not react to how someone else may respond.
4. Empathic stage—increase your capacity to be kind to yourself and
compassionate with others in your daily actions, this leads to a greater
sense of self-worth and deeper care for others.

Another way to practise mindfulness is through meditation. Find a

comfortable position, focus on your breath and, if you need assistance, fear
not: mindfulness is only a swipe away! There are dozens and dozens of
phone apps out there that specialise in mindfulness meditation. It can be a
bit overwhelming to navigate but here are a few to get you started:

Smiling Mind—a free Australian meditation app that has been

created by psychologists and educators and is designed for both
adults and kids.
Headspace—described as ‘meditation made simple’, this app has a
very personalised approach in allowing you to pick sessions that
best suit your mood and lifestyle. It requires a paid subscription but
starts with a ten-day beginners’ course.
Calm—a very popular American app for sleep, meditation and
relaxation. Like Headspace, it involves a paid subscription but for
that you get Harry Styles narrating a sleep story so … *throws
money*

While we have seen the topic of mental health become more normalised
in recent years, there is still a stigma attached—especially when it comes to
seeking help. Doing so is not a sign of weakness or that you are broken. I
know many people who are generally quite positive and successful but still
take time to speak with a psychologist or turn on a mindfulness app. Why?
Because happiness doesn’t end sadness. We are all works in progress and
just because someone is high functioning, it doesn’t mean they aren’t
struggling in some way. As my friend Claudia once said, the reality is that
endometriosis is a scary, all-encompassing mind-fuck and we shouldn’t feel
ashamed to admit we aren’t always coping.
 8

Let’s talk about sex, bby

Sex. It’s supposed to be a steamy little word, isn’t it? One of excitement,
curiosity and pleasure. Fun and adventurous. The ultimate way for humans
to connect. I wish those things were my initial thoughts but usually my
mind is occupied with anxiety and dread. I get tense. I think of the need to
be drunk in order to deal with that painful, pulling sensation. Or the
building pressure from my vaginal canal that quickly extends to my bladder,
sometimes even my abdomen. It can get so bad that even for hours
afterwards, I’m curled up in foetal position, deflated and full of frustration.

‘Being punched deep in your intestines.’

‘An open wound being rubbed with salt.’
‘As if my uterus is trying to climb up my body.’
‘Pulling, like knives cutting in.’
‘An abrasive dull pain, like if someone pushed on a serious bruise but
worse.’

Those are some ways my endogram followers have described their

painful sex. For many people with endo, this is our normal. No endless, hot
and heavy action. Just uncomfortable attempts that we would rather get
over and done with.
For the majority of my sexual life, I just thought I was the problem. That
my body was failing me by not being cut out for sex and that I simply
couldn’t handle it. I had no idea endometriosis existed, let alone its strong
association with painful sex. Up until my diagnosis and research I, like so
many, accepted this as something I would just have to deal with.
 As we learned earlier, the medical term for pain with penetrative sex is
dyspareunia. When there is penetration during intercourse, the endometrial
implants within the pelvic cavity can stretch, pull or push. And you bet ya
bottom dollar it hurts. Our bodies then respond to this pain by clenching up
which unfortunately promotes more pain. The sensitivity of the nerves is
heightened and the next thing you know, the brakes slam and sexytime
suddenly comes to a halt. Didn’t take long, hey?
All of this can have such a devastating impact on our self-esteem, our
body image and our relationships. You can’t help but feel useless,
unfulfilling to your partner and, frankly, like a sad sack of shit. But there is
hope! Improving sexual function is a legitimate health issue and a complex
one that requires attention from physical, psychological and social
perspectives. Therefore, sex is a key component in the management of
endometriosis and, thankfully, there are people out there who Just Get It!
Like Chantelle Otten, a Melbourne-based psycho-sexologist, scientist and
relationship expert. Thanks to her strong social media presence and
approachable nature, Chantelle has helped normalise some of the
conversations surrounding sex, particularly when it comes to pelvic pain.
So here she is to answer some of your (literally) burning questions.

Why should people with endometriosis consider adding a

sexologist to their multidisciplinary team?
Sex can be difficult to manage with endo due to pain, fatigue and
discomfort, so a sexologist is here to help you manage those difficulties.
One of the key indicators of endo is pain with sex, and that can be
devastating for a lot of endo warriors and their partners. It’s my job to help
manage this with them, minimise discomfort and open their minds up to
great ways they can have pain-free sex! It’s really about redefining what sex
means to you and how to create the best journey for you.

What can people expect from their first consultation with a

sexologist and how does it differ from a psychologist?
In the first session, we will have a really healthy conversation where I take
a detailed history of your overall health, mental health and sexual history,
plus establish why you are coming in for a consultation now. We then make
goals, such as ‘I want to have pain-free sex’, and we work towards those
goals together. A sexologist differs from a psychologist in that there is a lot
(A LOT) of collaboration and education about sexuality. Psychology is the
study of the human mind whereas sexology is the study of sex and
sexuality, but usually from a psychological background.

What are some ways in which a sexologist can help people with
endo overcome the association of pain with sex?
As we have established, painful sex is a common side effect of endo, which
is awful. But the great news is that there are numerous ways to alleviate the
pain, and also to help manage intimacy expectations, so you can still have a
fun, pleasurable sex life. Having an endometriosis diagnosis doesn’t mean
you need to lead a life of celibacy and my role is to provide support,
education and empowering advice in overcoming this negative relationship
between sex and pain.
Pain is a cycle, so if you have experienced painful sex, your brain
associates that area of your body with feelings of distress and discomfort.
The way in which we counteract this is through developing a pleasure
cycle. I do this by working with a pelvic floor physiotherapist to see if we
can adjust the tightness of your pelvic floor and also working with the mind
around reconditioning that area so it is not associated with fear and pain.

What advice would you give to someone with endo who is single
and having (or wants to have) casual sex?
Honestly, don’t be scared to date and to have casual sex. I suggest you take
the time to really get to know your body, what you like and don’t like, so
that you can lead your erotic encounters to make sure they are pleasurable,
not painful. Then, just keep it real when you are on dates! Tell them that
you may experience pain with penetration and the ways that you navigate
around it. But I beg you, do not push through with having painful sex,
because it will make your body tense up more and the pain will increase. If
your sexual partner is not willing to accommodate your needs, then …
maybe that is not the person for you. Considering it is casual sex, you have
the ability to find someone who will make you feel like a babe and treat you
with respect.

And for those with endo who are in relationships and struggling
with sex?
It’s okay for you both to feel a little disappointed if your sex life is
struggling due to endo and your partner should be supportive and not
pressure you. Sex is often the hardest thing to talk about with your partner
so it’s important to be kind to each other. Your pain, while absolutely valid,
may lead to your partner feeling rejected and undesired. As a result, there
may be some performance anxiety from both sides which can interfere with
having fun in the bedroom. I believe you should see a sexologist (like me!)
to help you navigate this, because it’s a tricky topic for anyone.

Chantelle and Bridget’s tips for an endo-friendly

sex life
Communication is key
Communication really is the foundation of a healthy sex life. Experiment
with your partner to find positions that don’t hurt. From modified doggy-
style and spooning to oral and anal sex. Even kink or roleplay! The way you
share your fears and desires is important as well so be conscious of wording
and if you get stuck, book a sexology session.

Penetration isn’t the only pleasure

It’s really about redefining what sex means to you and in many cases,
penetration is just a no-go. This is completely fine; there are lots of people
who have non-penetrative sex lives and still feel amazing and satisfied! Be
open to changing your idea of sex and embracing other practices like
‘outercourse’, which is non-penetrative intercourse. This includes manual
stimulation, pleasure products and oral sex. You can still orgasm from long,
hot, drawn-out foreplay!
Let’s be real, foreplay is the main play. Warming up is so necessary and it
can start in many ways—whether that be a sensual massage with a happy
ending or a huge make-out session. Remember that you are there to enjoy
the journey, not just the destinations of penetration or orgasm.
Toys and tools
This is a particularly fun part! It’s super important to explore other types of
pleasure that are not intercourse focused and, luckily, the market is pretty
huge when it comes to finding some great pleasure products, whether that
be a clitoral vibrator, nipple clamps, anal beads or a male masturbator.
Whatever tickles your fancy!
Another option is buying a product like Ohnut which controls the depth
of penetration that a penis can have. Using a pillow or a sex wedge can also
help control your positions and avoid angles that are typically painful.
Beaded glass dildos can be cooled or heated—you may find a chilled toy
can bring relief to an inflamed pelvis. It’s as easy as popping one in the
fridge or running warm water over it.
Finally, lube it up, bby! Lube makes everything better and the more the
merrier. Try for a water- or silicone-based lubricant—water is super
versatile while silicone is hypoallergenic, so most people won’t experience
a reaction.
Explore your erogenous zones
An erogenous zone is an area of the body with heightened sensitivity that
can produce a sexual response when stimulated. The first area that springs
to mind is, of course, our genitals, but there are so many throughout our
body, such as your scalp, ears or even your inner wrist. Make a map of
pleasure in your body, get to know these spots and tell your partner where
to find them! It’s the perfect way to enjoy more levels of intimacy.

Scalp—Whether it’s a gentle stroke or a playful pull, hair is the

gateway to all those glorious nerve endings in the scalp. Don’t forget
that spot between the ears and neck for some soft caressing.

Ears—A simple way to enhance some traditional mouth kissing is by

lightly tracing the C-shaped outline of the ear with your fingertips at
the same time. Or have a cheeky nibble of the earlobes, gently pulling
with your teeth. Deep breathing into the ear is a winner if you love a
bit of ASMR.

Nape of the neck—All it takes is some running fingertips, soft kissing

or breathing across the nape of the neck to make the whole body
tiiiingle.
 Armpits—We know the armpits can be ticklish … and sweaty. And
hairy. But! They’re still a sexy spot! Try rubbing an armpit in circular
motions or do a little graze. Need a visual? Watch Dirty Dancing:
Baby and Johnny have you covered.

Inner wrists—Lightly caress them with your fingertips if you’re

feeling suggestive, or if you’re already in the thick of it, a feather, kiss
or lick can help take things up a notch.

Fingertips—A gentle nibble or light suck is steamy AF, especially if

eye contact is being held.

Stomach—Given its close proximity to the pelvic region, the stomach

is a total tease. Have fun with your tongue, fingertips or a feather to
trace circles around the navel.

Lower back—The nerves in the small of your back (sacrum) are

connected to your pelvis, so this a particularly sensitive region for
sexual stimulation. It’s also a great spot to experiment with
temperatures, whether that be with ice cubes or a heat pack.

Butt—Often there is an immediate association with anal penetration,

but less invasive sensations such as a light caress of the outside skin or
even doing some gentle fingering can be a great way to activate those
numerous sensitive nerve endings inside your anus.

Back of the knees—An unexpected hotspot, the back of the knees is

perfect for a light massage, tickle, kiss or lick. Even a gentle bite could
set you off!

Timing
Did you know that the timing of your period can help identify what stage of
your cycle is most painful? Some people may be friskier after their period
whereas others are keen to get into it pre-period. It differs for everyone and
may take some trial and error, but it is definitely worth tracking. To help
with this, try a phone app like Flo or QENDO.

Hopefully these tips can help you navigate sex with endometriosis, but for a
more personalised experience, booking in to see a sexologist like Chantelle
is your best bet. And, hey, you don’t need to be in a relationship or be
having casual sex to see a sexologist, you can go purely for your own needs
if solo sex is more your thing. Remember, the most important relationship
of all is the one that you have with yourself. While it may feel like it at
times, having endometriosis does NOT mean that you are broken in the
bedroom. Sex is such an open concept and means different things to
different people. There is sex that will suit you, it’s just a matter of finding
it. Having endo doesn’t make you less loveable or desirable and it’s a big
Thank U, Next to anyone who dares to make you feel less than worthy.
Whatever you do, do not settle. You deserve someone who loves ALL of
you. That person will not be burdened by your pain, they will instead see it
as strength. They are out there, I promise!
 9

You are what you eat

If endometriosis was a food, I reckon it would be an onion.

I mean, it’s not like endo has a strong smell, but there are plenty of eye-
watering qualities about it. Not to mention the layers, it’s never-ending! The
more you unpeel this condition, the more you want to cry, and there’s one
particular layer that I have been dreading to touch until now—diet.
*Gulps* Yeah, that old chestnut. Turns out food is a big factor in how we
manage our endo given the inflammatory nature of the condition. Therefore,
what we eat can really influence our pain, whether that’s fuelling symptoms
or calming them down.
I’ll be honest, dieting has never been my thing because I tend to associate
it with restriction, pressure and misery. Growing up, I only saw the d-word
used in reference to weight loss and being skinny. It was always about
limiting or forbidding particular foods in order to meet society’s expectation
of what you should look like. However, as the years have passed, I have
come to understand the true value of nutritional planning and ensuring our
bodies are getting what they need for optimal health. When it comes to
endometriosis, you are what you eat. If you’re gonna smash down a highly
processed, fatty feed, you’re probably going to flare-up due to the
inflammatory properties and formation of extra estrogen. Yet cruciferous
green veggies (for example, broccoli, bok choy, etc) can help metabolise
that excess estrogen.
Marika Day is a Sydney-based nutritionist and dietitian who specialises
in gastrointestinal disorders and gut health. She’s worked with many clients
who struggle with digestive issues such as Irritable Bowel Syndrome (IBS)
and those who are trying to overcome emotional eating, lose weight or
manage symptoms of endometriosis and PCOS. Marika not only takes a
bullshit-free approach to healthy eating but is a firm opponent of
eliminating or forbidding foods from one’s diet. And as a serial lover of
chocolate, chippies and chicken nugs, that is music to my ears.
According to Marika, there are multiple benefits to incorporating a
dietitian or nutritionist into our multidisciplinary team. Marika says:

A dietitian can not only help you eat a healthier diet and help you
make changes that are realistic and sustainable for you but they
can help pinpoint any foods that may be acting as triggers for
symptoms. A dietitian can also be a great source of credible
knowledge on the role of diet in endometriosis as it is easy to get
lost in the misinformation found online.

Further to this, a dietitian or nutritionist can help determine your nutrition

profile and eating behaviour. It’s simply not realistic for me to provide you
with a set of rules or commandments to follow because there is no one way
to go about eating for endo. Everyone has different needs and varying
symptoms but here’s Marika to answer some of the most common diet-
related questions that have been posed to endogram.

What can people expect from their first consult with a dietitian or
nutritionist, and how do we know we are seeing the right person?
In a typical initial consultation with a dietitian or nutritionist, they will aim
to get to know you and your circumstances in detail. This will often start
with many questions about not only your diet but also your lifestyle, your
medical history and any details about your day-to-day life, stressors and
challenges that influence your food choices. You will likely be asked about
your bowels and any gastrointestinal symptoms you experience. For me as a
dietitian, it is about painting a picture of what the person is going through,
what led them to this point and listening to them in order to pick up key
details along the way. Within the first session, you and the dietitian will set
goals and determine the order of priority if there are multiple concerns or
goals. Often within the first session, the dietitian will also provide you with
some information on how diet plays a role in the condition and will talk you
through the plan for future appointments.
 I believe, as with any medical or health professional, that the relationship
you have with the individual is the most important thing. If you do not feel
heard, if you don’t feel comfortable sharing details of your life, diet or
medical history with that person, then they likely won’t be a good fit for
you. The right person is the person who you trust, who has the knowledge
to be able to assist you and that you feel supported and comfortable with.
Also, it may be worth flagging with the dietitian before your appointment
that you are coming to discuss diet and endo so they are aware and can let
you know if they are not the best dietitian or nutritionist to speak to on that
matter.

What foods should we avoid?

I am a strong believer that we don’t need to completely eliminate foods or
have forbidden foods, unless of course you are allergic. For many, this
mentality can lead to bingeing on or overconsumption of these foods later,
and in general a poorer relationship with food. It is still important, however,
that we focus on choosing healthy foods that provide us with benefits most
of the time. This means choosing more whole, minimally processed foods
like fruits, vegetables, wholegrains, and lean proteins, and minimising the
intake of refined and processed foods like crisps, sweets, baked goods, take-
aways, fried foods, processed meats and sugar-sweetened foods or
beverages.
Some people will find that certain foods or types of foods may increase
symptoms of bloating, pain or lead to changes in bowel movements—these
foods may include products high in lactose, like dairy products, or
containing high amounts of wheat. It is important to note that this isn’t the
case for everyone and if you suspect that certain foods are causing a
worsening of symptoms then working with an accredited practising dietitian
can help you identify which foods may be causing this and the tolerable
quantities for you.

What are the main foods that are considered endo-friendly?

While technically speaking, there is no ‘endo diet’ or ‘endo-friendly foods’,
what we do know about endometriosis is that there is inflammation
occurring locally and that consuming a healthy, anti-inflammatory diet, like
the Mediterranean diet, may be beneficial. The Mediterranean diet is one
that is rich in healthy fats like extra virgin olive oil, nuts and seeds and oily
fish. It contains plenty of fresh fruits, vegetables, and wholegrains, while
limiting red meat and processed or refined foods.
When it comes to digestive discomfort and symptoms of bloating or
cramping, it is easy to quickly jump to blaming certain foods as the cause.
However, with conditions like endometriosis, we want to ensure that foods
aren’t getting cut out unnecessarily. Endometriosis sufferers will often have
symptoms of bloating and cramping as a result of the endo itself and the last
thing we want to do is to burden someone more with a restrictive diet if it
isn’t going to offer benefits.

As for foods that might help relieve bloating or cramping, unfortunately

there aren’t any foods we can consume that will immediately relieve these
symptoms however peppermint tea can be quite useful. When it comes to
diet, it really is about eating healthy, balanced Mediterranean-style foods
and minimising the intake of anything that may trigger symptoms.

The term ‘low FODMAP’ has been thrown around a lot in

support groups. Could you please explain what that is and how it
could potentially help people with endo?
The low FODMAP (Fermentable, Oligosaccharides, Disaccharides,
Monosaccharides and Polyols) diet is a diet that eliminates foods that are
high in short-chain fermentable carbohydrates. These types of fermentable
carbohydrates, while incredibly good for our gut, can lead to excessive
bloating, discomfort, pain or changes in the bowel for some people with
Irritable Bowel Syndrome (IBS). It is a diet that is only intended to be
followed for a short elimination period, followed by a reintroduction phase.
There is a large overlap in symptoms of IBS and endo and many people
are diagnosed with both endometriosis and IBS at the same time or
separately across their lives. It is for this reason that people believe that the
low FODMAP diet is useful in endo and there is some research that is
beginning to show that the diet is incredibly beneficial in the way of
reducing symptoms in those who have both IBS and endo.
I think it is important to reiterate that it is not a diet that should be
followed long-term, especially for those with endo, as it is a very limiting
diet and restricts many healthy foods which are rich in prebiotics and
provide health benefits. My suggestion is if you are thinking about going on
this diet, speak with a dietitian who can help you move through the phases
and identify which FODMAP foods are your personal trigger foods.

How can we keep an anti-inflammatory diet fun and interesting?

I think it really comes down to the perception of what an anti-inflammatory
diet is. The best, most researched and healthiest anti-inflammatory diet on
the planet is the Mediterranean diet and when we think of the
Mediterranean diet it is incredibly diverse and abundant, especially with
flavours, herbs and spices. An anti-inflammatory diet certainly doesn’t need
to be a boring diet, my suggestion is to look for some recipes in books or
online to incorporate into your routine that are still delicious and fun while
being good for you. It is a misconception that healthy food needs to be
boring and flavourless.

There’s not only an emphasis on what we eat, but also how we

eat. What is the importance of gut/ digestive health, particularly
with endo … and how can we achieve that?
If we think about HOW we eat, this comes down to optimising digestion.
Often when we eat we are on the run, rushing a lunch break in between
meetings or sitting in front of the TV at night, binge-watching our favourite
show. Rarely do we take the time to sit at a dining table and eat slowly and
mindfully.
This mindless eating can have a big effect on our digestion because when
we are rushed or distracted, we often don’t chew our food properly.
Chewing is the first and a very crucial step in the digestive process. Without
proper chewing, we are making the rest of our digestive system work harder
to break down foods which can lead to bloating and discomfort. This is
particularly true for stress as well: if your body is in a stressed state or
sympathetic state, our digestion is affected. I highly recommend that
everyone, not just those with endo, eat meals while sitting at a dining table
with minimal distractions. Take the time to not just chew well but to enjoy
the food.

How do we go about figuring out which nutritional strategies

work best for us?
As with any nutritional strategy, there will always be a bit of trial and error
to determine not only what suits your symptoms best, but also what fits in
with your lifestyle and personal taste preferences or cultural needs. This is
why I am a big advocate of working with a dietitian as it can often be
overwhelming navigating the abundance of information online on your own
and deciphering fact from fiction. Additionally, if some nutritional
strategies are not carried out in a systematic manner or implemented
properly, you may not see the full benefits and this is where I often find
people jumping from one diet to the next, one strategy to the next, never
getting to experience the benefit of any and feeling frustrated that nothing
has helped.

How long does it typically take for people to notice a change

within themselves?
When people make a change to their diet, we often see that within a week
or two, they begin to feel better. Whether that be more energy, less severe
symptoms or just feeling more confident within themselves. Ultimately,
though, it will depend on the changes that you are making and your
intentions behind them. If you make a change to your diet because you feel
you ‘should’ and you hate every moment of that change, you will feel very
different after a week compared with if you are excited to embrace new
ways of eating, looking forward to trying new foods and recipes and are
optimistic about the change.

Endometriosis is a costly condition to manage, do you have any

tips for people who may not only be able to afford regular
consults with a dietitian or nutritionist, alongside more expensive
groceries?
Sadly, medical bills can add up and contribute pressure and stress to
circumstances that are already stressful enough. For those who might not be
able to afford consultations with a dietitian or nutritionist, it might be
worthwhile looking to credible sources online for information or programs
that come at a smaller cost. It is important not to end up spending money on
misleading information or products which not only cost money but don’t
lead to positive outcomes either. I think the best approach is having a
conversation with your specialist or GP about which avenues of care you
wish to incorporate and prioritise and put the money to services that you not
only value but have been shown in the research to provide some benefit.

What’s the deal with …

Gluten
There is no need to eliminate gluten in endo, unless of course you
personally find it is causing you digestive distress. Often when it comes to
bloating and digestive symptoms, unless you have coeliac disease, wheat is
the main culprit, not gluten. This means foods like spelt or rye are often
better tolerated, even though they aren’t gluten free.

Soy
Soy and soy products are rich in isoflavones which are phytoestrogens.
Many people believe that, because of the role of estrogen in endometriosis,
soy products need to be eliminated in order to reduce the occurrence of
endo. When we look to the research, though, there isn’t any evidence to
suggest that cutting soy products provides either symptomatic benefits or
reduces the likelihood of flare-ups. In fact there is some evidence that
shows that regular consumption of soy products can actually reduce the risk
of developing endometriosis.

Alcohol
In all circumstances, alcohol should be consumed in moderation and this is
especially true for people with conditions like endometriosis simply
because of the increase in symptoms like pain, bloating or cramps after
regular consumption or consumption of large amounts. You certainly don’t
need to completely eliminate it but moderation is the key.

Coffee
There is no evidence to show that reducing or cutting coffee plays any role
in endometriosis. Coffee does stimulate the bowels so can help people with
bowel movements, which might be of benefit or cause troubles depending
on how you find your bowels move normally.

Dairy
Like gluten, a common myth is that dairy needs to be eliminated for those
with endo. For some people, the lactose found in some dairy products does
increase digestive symptoms but for many this is not the case. Fermented
dairy products like unsweetened yoghurts can actually offer many health
benefits.

Sugar
It is a huge misconception that consuming sugar is bad for endo and that it
must be completely eliminated. Yes, we should certainly limit our intake of
refined sugars and focus on having a predominately whole-food diet, but
there is no need to demonise sugar.

Supplements (for example, turmeric tablets)

Curcumin, which is the active compound found in turmeric, has been found
to have anti-inflammatory properties which may be of some benefit in
conditions associated with pain. This research hasn’t been conducted in
humans yet and so it is hard to definitively say whether taking curcumin is
beneficial. We need some more data which informs us of how much is
required, how long to take it for and, of course, if it does have a benefit in
humans.

Intermittent fasting
Intermittent fasting can be carried out in many forms but when it comes to
endo there is no benefit, unless of course it just simply is how you prefer to
eat. Depending on the type of fasting you do, it can be completely safe but
it certainly isn’t a diet we recommend for everyone.

Again, it’s important to reiterate that endometriosis is so individualised and

everyone is going to have a different nutrition profile but hopefully these
general tips can help get you started on some new strategies. Remember, it’s
about creating a plan that can hold up to the lingering nature of endo. There
is no one, universal way to go about it. It will more than likely take time, a
bit of trial and error and that is okay. Plus, food should be varied and fun!
Just because we have a chronic illness, doesn’t mean we can’t still enjoy
what we eat. So, if you don’t mind me, I’m just going to finish my last nug
…
 10

Complementary therapies

First, if you have made it this far, you definitely owe yourself a treat.
Second, can you believe how much there is to do for effective management
of endometriosis? I can hear my wallet weeping at the bottom of my tote
bag, especially after mistaking the term complementary for complimentary.
What do you mean these therapies aren’t free?!
Despite this, remember that not everything works for everyone. Endo is
an incredibly individualised disease. Perhaps you’re already thriving in the
bedroom or maybe food doesn’t trigger pain for you. That’s awesome! But
if you’re still struggling and wondering what else can be done, this chapter
might help.
You may have heard of alternative therapies, but I personally refrain from
that phrase when it comes to endo because I don’t think there is anything
that should replace things like excision surgery or pelvic physio. We know
that endo has whole-body effects, so it is important to incorporate a range of
treatments that can work alongside each other.
As outlined by Dr Mike Armour for Endometriosis Australia,
complementary therapy is an umbrella term that covers a whole range of
therapies and remedies that are not part of mainstream medical care. It’s an
everchanging concept, as some therapies that may not have been previously
embraced by GPs are now something that they would recommend for your
health and wellbeing, for example, mindfulness meditation. Additionally,
what is considered complementary can depend on where you live. For
example, traditional Chinese medicine (TCM) is a mainstream practice in
its homeland but deemed complementary in Australia where Western
medicine takes the lead. However, more and more people are warming to
the notion that Eastern and Western medicine can work in harmony.
 I’m going to take you through some examples of complementary
therapies and it’s up to you whether or not you wish to pursue any for your
endo. Endometriosis requires constant work and people respond differently
to treatments. There is no one-size-fits-all approach to managing this
condition and, as always, consult a healthcare professional.
Chinese medicine
When I think of Chinese medicine, I think of my Nanna who had numerous
joint issues and loved seeking relief by having teeny, tiny needles poked
into her like she was a pin cushion. As a child, needles terrified me, so I was
always scared to go with her to these appointments. I couldn’t for the life of
me understand why anyone would want to do this—how could you
willingly take up to twenty needles AT ONE TIME? TO RELAX? It made
zero sense to 8-year-old Bridget but it’s a different story for 29-year-old me
who now knows a thing or two about pain.
To help us navigate this ancient form of medicine is Lauren Gannon, a
registered Chinese medicine practitioner and a member of the Australian
Acupuncture and Chinese Medicine Association. After completing her
Bachelor of Health Science (Chinese Medicine) degree at the Southern
School of Natural Therapies in Victoria, Lauren undertook an internship in
Taiwan at the Buddhist Tzu Chi Hospital. She now practises in Melbourne
and has a keen interest in pain management, gynaecology, fertility and
pregnancy as well as general health. I’ve been seeing Lauren for just over
eighteen months and while it is different for everyone, I’ve personally felt
improvements in my bloating and gut health as a result of acupuncture and
Chinese powdered herbs.
As Lauren explained to me, Chinese medicine has an ancient history
extending back more than 2000 years and incorporates acupuncture, herbal
medicine, cupping and moxibustion as the main techniques.

Not all practitioners are trained in all modalities of Chinese

medicine. It encompasses a holistic approach to health
management. We cannot isolate one area of the body; we must
analyse and understand the connectivity of the body to the mind
and spirit.

Straight up, Chinese medicine has gone through some shit. My eyes
widened as I learned from Lauren how this practice has overcome several
battles throughout history, including the burning of the books and, later, the
Chinese Cultural Revolution, where the practice was officially banned.
‘Traditionally, a lot of the medical knowledge was passed down verbally, to
reduce sharing of the information or “secrets”,’ she says. Today, it is taught
as an extensive health science degree known as TCM.
The concept of TCM is based on a connection between mind, body and
environment and aims to prevent and manage diseases. In regard to
endometriosis, the therapy with the most supporting evidence is
acupuncture, with one study finding that twice-weekly TCM acupuncture
treatment significantly reduced pain after ten weeks.
Acupuncture involves the insertion of fine needles into specific points on
the body. TCM theory explains acupuncture as a technique for balancing the
flow of energy or life force, known as qi, believed to flow through channels
in your body. By inserting needles into specific points along these channels,
acupuncture practitioners believe that your energy flow will rebalance. ‘We
use acupuncture to encourage homeostasis, redirecting the body back to a
state of balance and healing,’ Lauren says.

Chinese medicine can explain the complexities of the human

body in simple terminology. It stands back and looks at the wider
picture. ‘Blockages’ can define, however are not limited to, any
pain related condition. For example, a knotted muscle, sprained
ankle, headache or menstrual cramps. If we look at the headache
example, there will be blood vessel constriction at or near the
site of discomfort. Hence why aspirin, a common blood thinner,
can be used for a headache. When you consume the aspirin, there
is a chemical change and often pain relief. This is similar to
acupuncture; we insert a needle, create a physiological change
and the pain should reduce.

This can tie in with numerous Western practitioners who view the
acupuncture points as places to stimulate nerves, muscles and connective
tissue. It is believed that this stimulation boosts your body’s natural
painkillers, known as endogenous opioids.
In Lauren’s practice, an acupuncture session typically involves:
 A detailed medical/health history would be taken, particularly in an
initial consult. Discuss and identify the patient’s main complaint(s)
and what they aim to achieve from treatment. This can take between
30 and 60 minutes depending on complexity (fertility cases usually
take longer). Treatment is focused on the main complaint(s) on a
level of priority, working from top down.
A thorough menstrual history is very important. Establishing when the
first period (menarche) started, when the pain started (if any),
bleeding duration, the colour, texture/consistency, if there are any
clots, and if there is anything that makes the symptoms better or
worse. It’s important to break things down and find out the details,
like the time of the day in which symptoms are experienced. Even
sleep quality, digestion/gut health and stress levels are all important
factors. Looking for patterns helps determine the Chinese medicine
diagnosis and it requires a whole-body approach.
A return consult involves a much shorter check-in. It involves
analysing the effectiveness of the last treatment and going through
any current complaints/ issues. Feedback is measured on a
percentage level, for example, twenty per cent reduction in pain
since the last treatment. Then the radial pulse is checked on both
sides to help confirm diagnosis and abdominal palpation may also
be performed. Another important inspection is that of the tongue. A
tongue analysis helps to confirm diagnosis as well as analyse gut
health and internal temperature. Important aspects of the tongue
include the coat, size, marks, colour and texture. Pulse taking can
also help determine which acupuncture points are to be used.
Although speed is certainly an important aspect, it’s not about
measuring the heart rate. Instead it is about feeling the sensations of
blood flow. Pulse qualities are often described as thin, wiry, slippery,
soggy, weak, to name a few.

Then it’s needle time!

A standard treatment with Lauren includes the insertion of approximately
ten to twelve acupuncture needles. She explains:
 Personally, I use needles 0.18–0.2 millimetres thin. Once inserted
the patient lies on the table for 20–30 minutes to enjoy an ‘acu-
nap’. Acupuncture for endometriosis typically involves about four
to six needles in the lower belly, a couple on the feet, two to four
inside of the legs and inside of the arms and hands.
The acupuncture points are located at ‘spaces in between
things’, meaning that we look and feel for a tiny gap to avoid
vessels, nerves, tendons, etc. Often nothing is felt but sometimes a
warming, slightly zinging sensation is experienced, which we call
‘de q’. The acupuncture prescription (the selection of points used
at the time of treatment) is determined by your Chinese medicine
diagnosis and can depend on where a menstruating person is
during their cycle, as there will be a different acupuncture points
used during the menstruation phase compared to ovulation.

One of my personal favourite things about acupuncture is the heat lamp.

Lauren uses it on the lower belly and the heat helps to increase blood
circulation. It’s such a warm, comforting sensation that puts me to sleep
almost every time. I love lamp!
Another Chinese remedy to consider is herbal medicine. As Lauren
explains, it requires a particularly personalised approach:

Chinese herbal medicine is prescribed based on a patient’s

Chinese medicine diagnosis. It is available via prescription only
from a registered Chinese medicine practitioner as the herbs that
we use are scheduled. Not all patients with endometriosis will be
taking the same herbs due to the varying range of symptoms that
may be present, however there is usually one shared pattern and
that is blood stagnation. Blood stagnation refers to the idea that
 there is ‘blood-like material’, in this case endometrium-like
tissue, growing in the ‘wrong’ part of the body.

Lauren advises that there is a set of parameters that must be met for
particular herbs to be included or excluded in a formula:

This in itself makes each formula unique to the individual. Just

like any medication that is prescribed, you should not share your
TCM formula with anyone else, particularly as it will be made
just for you. TCM formulas are often modified and there are strict
guidelines as to what can and cannot be changed. This is because
the herbs often work together to achieve a desired outcome.

There are various ways in which Chinese herbal medicine can be

consumed and Lauren believes the more effective and convenient form is
powdered.

Powder form is what we refer to as a herbal tea. It is prepared

like an instant coffee to be consumed warm and the dose is
typically twice a day. Herbal pills are also an option; however, it
is not possible to modify these, therefore I would predict a slower
response.

Lauren treats a number of patients with endometriosis and has seen

improvements in pain and PMS symptoms such as headaches, fatigue and
bloating. She has noticed changes to menstrual cycles, particularly when it
comes to reducing heavy flows and clotting and, something that I
personally noticed, improved gut health.

I see varying degrees of symptoms, from issues around ovulation,

post ovulation and during the menstrual phase. Pain reduction is
always a priority, as decreasing pain will increase quality of life
and improve other areas such as sleep and mood.

So, how do we find the right TCM practitioner?

 Find a practitioner that has a focus on gynaecological
conditions. As a registered health modality, we cannot
“specialise” in any particular area as such, however those that
have an interest in/focus on gynaecology have undoubtedly
completed additional courses to further their understanding.

Finally, cost can be a big factor in determining whether someone can

access regular TCM sessions. Currently in Australia, Medicare does not
cover acupuncture and only private health insurance rebates are available.
Lauren’s best advice if you cannot attend treatment is to incorporate the
following lifestyle changes based on TCM theory.
Diet
Fresh food is the way to go! Eating organic where possible to reduce
pesticide consumption and avoid processed food where you can. Also opt
for more cooked, warm foods rather than raw and cold to support digestion
—it takes your body more effort to break down cold foods so you may be
more prone to bloating, passing wind or digestive sensitivity. Same goes for
water, try to drink it filtered at room temperature. If you don’t have a water
filter, you can boil your water gently for five minutes and allow to it to
cool. Otherwise, water-filter jugs are available at major supermarkets for
about $30.
Ensure that you have optimum levels of iron and other essential nutrients
that are vital in ensuring we feel at our best. Good ones to check include
vitamin D, B12, iron, folate and zinc. You can get this tested from your GP
as well as a hormonal panel, which is a blood test to check your levels for
estrogen, progesterone, follicle stimulating hormone (FSH) and thyroid
hormones. This test can help evaluate infertility concerns as well as possible
abnormal bleeding and check for things like menopause and PCOS.
Lifestyle
Look around your home and consider removing pollutants like air
fresheners, toilet spray and perfume. Most of these common household
items purchased from a supermarket are hormone disruptors and/or act like
estrogen (pseudoestrogens). This can present harmful effects to your body
and potentially trigger endometriosis pain. A research study from 1992 also
confirmed a connection between environmental dioxin exposure and
endometriosis. Opt for glassware containers over plastic and avoid scented
or dyed toilet paper. You may also like to review other items like make-up,
washing detergent, soaps, shampoo, etc. Switch to natural ones where
possible.
Finally, when it comes to menstruating, try to slow down in life. You can
do more vigorous exercise during the follicular phase and more gentle
activities from the luteal phase until the end of your period.
Naturopathy
Admittedly, I’ve been scratching my head about naturopathy for a little
while. I’ve always understood that it involves taking a natural, holistic
approach to remedies and lifestyle advice, but I’ve never quite grasped what
it is exactly that separates a naturopath from a dietitian or a TCM
practitioner. All three professions have the same aim in improving your
health but how do we know which one to see? I certainly couldn’t afford
ongoing consultations with all of them and it seems like some of their
advice could overlap. The only way we can do a full comparison is by
sussing out all three and to finish the puzzle, I needed to find a naturopath.
Like every other time I have been in doubt, I turned to my endogram
community for help and many of them pointed me to Jade Walker. Jade is a
qualified naturopath and herbal-tea maker with a degree in Health Science,
and is based in Geelong. She also HAS endometriosis! ‘I got my period
when I was eleven years old and it wasn’t long after that it became a
monthly traumatic event. Pain was always the biggest problem,’ she told
me.
Jade had her first laparoscopy when she was 21 years old and was told
she was ‘all clear’. It wasn’t until she completed her studies that she learned
about excision surgeons with advanced training—and just how much can be
missed. Jade underwent excision surgery in January 2020 which did, in fact,
detect endometriosis, so if we count the diagnostic duration from her first
period to this surgery, that is seventeen years. SEVENTEEN YEARS,
Y’ALL. ‘Going into my degree, I always hoped it would give me the
answers to my debilitating pain. That’s when I came to the conclusion that I
likely had endometriosis with everything I was learning.’
Here’s Jade to help us further understand the relationship between
naturopathy and endometriosis.

What is naturopathy and what can it do for people with

endometriosis?
Naturopathy is a holistic modality that utilises nutrition, herbal medicine,
supplements and lifestyle habits to create individualised treatment plans.
Naturopathy has evolved immensely over the years and is now a respected
practice that requires the practitioner to complete a four-year Bachelor of
Health Science degree to become accredited.
Based on these holistic principles, naturopathy supports people with
endometriosis by looking at every area of the body and by not taking a one-
size-fits-all approach. Where naturopathy really shines with endometriosis
is helping to reduce pain and heavy bleeding by utilising specific evidence-
based dietary measures and anti-inflammatory supplements and herbs. But
as I see from working with many endometriosis sufferers, not every
person’s treatment aim is the same. For example, for one person it might be
to deal with the pain, for another it might be fertility, and for another it
might be to manage the constant bloating. Thus, naturopathy works with the
patient so well, because we don’t just give every endo sufferer the same
cookie-cutter advice. With that said, we do have some key advice that every
endo sufferer should follow to get the best results such as removing dairy
and adopting an anti-inflammatory diet.

How does it differ from seeing a dietitian or a traditional Chinese

medicine practitioner?
Put simply, a naturopath differs from a dietician by the addition of herbal
medicine. But there are many types of dieticians and many types of
naturopaths. So, the comparisons may vary. For example, some dieticians
may be very meal-plan focused or disease-specific, adhering to Australian
dietary guidelines and using evidence-based information.
While there are some similarities with TCM, such as herbal medicine,
there are also differences in our approaches and philosophies. TCM has a
particular focus on meridians and thermal natures of the body (to all my
TCM friends, I’m sorry if I butchered that). TCM utilises herbal medicine,
but also has a strong focus on acupuncture. Personally, as someone who has
utilised TCM and acupuncture for my own endometriosis, I believe that
naturopathy and TCM can be quite complementary to one another. A
naturopath may have more of a focus on nutrition, use completely different
herbs and really dig into every area of your life to find the missing links
such as going over blood tests and doing further functional testing.
Meanwhile, TCM practitioners utilise other techniques to assess the
patient’s body.

What does a session with a naturopath typically entail?

An initial appointment is typically one hour to go over your full health
history. I get all new clients to fill out a lengthy intake form with as much
detail as they remember from the day they were born to now, which helps
us piece together the jigsaw puzzle that is their presenting condition. I also
go over any recent blood tests, as the current standard reference ranges are
not always best for optimal functioning, particularly iron, B12, thyroid and
vitamin D. I can’t tell you how many times I’ve seen people feeling flat and
fatigued, and I take one look at their blood tests and they’re depleted in
almost everything. After assessing their history, diet, environmental factors
and main health aims, I create a personalised treatment plan and
prescription for them. I’ve also created an endo handbook for all my
endometriosis patients that helps them understand their condition, along
with all the key advice I’ve learned through research and my own
experience. They will usually have their first 30-minute follow-up around
three to four weeks later (particularly as I like to see how their period
changes with the treatments). Typically, treatment plans may run from three
to six months depending on their individual goals and what else is going on.

Endo can be a costly condition to manage. Do you have any tips

for those who may not be able to afford consistent appointments
—anything they could do from home?
Absolutely. And this is something I can relate with a lot. Going through my
own studies, being a broke uni student, I’d often get upset learning about all
of these treatments that I just couldn’t afford. This is why I love to
‘overshare’ on my Instagram with videos on what I do to help my own
condition, so that people have a place to get started. Endeavour College of
Natural Health has a student clinic, which is only $20 for an initial consult,
where you can see a final-year naturopathy student. They are all under the
guidance of seasoned naturopaths/lecturers, so you know you’re in good
hands.
 There are also actions every endo person can take right now that could
make a huge difference. I know it’s hard, but eliminating dairy is important.
Dairy contains the A1 protein which drives up inflammation. Just
eliminating this one food group can be a game changer for many.
Ensure you have a healthy intake of omega-3 (particularly from oily fish
sources like salmon, trout and sardines) which reduces inflammation. If you
don’t eat fish, supplementing is a good idea. The big five that often need to
be removed are dairy, coffee, alcohol, wheat, and red meat. But full
disclosure. I’m not perfect with avoiding these 100 per cent either (coffee,
dairy and wheat are the main culprits I avoid). But the more you stick to it
the better you will feel.

Ensuring you have good gut health can also make a big difference, as we
now know that those with endometriosis have a higher presence of certain
bacteria that drive up inflammation. So, ensuring you have regular daily
bowel movements with plenty of dietary fibre and fermented foods like
sauerkraut and kefir is great. You might also benefit from a temporary low
FODMAP diet for two to three months, which may aid with bloating and
IBS. Finally, herbal teas can also serve as a cost-effective healthy
intervention, which is something I’ve created with much consideration of
the common ailments I see clinically. Ginger, cinnamon and turmeric are
the big three culinary spices I get everyone to incorporate to reduce
inflammation and promote circulation.

How has naturopathy personally helped you manage your own

endometriosis?
In every facet you can imagine! Reducing the pain has been the most
challenging part and something I’ve had to work extremely hard on. But
being able to manage my period without Naprogesic (period pain tablets)
has been the biggest achievement. As well as that, I no longer have PMS or
sore breasts before my period nor do I have several large clots. I have more
energy. I know my body’s cues when I haven’t been sticking to the plan,
and the rest of the time, I’ve got my digestion on track.
I used to always have severe ‘endo belly’ and could never figure it out.
But I later realised I had Small Intestinal Bacterial Overgrowth (SIBO),
which is linked to endo and for me was causing constipation. So, I treated
that and my bloating subsided. Like all of us, I still have my bad days. I still
fall off the wagon from time to time or go to town on a cheese platter. I still
get pain, but it’s more confined to one day and more manageable with
herbal medicines and a TENS machine, rather than needing several days
downing painkillers. The ‘bad’ experiences are much fewer and further
between and I have the tools on hand to reduce those flare-ups to a
manageable level.

So, there you go, you’ve now met a dietitian, a TCM practitioner and a
naturopath. It’s like one of those cocktail parties on The Bachelor. You’ve
had some alone time with each and nobody was drunk or dramatic (sorry
producers), but they did present some contrasting viewpoints so it’s really
up to you as to which advice you follow. Have a think before you hand out
those roses. Maybe you’ll pull a plot twist and go on second dates with all
three? Power to you, my friend. I’m Osher, so I respect your choice either
way.
Cannabis
I personally had no idea about the use of weed to relieve endometriosis
symptoms until I launched endogram in 2019. Before that, I just associated
the plant with the film Pineapple Express and my very failed first attempt at
using a shitty DIY bong in a friend’s run-down caravan at the end of high
school. I’m talking full juice bottle vibes with a cut-up garden hose as the
stem—gnarly stuff. However, the more endo pals I have connected with, the
more I have heard about the positive impact of cannabis in managing their
chronic illness.
In the lead-up to my second surgery, I decided to seek out a few weed
cookies. Choosing to have the IUD removed meant I would be returning to
agonising periods and cannabis was something I had not yet tried to help
combat that pain. I remember lying on the couch cautiously nibbling my
cookie and being reacquainted with the taste that had me coughing my guts
up fourteen years prior. The next 90 minutes was a waiting game, but it
worked.
The pain became distant, as if my body just got up and walked away
from it. I felt relaxed, warm and fuzzy. I also got the munchies, but I was
able to retreat to my bed with a big smile on my face and, instead of waking
up throughout the night, I had the most peaceful sleep. The only other time I
have slept this well was after a binge-drinking session, but with the cookie,
instead of waking up hungover, I felt refreshed.
After testing the weed cookies out for a few cycles, I knew it was
something I wanted to stick with, so I applied for medicinal cannabis. I
went through Tetra Health, a telehealth service provider, and within two
weeks of applying, providing the required documentation and consulting
with their nurse and doctor, I was approved. A part of me has felt a bit
rebellious given the taboo surrounding medicinal cannabis, but I think it’s
an important conversation to be had, because I know I’m not alone in the
way the plant has helped manage my pain.

What is it?
Medicinal cannabis, or medicinal marijuana are pharmaceutical products
made from the cannabis plant, used to relieve symptoms of some medical
conditions. People have different perceptions of the plant, mainly due to its
use as an illegal recreational drug and the associated stigma. However,
there’s a pretty big difference between pharmaceutical products derived
from cannabis for pain relief and the consumption of marijuana for the
purposes of getting High As A Kite.

How does it work?

It all starts with the endocannabinoid system, otherwise known as ECS.
This is a regulatory system comprised of various receptors, binding
chemicals and enzymes. Its main function is to maintain balance and
stability within our body (homeostasis, for my science peeps) and is
important for a wide range of actions, such as metabolism, inflammation
and immune function. The ECS is distributed throughout most organs in our
body but is more prominent in the central nervous, immune and the
reproductive systems of those who were assigned female at birth.
Medicinal cannabis can come in various forms, such as oil, capsules,
patches, oral spray, gel/lotion, edible and in its raw state to smoke or
vaporise. The active ingredients in medicinal cannabis are called
‘cannabinoids’ and the two main types that we see used in products are
tetrahydrocannabinol (THC) and cannabidiol (CBD). THC is the one that
gives you those psychoactive effects of being blaaazed but it is also used to
treat symptoms such as pain, nausea and muscle spasticity. CBD is the same
chemical formula as THC but the atoms are arranged differently and as a
result, it doesn’t get you high. CBD has potent anti-tumoral, antioxidant,
anti-spasmodic, anti-psychotic, anti-convulsive and neuroprotective
properties which are believed to help ease and alleviate signals of pain,
anxiety and inflammation, so it stands to reason that it would have a
soothing effect on the ECS for people with endometriosis.

Are there side effects?

Yes indeedy! Like all prescription medicines, medicinal cannabis products
can have side effects. The extent of these side effects depends on the
product type and, of course, it varies between individuals. Some symptoms
may include:

fatigue and/or sedation

vertigo
nausea and vomiting
fever
change in appetite
dry mouth
diarrhoea
feelings of euphoria
depression
hallucinations or paranoid delusions
psychosis or cognitive distortion.

What’s it got to do with endo?

According to the Australian Government Therapeutic Goods Administration
(TGA), most of the studies on chronic non-cancer pain involved using
medicinal cannabis in addition to other pain medications and focused on
chronic (long-term) rather than acute (short-term) pain. The studies specific
to endometriosis are limited but the plant boasts a long history with
menstrual-related pain, dating back to as early as ninth century Persian
texts. It has been part of Chinese medicine since the fifteenth century.
During Queen Victoria’s reign in the nineteenth century, it was well known
that the regent received monthly doses of cannabis indica for menstrual
discomfort throughout her adult life and, although never officially
confirmed, there is speculation that she suffered from endometriosis.
Following 30 years of experimentation with the plant, the Queen’s personal
physician, Sir J Russell Reynolds, was convinced of its effectiveness. In
1890, Reynolds took to world-leading medical journal The Lancet to
declare cannabis ‘one of the most valuable medicines we possess’. He said
the plant was ‘of great service in cases of simple spasmodic dysmenorrhea’,
aka menstrual cramps.
While some stigma remains, cannabis is being more openly talked about
and one of my closest endo friends, Georgia Stuart, has been particularly
helpful in sharing her use of cannabis to treat her endometriosis,
adenomyosis and anxiety. Based on previous experience, Georgia knew it
could really help manage her symptoms.

The first time I tried cannabis for endo was in 2015 while I was
travelling across America. I had some pain going on and found
CBD gummies and edibles in a shop. I would take the gummies
daily which helped my achy body so much! The edibles helped
me sleep so well which is sometimes difficult with all the pain
that I experience.

Now medicinal cannabis is a key part of Georgia’s endo management.

She says:

Cannabis has changed my life completely. I have been able to cut

right back on pharmaceutical drugs which is a personal win for
me. Ibuprofen gave me reflux, codeine made me so violently
nauseous and Endone made me extremely itchy. I would often just
choose to be in pain instead due to those side effects I
experienced. CBD is incredible for my muscle pain and anxiety
and THC oil helps my nausea, stomach pains and allows me to
have a proper, deep, restorative sleep.

Georgia’s positive experience echoes a few recent studies, including one

published in the American Health Affairs journal that found 62.2 per cent of
people who use marijuana do so for their chronic pain. In a 2017 survey
conducted by the National Institute of Complementary Medicine (NICM)
Health Research Institute, with the support of Endometriosis Australia and
EndoActive, 484 female-identifying people with surgically diagnosed
endometriosis were surveyed about the self-management strategies they
used. Of the respondents, who were aged eighteen to forty-five, 76 per cent
reported using self-management techniques in the past six months. This
included the use of heat packs (70 per cent), dietary changes (44 per cent),
exercise (42 per cent), yoga or pilates (35 per cent) and cannabis (13 per
cent). Out of all of the self-management techniques, cannabis was rated as
the most effective for managing pain. ‘This kind of data provides us with a
really useful jumping-off point because it looks like women are using it
regardless of its legality,’ Dr Mike Armour told triple j Hack in 2018. ‘If
people are using it anyway, we really should be looking at the effectiveness
of this.’ Despite this, Dr Armour advised against obtaining cannabis
illegally, which leads to the million-dollar question …

How do I get it?

How you can obtain medicinal cannabis varies depending on where you live
and the regulations of each country state/ county/province. It seems to be
quite accessible in parts of America, and Whoopi Goldberg even has her
own CBD range! In the UK, medicinal cannabis is legal but,
disappointingly, the guidelines bluntly state that it should not be prescribed
to those suffering from chronic pain. Here in Australia, the laws vary from
state to state but doctors can legally prescribe medicinal cannabis through
regulated pathways like the Special Access Scheme Category B and the
Authorised Prescriber Scheme.
After Georgia’s most recent surgery in 2019, surprisingly it was her
gynaecologist who suggested that she look into obtaining cannabis legally.

He knew I experienced hellish side effects from pharmaceutical

painkillers and referred me to a clinic. Unfortunately, they did
not provide any Medicare rebates so after some research, I found
a clinic on the Gold Coast with regular doctors that could
prescribe medicinal cannabis.
 Georgia obtained the new referral and took basically a library’s worth of
supporting medical documents such as ultrasounds, ER discharge reports,
surgery reports and photos, in addition to written correspondence from her
doctor and gynaecologist about her condition.

The consulting doctor was actually shocked at all the supporting

documents I brought with me. I thought it was going to be a lot
harder than it actually was. She talked to me about my lifestyle,
my conditions and how pain affected my life. She prescribed me
CBD oil to take daily and THC oil to take when my pain was bad.

Before Georgia could access these products, she had to be approved by

the government and the turnaround was quicker than expected.

I was approved within one day and my prescription oils were sent
to my local pharmacy. I have regular check-ups with my cannabis
doctor about how I’m going with my prescriptions. Recently, she
prescribed me flowers to vape when I’m waiting for the THC oil
to kick in (which can take hours sometimes and results in me
reaching for paracetamol) and this has helped so much.

Georgia lives in Queensland where the laws for obtaining medical

cannabis appear easier to navigate compared with other states. While she
has been pleased with the process, there has been a financial disadvantage.
Every month, Georgia could be spending anywhere between $280 and $550
on her cannabis and, for a university student, that’s some decent coin.
Despite this, she reckons everyone should have access.

I think there is a lot of room for improvement, but I do also feel

that more GPs should be looking into the benefits of cannabis.
CBD should be more widely available as it doesn’t give you that
‘high feeling’ and it is extremely safe and effective in comparison
with morphine, codeine, etc.
 The cost of medicinal cannabis alongside other barriers is what makes so
many endo sufferers turn to the black market. This means illegally
accessing CBD or THC online, often through international websites.
According to Professor Nicholas Lintzeris, an addiction medicine specialist
at the University of Sydney, this is common. ‘The legal system we’ve had
available now has been in place for about four years, and in the early days,
for the first couple of years, we had a very clunky system,’ he told ABC
Radio National. Professor Lintzeris was the lead researcher in a study on
how Australians use medicinal cannabis for everything from chronic pain to
mental health conditions. An online survey of more than 1300 people found
that while cannabis is used widely for medicinal reasons, the vast majority
of respondents don’t get it from their doctor. ‘It was very difficult for
patients to be able to find doctors who were knowledgeable and interested,
the products were quite expensive, the legal hoops were quite pronounced.
There were lots of hurdles, paperwork and so forth,’ Professor Lintzeris
said.

What should I do?

While I am obviously pro-plant, I am not a medical professional and cannot
determine whether medicinal cannabis is right for your situation. If you’re
not keen, then that’s totally cool, but if you do want to find out more, you
should go for it. For Georgia, research and education is key:

Make sure you look into state laws and call around to get quotes.
If your doctor is against medicinal cannabis, find another one
who will listen to your needs. I also found it really beneficial to
document my experiences with pharmaceuticals and take these
supporting documents to my appointments. Even research papers
of the benefits of cannabis with chronic pain, there’s no harm in
being over-prepared. Don’t stop trying because, as I have found,
cannabis has the potential to drastically improve your life.
 11

Fertility and parenting

Growing up, I planned to be a young mother. I remember one year at

primary school athletics, our families were allowed to come along with
picnic rugs in tow and cheer on as students eagerly competed in running
races, long jump and shotput. I was about nine years old and my friend’s
grandmother was there, celebrating her 45th birthday. I couldn’t believe she
was a nanna, with her brightly coloured hair and fun jewellery. She was so
hip for her age and had such an energetic presence that allowed her to well
and truly keep up with everyone. She felt more like a cool aunty, if
anything, the life of the party. I was so drawn to her and, in my head, I
started to plan my future, as you do when you’re in Year 4. It was then and
there that I decided I would find a husband and have a child by no later than
24 because it sounded like a cool, young number and then when my
children had children, I could be a cool, young grandma. It’s that easy,
right?
Wrong. A little thing called life happened. The years passed and I saw
myself drift further and further away from the ideal of young motherhood.
My aspirations evolved as I met new people and learned new things. I
devoted much of my early twenties to a single life of travelling and blowing
out a credit card to pay for it. I was emotionally and financially invested in
experiences and making memories, not babies. My mid-twenties were a
financially risky time as I worked my way up the music-presenting ladder,
doing a lot of unpaid and casual work until I got where I wanted to be. I
found myself in a serious relationship and then I was diagnosed with
endometriosis. Now, I’m about to turn 30 and while I have many children in
the form of plants, I very much lack tiny humans.
Isn’t it weird how we give ourselves time frames to do things? I mean, I
get having deadlines for tasks and projects (like writing this book!) but
when it comes to traditional milestones, such as parenthood, the pressure to
achieve by a certain age is insane. It’s such a concerning societal issue that
vagina owners face, as if our sole purpose in this world is to have a child.
Especially for me growing up in a regional area, the general expectation
was to find a dude, get married, buy a house and have a baby. Not that it’s
necessarily a bad thing, many of my friends have done it. But what if you
don’t want to? What if you can’t?
For many people with endo, fertility is a tough conversation. Not
everyone with endometriosis will struggle with fertility but according to
Endometriosis Australia, up to 50 per cent will have difficulty getting
pregnant. There are two main reasons behind why and how endo can affect
fertility:

1. Inflammation—the inflammatory nature of endometriosis can impair

the function of both eggs and sperm, as well as make an unsuitable
environment for egg fertilisation, embryo development and
implantation.
2. Physical symptoms—as the disease progresses, our anatomy can be
distorted through scar tissue and adhesions, which can sometimes lead
to blocked fallopian tubes and impact the passage of sperm and eggs
through the pelvis.

Another way endo can affect fertility is pretty obvious: painful sex. If sex
hurts, we’re less likely to Get It On.
So, what actually constitutes infertility? According to the World Health
Organization and the International Committee for Monitoring Assisted
Reproductive Technology (WHO-ICMART): ‘Infertility is a disease of the
reproductive system defined by the failure to achieve a clinical pregnancy
after twelve months or more of regular unprotected sexual intercourse’. For
many people with endo, the struggle to conceive is hard to manage. Each
period is a painful reminder that you are living with this chronic, incurable
condition that is threatening the one thing you’ve probably thought about
for as long as you can remember. It’s also a reminder of the physical pain
coming up, so that’s fun. Then there is the sheer irony of doctors and friends
telling you to get pregnant as a fix for endo when that’s literally half the
problem—you are trying, but you can’t.
 Sidenote: bringing a baby into this world is not a medical treatment for
endo and it’s pretty shocking to hear some professionals suggest otherwise.
Sure, it may alleviate a bit of pain for some people, but it’s not guaranteed. I
had this conversation with Zara McDonald and Michelle Andrews on their
popular Shameless podcast in 2019. You’re either told to have a baby or
have a hysterectomy, neither of which is an effective or proven way to heal
endo, and they both sit at complete opposite ends of the spectrum. Where’s
the middle ground?
Fortunately, I’m looking good on the fertility front. Following my second
excision surgery, my specialist was confident in my ability to conceive but,
honestly, I’m still terrified. What if my endo grows back when I want to fall
pregnant? Will it be painful? What if I have a miscarriage or high-risk
pregnancy? My endometriosis has often made me feel so limited by my
body. The pain has been unpredictable and, at times, out of control. How
would I deal with that if I have a crying baby to attend to? My fatigue can
really fuck me up some days as well—how could I possibly manage that
alongside sleep deprivation? There’s a lot of anxiety about the unknown.
Zara has detailed a similar sense of confusion in her and Michelle’s debut
book, The Space Between. A year after her endo diagnosis, Zara asked her
gynaecologist about babies, to which she was told they would cross that
bridge when they come to it.

I found it peculiar that my future—my health—was now being

projected in clichés that made little sense. How would I cross that
bridge when I came to it when I didn’t even know when I would
be able to do the crossing? What if, by the time I got there, I had
missed my window and there was no bridge to cross? Why
couldn’t anyone just give me a tangible answer to sit with now, so
I didn’t fixate on nonsensical metaphors about bridges and moats
and fertility?

So, endo and fertility are bloody confusing. But let’s try to make sense of
it all together, yeah? The next question you may have is what can help
fertility? For starters, excision surgery—physically cutting out the
inflammatory endo cells—is a good start. Acupuncture is worth a shot too.
A 2019 study found that acupuncture can boost chances of fertility by
reducing stress as well as increasing blood flow to the reproductive organs
and balancing the endocrine system. Third, we learned about pelvic physio
earlier and if that can decrease the likelihood of painful sex then … people
are more likely to have sex! Woo!
If you are still struggling, it may be worth chatting to your GP who can
provide a referral for fertility treatment like IVF.
In-vitro fertilisation, better known as IVF, involves injections to increase
hormone levels and a surgical procedure a few weeks later to take eggs
from the ovaries. These eggs can then be fertilised with sperm in a
laboratory environment to grow an embryo. The embryo is placed in the
uterus a few days later to help the conception process. The success of this
depends on a few factors like age and how many eggs are retrieved and,
while I have broken down the process in a very simple way, IVF is no walk
in the park. It can be an overwhelming experience that can take both
physical and emotional tolls, as well as sting your pocket.
Another option is egg freezing which is considered a kind of insurance
for your fertility, helping out your future self. Egg freezing is similar to an
IVF cycle, minus the sperm fertilising. To prepare for this treatment, a
series of hormone injections are required before the eggs are retrieved. The
eggs are then stored and when the patient is ready to go, their eggs are
warmed and then fertilised with sperm. Sounds like preparing a meal, right?
The Meal of Life! Except it’s a bit more emotional than your average meal
prep session, and you could have a few Michelin-starred meals for the same
price.
Such an intricate process usually entails an out-of-pocket fee and
potential ‘storage’ costs per year, but if you’re not planning to pop some
babies out anytime soon and want a form of backup when things look
uncertain—and you’re in a financial position to do so—this could be worth
sussing out with your GP.
Finally, there is third-party assistance! We’re talking egg donation, sperm
donation surrogates, that kind of thing. There’s a range of options and
there’s a range of fertility clinics too, so don’t be afraid to shop around. This
is something you have a huge investment in—both emotionally and
financially, so it’s important that you find a medical professional who is
really going to have your back and be there throughout the process.
Alternatively, seeing a Chinese medicine practitioner or naturopath may
help to prepare your body for conception.
Parenting
As you can probably understand, it’s a bit hard for me to talk about this
topic as I’m not yet a mother! Fear not, I have called on the wisdom of a
familiar face within the endo community, Jessica Taylor. Jess is the
president of QENDO. Despite initially forming in 1988 as a support system
for people with endo in Queensland, QENDO has expanded into a
powerful, worldwide community and a lot of that is thanks to the
approachable, inclusive leadership style of Jessica.
The following pages may be triggering for some readers, particularly if
you are having trouble trying to conceive. No words will ever do justice to
those challenges and feelings of despair but if there’s one conversation that
needs to start changing, it’s the narrative that a family is determined by our
ability to give birth. It’s frankly very dated and quite discriminatory towards
not only infertile people, but also people in same-sex relationships and
those who simply do not want to pop out a kid. There are various ways of
forming a family and they don’t have to be determined by medical
procedures. Like endo, parenthood and family are not one size fits all—you
are worthy and valid with whatever path you take.

Life as an Endo Mum, Jessica Taylor (President,

QENDO)
Endometriosis was my firstborn. While friends of mine saw two lines on
their pregnancy test, I saw flooding in my pad. While they charted the
development of a new life, counting weeks then months, watching as it
grew, I tracked symptoms, a seemingly endless array of them that never
improved no matter how many doctors I saw. As they welcomed their child
into the world, I welcomed a diagnosis, both filled with relief and then
anxiety—how would I cope with this firstborn of mine?
As other people’s babies grew into toddlers, my endometriosis needed
constant monitoring. I watched it move through stages of development like
a child going from purees to learning how to use a spoon, except I was the
one with the mood swings of a three year old. I couldn’t allow my condition
to wander off, to roam unwatched; it needed constant management and
guidance, otherwise it was certain to become troublesome. I felt like a
helicopter parent, a micromanager of my endometriosis, needing to know
exactly where it was or what it was doing at all times.
But here’s where our journeys take different paths. While others found
watching their babies growing into children a precious time, I could not
celebrate when my endometriosis marked a new milestone. Every new inch
my endometriosis took over signalled another strategy I needed to develop,
another treatment option to add to my ever-expanding toolbox. And
whenever I looked at my swollen ‘endo belly’, so much like the belly of a
mum-to-be, it was a reminder.
Endometriosis was my firstborn, but I was not yet a mother.
So, when I found myself pregnant, and then the mother of a beautiful
baby girl, it isn’t surprising that it was a unique journey, and yet oddly
familiar. Being a mother with endometriosis is much like motherhood in
general, a blessing and a challenge, a joy and a bit of a disaster all at once.

So, when are you going to have a baby?

The word ‘mum’ means something totally different to each and every
person—and add some weight to this word if you’re attempting to navigate
your way through the fertility labyrinth.
The ‘when are you going to have a baby’ question is one that so many of
us have fielded from family, friends and complete strangers in Woolworths
while we’re just trying to figure out which laundry detergent will leave our
towels fluffy and bright without dooming the planet or our budgets. It’s one
of the most intensely personal questions that anyone can ask and yet it’s
often a topic of casual conversation. When you have endometriosis, this
question can sting just a little more than usual.
Perhaps you’ve been trying, unsuccessfully. Perhaps you’ve had
miscarriages. Perhaps you’re waiting because your pain is so unmanageable
that your body just cannot cope with pregnancy, let alone motherhood.
Perhaps you’re in fact pregnant, but it’s early and you’re worried that it
won’t be viable. These are all the thoughts that occur behind closed doors,
that people couldn’t possibly know when they ask you this question and
that’s exactly why they shouldn’t—no matter how kind or well-meaning
they are.
Pregnancy
One of the only things many people know about endo when they are first
given their diagnosis is that it could affect their fertility. On top of
everything—the pain, the bleeding, the fatigue, the gut problems, the
impact on your whole life—suddenly you’re faced with the prospect that
having children won’t be easy, or even a given. That’s confronting to hear,
whether you’re eighteen or thirty. Add another layer of complexity if
you’ve also been diagnosed with adenomyosis or PCOS, or both for those
who have the complete trifecta.
For some, becoming pregnant isn’t difficult, for others there is some
strategic planning and a few consults, maybe a fertility medication or two,
and then there are others for whom achieving a viable pregnancy takes an
army. Whatever path you take, finding out you’re pregnant can be
bittersweet when you have endometriosis. You live in a body that doesn’t
always do what it’s ‘supposed’ to do and frequently does things that you
wish it didn’t. Your reproductive system in particular has proven itself
problematic at best, untrustworthy and traitorous in other cases, and now
you’re supposed to trust it to carry a pregnancy?
One of the biggest myths associated with endometriosis is the notion that
pregnancy will cure it or somehow improve it because it’s nine months
without a period—which assumes endometriosis is simply a disease of the
reproductive system and not a whole-body illness. Those who have been
pregnant with endo have mixed reviews on the subject, but for some the
idea that pregnancy cures endo is the most laughable thing they’ve ever
heard.
The early days of pregnancy can be overwhelming, some experience
cramping that they fear is a miscarriage. The fear can be paralysing. The
thoughts can race through your head at Olympic-swimmer speed. How
many flutters have I felt today? Is she ‘okay’ in there? I remember calling
the midwife (for the third time that week) concerned I couldn’t feel any
movement. The reassuring voice on the end of the line suggested that I
drink orange juice or lemonade and count the movements. If it was what I
normally felt or in line with her suggestions, we were okay. If you are ever
concerned about your foetus, call your healthcare team. They are there to
support you and help you navigate the (sometimes ridiculous) questions.
 As a mum, my greatest fear is that my daughter may find out she too has
endometriosis later in her life. I remember finding out the sex of our baby
and sinking slightly inside, thinking, A girl! But endometriosis can be
genetic. I dreaded the thought of my child going through what we do. This
fear paralysed me and added anxiety to the journey. You may also be
worried about how you will cope with a newborn. It is okay and normal to
feel all of the feelings. Consider writing down daily affirmations to help
you respond to your feelings. The act of writing or journalling can help to
actualise your thoughts.
Pregnancy is a totally different experience for each and every person—
and for each pregnancy too! There are millions of books you can read, but
here are a few key tips that helped me as a soon-to-be-mum with
endometriosis:

People with endometriosis often feel stretching, cramping or even

shooting pain.
It is okay if you don’t trust your body but try to be kind to it and
grateful each day for how far you have come.
Make plans and organise as much as you can so that you are prepared
for life with a baby and how you might manage your disease and a
baby. Who in your support network can help?
Develop a birth preference document instead of a birth plan. This can
avoid further frustration with your body if your plan doesn’t play out
how you imagined it would. A birth preference document encourages
you to consider your preferences around pregnancy and birth and
prepares you for multiple scenarios should you need them.
You can still flare and bloat, even during pregnancy. This can be tricky
if you are not able to use your tools the way you used to. Keep
moving. Motion is lotion and gentle movements will help your body
stretch and adjust as it needs to. A warm shower, massage and moving
through active birthing positions can help your body even more.
It’s normal to distrust the ultrasound. For people with endometriosis,
we haven’t had the greatest experience with scans, and I was really
nervous the scans on my unborn child missed or didn’t pick up on key
defects or issues. Talk with your sonographer or doctor about your
fears and have them show you the images of the little bladder filling
 and emptying, the four chambers of the heart working together. Count
the fingers and toes three times if you need to. Do what you can to
understand your baby and focus on the facts.

Birth
The waves, the contractions, the surges. My body knew how to handle this
deep and raw pain after years of experience. I am not saying that
endometriosis and labour pain are the same, because every birth is unique
and everyone is different, but I will say this: I knew how to handle the pain.
Throughout my active labour, I breathed and moved my body, just like I do
when working through an endometriosis flare-up: with heat, showers and
moving my pelvis. I feel like endometriosis prepared me mentally to work
through the process of labour and into becoming a mother.
The birthing experience is different for everyone. Most importantly, this
is a time for you. Endometriosis has taught you that you know your body
better than anyone else. You are your own advocate. Talk about your fears.
Endometriosis has prepared you to understand your body.

The baby manual

You would have heard time and time again, ‘Babies don’t come with a
manual’—maybe not, but they do communicate their needs to you.
Endometriosis taught me to listen to and understand my body and I
encourage you to do the same with your baby. They may not talk yet, but
they do understand you on some level. They understand your energy, they
understand your touch, they have been with you for nine months. They
know you. It is up to you to understand and learn who they are.
Some parents don’t always feel close to their baby right away and it’s
common to take time to feel comfortable in this new role. I remember the
first time I was alone with my baby, just fifteen minutes after she arrived
Earth-side. I sat there looking at her, thinking, Wow, you are now a person I
need to get to know. I learned to understand her different cries and what
they meant. I allowed her to be who she was, and I continue to respond to
and follow her cues even to this day. Having something in your life like
endometriosis, where you have very little control over your good and bad
days, puts you in a unique situation. You can apply this patience, knowledge
and experience to motherhood.

Endo Mum and managing your endometriosis

So, here you are. A new mum with engorged breasts, tired eyes and a baby
who should be sleeping but isn’t. Those early days are a total blur now that
I look back and reflect. It was coming to terms with the fact my body
achieved this and for the first time in my life, I was grateful for my body. I
was grateful to my uterus!
When looking after someone else, it is important that your needs are met
first. There is a reason why flight attendants instruct you to put on your own
oxygen mask before anyone else’s. A similar principle can apply to
motherhood.

Here are some tips to self-monitor:

know yourself—you know your own mind and body, listen to what it
tells you
allow yourself to recognise when it is too much—don’t be hard on
yourself
contact a person you trust and feel comfortable to share your feelings
with
don’t be afraid to admit when it’s too much or it’s not a good time for
you
write down a few things that help you lessen stress and anxiety levels.
 When it comes to managing motherhood and endometriosis, two key
areas come to mind: physical wellbeing and emotional wellbeing. It is here
that you really do need to become an expert in developing your toolkit of
resources and information to manage the mental load.

Physical wellbeing
Your physical wellbeing is essential to recover and replenish your body
after conception, pregnancy and birth—and I don’t mean working out three
times a week. It is very common for mothers to be postnatally depleted
throughout motherhood, regardless if you became a mother one, five or ten
years ago.
It is time to invest and rebuild your physical wellness as much as
possible. Postnatal depletion is not a new term, but one that is not widely
known or spoken about often. It’s when you are severely deficient in
fundamental minerals and nutrients that are lost after birthing or carrying a
child. Some people never replenish the fundamental nutrients and minerals
needed to function and manage a condition like endometriosis throughout
motherhood. Without the replenishment of essential nutrients, your body
will struggle to manage inflammation and your condition.
If you read one other book this year, please look into The Postnatal
Depletion Cure by Dr Oscar Serrallach. This book is a practical guide to
replenishing your body after producing a child and will have positive
impacts on managing your endometriosis too. It has been my best friend
since becoming a mother and I encourage everyone in my life to read it.
Have you ever heard the phrase, ‘Sleep when the child is sleeping’ and
laughed, thinking, Yeah, right, I have so much to do around the house; I
need to schedule appointments, cook dinner, plan work … I wish I had
understood how important this activity was in my early months of being a
new mum. Sleep in those early days is even more beneficial for someone
with endometriosis. Sleep helps to clear toxins, repair damaged cells,
recalibrate your senses, produce restorative hormones such as
dehydroepiandrosterone (DHEA) which boosts immunity, cognitive
function and so many other good things your body needs. In addition, sleep
throughout the early stages of motherhood is particularly important for
someone with endometriosis because this is when your body does most of
its detoxification and the gut works on absorbing and breaking down the
foods you have eaten.

Emotional wellbeing and mental health

To some degree, anxiety or worry is normal when you are pregnant or a
parent. Some will experience postnatal depression—please know, this is
more common than you think. Recognise, accept and talk to someone early.
You need mental strength to manage your baby and endometriosis.
You might be managing hormonal therapy or new treatments for your
fatigue or pain while managing motherhood. It is really important that you
seek support and be kind to yourself, more than you have ever been before.
As a mother with a toddler, I found giving her small tasks such as combing
my hair, finding my heat pack or sitting and reading a book is helpful. It
might be an option for you to be open and honest with your children about
how you are feeling. They might surprise you with how understanding and
forgiving they are. I remember feeling really guilty not being able to play
with my daughter due to a flare-up. I explained to her that I had a stomach
ache and sore lower back. She promptly offered me a teddy bear to cuddle
and sat next to me with a book, and told me, ‘It is okay, I am here to help
you.’
You might worry you will miss a netball match, dance recital or soccer
game because you are in bed with a flare-up. It can be really overwhelming
being a mum, so it’s important that you check in with yourself and be kind
to your body. Asking yourself the following questions throughout the day
will help you manage your emotional, mental and physical health:

Have I had enough water today?

Am I straining or clenching my pelvis?
Have I taken four deep breaths in and out today?
Do I need a five-minute timeout to myself?

Remember, you are doing the very best that you can.
 12

Work and study

Work
I’m just gonna put it out there, working with endometriosis sucks, from the
guilt of calling in sick, the discomfort of trying to explain why, the anxiety
of reducing hours and therefore losing income to wondering how you are
going to make rent for the month or even afford groceries for the week. The
fear of judgement from your boss and colleagues as you have no choice but
to hand your work to someone else, again. The agony of pushing through a
flare-up because you either cannot afford a day without pay or you don’t
want to let your team down. And then someone says, ‘But you don’t look
sick …’
I’m quite privileged in my current role on radio. Sure, hosting a live,
national show requires a certain energy, so sometimes it is really hard to
show up and switch on when my pelvic palace feels like she’s on fire. But
the beauty of radio is that no-one sees you. I don’t need to worry about
wearing a restricting, ill-fitting uniform. Instead, I can rock up to the studio
in whatever feels comfortable and, yes, that absolutely means trackies! I can
be hunched over the microphone with a heat pack tucked into my pants and
you’d never know. It’s certainly not easy, but I know it could be worse. I’ve
experienced worse. Like that time that I mentioned earlier when I was
working my retail shift, crippled over the counter waiting for my regional
manager to come and take over. Or in my previous role as a travel agent,
squirming in my desk chair with a heat pack tucked under my uniform as I
typed relentlessly to lock in airfares before my deadlines. I even had one
lady return to my store to gift me an electronic heating pad after a Sunday
morning consultation in which I gave terrible service because I was
experiencing such excruciating period pain.
Plus, if there was anything good to come out of the pandemic, it would
be the fact that I can do all my show preparation from home (read: on the
couch with blankets) and hit the studio when it’s time to go on air. I’m
lucky to have flexibility and understanding from my employer on the days
that I have to call in sick. They get it, but it wasn’t always the case.
Anything but splendid
One month before my diagnosis in 2018, I was in Byron Bay for our
Splendour in the Grass broadcast. Splendour is arguably Australia’s biggest
festival, it’s our equivalent of Glastonbury or Coachella and for years triple
j has broadcast from the festival site. We set up a radio station in a tent
backstage to share all the action with those at home who couldn’t snap up a
ticket. While it’s super fun having an all-access pass and chatting to some
big names, it’s not all glamourous.
In what I can only describe as So Bloody Typical, I got my period just as
Splendour was starting. My uterus has always had this really good tendency
to schedule shark week at the most inconvenient times, as if it were
watching me and thinking, Well, well, well. Looks like Bridget is ending her
seven-day working week with a huge schedule at Splendour, let’s spice up
that stress with some cramps and clots!
I was rostered to present the evening slot of the festival broadcast, so my
start time was around 1 p.m. One of the days I was also pencilled in to do a
field cross at 12.45 p.m., which, on first glance, doesn’t seem like a huge
deal because it is only fifteen minutes before my start time. However, the
problem with this was the carpooling situation. Our accommodation was
about 40 minutes from the festival site and there were only two times the
cars went to site, 9:30 a.m. and 1 p.m. In order for me to do this 60-second
field cross, I had no choice but to be onsite at 9:30 a.m. Instead of being
able to use my morning off to rest with my heat pack and prepare my
crampy body for the twelve-hour day ahead, I had to be onsite three hours
early with no access to a microwave and just a plastic chair to sit on. For
anyone who deals with bad period pain, you can imagine how those three
hours would feel like a lifetime.
I messaged the team chat twice in the lead-up to see if there was any way
I could swap my field cross with another presenter, only to be told that the
cross would stand. Like many times throughout my diagnosis journey, I
tried to suck it up, but it didn’t take long for people to notice how much I
was struggling. My then boss, who seemingly missed the group chat, asked
me why I didn’t swap with someone. Our technical producer spoke up in
my defence: ‘She DID ask to do that, twice.’ I made it through the gruelling
fifteen-and-a-half hour working day but that one incident has made me
extremely anxious about returning to or working at festivals. It really
affected me and I dread the thought of being in that situation again. I also
can’t help but wonder if the outcome would have been any different if I
already had received my endo diagnosis—medically backed confirmation
that my pain was the result of a legitimate condition. To everyone at the
time, it just looked a bad period.
Nearly two years later when I shared my struggle returning to work from
my second surgery on Instagram, I received this comment from a girl called
Kasey:

I introduced myself to you a few years ago at Splendour and you

were so lovely to me and then later I found out through your
Instagram that you had the most horrendous pain that night. No-
one would have been the wiser though because you were so kind
and cool.

It was a pretty bittersweet thing to read. On one hand, it was a nice

reminder that, yeah, I’m strong as hell and can mask my pain like a pro. On
the other, it was sad to remember that I was given no other choice. Sharing
this experience with you is by no means an attempt to drag my employer,
but I want you to know that this kind of shit can happen anywhere, to
anyone. It doesn’t matter what job you have or how well-known you are,
working with endo is inevitably a challenge and there are going to be times
where you’re working alongside people who simply don’t get it.
Performance anxiety
Take a look at American actress Mae Whitman, for example. In a recent
interview with Glamour magazine, Mae revealed her struggle with being in
pain on set and the fact that it wasn’t taken seriously by the people she
worked with. ‘It’s very hard. It’s almost like you forget that you do have to
then go be on camera. I felt like so much of my experience was about trying
to manage and push down my own pain, push down on my own experience
and be like, “I’ll deal with this later.”’
Mae had experienced symptoms for years before receiving her endo
diagnosis and despite the validation it gave her, it has still made work
prospects difficult to manage. She said:

I literally can’t schedule things in advance. Like, it’s almost a

joke. And even now—I’ve had surgery and I’m much better—I
still can’t do it. Because the symptoms that I still have from
endometriosis pop up out of nowhere. And even though it’s not
the horrible pain anymore, it’s insane bloating, nausea, extreme
fatigue, super-nervous panic attacks. And it makes it impossible
because my cycle is all over the place. It’s never regular. It’s so
frustrating because it makes you appear unreliable. People think
you’re just flaky. People think you’re impossible to get a hold of,
that you’re not good at your job, you’re not professional. I’ve
had to sort of learn how to set up boundaries, which are probably
good to have in one’s career anyway.

Someone else who knows this feeling all too well is Jacinta Parsons, who
broadcasts downstairs from me as an afternoon host on ABC Melbourne.
For a few years now, I have dubbed Jacinta as my ‘radio mum’ because
prior to hosting her own show, Jacinta worked for triple j’s sister station,
Double J, as well as being music director for Local Radio. For many of us,
Jacinta became this nurturing figure who we could all turn to. In fact, she
was one of the very few people I could confide in when I was told I had to
move to Sydney in 2018 but had to keep it secret for two months. Little did
I know, Jacinta was also battling an invisible illness, Crohn’s disease.
 In her article ‘Pandemic has highlighted just how fragile we always
were’, published in the Sydney Morning Herald, Jacinta details her own
battles with chronic illness in the workplace and the struggle for it to be
taken seriously.

If you come to work with a flu, or with a back that you’ve put out,
the structure of the workplace supports you to resolve this issue
and come back when it’s all better. But there are no structures
that meaningfully support an illness that is ongoing.

Jacinta lost nearly a decade of her career to her illness and had no choice
but to work through her pain.

What I learned to do, very skilfully, was hide my symptoms. I

learned how to use my voice, to make the stream of air that
travelled out of me so consistent, that nobody could hear the
wavering pain beneath it.

Although she achieved her lifelong dream of becoming a radio presenter,

she writes that she has ‘no faith that our systems are built to cater for the
chronically ill, and that vulnerability frightens me’.
Leave it alone
Another spanner in the works is sick leave. In June 2019, research by
EndoActive and Ernst and Young found that endometriosis costs the
Australian economy a whopping $7.4 billion a year in lost productivity.
That’s a conservative estimate, by the way, according to EndoActive co-
founder Syl Freedman, who told triple j’s Hack that this research only took
into account time off work and underperformance due to illness. The report
also found that 60 per cent of endo sufferers use their sick leave to manage
their endometriosis, which doesn’t at all surprise me. Endometriosis forces
you to look at your leave balance from a completely different perspective. If
I wake up feeling snotty or with an upset tummy, I need to consider if it is
something that I can actually force myself to push through, because the
endo pain always takes reign. Even when COVID-19 made its way to
Australia, I was in full freak-out mode. I knew I didn’t have the sick leave
to cover me should I catch the virus, as that balance was reserved for my
second surgery. I’m constantly thinking ahead, while it’s rarely a thought
that crosses the minds of my non-chronically ill colleagues. Imagine not
having to worry about this kind of thing? I could never!
So, how does one work with endo? It all sounds so hard, and it is! But it
is possible. I mean, in a perfect world we would all have incredibly
supportive and flexible workplaces that would accommodate our illness but,
more often than not, we have to put the effort in making our jobs more
manageable. Everybody’s situation varies—there are so many different
kinds of jobs and we all have limits in how many hours we can do. For this
reason, I can’t give you super-personalised advice, but hopefully these
general tips can help improve your working environment.
The Conversation
Having The Conversation with your boss and colleagues about your endo
can be really hard and it’s completely your choice as to whether or not you
feel comfortable to disclose this information with them. I know many
people who are open about it and I also know others who don’t bother
because they don’t believe it’s worth doing. However, while employers
have a duty of care to their employees, it is the employee’s responsibility to
communicate with their boss. The level of detail you share about your
condition is up to you (they probs don’t need to see your operation photos)
and your employer cannot share this with anyone else without your consent
as it is private information. There are some employment contracts that
mention the need to inform your employer if you cannot uphold your job
requirements—in these instances, it would be really beneficial for them to
know why that is the case.
If possible, make the conversation face to face so you can get a sense of
their reaction and adjust the direction of the conversation if necessary. It
could be worth doing some role-playing or planning out some different
ways the talk could go, so you feel prepared to tackle it from numerous
perspectives. Having a face-to-face chat also allows you to answer any
immediate questions they may have.
Approach the conversation in an open manner and try to frame it as
positively and optimistically as you can. This might sound weird, but from
my experience talking to my bosses, I have found that wording can really
influence their response. If I need to talk to them about a problem, I always
try to offer solutions. For example, when I approached work about moving
back to Melbourne, instead of saying, ‘Hey, I hate Sydney, so I want to
move back to Melbourne next year. Can we make that happen?’, I tried
something more like, ‘Hey, I have really appreciated this experience in
Sydney and have learned so much, but I feel that returning to Melbourne
would improve my performance drastically. I’ve thought about the ways I
feel this could benefit both myself and the station, and some suggestions as
to how we could make this work. I’d love to explore these options with you
and I’m happy to answer any questions you have.’
 Can you see the difference? You want your boss to recognise that it’s
something you have really thought about from all angles because you, my
friend, are a diligent legend! So, when bringing up your endometriosis, you
want to go about it in a way that could be like:

I wanted to talk to you because I think it’s important that you are
aware of a condition that I have called endometriosis. It’s a
chronic, whole-body illness where tissue similar to the lining of
my uterus grows in other places and it affects me in a few ways
[include some symptoms]. Here is some information that will
hopefully help you gain a better understanding of what endo
entails. I have thought about some processes we can follow to
ensure that I can continue to work to the best of my ability
[include some suggestions]. I would really love to hear what you
think of these options and I’m happy to answer any questions.
I’m looking forward to making this work and as always, I value
your support and feedback.

I would highly recommend downloading an information sheet from Safe

Work Australia called ‘Supporting workers with endometriosis in the
workplace’. This sheet was prepared in accordance with the National Action
Plan for Endometriosis and it helps employers understand the disease and
identify reasonable steps they can make to help workers manage their
symptoms. Endometriosis UK has set up a similar model called the
Endometriosis Friendly Employer scheme, which enables employers to
work towards improving support and developing work environments where
all staff are comfortable talking about possible practical adjustments that
could be of benefit.
You could also print a brochure or flyer from your local organisation—
these are usually available as a PDF from their website—or even pass on
articles about public figures who have endo. If you think it would help, you
could ask your specialist or GP to write a letter to your employer that
explains your endo and how it may affect your ability to work.
In terms of making suggestions, this really depends on your work and the
extent of your endo. One thing I would consider is whether or not you can
do part of your job from home. COVID-19 has forced many people to
adjust their routines and adapt to working from home and, while it has been
stressful for many, it has been music to the ears of many chronic-illness
sufferers. If you have had to work from home recently, it could be worth
opening that conversation with your boss as to whether it is something you
can continue doing beyond the pandemic, or just on those days where you
are in pain. According to the Fair Work Ombudsman, flexible work in
Australia is available to employees upon request after they have worked
continuously for an employer for a twelve-month period.
If you are unable to have this conversation with your employer in person,
email is fine, but it could be beneficial to hit up some online support groups
for advice on how to go about this. Alternatively, if your employer has one,
call its Employee Assistance Program (EAP) for further guidance.
Know your rights
Legislation is different in every country so the best thing to do is print your
contract and get to know it and how it relates to employment law! There
will be important info in there regarding termination, sick leave and other
work requirements so, if conflict arises, you can refer back to that for
clarification. If you believe your endometriosis has led to discrimination,
harassment or bullying within the workplace, the first thing to do is refer to
company policy which should outline a process you can follow for
complaints. If there is a HR representative available, contact them for
clarity as some of these policies can be hard to dissect, but if you feel that
you cannot speak with them confidentially or it will not be taken seriously,
hit up an external party, for example, Fair Work Australia. Try to get
responses in writing as it is much easier to refer back to and, as always,
there are online support groups where you can seek advice and learn from
the experiences of others who have gone through a similar thing.
The Vermilion Project
Tori Hobbs had been working in the healthcare industry for over four years
before they were diagnosed with endometriosis and adenomyosis. One year
prior, Tori was forced to take a lot of sick days due to their symptoms and,
as a result, they encountered microaggressions, exclusion and animosity
from their managers and co-workers. ‘I was forced to leave my job due to
the negativity, bullying and isolation I was experiencing, but I’ve since
learned about my entitlements as a disabled worker and I’ve been able to
find working arrangements that suit me.’
Although they were able to find new work, Tori often reflected on the
experiences with their previous employer and wondered why they didn’t
know about the workplace laws that were in place to protect them.

I grew frustrated at the circumstances I found myself in. Why was

I not supported by my managers? Why was I told to go to
Centrelink when I cried in front of them about the fear of not
being able to provide for myself and my partner? How is it that I
was made to feel alone, unproductive and worthless in an
environment built on providing care to those who are unwell?

Growing up as an Indian Tamil migrant in Australia, Swathi Sundaram

has had her fair share of discrimination based on the colour of her skin. ‘I
have been spat on and harassed but I would still regard having to justify
reasonable adjustments to manage painful periods as one of the most
demoralising experiences of my life.’
While completing her law degree and working in law firms, Swathi
suffered from bouts of debilitating period pain and was severely
overworked by a system that did not view her invisible illness as worthy of
consideration. Despite feeling broken by her experiences of battling ableist
workplace policies, Swathi was determined to ensure this did not keep
happening.
Based on their lived experiences with juggling invisible illnesses and
earning a living wage, Tori and Swathi decided to take matters into their
own hands. They fused their love for law, healthcare and advocacy by
launching The Vermilion Project, a collective aiming to create better
personal and professional lives for people with chronic illnesses.

We believe everyone should be able to earn a living wage whilst

feeling safe, supported and empowered in their workplace. We
want workers with chronic illness to be knowledgeable about the
laws that protect them, and we want them to know that they’re
entitled to the support we didn’t have.

Alongside researching and gathering information from workers with

chronic illness to better understand their needs, The Vermilion Project also
independently reviews policies and procedures at an industry level to
identify gaps in protecting workers, aiming to advocate for change at a
systemic level. And this is only the start!

We’re working on a series of intersectional self-advocacy

workshops targeted at career-seekers and workers to ensure they
have sound legal knowledge, self-advocacy, allyship and effective
management strategies for when issues may arise in the
workplace. Our goal is to protect, inform and empower workers
so they may not only participate, but flourish in their social,
professional and health journeys.

To Tori and Swathi, it’s pretty clear that change is long overdue and that
empowering people with chronic illness to manage their workplace issues
benefits everyone—employers and employees alike.

Capitalism is built on the labour of people, but when you can no

longer contribute in a way that is seen as ‘fruitful’ or in a way
that is advantageous to your employer, your value appears to
decline. However, your level of productivity does not have a
bearing on your right to survive. Everyone has the right to earn
an income, to access adequate healthcare and to not only
survive, but thrive.
Be prepared
Create a checklist of things you need to have at work in times of a flare-up.
You could include:

pain medication
heat pack—if you can, try to purchase one with a Velcro strap so you
can wear it while moving around!
stick-on heat pads—to avoid burns, wear some high-waisted underwear
with them
your ‘urgent medical notice of endo flare’ card—more on this on p 213
if they work for you, a slim TENS machine that can sit discreetly under
your clothes. Or if you’re comfortable showing it off, werk that TENS,
baby
water, because hydration is #1 and you need something to help wash
those painkillers down, duh!

Listen to your body

I know you probably just want to push through the pain, especially if it’s
threatening your pay cheque but if it’s at the point where you can hardly
function, you need to put yourself first. It’s not worth creating extra stress
on your body and the pain will probably continue to worsen. Take that time
to rest or eventually your body will force you to.

And, listen to me!

You are doing the best you can. I know you are. Don’t let your productivity
define your worth and always put your health needs first.
Study
When I look back on my life, I always consider 2011 my favourite year
because it was my first proper taste of freedom. I moved to Melbourne for
the first time to study a Diploma of Visual Merchandising which, by the
way, I have done a big fat amount of nothing with. I eagerly signed myself
up for student accommodation that overlooked Glenferrie station. I broke
up with my first boyfriend and was strangely excited to downgrade from
my luxurious queen-size bed at my parents’ home to a king single because it
made me feel like I was well and truly a university student. Same goes for
the lack of oven in the kitchen because, let’s be real, are you even a student
if your diet isn’t goon, tinned tuna and instant noodles?
The university lifestyle is a thrilling notion but, in reality, it isn’t the most
endo-friendly life, given it usually involves a poor diet, excessive drinking
and pressure to have a thriving sex life. Not to mention the workload, trying
to stay focused and motivated when you’re fatigued or feeling like your
organs are rolling in barbed wire. It’s not ideal.
However, there are a few things that may make studying with endo a bit
easier. Massive shout-out to my endogram community for helping me put
these together, many of whom are going through this stage of life right
now!

Tell your tertiary/further education provider you have endo!

This is so important because they are in a much better position to help you
than you may realise. Here are some ways in which they can help you:

Access/Disability plans and Special Consideration—don’t feel

ashamed to look into these plans, they are there to help and if you
qualify, you could be granted extensions for your assignments. Just
make sure your lecturers, professors and tutors are across it. They
may also allow you to spread out your classes as opposed to doing
several on one day, which may really burn you out.
 Student services and counselling—most universities have student
associations and their sole purpose is to support YOU! Utilise them!
Health services—consult your on-campus health service and advise
them of your endo because they can be your extra backup if you
ever need it.
Online lectures and tutorials—these are so common now anyway
because of COVID-19 but speak with your teachers about the
possibility of making this more accessible should you need. Come
examination time, they may even allow you such things as bringing
a hot water bottle or taking rest breaks. Have a chat with them, they
are there to help you succeed.

If you are looking at going to university but are concerned about the
amount of contact hours on campus, it could be worth exploring the
possibility of part-time study as opposed to a full-time study load. Plus,
some universities offer online correspondence courses that you may find
more manageable.

Diarise your pain and plan ahead

So many of my followers suggested this one. Keep a diary so you can track
where in your cycle you experience the most pain as you will likely detect a
pattern. Use this pattern to help schedule your study around the good days.
If possible, smash out as much work as you can when you are feeling good,
so when you do come crashing down, you can allow yourself time to rest.
Keep in mind, if it gets really bad, you should always put your health before
study.
Be prepared
The same checklist for work can be used for uni. Pack medication, a strap-
on heat pack or stick-on head pads, a TENS machine (if they work for you)
and it could also be an idea to purchase an ‘endometriosis emergency card’.
Jump onto Etsy and search those three words and you should come across
this yellow card you can purchase for a few dollars and it’s basically a card
you can pull out of your wallet and show people if you suddenly flare-up
and need assistance. It’s perfect for those times you’re in a larger setting
with lots of people, such as a lecture theatre.

A quick word for my high school pals …

This is without a doubt the most crucial time to be learning about menstrual
wellbeing, pelvic pain and conditions like endometriosis. Being equipped
with information and having the potential to fast-track a diagnosis can be
life-changing for young people dealing with this pain.
If that’s you, I want you to listen up, cos Big Sister Bridge over here has
got some advice:
 Don’t be ashamed—period pain, heavy periods, whatever it is going
on downstairs for you, is nothing to feel embarrassed about. It’s real,
it’s important (just like you!) and it’s not your fault.
Communicate—this can feel super daunting but it’s so important that
you chat to your parent/s/guardian about what you are going through
so they can help you. Who knows, they may have gone through the
same thing or know someone else who did! If they’re not across
endometriosis, send them some links from your national
organisation. They may also be able to help obtain a letter from your
GP to give to your teachers should you require any time off,
homework extensions, etc.
The same goes for your friends—I know it can feel weird or like a
taboo topic, but we need to normalise these conversations because
endometriosis is too common to be kept quiet. Plus, your friends
could also be experiencing the same thing and feel scared to bring it
up. You could be opening a vital dialogue that can lead to a
wonderful support system. If you are worried about them feeling
grossed out, show them endogram. You are the exact reason why I
made this account!
Be prepared—like you would at work or uni, put together a little
endo/period kit to store in your schoolbag or locker so you are
prepared at all times. You may have to seek permission to have
painkillers at school but other things like pads, tampons and stick-on
heat pads don’t need approval and they’re really handy.

I would also encourage you to speak with your health coordinator or

school nurse about the possibility of an education program visiting your
school to talk about these topics. Here are a few options:

Australia
In 2018, the Pelvic Pain Foundation of Australia launched the PPEP
Schools Program. I literally squealed when I read the announcement
because if this kind of program had existed when I was in high school, I
swear my diagnosis would not have taken twelve years. PPEP stands for
Pelvic Pain, Endometriosis and Periods and it’s an interactive and
informative one-hour session that allows students to learn more about these
three topics and talk about any concerns they have regarding their own pain.
As of June 2020, the PPEP program had visited over 80 secondary schools,
mostly across South Australia but they can be contacted directly regarding
plans to expand the program across other states.

New Zealand
Endometriosis New Zealand has a similar education program called ME
(Menstrual Health and Endometriosis). This program has been running
since 1995 and was included in a 2017 research study observing
endometriosis education in schools and examining the impact of such an
education program on early recognition of symptoms suggesting
endometriosis. The study found strong suggestive evidence that consistent
delivery of a menstrual health education program in schools increases
adolescent student awareness of endometriosis. In addition, there is some
evidence that in a geographical area of consistent delivery of the program,
there was a shift in earlier presentation of young people assigned female at
birth to a specialised health service.

United States
The creators of the documentary Endo What? have launched a school nurse
initiative within the United States which aims to supply educational toolkits
to school nurses, who are usually among the first to know when teenagers
have endometriosis symptoms. The school kit includes a copy of their
documentary which is suitable to show students, a poster to hang in the
nurse’s room, a downloadable discussion guide to promote open dialogue
and communication between nurses, teachers, administrators and students,
as well as a downloadable sample lesson plan for health teachers to teach a
class about endometriosis.
Finally, I want you to know that high school is not the be all, end all. I
always want you to try your best and even if that isn’t enough to get you
where you want to be, there will be other ways. High school does not
determine the course of your life and neither does your pain. Do what you
can, and know that you still have so much ahead of you. You are more than
your final score!
 13

Rest and play

Self-care
It is so crucial that we, as human beings, look after our mind, body and soul
but I’ll be the first to admit, it is so much easier said than done! I mean,
look at us. We are living in a world that is rushed, demanding and ever-
changing. Our work-life balance is in constant limbo and we are drowning
in social feeds that are crying for affirmation and comparison. We often put
others first, me-time is pretty low on the list of priorities and when we
bump it up, we are ridden with guilt.
You and I both know that dealing with a condition like endometriosis
comes with stress. From physical pain to mental and financial challenges as
we try to deal with it all in the right way—it is exhausting! It also doesn’t
help that your endo symptoms worsen when you’re under the pump from
external sources like work or what is happening in the world (2020,
anyone?). Because of this, you often feel like a burden on everyone and
consequently, you fall into this mindset that your body is undeserving of
love and self-care.
Self-worth is deeply affected by chronic illness and the neglect that
comes with it. Think about it, if our human need to be cared for is rejected
through attitudes of medical professionals and societal expectation, it has a
knock-on effect on how we care for ourselves. This is something that I have
definitely struggled with, but you know what? Enough is enough! It’s time
to snap out of this negative attitude towards ourselves and start attending to
our needs. We NEED some self-care!
What is self-care?
By definition, self-care is the practice of taking action to preserve or
improve one’s own health.
It comes in all shapes and sizes because no two people are the same.
What makes me feel good might be the complete opposite for you, and
that’s okay! Self-care can be as simple as taking the dog for a walk,
switching on a mindfulness/meditation app or cooking a nice meal. Doing a
jigsaw puzzle or reading a book. It’s whatever YOU need to do to feel
warm, fuzzy and in tune with your fine self.
What’s more, self-care isn’t just a one-time quick fix. It needs to be a
continuous action and, like endo, it requires a whole-body approach. We’re
talking physical, mental, emotional, spiritual—all of it! Even the
professional aspect of our lives deserves to be in on the action.
So, how do we do self-care? A good way to start is by taking a moment to
stop and think about the times you have felt good and fulfilled. Where were
you? What were you doing? Who were you with? Write all this down,
pinpoint whether it was an object or an experience and figure out if it is
something you can replicate as part of your shiny new self-care routine.
Second, schedule it into your life. Especially if you are a busy bee, put
some self-care into your diary like it’s an appointment and mark it as high
importance (because it is!). The duration is entirely up to you. We all follow
different routines so whether it’s a five-minute or one-hour practice, it’s
whatever you can fit in that’s going to improve your wellbeing.
Self-care doesn’t have to be expensive either. In today’s world, there are
sooo many organisations and brands trying to capitalise on this concept and,
in a sense, self-care has turned into its own marketplace. This can be good
in that it can bring global recognition to a much-needed ritual, and it may
also help you find new things that you love. On the other hand,
commodification can be Kinda Gross and our needs shouldn’t be taken
advantage of or turned into a marketing tool. Such strategies can downplay
the seriousness of self-care which, by the way, has been recognised by the
National Health Service in the UK as a legitimate practice.
To help you get the ball rolling, I thought I would share some of my
personal favourite acts of self-care.
Bath
I feel like there’s a bit of an attitude that baths are for babies and showers
are for adults but, honestly, screw the haters and get that tap running
because bathing is one of the ultimate ways to relax!
Having a bath really forces you to slow down and literally immerse
yourself in warmth. This is turn calms your mind, muscles and nerves. Not
only that, it’s like a giant liquid heat pack and we know the benefits of heat
relief for endo flare-ups. Bathing is also great for a restful night’s sleep as
your body temperature goes up and your body then works extra hard to
reduce it, making you sleepy.
For that extra oomph, you could throw in a nice bath bomb—but only if
you can be bothered cleaning it up afterwards, especially if it’s a colourful
one. I personally keep things pretty simple in terms of my bath. I love
chucking in some Epsom salts which help the body’s natural detoxification
process and soothe tired muscles. They’re easy to find at a supermarket or
chemist. I also add a few drops of clary sage essential oil because of its
antispasmodic properties and, hey, a li’l aromatherapy never hurt nobody
(except if you are pregnant: use essential oil with caution because some are
not preg-friendly). Light some candles, chuck on some music, a podcast or
even your fave TV show. No judgement here if you wanna get nostalgic
with some bubble bath or toys too. You do you, boo.

Reality TV binge
Whether it’s the sickening looks served on RuPaul’s Drag Race, the drama
of Keeping up with the Kardashians or the wholesome makeovers in Queer
Eye, I have no shame in declaring my love for reality TV. It’s an easy watch
that serves as a welcoming escape and distraction from my pain and other
stresses in my life.

Chocolate
Ah, yes, my one true medicine. Chocolate is like the definition of
indulgence, right? There’s this fancy organic fig and wild orange flavour
you can find at the supermarket and health shops that is my ULTIMATE.
What makes an orange wild, btw? I just visualise a cute little orange
running freely in the forest, is that a wild orange? Anyway, this little
block’o’choc is, like, $7 so I only get it when I really need it but, on the
plus side, it’s gluten and dairy free!

Massage and pedicure

These are things that I don’t get very often but when they happen, it feels
like a real treat. Reduced muscle tension and a pretty set of nails, I love this
for me!

Red wine and a platter

There’s no other reason than red being my drink of choice and platters make
me feel fancy. Depending on your tolerances, this may be a recipe for a
flare-up but sometimes you just gotta throw all f*cks out the window and
go for it!
Face mask/sheet
While I am extremely pro-mask for the pandemic, I’m not referring to the
ones we use for COVID-19. I’m talking about those cold, gooey sheets of
goodness that scream PAMPER! and provide such a therapeutic sensation.
They are hydrating, detoxifying and that fresh, airy feeling when you peel
one off is SO satisfying. Face masks would have to be one of the first things
that spring to mind when you think of self-care and they’re so easy to find.
Have a suss online or check out the beauty section in your local
supermarket, pharmacy or department store. Alternatively, you can buy face
masks in the form of a cream and apply yourself.

Saying no
This one might sound a bit random because I feel like we are constantly
told to say yes to people and opportunities. I mean, there’s a whole film
called Yes Man. But let’s be realistic, you cannot and should not be
expected to say yes to everything, especially when you are suffering.
We want to always show up for people, meet their expectations and make
them happy, but as a chronic-illness sufferer, this can easily turn into a
destructive habit that comes at a cost. Our health. When you don’t honour
yourself and your needs, you may start to foster resentment and regret. This
can lead to even more self-critique and negative self-talk, which isn’t fun.
Given the nature of my work in radio, a lot of people assume that I’m
super extroverted but I’m really quite the opposite. My friends know me as
a nanna and, sure, I’ve probably lost some because they think I’m not fun or
social enough. However, that just means I get to invest more energy into the
friends that respect and understand my boundaries and limitations as
someone who works a demanding full-time job while dealing with endo.
Saying no is never going to be easy, I know that. But sometimes for the
sake of our health and wellbeing, we just have to do it.
Living with endometriosis means we tend to blame our bodies for a lot of
things, but we need to start loving them. We need to change the mindset that
our body is working against us when it’s actually trying to protect us from
pain. We should be rewarding our bodies for looking out for us and self-
care is a good way to do that.
So, repeat after me, self-care ISN’T selfish! It’s an ongoing practice that
is key in maintaining a healthy state of mind and preventing burnout.
As RuPaul says: ‘If you can’t love yourself, how in the hell you gonna
love somebody else?’
AMEN!
Play
Hands up if you’ve ever made super fun plans for the weekend that you’ve
been looking forward to so much only to spend it in bed with endo pain? I
see you!
Throughout my mid- to late-twenties, I have found it harder and harder to
keep up with my various friendship circles. I used to be somebody who
could hit up three live music shows a week with ease but now I’d be lucky
to come out of one without feeling completely exhausted. While my friends
are searching for the closest bar within the venue, I’m looking around for a
seat or a wall I can lean on. I’m usually the first to leave a night out and
often pull a Houdini (or practise ghosting, as some call it) because I simply
cannot be fucked explaining to my drunk buddies why I’m tired or in pain
or that if I keep drinking my ovaries will be super pissed (pun always
intended). Weekends away also require more planning than they used to in
case a random flare-up appears out of nowhere. It can be a hard pill to
swallow but the reality is that these days, my social life is less about
spontaneity and more about preparation.
While there are going to be days when everything sucks and we feel left
behind as the world keeps turning, endometriosis doesn’t have to be a total
life sentence! Easier said than done, I know. But we can still be social, we
just have to be a bit more strategic about how we do it. So, let’s suss our
options!

When you do go out …

You will have your good days when you feel in control of your body and
you deserve to celebrate these moments! If you head out somewhere, take a
moment to plan ahead to save future you any potential distress. Pack some
painkillers and stick-on heat pads, which I personally find sit really well on
high-waisted underwear. If you’re anticipating your period, wear some
period undies. They don’t feel any different to your usual knickers, but the
built-in pad will have you covered in case there’s any unexpected leakage.
 Suss out the area and see whether it is close to public transport or if the
parking is accessible. Even check if there are nearby pharmacies or medical
centres should you need them. If it’s a venue, google whether there’s
seating. To ease any potential anxiety, let a loved one know where you are
going and ask if they could be on stand-by to pick you up should you
suddenly feel any symptoms arise.
Track your pain
I’ve already mentioned the benefits of diarising your pain and symptoms
throughout the book, and it can really come in handy when planning social
events. For example, my period is (fortunately) very regular and because I
know when it’s coming, I will always avoid pencilling in a catch-up or
anything that requires effort, really! Contrary to Bhad Bhabie, you can cash
me inside.

Don’t shame a stay-in

Speaking of! If you can’t go out, it’s not the end of the world. As a proud
couch hermit and devoted dressing-gown wearer, I can absolutely vouch
that staying in is COOL. It’s cheap, it’s comfortable and it can be social!
Case in point: sleepovers. Yep, I’m talking about the ones you did in
primary school. The best part of growing up! I remember them so vividly—
sleeping bags spread across the lounge room floor as my friends and I
would guess what soft drink we were sipping on blindfolded, while
Crossroads was playing in the background (#FreeBritney). Those were
THE DAYS.
Chuck on a movie or TV series, get some board games, whip out some
snacks or get food delivered and chill! I reckon this totally beats a lunch or
dinner out because you don’t have to dress up and you’re not limited to a
set menu. You can eat and drink whatever you feel like! You are spoiled for
choice of screen entertainment thanks to all the streaming services and, hey,
if you feel crappy, heat relief is only a few steps away in the form of
microwaving a heat pack or plugging in your electric heat pad. Bonus
points if you have a guest bedroom so you and your mates can avoid
sleeping bags on the lounge room floor.
Or if a daytime catch-up is more your thing, invite someone over for a
cup of tea or coffee (whatever you can stomach, really). This is a great
alternative if you’re not able to head out but still want to see your friends. I
also think opting for a beverage as opposed to a sit-down meal creates less
pressure in terms of the duration of your hangout.
 All it takes is a text: ‘I’m not feeling up to heading out but I would still
love to see you, so you are welcome to pop over for a tea and we can catch
up.’
Plus, if COVID-19 showed us anything, it is that despite being physically
apart, you can still be social in isolation. From trivia zoom nights to
facetiming over a meal or drink, the pandemic forced people to get creative
with how they interact. One of my favourite hobbies that I picked up in
lockdown was live streaming aerobics classes with a few of my colleagues.
Not only was it a great way to stay connected, but we all got to try
something new together and have a few laughs as we dressed in our finest
eighties attire and grapevined into the weekend.
All of these things became part of the ‘COVID-19 normal’ and I’m super
hopeful that it’s helped our mates gain a better understanding of the times
when our endo pain has not allowed us to leave the house.
Seeking extra support
I really rate support groups, especially the fact that they are not only so
accessible but mostly free! It’s really special to be able to connect with
others who know exactly what you’re going through, and this can be done
in various formats. Online support groups are particularly great for those
days when you just cannot leave the house and also for people living in
rural and regional areas. Face-to-face support group gatherings will usually
take place somewhere that’s been decided by the group so that everyone’s
needs are met. Some organisations like QENDO host various meet-ups
across Australia but, alternatively, you could always organise one in your
area!
 14

Endo is for everyone

From the constant misunderstanding and dismissal of our pain to missing

out on work and social occasions, endometriosis has long proven to be an
isolating experience. I’ve descended to the very depths of loneliness with
this condition, but I have also found great comfort within our patient
community. Unfortunately, not everyone with endo can say the same.
Being a cisgender white woman, I am the billboard for a lot of things in
life. I mean, you literally do hear me on the radio because that is my job,
but I’m also what you see on TV and in magazines. I’m what you see in
window displays and shopfronts, as well as the brochures and posters that
greet you upon stepping inside a medical clinic. I am ‘women’s health’. I
am endometriosis and what doctors and society view in terms of research
and awareness. I think this needs to change.
Reading that might leave you a bit confused. Bridget, what do you mean?
Didn’t it take years to receive your diagnosis? Didn’t your financial
situation prevent you from seeing a gynaecologist? Haven’t medical
professionals failed you?
Yes, yes and yes. I have experienced hardships in life and most certainly
throughout my endometriosis journey. We all have and I’m not here to
discredit any of those challenges. What you and I have gone through is
valid. But this book needs to be for everyone with endometriosis and if I am
going to be a megaphone for endo, it’s really important to me that everyone
feels heard. That cannot be possible unless we give our black, Indigenous,
people of colour (POC), queer, trans and gender-diverse mates the overdue
recognition and inclusion that they deserve. Since basically forever, the
conversations surrounding endo have been exclusive to cisgender white
women and I believe it is on those of us who carry that privilege to help
change this for the better.
 To form a greater understanding of the issue at hand, let’s start with
dissecting what my privilege means. In her 2002 paper ‘Understanding
White Privilege’, Frances E Kendall explains that white privilege is an
institutional set of benefits granted to those of us who, racially, resemble the
people who dominate the powerful positions in our institutions and
establishments. One of the primary privileges is having greater access to
power and resources than people of colour do; in other words, purely on the
basis of our skin colour, doors are open to white people that are not open to
other people. I’ll give you an example. Those of us who are white can pretty
much count on the fact that our nation’s history books will be
overwhelmingly white-centric. Whereas Indigenous Australian, African
American and Native American parents, for example, will know that their
children are not as likely to learn in school about the contributions of their
people. Growing up, my history curriculum mainly focused on white
people. You know, English explorers like Matthew Flinders or John Edward
Eyre. There was zero mention of Eddie Mabo, Woollarawarre Bennelong or
any key Indigenous figure for that matter.
All of us who are white by race have white privileges, although the
extent to which we have them varies depending on a few factors such as
gender, sexuality, age, physical ability, socio-economic status etc. For
example, looking at race and gender, we find that white men have greater
access to power and resources than white women do. White men are paid
more and they are pretty much the default for many medical research
studies. Women have long faced greater disadvantages than men. But both
genders can agree that because we are white, we know we are far less likely
to be killed by the police. We know we are always going to see ourselves
represented in the media. We know we are more likely to access better
health care than black people. The world essentially revolves around
whiteness … and that ain’t a good thing.
Now, we cannot change our privilege. You can’t just opt out or
unsubscribe. But we can change the system. And, honestly, we owe it to the
entire human race to do so. Think about it. How bloody nice would it be to
live in a world where everyone was equal? Where everyone with
endometriosis could access the same care and resources? Where we all felt
seen and supported? We have the power to make this happen but to get it
done, we need to acknowledge where imbalance exists within the
endometriosis community.
Race
Let’s not beat around the bush here: gynaecology was built on racial
injustice. Its history is long and deeply troubling.
James Marion Sims. Ever heard of him? Arguably the most famous
American surgeon of the nineteenth century and the ‘father of modern
gynaecology’, apparently. He developed pioneering tools and surgical
techniques, but his practice was rooted in the slave trade, conducting
gynaecologic research and non-consensual surgery on enslaved black
women without anaesthesia in the 1840s. Why? According to historians,
Sims believed that black women didn’t experience pain the way white
women did. Like, WTF?!
Fast-forward to the late 1930s and the assertion that endometriosis was
linked to delayed pregnancy among white middle-class women. This
conclusion was drawn by Boston gynaecologist Dr Joseph Meigs and it was
based on his almost exclusively white clientele. A similar sentiment was
echoed throughout the 1980s. As the documentary Endo What? reported,
endometriosis was regarded as a ‘career woman’s disease’ and was profiled
around white, professional, highly educated women with insurance.
Even as recently as 2016, the Association of American Medical Colleges
reported that half of white medical trainees believed African Americans had
thicker skin or less sensitive nerve endings than white people. In 2018, an
American study found that black patients were half as likely to be
prescribed opioid drugs in emergency departments for non-definitive pain
as opposed to white patients. Statistics from 2019 also show that black
women were only about half as likely to be diagnosed with endometriosis
compared with white women.
Racism has showed its ugly face throughout menstrual history too. Did
you know that the sanitary belt was invented by Mary Beatrice Davidson
Kenner? In 1956, Mary created an adjustable sanitary belt with a moisture-
proof napkin pocket. This was long before the disposable sanitary pad, so
menstruators relied on cloth and rags, but Mary’s invention decreased the
risk of blood leakages and stained clothes. It was a game changer! The
following year, Mary was able to save up enough money to get her first
patent which gave her a legal right to stop others from making or selling
what she invented without permission. However, the first company that
expressed interest in her creation, the Sonn-Nap-Pack Company, pulled out
of the deal. Why? They discovered that Mary was African American. Mary
never profited from the belt because her patent expired and became public
domain, allowing it to be manufactured freely. Her invention was a
revolutionary step for menstrual hygiene during a time when options were
limited and often uncomfortable, yet she was never paid or credited for her
pioneering work.
Have a think about how many public figures of colour are talking about
endo. There are only a handful, like Whoopi Goldberg and American actress
Tia Mowry. Everyone else is white. Mowry expressed concern about this in
an interview with Women’s Health magazine:

I thought I was alone because no-one I knew personally had

dealt with this. And then I realised: I’d never really seen someone
African American in the public eye talking about endometriosis
or their struggles with infertility. And when you don’t know or see
anyone else who looks like you talking about what you’re going
through, you feel alone and suffer in silence.

For this reason, Tia decided to continue speaking publicly about

endometriosis and it even led her to releasing a cookbook, Whole New You,
full of recipes for the diet she followed to decrease inflammation. She said:

I decided to put it all out there because I wanted to help people

feel less alone—and supported. I also want to raise awareness.
As black women, we’re particularly at risk for endometriosis, yet
so many of us don’t even know what this condition is. If more of
us talked about it, more women might say: ‘Hey, I’ve had those
symptoms, let me go get checked.’ Compared to other
communities, it feels like there’s a void when it comes to talking
about healthy living and medicine from African American
women, for African American women.

Jenneh Rishe, co-founder of American non-for-profit organisation The

Endometriosis Coalition, echoes this comment about representation.
 I have found that, culturally, health is not something the African
American community tends to speak about publicly in general. I
had a difficult time getting this community to engage and found
they were more comfortable messaging me privately. I found that
there was a lot of misinformation circulating specifically within
the African American community, and I think that can be
attributed to not feeling comfortable reaching out to many of the
other endo advocates and organisations that are predominantly
white.

This issue is not limited to African Americans and, as we saw in 2020,

the Black Lives Matter movement forced other countries to look at their
own backyards. For us in Australia, that means reflecting on the barriers
that our Indigenous communities face in particular. Did you know that
Australian Indigenous women are 1.6 times less likely to be admitted to
hospital for endometriosis? Various factors contribute to this statistic, such
as difficulty accessing health care, the costs associated with treatment and
cultural differences in healthcare-seeking behaviour. I remember speaking
with one of my endogram followers who is Indigenous, and she said that
while some of her relatives were suffering, conditions like endometriosis
are simply not discussed in her mob. No-one is providing them with vital
information or support and they are left to suffer in silence.
So, what needs to be done? For Jenneh Rishe, it starts with recognition.

I think acknowledging the negative history between the medical

community and African American people is something that needs
to be on the forefront of every healthcare practitioner’s mind.
There is a guard that is up and rightfully so. Learning cultural
sensitivity and applying it to their practice has to be something
they are constantly working towards.

Jenneh also outlines the need for a more welcoming and inclusive
environment.

That could be as simple as sharing more black stories and black

faces on our social media platforms or by addressing and
 educating about the inequities that black women face within
healthcare.

The same goes within Australia. I would love to see the prevalence of
endometriosis in our Indigenous communities become a real research
priority, as well as funding for education programs in rural and remote
areas. National organisations need to be leading the conversation and
amplifying these voices and the medical community needs to look at
providing culturally competent care so there is reduced inequality in
healthcare outcomes. The 2018 National Action Plan for Endometriosis
noted that there is a need for improved accessibility for people in rural and
regional areas, as well as Aboriginal and Torres Strait Islander people,
culturally and linguistically diverse communities, transgender and non-
binary people, people with disabilities and disadvantaged groups. There was
also a call for action in supporting the development of endometriosis-
specific media and awareness materials that are tailored for these
communities, however at the time of writing this book, I have not come
across any public updates about actioning these points.
Gender and identity
I’ve had so many interactions with different people on endogram but one I
will never forget was within the first few weeks of launching the account in
2019. I shared a post that read ‘You Are Not Alone’ with the caption
highlighting stats on how many women suffer from endometriosis. I didn’t
think much of it, but that was the exact problem.
One person commented: ‘Try to be aware not to use gendered language
pls … Non-binary, trans and other gender-diverse people are capable of
getting endo (I myself am nb … don’t have endo but being nb (non-binary)
makes me hyper aware of gendered language).’
You know how on the internet, people can be so quick to jump on things
and shame others for getting something wrong, even if the intent was good?
Especially without giving that person a chance to learn or even realise what
they’ve done? It’s partly why cancel culture is such a scary thing for people
posting online. This person could have easily done that to me but, instead,
they politely and fairly pointed out a big flaw in my attempts to raise
awareness for endometriosis (Thank you Magnus!). I wasn’t being inclusive
and I really was coming from a position of privilege. I deserved to be held
publicly accountable and I’m thankful that this follower did so in such a
considered manner. Their comment really opened my eyes because, as a
woman, I know firsthand how hard it has been for my pain and symptoms
to be taken seriously. Can you imagine just how difficult it would be to
navigate the medical system for a ‘women’s health’ condition when you
don’t even identify with that gender?
A few months later, I shared a post to express how much I had learned
regarding the use of gendered language within the endo community. The
response was mostly positive, but one comment really irked me:

What offends me is y’all taking your eye off the ball. Bringing
awareness and more research to a disease I’ve fought for 28
years. But sure, let’s focus on this other thing … cause we aren’t
taken … seriously [enough] as it is. I’m not inclined to follow a
page that cares more about the feelings of maybe .1% of your
followers than the vast majority of your followers who have
 suffered with this wretched disease for decades. SJW (social
justice warriors) everywhere.

Here’s the thing, when we say that endo is for everyone, we are allowing
more people to speak up, be heard and join the fight. The more the merrier!
When we say that endometriosis is a ‘women’s health’ issue, we are
actively excluding and dismissing the experiences and struggles of those
with endo who do not identify as female. Just ask Cori Smith from New
York, a transgender man with endometriosis, who I had the pleasure of
speaking to in September 2019 for The Hook Up, triple j’s show on love and
f*cking. No, really, that’s the official program description. For Cori, the
current language surrounding endo has had a huge effect. ‘Honestly, it
makes you feel unseen,’ he told me. He went on:

It’s very scary just being trans in the world today and then on top
of that to find that the community that you thought would
understand you the most, to be told that we’re just a small
percentage and that we don’t matter so you shouldn’t have to
change your dialogue or language. It invalidates my entire
lifelong battle with this disease, every surgery that I’ve had, all of
the discrimination I’ve faced, not to mention the pain that I still
experience today.

Someone else I spoke to for this package was Jess Tilley from my
hometown of Ballarat. Jess identifies as non-binary and has been constantly
misgendered throughout their consultations with various medical
professionals.

Every time I saw a new doctor it was a whole new thing, like you
just need to get pregnant and you just need to find the right boy,
or you’re a woman, why don’t you do this? And it was really
disheartening to hear that from people who are supposed to be
professionals, that are supposed to help people no matter what.

Since our chat, I have been so proud to see Jess use their voice as a
patient advocate and join QENDO as a facilitator for their inclusive
Facebook support group, QENDO & Co.
To gain a professional perspective on endometriosis within the trans,
gender-diverse and non-binary community, I reached out to Grace Lee.
Grace is counsellor with Equinox, a trans and gender-diverse healthcare
service in Melbourne. Established through extensive consultation with the
trans, gender-diverse and non-binary (TGDNB) community, Equinox is a
safe space where these patients can feel respected, understood and affirmed.
Staff at Equinox include many TGDNB people and all staff have been
trained in working with TGDNB patients, so they can explain processes in
detail and can refer patients to TGDNB-affirmative specialist practices
where needed.
Grace has witnessed firsthand the struggles that TGDNB patients face
when it comes to seeking help for their health issues.

The medical system can be anxiety provoking and traumatic. Too

often, the medical services make gendered assumptions about
patients that just don’t fit. Most endometriosis services will be
categorised under gynaecology or women’s health. This creates
discomfort or distress for transmasculine people attending such
services.

As Grace explains, negative experiences can start as early as booking an

appointment. Having a masculine name and deeper voice can complicate
things as clients may be questioned or asked to repeat their name or clarify
if the appointment is for someone else. It can continue at reception and in
the waiting area—again, patients may need to use their deadname from
their Medicare card, and some practices insist on using that name for
bookings, reports or prescriptions. This outs the patient again and causes
anxiety and distress when they have to explain to reception or in front of
other patients. Likewise, a patient might be called from the waiting room by
a clinician using their deadname which will immediately out them to
anyone else there.
Not to mention the medical procedures that involve intimate physical
examinations. TGDNB patients may experience levels of gender dysphoria
and dysmorphia that make such examinations extremely distressing and
may result in them not presenting for examination. For those not sure of
these terms, gender dysphoria involves a conflict between a person’s sex
assigned at birth and the gender with which they identify, and dysmorphia is
where a person spends a lot of time worrying about flaws in their
appearance.
According to Grace, a common experience in medical situations for
TGDNB patients is that the clinician seeing them may not know or
understand much about trans health. Grace says:

In these situations, the clinician often questions the patient as a

way of educating themselves—placing a burden on the patient.
Further, some clinicians will refuse to treat the patient because
the clinician claims they don’t understand the impacts of, for
example, hormone therapies, and suggests that the patient see a
specialist gender health practitioner. Many TGDNB patients will
have experienced various forms of discrimination within health-
service contexts and, coupled with past trauma, will often be
anxious, hyper vigilant, and hypersensitive to the interaction with
medical staff.

So, what can be done to ensure everyone with endo feels safe and
included? For Grace, it’s a joint effort between medical professionals and
the patient community. Grace says:

Seeking education relating to trans-affirmative practices is

critical. Patients should not be educating practitioners. It is
important that practices review their procedures, their forms and
record systems, their staff training and the principles on which
they operate. Specialist training and capacity-building
organisations are able to provide training, consulting and
auditing across the range of services provided to TGDNB
patients.

As for the wider patient community, it really starts with our own
conversations. I recently attended a webinar on the role of Pelvic Therapy,
hosted by Hela Health and Amy Stein. Not once in the hour-long session,
did these two speakers mention the word ‘women’. It was always about the
patient. And it was so easy! When I talk about eliminating gendered
language from our vocabulary, I don’t mean that you cannot call ANYONE
a woman ever again. You can always use your preferred personal pronouns
when you are talking about yourself or if you’re chatting to a group that you
know all identify as women. That’s fine and it makes sense! But when it
comes to addressing large groups of people with endo, it’s important to
adjust our language to cater for that. It may seem a little difficult at first, but
it will come naturally after some practice. A great starting point would be
these examples adapted from The Endometriosis Network Canada.

As Grace articulated so well, endometriosis is a condition that often

results in patients suffering physical pain and mental distress. This is a
shared experience that can bring patients together in supportive and helpful
ways. Grace says:
 Perhaps the endometriosis community can consider how it can
provide support to all those who suffer with the condition. To
acknowledge that this isn’t simply the preserve of cis women, but
that anyone who has or had a uterus (and those who never had
one) are susceptible to this condition. For support groups and
societies to think about how they present their services (often
assuming those are exclusively for cis women), but rather to
focus on the condition itself and the impact it has.

If you are trans, non-binary or gender diverse, you are valid. You deserve
to be seen, heard and supported.
Alexa, play ‘We’re All in This Together’ from High School Musical. ♡
 15

For the friend, colleague, relative

or partner

Hello loved one!

If you are reading this chapter, it’s because someone who values you in
their life wants you to know about something else that is a big part of their
life—endometriosis. You may have witnessed their struggle at home
firsthand or just noticed the suspiciously large number of heat packs lying
around. Perhaps it was at work, with their empty desk greeting you more
often than usual. Maybe you were sitting across from them at a lunchtime
catch-up and spotted them squirming in their seat but insisting everything
was fine. Perhaps you had no idea until now. Whether they passed this
chapter on or you have sought out this book for your own learning, it means
a lot that you are here.
Endometriosis can be a super hard thing to talk about for numerous
reasons. I know I have struggled to explain my illness to others and quite
often I will downplay it, simply because it is easier. It can be really
exhausting telling people that it’s actually so much more than a bad period
and that it’s not something that surgery, let alone yoga or celery juice, can
‘fix’. When people with endo detail the true reality of their condition, they
tend to feel like they are being a buzz-kill or they’re worried that you’ll
think they’re exaggerating because that’s what some doctors have insisted.
It can also feel like talking about their illness is accepting defeat; that they
have lost control of it. But although they may struggle to find the words
sometimes, they want you to know about their endo and how you can both
deal with it to make your relationship the best it can possibly be. Your
relationship deserves that.
 By no means are you expected to be an expert on endo because honestly,
this shit is complicated. But even just knowing the basics (see Chapter 1)
and understanding the true meaning of chronic illness is a huge help.
When we talk about a chronic illness, we are talking about something
that is long term and generally uncurable. Inconsistent in its pain and like a
constant state of grey looming over our bodies, striking when it pleases.
Sadly, chronic illness is remarkably common. In fact, nearly 50 per cent of
Australians live with chronic illness—that’s 11.4 million people. The reason
it’s perceived as rare, however, is because it is endured in secret. When
you’re fighting a battle that no-one can see, you have no choice but to adopt
a strong poker face. In her recent interview with Buzzfeed’s deputy editor
Lara Parker for Vanity Fair, writer Maham Hasan spoke about the
complexities behind the term chronic illness:

The word chronic, when you finally grasp it, is so hard to

comprehend. It’s like going through the death of a loved one
because, over time, it gets a little easier to live with the fact, and
then out of nowhere it will hit you really, really hard again.
Walking in our shoes
The COVID-19 pandemic drew some clear parallels to the chronic illness
experience. Think about it: the unstable work, the sudden lack of physical
interaction and isolation. Heck, even panic buying, except we’re talking
stick-on heat pads rather than toilet paper.

The pandemic forced millions of people to confront a huge sense of

uncertainty and the people who arguably endured it the best were those with
chronic illness. Why? Because our lives didn’t change that much. Don’t get
me wrong, the pandemic definitely presented problems for the chronically
ill—surgeries were postponed and cancelled. Mine was in limbo but,
luckily, I snagged a spot right in the tiny window of freedom before the
second wave of COVID-19 hit Melbourne. There have also been limited
appointments for physio and acupuncture, and even prescriptions for pain
management have been affected. But a large portion of lockdown was
already our reality.
Strangely, the one element of comfort from the global impact of COVID-
19 was that it forced everyone to reassess how they live. We saw more
effort and creativity in taking our social interactions online and overall a
greater sense of empathy. Our loneliness was shared collectively and
throughout the pandemic, you gained a taste of life with chronic illness. The
one thing I would ask (and I say this with the biggest puppy eyes ever) is
that you don’t forget what you experienced—please, keep us in the picture.
Talk it out
For all relationships, whether they are intimate or professional,
communication is key. But what should you say to something who is
dealing with endometriosis? It can be an intimidating conversation for you
to be part of, let alone initiate, so allow me to give you a heads up on some
things we really appreciate hearing and things that should probs be avoided.
Keep in mind, these are general tips and the choice of words should match
your intimacy level.

What not to say

‘Have you tried …’

On one hand, we know this is usually coming from a good place but
before providing advice, especially if it is unsolicited, it would be
really helpful to trust that we have spent a lot of time researching and
trying anything and everything under the sun. Also consider whether
your suggestion rides more on scientific backing or something like this
…

‘My friend’s sister’s cousin had endo but since having a kid/starting
yoga, they’re fine!’
It’s important to remember how individualised endometriosis is and
whilst it’s super awesome that your friend’s sister’s cousin is feeling
tops, that won’t be the case for everyone. There is no known cause and
no known cure for this condition and symptoms vary. Plus, it’s very
easy to interpret this kind of statement as a suggestion that we are not
trying hard enough to help ourselves.

‘Be positive.’
I’m all about optimism but telling someone to just be positive kinda
implies that their symptoms or level of pain is dependent on their
ability to be optimistic. If only it were that simple. Plus, a continuous
 emphasis on positive thinking is quite dismissive of chronic pain and
leads to victim blaming. Positive thinking is literally not going to
prevent the growth of my endo; it’s not going to unstick my left ovary
from adhesions. The reality is that people with good attitudes don’t
always overcome health problems and that is okay. It is okay to not be
okay. Life isn’t LEGO and in order to overcome any negative emotion,
we have to acknowledge it’s there. Toxic positivity does not allow that.

‘But you don’t look sick!’

Despite the fact that how I look is not always representative of how I
feel, this statement implies we are lying about our illness, even though
we have a medical diagnosis. Like, what do you need to see in order to
believe me? The actual endo itself? I can scan you my surgery pics,
will that do the trick? How do you want me to look?

‘You seemed fine yesterday!’

It can be a damaging assumption that chronic illness means being
bedridden 24/7 or that we cannot be ‘fine’ one day, and not the next.
We’re not faking being sick, we’re faking being well.

What to say

‘I’m here to listen and support you.’

This is a really nice and direct way of reassuring us that we are not
alone and that we will be listened to without judgement.

‘How is your pain?’

When asked how we are, we will usually say we’re fine because it’s
easier. But by asking how our pain is, you are acknowledging that it’s
real.

‘What do you feel like eating. Let me drop something off for you.’
Offering a specific item like food, or a particular gesture like helping
with a chore, feels more effective than saying ‘Let me know if you
need anything’ because it eliminates the pressure of us thinking of
something that we need, which we might then think is too much of an
imposition to ask for.

‘Don’t sweat if you don’t feel up for a catch-up/chat, I understand, and

I’ll be here when you’re ready.’
Trust me when I say that we feel like utter shit if we have to bail on
plans. Saying something like this makes us feel less shit. There are
going to be times when we can’t see you or talk about what’s going on,
and there will be times when we may not want to. But please don’t
take our pain personally. It’s not you and it’s not us. It’s endometriosis.

‘I just wanted to check in and say that I’m thinking of you.’

One of my oldest friends, Gemma, is the queen of sending these
messages. We can go months without seeing each other but there’s
never any tension and she is always checking in on me. Such a simple
gesture can bring so much comfort.
Your role
Endometriosis is a disease that sticks to our everyday decisions much like it
attaches itself to our organs. It’s persistent and exhausting. Its unpredictable
nature can also cause significant changes to the dynamic of a relationship
and the roles we play. For example, when Jenno and I started officially
dating over four and a half years ago, never in our wildest dreams did we
think that nights in with a heat pack would become the norm. Or that he
would become the primary cook when I was in too much pain to function
around the kitchen. At times, I have definitely felt more like a patient than a
partner, but he always assures me that’s not the case. And, let’s be real, as
long as the boy has his footy to watch or Tony Hawk’s Pro Skater 2 to play,
he’s chill.
If you know somebody with endo, anticipate that there will be shifts in
your relationship. It’s important to get on the same page and communicate
any feelings or ideas concerning the responsibilities on both sides. We can’t
assume that everyone can read minds, so these conversations are super
important to have.
I asked my endogram followers what else our loved ones can do to make
life with endo just that little bit easier. They said:

‘Pyjama parties and coming over to watch TV instead of going out.’

‘Sit with me when it hurts too much to move.’
‘Still invite us to things, even if we’ve said no before.’
‘Understand that we are trying our best.’
‘Accept our limitations.’
‘Celebrate our good days and support our bad days.’
Look after yourself too
Have you ever heard of compassion fatigue? It’s a legitimate condition that
affects people who absorb the stress and emotions of those suffering from
traumatic experiences like chronic or terminal illness. In order to treat these
stresses, some good old self-care strategies need to be applied. It’s a big red
flag if you find yourself swirling helplessly in the chaos of chronic illness,
unable to find your feet, so be sure to take time out for yourself and do what
makes you feel good. We still want you to live a fulfilling life!
There are also support services that are available to you. I’ve seen
numerous online groups for friends, family and partners of those with endo
to connect and share tips with one another. Plus, the QENDO 24/7 support
line is for anyone affected by endometriosis, PCOS and/or adenomyosis,
and that includes carers, parents and partners. You can find the number at
the end of this book alongside some other great resources you may want to
check out.
Basically, don’t set yourself on fire trying to keep others warm. You gotta
look after yourself too.
 A final word

So here we are … The end of the book! You made it! How are you feeling?
I hope you are feeling good. I hope you are feeling comfort in knowing
that you are not alone and I hope that what you read in this book makes you
feel empowered and better equipped in taking on your endometriosis on
your own terms.
It’s not easy, it never was, and you will still have your shitty moments.
That’s okay. But what I want you to know is that you can still live a
beautiful life and you deserve to live a beautiful life, with or without endo.
It’ll take some work; it’ll take a few mistakes. There will be days where
you feel like you are making progress only to stumble and fall but, my
friend, you will get back up.
You will feel like you have lost part of yourself, but you will gain new
parts that are wiser and stronger. Parts that don’t take shit from nobody!
Life with endometriosis is not easy, but hopefully this book can help
make it easier.
Now, go get ’em!
 Acknowledgements

First, I would like to acknowledge the Wurundjeri people of the Kulin

Nation who are the traditional custodians of the land which I have the
absolute privilege to work and live on. I would also like to pay respect to
the Wurundjeri Elders, past and present, and extend this respect to
Aboriginal and Torres Strait Islander people from other communities who
are reading this book.
Writing a book is never an easy feat but doing so in a unique time like
2020 was, uh, really something! Throughout the process of researching and
drafting, I experienced two Melbourne lockdowns due to COVID-19, one
endometriosis surgery, five painful periods and countless days of attempting
to Get Shit Done on the couch, while my partner was shredding on guitar in
his study, teaching students online. I was also working my regular full-time
job so I might just quietly pat myself on the back.
However, How to Endo was not all me. This project has been a such a
beautiful team effort and I simply could not have done it without the
following people.
Claire Kingston, who believed I could use my voice through means of
writing something so big like this. Tessa Feggans for helping me reach that
glorious finish line and Alice Grundy and Emma Rafferty for making sure I
did it in an articulate fashion. Words are hard! Alissa Dinallo for the fab
cover design and Mika Tabata for the cute as heck illustrations; I’m
particularly stoked we could get some nugs in here. My literary agent aka
book wingwoman, Pippa Masson. Thank you all for answering my silly
questions when I didn’t know what the heck I was doing.
Every single legend who contributed to this book—Marika Day, Alison
Harding, Lauren Gannon, Chantelle Otten, Jessica Taylor, Grace Lee, Jade
Walker, Georgia Stuart, Claudia Wright, Brooklynn Chess, Jenneh Rishe,
Elise Naismith, Katie Lovelock, Tori Hobbs and Swathi Sundaram. Thank
you SO much for generously sharing your expertise and experiences.
To Mum and Dad, for your support and understanding as I went a little
M.I.A. to get this done. I can’t wait to come home again. To Jenno, for your
never-ending patience despite always copping the full brunt of my stress
and anxiety. I owe you a million VBs and potato cakes.
Shout-out to SBS Chill, ABC Classic and the Calming Acoustic playlist
on Spotify. Your music proved to be very good background noise as I typed
relentlessly on the couch. Highly recommend.
Iris Orbuch and Amy Stein, who I have never met but who educated me
with their book, Beating Endo.
Last, but certainly not least—the endometriosis community. I am forever
grateful for your support and I am constantly inspired by your passion and
drive in raising awareness and advocating for better care. This is for you.
 Recommended resources

Australia
QENDO—www.qendo.org.au
QENDO Helpline—1800 ASK QENDO (1800 275 73636)
Endometriosis Australia—www.endometriosisaustralia.org
EndoActive—www.endoactive.org.au
Pain Australia—www.painaustralia.org.au
Pelvic Pain Foundation of Australia—www.pelvicpain.org.au
Continence Foundation of Australia—
https://www.continence.org.au/pages/how-do-pelvic-floor-muscles-
help.html
Pain Link Helpline (call-back service)—1300 340 357

Worldwide
World Endometriosis Society—https://endometriosis.ca
Endometriosis.org—www.endometriosis.org
Nancy’s Nook Endometriosis Education—https://nancysnookendo.com (or
Nancy’s Nook Endometriosis Education on Facebook)
Center for Endometriosis Care Patient Library—https://centerforendo.com/
resources
International Pelvic Pain Society—https://www.pelvicpain.org
Endopaedia—www.endopaedia.info
Tame the Beast—www.tamethebeast.org (a free online education tool that
aims to inspire research-based action in the treatment of chronic
pain)
For support groups and organisations specific to your country, please visit
http://endometriosis.org/support/support-groups/

Online tools
iCareBetter—https://endo.icarebetter.com
RANZCOG Rate Tool—https://ranzcog.edu.au/womens-
health/patientinformation-guides/other-useful-resources/rate
The Pain Perception Project—https://www.painperceptionproject.com

Books
Beating Endo—Iris Kerin Orbuch MD and Amy Stein DPT
Pain and Prejudice—Gabrielle Jackson

Documentary
Endo What?—www.endowhat.com
 Endnotes

Chapter 1: Endo 101

p21 endometriosis classifications: Nikolaos Machairiotis et al.,
‘Extrapelvic endometriosis: a rare entity or an under diagnosed
condition?’, Diagnostic pathology, Vol 8(194), 2 December 2013,
<www.ncbi.nlm.nih.gov/pmc/articles/PMC3942279/>
p21 varying appearances of endometriosis: Patrick Yeung Jr et al.,
‘Complete laparoscopic excision of endometriosis in teenagers: is
postoperative hormonal suppression necessary?’, Fertility and
Sterility, Vol 95(6), 18 March 2011, pp. 1909–12,
<www.fertstert.org/article/S0015-0282(11)00335-9/fulltext> and
Dan Martin, Laparoscopic Appearance of Endometriosis, Second
Edition, 1990–2020, Resurge Press, Richmond, accessed 2020,
<www.danmartinmd.com/files/coloratlas1990.pdf>
p22 top twenty most painful health conditions: Gemma Mullin, ‘NHS
20 most painful conditions’, The Sun, 9 November 2019,
<www.thesun.co.uk/news/10307035/nhs-reveals-20-most-painful-
conditions/>
p24 ‘But this pain …’: Gabrielle Jackson, Pain and Prejudice, Allen &
Unwin, Crows Nest, 2019
p25 endometriosis theories and a number of factors: Center for
Endometriosis Care, ‘Endometriosis: A complex disease’, 2018,
accessed 2020, <www.centerforendo.com/endometriosis-
understanding-a-complex-disease>
p25 one in nine have endo: Endometriosis Australia, ‘Endo Facts’,
2018, accessed 2020, <www.endometriosisaustralia.org/research>
p25 silent epidemic: Kathryn Perrott, ‘Endometriosis: Health system
“oblivious to suffering” of one in 10 women affected by “silent
epidemic”’, ABC News, 24 March 2017,
<www.abc.net.au/news/201703-24/endometriosis-health-system-
oblivious-to-suffering-of-women/8331534>
p25 it’s not just a women’s health issue: M. Zámečník and D.
Hoštáková, ‘Endometriosis in a mesothelial cyst of tunica vaginalis
of the testis. Report of a case’, Cesk Patol, Vol 49(3), June 2013,
<www.ncbi.nlm.nih.gov/pubmed/23964911>
p26–7 fatigue: Endometriosis Foundation of America, ‘Endometriosis
Symptoms: Fatigue & Personality Changes’,
<www.endofound.org/fatigue-personality-changes>
p29 Endo has been classified into four stages: Neil P Johnson and Lone
Hummelshoj et al., ‘World Endometriosis Society consensus on the
classification of endometriosis’, Human Reproduction, Vol 32(2), 1
February 2017,
<https://academic.oup.com/humrep/article/32/2/315/2631390>
p29 $837,433 to endometriosis research: Kathryn Perrott, op cit.
p30 evaluate physical attractiveness in women: P Vercellini and L
Buggio et al., ‘Attractiveness of women with rectovaginal
endometriosis: a case-control study’, Fertil Steril., Vol 99(1), 2013,
<https://pubmed.ncbi.nlm.nih.gov/22985951/>
p30 ‘We are way behind’: Peter Rodgers, ‘Priorities for
Endometriosis’, Research presentation, RANZCOG Annual
Scientific Meeting 2019,
<www.instagram.com/s/aGlnaGxpZ2h0OjE4MDc4MjYzOTU5MT
g2MTkx?
igshid=1muudgg45krng&story_media_id=2154837118852164473>
p30 National Action Plan for Endometriosis: Department of Health,
Australian Government, July 2018, accessed 2020,
<www.health.gov.au/resources/publications/national-action-plan-
for-endometriosis>
p31 Hysterectomy does not cure endo: ‘Ten Endometriosis Facts’,
Endometriosis Australia, 2014, accessed 2020,
<www.endometriosisaustralia.org/endometriosis-facts>
p31 Pregnancy does not cure endo: Matthew Roser, ‘Top 10 BS Myths
About Endo’, Endo What?, 16 June 2016,
<www.endowhat.com/top10-bs-myths-about-endometriosis/>
p32 Teenagers can get endo: Ros Wood et al., ‘Myths and
misconceptions in endometriosis,’ Endometriosis.org, 20 November
2016, accessed 2020,
<http://endometriosis.org/resources/articles/myths/>
p32 human foetus: C Bobel and I Winkler et al., ‘The Womb Wanders
Not: Enhancing Endometriosis Education in a Culture of Menstrual
Misinformation’, Palgrave Macmillan, Singapore, July 2020,
<https://link.springer.com/chapter/10.1007/978-981-15-0614-7_22>
p32 Menopause does not stop endo: @endogirlsblog, Instagram, 22
July 2020, <www.instagram.com/p/CC6odygDund/?
utm_source=ig_web_copy_link>
p32 Birth control does not stop endo: Ros Wood et al., op cit.
p33 Endometriosis is not a menstrual disease: @endogirlsblog,
Instagram, 19 August 2020,
<www.instagram.com/p/CECW3HYDX6u/?
utm_source=ig_web_copy_link>
p33 Endometriosis is not the endometrium: Ros Wood et al., op cit.

Chapter 2: Diagnosis
p35 six and a half years for diagnosis: Endometriosis Australia, ‘Endo
Facts’, 2020, <endometriosisaustralia.org/research>
p36 normalisation of period pain: G Hudelist and N Fritzer et al.,
‘Diagnostic delay for endometriosis in Austria and Germany: causes
and possible consequences’, Human Reproduction, Vol 27(12),
December 2012,
<https://academic.oup.com/humrep/article/27/12/3412/650946>
p36 Isaac Brown Baker: ‘On the Curability of Certain Forms of
Insanity, Epilepsy, Catalepsy, and Hysteria in Females,’ Manhattan
College Omeka, 1866, accessed 2020, <https://omeka-
pilot.manhattan.edu/items/show/396>
p37 reddit thread: Reddit, June 2020,
<www.reddit.com/r/Endo/comments/gutwl5/in_an_ask_reddit_threa
 d_about_surprising/>
p40 RANZCOG/AGES guidelines for performing gynaecological
endoscopic procedures: RANZCOG, first published 1993, last
updated July 2019,
<https://ranzcog.edu.au/RANZCOG_SITE/media/RANZCOG-
MEDIA/Women%27s%20Health/Statement%20and%20guidelines/
Clinical%20-%20Training/Guidelines-for-performing-
gynaecological-endoscopic-procedures-(C-Trg-2).pdf?ext=.pdf>

Chapter 3: Surgery and recovery

p53 Orbuch recalls one patient … : Dr Iris Orbuch and Dr Amy Stein,
Beating Endo, HarperCollins, New York, 2019, p. 213
p55 the splinter analogy: Dr Abhishek Mangeshikar, The Indian Centre
for Endometriosis, Facebook, 13 July 2020,
<www.facebook.com/endometriosisICE/posts/1003259433515672?
comment_id=1004272660081016&reply_comment_id=1004398616
735087>
p65 ‘this disease is by far’: Dr Jeff Arrington, The Center for
Endometriosis Care , Instagram, 8 May 2020,
<www.instagram.com/p/B_7QiYpgWpt/?
igshid=n79nrhb4jxrp&fbclid=IwAR2cKmlNl44DiRSviiFlPcp6cvuI
LPtiMQcxEx7fXCNOcAq09H0TPJZwYHk>

Chapter 4: Associated conditions

p69 types of adenomyosis: Mohamed A Bedaiwy and Tommaso
Falcone, ‘Chapter 13—Endometriosis and Adenomyosis’, General
Gynaecology, 2007, pp. 321–45,
<https://www.sciencedirect.com/science/article/pii/B978032303247
6100139>
p70 another key sign of adeno: G Levy and A Dehaene et al., ‘An
update on adenomyosis’, Diagnostic and interventional imaging,
January 2013, Vol 94(1), pp. 3–25,
<https://pubmed.ncbi.nlm.nih.gov/23246186/>
p73 Rotterdam Criteria: Majid Bani Mohammad and Abbas Majdi
Seghinsara, ‘Polycystic Ovary Syndrome (PCOS), Diagnostic
Criteria, and AMH’, Asian Pacific Journal of Cancer Prevention, 1
January 2017, Vol 18(1), pp. 17–21,
<www.ncbi.nlm.nih.gov/pmc/articles/PMC5563096/>
p75 research suggests the nervous system is involved: Isabelle
Amigues, ‘Fibromyalgia’, American College of Rheumatology,
March 2019, <www.rheumatology.org/I-Am-A/Patient-
Caregiver/DiseasesConditions/Fibromyalgia>
p75–6 the severity and debilitating nature of some of the symptoms: B
Walitt and RL Nahin et al., ‘The Prevalence and Characteristics of
Fibromyalgia in the 2012 National Health Interview Survey’, Plos
One, 17 September 2015,
<www.ncbi.nlm.nih.gov/pmc/articles/PMC4575027/>

Chapter 5: Social media and self-advocacy

p84 approximately 70,000 health-related searches every minute: Margi
Murphy, ‘Dr Google Will See You Now: Search giant wants to cash
in on your medical queries’, The Telegraph, 10 March 2019,
<www.telegraph.co.uk/technology/2019/03/10/google-sifting-one-
billion-health-questions-day/>

Chapter 6: Let’s get physical (therapy)

p99 $30,000 per year: Mike Armour et al., ‘The cost of illness and
economic burden of endometriosis and chronic pelvic pain in
Australia: A national online survey’, Plos One, 10 October 2019,
<https://journals.plos.org/plosone/article?
id=10.1371/journal.pone.0223316>
p110–11 Easy stretches to relax the pelvis: The Pelvic Pain Foundation
of Australia, accessed 2020, <www.pelvicpain.org.au/easy-stretches-
to-relax-the-pelvis-women/?v=ef10366317f4>
p113 the effect of yoga on the vagus nerve: Dr Iris Orbuch and Dr Amy
Stein, Beating Endo, HarperCollins, New York, 2019, pp. 201–2
p114 in 2017, Brazilian researchers: Andrea Vasconcelos Gonçalves et
al., ‘The Practice of Hatha Yoga for the Treatment of Pain
Associated with Endometriosis’, The Journal of Alternative and
Complementary Medicine, 1 January 2017, pp. 45–52,
<www.liebertpub.com/doi/10.1089/acm.2015.0343>

Chapter 7: Mental health matters

p118 nearly 50 per cent stated they have experienced suicidal thoughts:
Endometriosis UK, ‘BBC research announced today is a wake-up
call to provide better care for the 1.5 million people with
endometriosis’, 7 October 2019, <www.endometriosis-
uk.org/news/bbc-research-announced-today-wake-call-provide-
better-care-15-million-endometriosis-37606#.XyC5Jy1L3u0>
p127 1449 studies on mindfulness: ‘The Honest Truth About
Mindfulness’, Smiling Mind, 14 May 2020,
<https://blog.smilingmind.com.au/the-honest-truth-about-
mindfulness-setting-yourself-up-for-success>
p128 as outlined by the MiCBT Institute: ‘What is Mindfulness-
integrated Cognitive Behaviour Therapy?’, MiCBT Institute,
accessed 2020, <https://mindfulness.net.au/what-is-micbt.html>

Chapter 10: Complementary therapies

p154 Dr Mike Armour for Endometriosis Australia: ‘What Role Can
Complementary Medicine Play In Managing Endometriosis’,
Endometriosis Australia, 2019, <
www.endometriosisaustralia.org/post/2019/10/09/what-role-can-
complementary-medicine-play-in-managing-endometriosis>
p156 TCM and the connection between mind, body and environment:
K Rubi-Klein et al., ‘Is acupuncture in addition to conventional
medicine effective as pain treatment for endometriosis? A
randomised controlled cross-over trial’, Eur J Obstet Gynecol
Reprod Biol, 2010, Vol 153(1), pp. 90–3,
<https://pubmed.ncbi.nlm.nih.gov/20728977/>
p162 Look around your home … : Mary Ballweg, ‘Endometriosis &
dioxins: information for physicians, nurses, and other healthcare
professionals’, Endometriosis Association, January 1998,
<www.researchgate.net/publication/272349987_Endometriosis_diox
ins_information_for_physicians_nurses_and_other_healthcare_prof
essionals_from_Endometriosis_Association>
p173 What’s it got to do with endo?: ‘Medicinal cannabis products:
Patient information’, Australian Government Department of Health:
Therapeutic Goods Administration, 29 May 2018,
<www.tga.gov.au/community-qa/medicinal-cannabis-products-
patient-information>
p173 Persian texts: Natasha R Ryz et al., ‘Cannabis Roots: A
Traditional Therapy with Future Potential for Treating Inflammation
and Pain’, Cannabis Cannabinoid Research, Vol 2(1), 1 August
2017, pp. 210–16,
<www.ncbi.nlm.nih.gov/pmc/articles/PMC5628559/>
p173 Queen Victoria’s reign: J Russell Reynolds, ‘On the therapeutical
issues and toxic effects of cannabis indica’, The Lancet, 22 March
1890, Vol 135(3473), pp. 637–8,
<www.thelancet.com/journals/lancet/article/PIIS0140-
6736(02)18723-X/fulltext>
p174 Georgia’s positive experience echoes: Brian Mastroianni, ‘Why
do most patients use medical marijuana? Chronic pain’, Healthline,
21 February 2019, <www.healthline.com/health-news/what-drives-
patients-to-use-medical-marijuana-chronic-pain#The-results>
p174 a 2017 survey conducted by the NICM: Justin Sinclair and Dr
Mike Armour, ‘1 in 10 women with endometriosis report using
cannabis to ease their pain’, Western Sydney University, 12
November 2019,
<www.westernsydney.edu.au/newscentre/news_centre/more_news_s
tories/1_in_10_women_with_endometriosis_report_using_cannabis
_to_ease_their_pain>
p175 Dr Mike Armour told triple j Hack: ‘Apply Heat, Get High: This
is how other women are dealing with endometriosis’, triple j Hack,
3 October 2018, <www.abc.net.au/triplej/programs/hack/survey-
looks-at-how-women-are-dealing-with-endometriosis-
pain/10333996>
p175 How do I get it: ‘Cannabis-based medicinal products’, National
Institute for Health and Care Excellence, 11 November 2019,
<www.nice.org.uk/guidance/ng144/chapter/Recommendations#chro
nic-pain>
p176 the cost of medicinal cannabis alongside other barriers: Sophie
Kesteven and Michele Weekes, ‘Medicinal cannabis is legal in
Australia, but people like Grace are still turning to the black
market’, ABC News, 2 July 2020, <www.abc.net.au/news/2020-07-
02/medicinalcannabis-use-in-australia-black-market/12387408>

Chapter 11: Fertility and parenting

p182 fertility is a tough conversation: Anusch Yazdani, ‘Fertility and
Endometriosis, should I worry?’, Endometriosis Australia, accessed
2020, <www.endometriosisaustralia.org/post/2016/12/05/fertility-
and-endometriosis-should-i-worry>
p183 infertility definitions: WHO-ICMART,
<www.who.int/reproductivehealth/topics/infertility/definitions/en/>
p184 ‘I found it peculiar that my future …’: Zara McDonald, The
Space Between, Penguin Random House Australia, Sydney, 2020
p185 Acupuncture is worth a shot too: Caroline A Smith et al.,
‘Acupuncture performed around the time of embryo transfer: a
systematic review and meta-analysis’, Biomed Online, March 2019,
Vol 38(3), pp. 364–79,
<https://pubmed.ncbi.nlm.nih.gov/30658892/>

Chapter 12: Work and study

p201 American actress Mae Whitman: Jenny McCoy, ‘Mae Whitman:
“Endometriosis Is Like Being Shot With a Cannonball in the
Stomach”’, Glamour Magazine, 21 May 2020,
<www.glamour.com/story/mae-whitman-on-navigating-a-
hollywood-career-while-battling-endometriosis>
p202 ‘If you come to work with a flu’: Jacinta Parsons, ‘Pandemic has
highlighted just how fragile we always were’, The Sydney Morning
Herald, 29 September 2020, <www.smh.com.au/lifestyle/health-
 andwellness/pandemic-has-highlighted-just-how-fragile-we-always-
were-20200929-p5609d.html>
p203 sick leave: Shalailah Medhora, ‘Endometriosis costs the economy
up to $7.4 billion a year in lost productivity, research finds’, triple j
Hack, 5 June 2019,
<www.abc.net.au/triplej/programs/hack/endometriosisendo-costs-
economy-in-lost-producitivity/11183166>
p206 supporting workers with endometriosis in the workplace: Safe
Work Australia, <www.safeworkaustralia.gov.au/doc/supporting-
workers-endometriosis-workplace>
p206 Endometriosis Friendly Employer scheme: Endometriosis UK,
<www.endometriosis-uk.org/endometriosis-friendly-employer-
scheme>
p215 School programs: Deborah Bush et al., ‘Endometriosis education
in schools’, ANZJOG, 28 March 2017, Vol 57(4),
<https://obgyn.onlinelibrary.wiley.com/doi/abs/10.1111/ajo.12614>

Chapter 13: Rest and play

p 221 self-care as legitimate practice: Dr Bruce Warner, ‘What does
“self-care” mean and how can it help?’, NHS, 17 November 2017,
<www.england.nhs.uk/blog/what-does-self-care-mean-and-how-
can-it-help/>

Chapter 14: Endo is for everyone

p 232 a greater understanding of the issue: Frances E Kendall,
‘Understanding White Privilege’, 2002,
<www.cpt.org/files/Undoing%20Racism%20-
%20Understanding%20White%20Privilege%20-%20Kendall.pdf>
p 234 James Marion Sims: Brynn Holland, ‘The “Father of Modern
Gynecology” Performed Shocking Experiments on Slaves’, History,
29 August 2017, <www.history.com/news/the-father-of-modern-
gynecology-performed-shocking-experiments-on-slaves>
p 234 endometriosis was linked to delayed pregnancy among white
middle-class women: ‘An Open Letter to the endometriosis
 community’, Center for Endometriosis Care, 2020,
<http://centerforendo.com/openletter>
p 234 Association of American Medical Colleges reported: Janice A.
Sabin, ‘How we fail black patients in pain’, Association of American
Medical Colleges, 6 January 2020, <www.aamc.org/news-
insights/how-we-fail-black-patients-pain>
p 234 in 2018, an American study: Astha Singhal et al., ‘Racial-Ethnic
Disparities in Opioid Prescriptions at Emergency Department Visits
for Conditions Commonly Associated with Prescription Drug
Abuse’, Plos One, Vol 11(8), 8 August 2016,
<www.ncbi.nlm.nih.gov/pmc/articles/PMC4976905/>
p 234 black women were only about half as likely to be diagnosed:
Bob Kronemyer, ‘How race/ethnicity influences endometriosis’,
Contemporary OBGYN, 23 May 2019,
<www.contemporaryobgyn.net/view/how-raceethnicity-influences-
endometriosis>
p 235 racism has shown its ugly face throughout menstrual history:
Zing Tsjeng, ‘The Forgotten Black Woman Inventor Who
Revolutionized Menstrual Pads’, VICE, 9 March 2018,
<www.vice.com/en_us/article/mb5yap/mary-beatrice-davidson-
kenner-sanitary-belt?
fbclid=IwAR3x1M_AsasjlXjIIhq36PCOHaL42OgpvXQfdz-
yeS5CfLva590iIYVyq4>
p 235 how many public figures of colour are talking about endo: Tia
Mowry ‘My Extreme Pelvic Pain Turned Out To Be Endometriosis’,
Women’s Health Magazine, 29 October 2018,
<www.womenshealthmag.com/life/a24400329/tia-mowry-
endometriosis-black-women/>
p 237 this issue is not limited to African Americans: Australian
Institute of Health and Welfare, ‘Endometriosis in Australia:
prevalence and hospitalisations’, Canberra, 2019,
<www.aihw.gov.au/getmedia/a4ba101d-cd6d-4567-a44f-
f825047187b8/aihw-phe-247.pdf.aspx?inline=true>
p 238 National Action Plan for Endometriosis: Department of Health,
Australian Government, July 2018, accessed 2020,
 <www.health.gov.au/resources/publications/national-action-plan-
for-endometriosis>
p 240 Cori Smith from New York: Bridget Hustwaite, Cori Smith and
Jessica Tilley, ‘Navigating reproductive health when you’re trans’,
The Hook Up Podcast (triple j), 30 September 2019,
<www.abc.net.au/radio/programs/the-hook-up-podcast/navigating-
reproductive-health-when-youre-trans/11561914>
p 244 examples adapted from The Endometriosis Network Canada:
‘It’s Time for the Endometriosis Community to Drop Gendered
Language’, The Endometriosis Network Canada, 25 June 2020,
<https://endometriosisnetwork.com/blog/its-time-for-the-
endometriosis-community-to-drop-gendered-language>

Chapter 15: For the friend, colleague, relative or partner

p 248 nearly 50 per cent: Tracey Bowden and Amy Donaldson, ‘Nearly
50 per cent of Australians now have a chronic disease—many of
them preventable’, ABC News, 1 July 2019,
<www.abc.net.au/news/2019-0701/fifty-percent-of-australians-have-
chronic-disease-health/11227298>
p 249 the word chronic: Maham Hasan, ‘A BuzzFeed Editor’s New
Book Takes on a Once-Taboo World of Chronic Pain’, Vanity Fair, 6
October 2020, <www.vanityfair.com/style/2020/10/a-buzzfeed-
editors-new-booktakes-on-a-once-taboo-world-of-chronic-pain>

Full-page quotes
p xii ‘Tell the story of the mountains …’: Morgan Harper Nichols,
Instagram, 2019 <www.instagram.com/p/Bw2dsqRgFae/?
utm_source=ig_web_copy_link>
p 34 ‘It is imperative to look beyond gendered health …’: Center for
Endometriosis Care, ‘Endometriosis: A complex disease’, 2018,
accessed 2020,
<www.centerforendo.com/endometriosisunderstanding-a-complex-
disease>
p 50 ‘They now have chewable Viagra …’: Amy Schumer, Oprah’s
2020 Vision Tour Visionaries, YouTube, 18 January 2020,
<www.youtube.com/watch?v=BodCxVdpYjY>
p 66 ‘You are never alone in this experience …’: Stephanie Chinn,
Instagram, 2020, <www.instagram.com/p/B--DHBIFyeT/?
utm_source=ig_web_copy_link>
p 116 ‘One of the most difficult factors of this …’: Jenny McCoy,
‘Mae Whitman: “Endometriosis Is Like Being Shot with a
Cannonball in the Stomach”’, Glamour Magazine, 21 May 2020,
<www.glamour.com/story/mae-whitman-on-navigating-a-
hollywood-career-while-battling-endometriosis>
p 130 ‘I don’t know who needs to hear this …’: Lara Parker, Twitter,
26 August 2019,
<https://twitter.com/laraeparker/status/1165678516911796224?
s=20>
p 180 ‘You don’t have to give birth to have a family’: Jessica Murnane,
Instagram, 21 August 2020,
<www.instagram.com/p/CEH0QBujozc/?
utm_source=ig_web_copy_link>
p 218 ‘It’s not resting bitch face, it’s just a bitch that needs rest’: Mimi
Butlin, Instagram, 2019, <www.instagram.com/p/B1Z0zfkAcQm/?
utm_source=ig_web_copy_link>
p230 ‘Privilege is not something I take’: Harry Brod in Michael S
Kimmel and Michael Messner (eds), ‘Work Clothes and Leisure
Suits: The Class Basis and Bias of the Men’s Movement’, Men’s
Lives, Macmillan, New York, 1989, p. 280
p 246 ‘Sometimes your friend circle decreases …’: Ivana and Andrew
Vick, Instagram, 16 October 2020,
<www.instagram.com/p/CGYAgT9jj0j/?
utm_source=ig_web_copy_link>
p 256 ‘Keep fucking fighting’: Halsey, ‘Halsey’s Tearful Acceptance
Speech from the 2018 Blossom Ball’, Endometriosis Foundation of
America, 20 March 2018, <https://www.endofound.org/watch-and-
read-halseys-tearful-acceptance-speech-from-the-2018-blossom-
ball>
 Index

The page numbers in this index refer to the page numbers of the printed book and are reproduced
here for reference only. Please use the search facility of your device to find the relevant entry.
ablation
endometrial ablation 54, 71
of endometriosis 53–4
surgical training in 40
acupuncture 156–9, 185
adenomyosis 68–71, 173
adhesiolysis 52
adhesions 20, 21, 29
alcohol 150, 167
Andrews, Michelle 183, 184
anxiety 11, 119, 122–3, 125, 173, 174
appendectomy 46
Armour, Mike 154, 175
Arrington, Jeff 65
awareness, public, of endometriosis 30
National Action Plan for Endometriosis 30, 206, 238
Raising Awareness Tool for Endometriosis (RATE) 43
school-based programs 215–17

Baker Brown, Isaac 36

bladder and urination issues 26
dysuria 74
Interstitial Cystitis 77–8
Pelvic Floor Dysfunction 100–1
bloating, abdominal 27, 145, 148, 150, 169
see also Irritable Bowel Syndrome (IBS) bowel and gastrointestinal
issues 27, 74, 147–8, 168
see also bloating, abdominal; constipation; diarrhoea; Irritable Bowel
Syndrome (IBS); Pelvic Floor Dysfunction breathing, deep 109
Bryant, Christina 118

cannabis 170–8
Chess, Brooklynn 44–6
childbirth 192
Chinese medicine 154–61, 165–6
‘chocolate cysts’ see endometriomas chromotubation 46
chronic pain, nature and effects of 114, 116, 122, 125, 202–3, 251
see also pain
Chung, Alexa 86
coffee 150, 167, 168
communication
using gender-inclusive language 94–5, 240, 243–5
talking to medical professionals 40–1, 59–60
talking to a person who has endometriosis 250–3
talking to a sexual partner 135–6
complementary therapies, how to use 153–4
see also acupuncture; cannabis; Chinese medicine; naturopathy; diet and
nutrition constipation 27, 77, 78, 101, 104, 168
contraception as symptomatic treatment 32, 49
author’s experience 3, 8, 10, 11, 14, 15, 16
cure for endometriosis, lack of 24, 31, 54, 70, 91, 113
cystoscopy 46, 78
cytokines 27

dairy foods 145, 151, 167–8

Day, Marika 142–52
diagnosis
author’s experience 7–11, 35–6
diagnostic laparoscopy and other procedures 13–14, 32, 38, 46–8, 51–2
factors delaying or preventing diagnosis 36–9, 38–9
resources for medical professionals 43
time taken between symptom onset and diagnosis 35, 97
diarrhoea 27, 77, 172
diet and nutrition
dietician and nutritionist guidelines 141–52
naturopathic guidelines 167–8
traditional Chinese medicine guidelines 161–2
Dilatation and Curettage 52
dioxin exposure 162
Dunham, Lena 30, 86
dyschezia 74
dysmenorrhoea 74
see also pain: period pain dyspareunia 74–5, 132
dysuria 74

egg freezing 185–6

endo belly see bloating, abdominal endometrial ablation 54, 71
endometriomas 20, 21
endometriosis
appearance 21
associated conditions 67–80, 100–1
causes 24–5
classification of stages 28–9
definition 20–1
fertility and 182–3
financial burden 98–9, 107–8, 119, 149, 167, 176–7
funding and research 29–30
locations 21
management see treatment and management mental health effects and
treatments 117–29
myths 31–3
pain see pain
patient stories see patient stories pregnancy and parenting implications
186–96
‘privilege’ lens applied to 231–45
socialising and social isolation, implications for 225–8
specialists in 39–40, 43–6
see also medical and allied health professionals statistics 25
symptoms, overview of 25–8
see also bladder and urination issues; pain: pain during sex; fatigue;
bowel and gastrointestinal issues; bloating, abdominal; fertility and
infertility treatment see treatment and management ‘you know you
have endo when …’ 82
endometrium 20, 33, 54
see also adenomyosis
Endone 12, 174
endoscopy 4, 40
Equinox healthcare service 241
exercise 108–14
excision surgery 8, 14–16, 40, 51–3, 54–5
see also surgery

fatigue 26–27
Feinberg, David 84
fermented foods 168
fertility and infertility 28, 182–3
author’s experience 184
fertility treatments 185–6
fibroids 78–9
fibromyalgia 75–6
financial burden of endometriosis 98–9, 107–8, 119, 149, 167, 176–7
FODMAP foods 146–7, 168
Freedman, Syl 203
funding and research 29–30

Gannon, Lauren 155–61

Garner, Ginger 114
gastrointestinal issues see bowel and gastrointestinal issues gender-diverse
and transgender endometriosis sufferers 238–45
exclusion from research 25
exclusion via language use 94–5, 240, 243–5
see also privilege, diversity and inclusion general practitioners, dealing
with 40–3
see also medical and allied health professionals gluten 149–50
Goldberg, Whoopi 235
gonadotropin-releasing hormone receptor drugs 45, 49
Google Health 84
grief 118–19
guilt 119

haemorrhagic cysts 12
Halsey (singer) 30, 256
Harding, Alison 102–9
health professionals see medical and allied health professionals heat packs
48
Hela Health 243
helplines 126, 261
Hobbs, Tori 207–8
hormone disruptors, household items as 162
Hyland, Sarah 86
hyperandrogenism 73
hysterectomy 31, 70–1
hysteria 36
hysteroscopy 46, 52

Indigenous Australians, endometriosis and 237, 238

infertility see fertility and infertility Instagram resources 86–7
@endogram 13, 85–6
@me_myself_and_endometriosis 87–8
@thatendogoddess 86
@the_endo_chronic_ills 44
@theendojournal 86
see also social media: as information source and self-advocacy tool
intermittent fasting 151–2
Interstitial Cystitis 77–8
Irritable Bowel Syndrome (IBS) 76–7, 146, 168
isolation and loneliness 120
IUDs 49, 52
author’s experience 8, 10, 11, 14, 15, 16
IVF 185

Jackson, Gabrielle 24
Jean Hailes Foundation 105, 108
journalling 126–7

kegel balls 101

language, gender-inclusive 94–5, 240, 243–4

laparoscopy 13–14, 32, 51–2
author’s experience 7–11
laparotomy 32
Lee, Grace 241–3, 244–5
lesions 8, 21, 27, 28, 32, 47
Lintzeris, Nicholas 177
loneliness 120
see also socialising and social isolation Lupron 45, 49

magnetic resonance imaging (MRI) 47–48

Mangeshikar, Abhishek 55
McDonald, Zara 183, 184
medical and allied health professionals author’s experiences with 5–7, 12–
13, 13–15, 101–2
endometriosis specialists 39–40, 43–6
naturopaths 163–9
nutritionists and dieticians 142–4
obstetrician-gynaecologists 39
physiotherapists 104–5, 134
poor information and treatment given by 55, 120–1, 240–1
psychologists 122–5
sexologists 133–4
social media compared to, as information source 83–4
systemic sexism among 36–7, 234–5
tips on dealing with 41–2, 59–60
traditional Chinese medicine (TCM) practitioners 154–61
Meigs, Joseph 234
menopause 32
mental health
effects of endometriosis on 117–21
GP Mental Health Treatment Plan 125–6
psychology-based treatments 122–5, 127–9
support groups and helplines 126, 228
other treatments and supports 126–9
mindfulness 127–9
Mowry, Tia 235–6
MRI 47–8
myths about endometriosis 31–3

Nancy’s Nook Endometriosis Education 39, 89, 261

National Action Plan for Endometriosis 30, 206, 238
naturopathy 163–9
nausea 24, 27, 57, 172, 174, 201
neurolysis 52
neuropraxia 16, 61
Niebling, Kellie 86
non-binary endometriosis sufferers see gender-diverse and transgender
endometriosis sufferers nutrition see diet and nutrition obstetrician-
gynaecologists 39
oophoropexy 52
Orbuch, Iris Kerin 53, 113
Orilissa 45, 49
Otten, Chantelle 133–5

pain 22–4, 25–7, 43

author’s experience 2–16, 61–2, 170–1, 197–200
cannabis, medicinal, for management of 170–8
chronic pain, nature and effects of 114, 116, 122, 125, 202–3, 251
effects on mental health 17, 121 see also mental health lack of correlation
with stage classification 28–9
pain at school or university 213–14
pain diaries and apps 41
pain during sex 26, 74–5, 131–3, 134–5
 see also sex
Pain Perception Project 43
pain system 103, 134
pain in the workplace 210–11
see also working life and endometriosis patient stories see patient
stories Pelvic Pain Foundation of Australia 215–16
period pain 25–6, 36, 74
post-surgical pain 61–5
pregnancy and pain 189–93
parenting 186–8, 192–6
Parsons, Jacinta 202–3
patient stories
Chess, Brooklynn 44
Hobbs, Tori 207–8
Smith, Cori 240
Stuart, Georgia 173–4, 175–7, 178
Sundaram, Swathi 208–9
Tilley, Jess 240–1
Walker, Jade 164, 168
Whitman, Mae 201
PCOS 71–3
pelvic exam, manual 46–7
Pelvic Floor Dysfunction 100–1
periods
author’s experience 1–3, 5, 16
dysmenorrhoea 74
in history 235
menstrual cycle diagram 163
period pain 25–6, 36, 74
retrograde menstruation 33
symptoms associated with PCOS 73
physiotherapy 101–109, 134
Pilates 108
Pill, the 3, 8, 49
pollutants 162
Polycystic Ovary Syndrome 71–73
PPEP Schools Program 215–216
pregnancy 188–192
as cure for endometriosis, myth of 31
Presacral Neurectomy 71
privilege, diversity and inclusion 231–245
psychology-based treatments 122–125, 126–129

QENDO 90, 126, 186

racism and endometriosis 234–238

red meat 167
research and funding 29–30
retrograde menstruation 33
Rishe, Jenneh 236, 237–8
Rogers, Peter 30
Rooney, Sally 30

school-based endometriosis programs 215–17

self-care 219–25
for carers and supporters 254–5
definition 220–1
new parents and 194–6
 social media use and 95
self-confidence, effects of endometriosis on 120
Serrallach, Oscar 195
sex
author’s experience 3–4, 11, 131
casual sex 134–5
erogenous zones 137–9
improving sexual function and increasing pleasure 133–40
pain during sex 26, 74–5, 131–3, 134–5
timing of period and 140
sick leave 203–4
Sims, James Marion 234
sleep 195, 222
Small Intestinal Bacterial Overgrowth 168
Smith, Cori 240
social media
dangers of taking medical advice from 91–2
as information source and self-advocacy tool 83–95
self-care and 95
problems from unscrupulous users of 92–5
socialising and social isolation 120, 225–8
soy products 150
specialists in endometriosis 39–40, 43–6
see also medical and allied health professionals Stein, Amy 113, 243
Stratton, Pamela 121
stretching 109–11
Stuart, Georgia 86, 173–4, 175–7, 178
student life with endometriosis 211–17
sugar 151
Sundaram, Swathi 208–9
supplements, dietary 94, 151, 164, 165, 167
support groups 90, 126, 228
supporting a person who has
endometriosis 247–55
surgery 51–65
ablation 53–4
adhesiolysis 52
author’s experience 7–11, 13–16, 14–16, 61–2
‘day procedure’ classification of endometriosis surgery 64–5
Dilatation and Curettage 52
endometrial ablation 54
excision 8, 14–16, 40, 51–3, 54–5
hysteroscopy 52
laparoscopy 7–11, 13–14, 32, 51–2
laparotomy 32
neurolysis 52
oophoropexy 52
preparation for undergoing 55–9
questions to ask post-surgery 59–60
recovery period 59–65
surgeons’ credentials 39–40
tubal patency assessment 52
see also patient stories symptoms of endometriosis 25–8
confusion between endometriosis and other conditions 37–8
see also endometriosis: symptoms Taylor, Jessica 186–96
teenagers and endometriosis 32
TENS machines 48–9, 169, 210
Tilley, Jess 240–1
transgender endometriosis sufferers see gender-diverse and transgender
endometriosis
sufferers
treatment and management
acupuncture 156–9, 185
cannabis, medicinal 170–8
cure, lack of 24, 31, 54, 70, 91, 113
Chinese medicine 154–61, 161–2
complementary therapies 153–68
diet 141–52, 167–8
exercise 108–14
naturopathy 163–9
physiotherapy 101–9, 134
psychology-based treatment 122–5, 126–9
surgery see surgery
tubal patency assessment 52

ultrasound 47, 48
urination issues see bladder and urination issues uterine ablation 54, 71
uterine fibroids 78–9

vaginismus 75
vagus nerve 113–14
Vermilion Project 209–10
video-assisted thoracoscopic surgery (VATS) 46
vulvodynia 75

Walker, Jade 164–8

Watkins, Emma 30
wheat 145, 150, 167, 168
white privilege 231–8
Whitman, Mae 201
working life and endometriosis 197, 201–11
author’s experience 4, 63, 197–201
taking time off work 119
Wright, Claudia 87–8

yoga 108, 113–14