Project endo

Welcome to this space I call ProJect Endo. Why is raising awareness to important to me?

For as long as I could remember, becoming a 'real' woman was a liberating feeling, like WOW! - I have my period! Now I know what other girls are going through and when i'm older I can have children! Little did I, along with 1 out of 10 women know that from then on, there would be complications with our day to day lives. There is still so much all of us don't know about Endometriosis, how it is caused, we have yet to find a cure for this chronic disease and it's my plan to get it so well recognised that more specialists can help women who are still yet to be diagnosed and get the government on our side. Let's help END endo and the struggles that come with it. Do you know it takes an average of ten years to be diagnosed with Endo? TEN long years. Why does this take so long? Why aren't we talking about this more?! This is where I come in. With the power of photography and working with strong and courageous women, here's the first step of trying to get this illness recognised.
Down below are the stories of heroines and their encounters.....

Image by Corie Shannon Photography x

Image by Corie Shannon Photography x

My Story

“I remember the time I became a woman clear as day. It was Badnji Dan ( Orthodox Christmas Eve) 2003, I walked into my grandparents house after church and noticed a change. I thought, ‘This is womanhood! I can have children when I’m older! Wait..... Oh no i’m wearing a white skirt!!!’ All these emotions were so overwhelming as a eleven year old. I had it pretty easy back then. All I was really hiding was my period from all my classmates and trying to get out of swimming without making it so awkward.

Things were about to change three years later. It was the first time I noticed something different with my body. I was in math class and had a substitute teacher looking after us when my body started to cramp up. I felt clammy, my palms were sweaty, I needed to dash to the bathroom. Said teacher didn’t let me leave though. He thought I was trying to get out of math class. Mind you, I was in Year 10, still yet to receive a detention in my life. 15 minutes passed and i started getting light headed and felt like I was going to puke. I knew the only way to do something was to humiliate myself. What teenage girl would want to openly let a grown male know she was on her period and felt really sick!? And that’s what I exactly did. I told Mr.Kumar that i bled through my clothes and to let me go to sick bay. I had a friend accompany me and stayed in the fetal position until i had one of my parents pick me up.
It only got worse from there.

It ended up becoming the norm you know, EVERY woman has period pains, maybe my pain threshold was weak. So I spoke to my family GP. She instantly wanted to put me on the pill. I was totally against it. With me rejecting that, she tried putting me onto natural remedies like sleep easing tablets and magnesium. I knew that alone would’t benefit me greatly.

Fast forward to around 2011-12, I am a barista working early hours. I used to like partying, I would stay up for hours and get home, work, eat, party, repeat. I loved having so many friends and a great social life! I can vividly recall my bosses at the time saying of all weekends they needed their girls at the store as they were attending an event. I ruined their plans. Both days. I was too embarrassed to tell them I had excruciating period pain so I made my mum call them. I was in hospital twice that weekend, having a reaction to medication the nurses gave me to stop excessive bleeding. It was hell. I also remember one of the nurses saying “we tested and you don’t have endometriosis” now.... what did that mean?! What was that word???? Do you think I remembered it when I got home? You bet I didn’t.

2013-2016 were years of slow-growing fatigue even when I wasn’t on my period and I started napping a whole lot more. Even more embarrassing stories came about. The fainted spells started. My body couldn’t handle the pain of dysmenorrhoea. I would push myself to go shower or get ready for work/day out with friends. It was rough. My brother found me the first time collapsed in the shower. My parents another time. That was so scary. This is where I became frightened of even menstruating, I lost all control of my body and didn’t know when and where it would happen.

These are the years I truly became passionate about focusing on Photography. So Barista and Photographer. Those are two hands on shifts usually involving long days. There were mornings I would brave the pain and go to work, only to last just over an hour or so and then I’d slowly find the courage to walk over to my car and get myself home to pass out for hours until I could even stand again.

These last two years were really where the ball started rolling. I often got asked by my mum about why I was always feeling and getting sick. I never had an answer. It felt like every 2-3 weeks there was something new that was wrong with me. Tummy bugs, low immunity, you name it. It really started to bug me the amount of times mum would say “Why are you always sick????” and I started getting frustrated. It wasn’t for something completely unrelated that I met my now GP who always had my back and wanted to get to the bottom of my ongoing health issues. We started playing and trying different pills, looked for deficiencies and while I was on the low end of normal for a lot of things. Nothing was alarming. Ultrasounds both external and internal showed nothing, other than tremendous pain after examination on my left side. Things were half kind of falling into place. So my GP did another round of blood tests. He found something to go by. He said my bloods showed that I had an infection/and a lot of inflammation in my body. The bad news was that he didn’t know where it was stemming from, though he was adamant it was gynecological. I was unaware of any Gynos as I never had to go to one, so I started asking. I was lucky enough for a friend to direct me to i’m lucky to call my gyno now because he is so in tune with how to treat women.

Mum had come along with me to my first consultation and he was asking me all types of questions, the ones I had answered countless amounts of times to doctors and nurses while trying to get someone to listen. He is the only one jotting things down, asking me to go in depth and really grasping everything I was saying. He explained what Endometriosis was and that I had a good case for it but the only proper way to diagnose it was through a laparoscopy. It was a lot to come to terms with, I’d never had surgery or been cut open before, why if they did’t find anything? What if it made my condition worse? All these questions needed to be filtered before I could give him an answer. This was November last year. I had my lap done Mid January and it was my Gyno operating on me. The one I trusted with recognising my symptoms was putting me under the knife. I was safe.

January 18th rolled around and I was in the waiting bay getting a cannula inserted. I was nervous. The anesthetist got too excited with my vein that she made me bleed all over the bed and floor. Funnily enough she was more worried than I was, blood red was my favourite colour and it weirdly put me to ease! Here walks in my gyno to talk me through what he’ll be doing while I would be under, i felt so reassured. I remember waking up to my gynecologist asking how I was feeling. I was nauseous, I wanted my mum, I wanted my boyfriend. I was zoning in and out. I heard “Endometriosis” You have no idea how liberating that moment was, in my high, and exhausted state. I finally knew what was wrong all this time! Thank you Lord!

This is where this project finally started to kick off, one of my best friends (you will see her story directly below) was diagnosed little under a year before me. It took us 11 years to get a diagnosis. 11 years of silent suffering. And you know what? That is the norm apparently. It takes 7-10 years for a woman to get a full diagnosis! Crazy!

I know there are so many brave women out there that maybe if I share my story that it may encourage others to join me. We can’t keep this silent any longer. We all have voices, We’re all warriors and we are all capable of creating a difference, for our future. ”
— Rebecca Dimovski, South Morang

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For as long as I have had my period, pain has been a constant companion that comes along with it. An inseparable duo that would visit me every month, if not twice a month, for 7 to 9 days. Oh, how joyous I was to have finally become a “women” I thought doubled over in pain. ( I am being sarcastic, I actually hated every minute of my first period and every one since. Who comes up with this crap about it being a great time?)

At tender age of 14, I was blessed to have joined this club at last. The pain I felt during my period was absolutely normal right? At least in health class that’s what they had been jabbering on about. I attended an all girls school, even though I was in pain, I was expected to participate in gym class, athletics carnivals, swimming carnivals and the like, having your period was no excuse
“We all get them here, your not an exception” I would have to beg my mum to let me stay home or write me a note for not participating even though she was on the “I think your being over dramatic” boat. I thought that was the worst of it. Boy, was I wrong.

Though out the following years of high school my symptoms began to grow worse. I remember having a few episodes of being in so much pain that I would faint in class and have to be carried to the sick bay by a teacher and my younger sister. Another time, a student and a teacher found me on the bathroom floor during English class. Needless to say, I had a few episodes like this that would result in a phone call to my mother on multiple occasions and on those multiple occasions she would deny that there was anything wrong with me and I was simply being a “hyperchondriac” or “being over dramatic” and insisted I was fine. I wasn’t. She was furious with me one day for getting my step dad to pick me up after one of these episodes. I still to this day don’t understand why she was so upset with me.

I always felt like there was something wrong with me. That It wasn’t normal to experience THAT much pain during your period. Despite what my mum thought, I thought it was best to seek out some answers for my self and made a doctors appointment. My mum told me over the phone on my way to the clinic “there is nothing wrong with you, you are completely healthy, you just have a low pain tolerance” she was right about them not finding anything and at about 15 years old I was told “some women just get bad cramps” by a doctor. Mum was right I begrudgingly thought to myself.

For years the symptoms kept coming and slowly getting worse. At 16 I scheduled another appointment with a different doctor and they listened to me complain about my “pelvis feeling like its on fire” and “vomiting, breaking out in a cold sweat and fainting from the amount of pain I am in” and they scheduled a blood test to check if I was pregnant and an STI check. This kept happening every time I went to a doctors clinic to discuss my uterine pain and other symptoms associated with hormones. Then when I was 18 they decided it was time to give me an ultrasound. FINALLY. I thought. They will find something for sure.

Now, when I went in for this ultrasound I had to drink a litre of water 30mins before hand. I can tell you, If there was a hell, waiting in the waiting room to be seen with a full bladder was close, but when I got into the room and they lubed up my belly and stated pressing down on my bladder to “get a good look” that, that was my hell. It took every ounce of my consecration not to pee myself. When they finally told me I could “relive” myself I was in turn relived. When I came back from the most glorious visit to the toilet I was told that it was time for an “internal” scan. What?!?! The sonographers holding up this wand. I felt the colour drain from my face... how had my doctor neglected to inform me of this quite confronting practice? My relief was shortly lived and I was back to feeling uncomfortable as I lay there watching the sonographer lube up this camera wand. I had to keep reminding myself to relax. I can tell you that I was far from relaxed about the whole ordeal, but we got there in the end and that’s another uncomfortable experience I can say I lived though. Just like a Pap smear only bigger...

The results from that ultrasound were nothing other than two little cysts hanging out on my left ovary. “Shouldn’t be causing you pain, women can have hundreds and feel nothing” ok toots, I get that, but I AM in pain and I’m starting to get tired of the run around I thought to myself what actually came out was “ but I am in pain?...” so they started me on the pill. It was going to lessen my pain apparently. 2 years later though, next ultrasound, hundreds of the little cysty fucks all over both ovaries and that’s how I got the diagnosis of PCOS... But wait, the plot thickens.

Years go by. I leave high school, go on to uni, go onto getting a full time job at the same time. Only, instead of crushing goals, my body feels like it’s crushing itself. I have to take multiple sick days, miss most of my classes, have to play catch up, jeopardise my job all because of this disease I didn’t yet know I had. I remember one particular day being alone at work and just huddling up in a ball on the floor in pain sobbing trying to get it together so I could get on with the day.

This goes on for sometime and no one can figure it out “geez you get sick a lot, must have a poor immune system” I’m at a loss and for 2 years I am utterly depressed. No one understands what I am going though, no one listens, everyone thinks I am lying or faking these illnesses or being over dramatic. I feel so alone. Why am I like this? Why can’t I just feel healthy? What am I doing wrong? Why doesn’t anyone just understand? I was at my lowest of lows. I felt like I was drowning and that things for me would never get better and I was doomed to be stuck and in pain with this grumpy uterus ( I often refer to my uterus as Freddy Kruger, as I honestly think that if my uterus was a person that is who they would be)

at 25 sex began to become unbearable, even using a tampoon was causing pain that it never did before. It was getting worse.

Finally, after a moving cities, I found a doctor that would make it all happen. Well, eventually. She set up a mental health plan as well as getting me in to see a gynocoligist. AT LAST MY YEARS OF SEARCHING FOR ANSWERS WERE ABOUT TO BE ANSWERED or so I thought. There was a catch, my doctor wanted to get me in quickly to see a gyno so she said that she was marking my referral as urgent because ( wait for it) she told them I was trying to get pregnant ( I wasn’t) she said they would see me sooner and take me more seriously. I accepted but it made me a little pissed that the only way to get seen was to say I was trying to get pregnant. So the fact I have been having issues since I was 14 means nothing? Pffft

It took me 4 appointments with the gyno before I was able to convince them that I needed a laparoscopy to diagnosis what I was expecting to be endometriosis ( I expected I had endo since I was 16. When I first read the symptoms for endometriosis, I cried. That was my life. There was a name for what I was going through)

The day of my laparoscopy rolled around and I was nervous about the whole procedure as I had never had something so invasive done ( excluding the sonographer and the camera wand) but I was determined to find answers.

When awoke in the recovery room I remember just being out of it and asking for more painkillers and laughing ( obviously the laughing gas had me in a good mood) then once I was actually conscious the surgeon told me that I had stage four endometriosis that was everywhere. They were showing me photos of where it it was growing in my body, all over my uterus, ovaries, bowls, pouch of Douglas, bladder, kidneys and get this. My left ovary was stuck to the wall of my stomach and they said it was like cement. They were trying to flush it for what felt like hours. I know I should be horrified by what they are showing me and telling me but I’m just so fucking happy that I’m not the crazy one, that what I was feeling all along was justified and having that answer, finally having that answer for why I felt so shit all the time was there. I had it.

I told my surgeon after an lengthy discussion about my uterus and what have you, that I had been fighting for I diagnosis since I was 14-16 She said in most cases it takes women 8-10 years to get a diagnosis. Wait a minute, back the fuck up... 8-10 years?! So women have to suffer this long before getting any sufficient treatment? How is that even legal? It baffled me. It still does.

So, in a nutshell, that’s my story. It was a lengthy fight, but doctors are slowly becoming more aware and more is being done to create awareness of this wretched invisible disease that effects 1 out of 10 women in Australia. Endo/PCOS sisters if something is wrong, seek answers. If your not happy seek a second opinion. I cannot stress enough how important you and your health are. Fight for your right to have answers and treatment for a better, healthier uterus. All the power to you warriors
— Michelle O, Bendigo



You’re finally a women now,” as I recall my mother saying with the proudest look on her face as she held my hand as we walked to the restaurant to have dinner dinner with the other ladies in our lives to celebrate the day I got my period. As my stomach spun around in circles wanting to let out the spaghetti I’d just ate and my legs shook with pain underneath the table, I smiled wondering if this was really what being a women felt like.

The years went on and the pain only got worse as each month went by, a new symptom every time, a handful of them all or only some, a sort of lucky dip of nausea so severe I couldn’t eat, migraines to the point of vision loss, unable to sleep or being only able to sleep, pain medications, fainting spells just from severity of pain, fetal position on the floor screaming in agony because the heat pack on my stomach was merely just something else to squeeze in hopes of relief. Bleeding or not bleeding, the pain was there. Numerous sick days off from school and work, not being able to go to be with friends because I was sitting in the bottom of the shower watching the blood pour down the drain, replaying the comments in my head from other people about how I am overreacting, I am overemotional, I am overdramatic, that its normal, that it’s the hormones, that its just part of being a women. I endured.

Hospital visits, doctor’s appointments, just to walk out with a new bottle of pills or just a comforting sigh of “this is normal,” “Again Kiara?” Not only just symptoms but sex, masturbation, papsmear tests were painful. This can’t be normal and if it is, why? I felt like I’d been cheated in life, by being a women this is what you must endure, I became spiteful, angry and confused. At some point I contemplated children, maybe a hysterectomy would be an option since no one and nothing is helping rid me of this pain.

As I grew older and became used to this normality, of this gamble of waking up unaware of whether id be able to leave the house that day, whether id be able to leave the bed at least, losing or quitting jobs/courses/school because I was having too many sick days, too many days off. I refused to accept that this was normal and begun the cycle of doctors, specialists, hospital visits and appointments again to try to find someone who may listen to me, who may understand, who may not look me up and down, rolling their eyes.

I remember the day I found out about Endometriosis, I read blogs and articles about the disease and in that moment, I knew that’s what I had, I knew my body and I knew that this was no longer “normal”. To get someone to listen to my self diagnosis was the next part and I had already gone my whole life being dismissed, and now I’ve just self diagnosed myself. Do you really think anyone will listen and take me seriously now?
Misdiagnosed and misjudged, I cant remember how many times I got told I had an urine infection, or kidney stones, or bowel issues even when the tests came back negative, or when I had absolutely no symtoms of the suggested diagnosises.

A local female gynaecologist was the first to ever let me speak and actually listen. A routine papsmear and my story was all it took and I was booked in for surgery within a months time. I felt an enormous weight lifted off of my shoulders, even if it wasn’t what I thought it was, maybe they will find something else when exploring inside my tummy, they may well find a cure to my pain.

Dizzy and disorientated after the surgery and yet I was smiling because the endometrioses was found and removed. Smiling not because I had the disease but that I finally knew what my body was telling me all along, I listened and I didn’t give up despite years of being told I was wrong. Most days are still a struggle as I never know what’s going to get thrown at me when I wake in the morning and of course, some days/weeks are worse than others. Having the right answers now helps me to And although knowing full well that endometriosis is incurable and the disease will continue to grow back even when removed, that surgery is now a normaility every few years to me, to this day I am still proud and happy knowing I stood up for myself and my body when I knew in my gut (literally though) that something was wrong.
— Kiara S, Melton



I love being a female and having a female body it’s an extraordinary and powerful thing to inhabit. However there’s some experiences and stories which some don’t share. This is mine.

Periods are a funny thing we all love to hate them ... I am I right. However mine have been a rocky road since I could remember, the pain, moods , breakouts and body aches take there toll each month. After suffering with agonising pain each month I decided to see my doctor. I was then put on the pill, which fixed a few of my monthly symptoms. Although the pill made me emotionally unstable and at times a completely different person. The painful cramps still didn’t ease, in fact they became worse. After countless doctors appointments and many agonising days at work I finally decided to say one last thing. To which my doctor said there was no point in investigating my issue. That my pain will subside as I get older or that I potentially have endometriosis, Or have a child. I left this appointment with a script for painkillers and a referral for an gynoclogist ( after I asked for one )

So my journey unlike Bec was a shorter experience yet it doesn’t take away from the fact we both had to fight for our bodies, that we weren’t being listened to.

So, I have two very important things to say about this.

1. As woman we should listen to or bodies. We know what’s “normal” for us as individuals.

2. Our lives are too short to be be dictated by pain.
— Amelia R, Ferntree Gully



The hardest thing with endometriosis i have found has been being intimate and comfortable in your own skin. It’s so hard to feel okay about your body when your body is constantly fighting against you.”
”I definitely feel this shoot has allowed me to take back that power and truely embrace myself and my scars in the most honest and raw way possible....”
Melanie 🌹, talking about her life with endometriosis. Hers, much like mine; is hereditary. Her mother and sister are also warriors.
— Melanie, Eltham



Every since I got my period it was very heavy and I got terrible cramps. My doctors would just shove any form of birth control my way to stop the bleeding. Nothing ever worked. I was always so sad and moody, terrible pms, hormonal acne, and I still got my period as heavy and painful. I was diagnosed with depression and anxiety and sent to a rehab facility for suicide watch. They put me on even more medication which made me feel worse.

I decided to get the implanon (arm implant) and that made me feel a little better. I stopped getting acne and stopped having major depressive episodes. But then a year into it, I started getting heavy painful periods for a week every fortnight. My boyfriend thought that it was my birth control acting up so I ignored it and didn’t go to the doctor. Finally after enduring this for 5 months I get an ultrasound and they diagnose me with Adenomyosis.

My GP tells me everything is fine, puts me on a mini pill and says I don’t need to see an obgyn. A couple months go by and after doing extensive research I wanted more answers, like why would a healthy, active 20 year old have a condition most women get after childbirth or later on in life. I’ve been told it’s an autoimmune disease, I’ve been told it’s the precursor to endometriosis.

After going to doctor #2 I finally got sent to an obgyn who tried to put in the Mirena but it was too painful. And thanks to my student health care, I couldn’t afford to be put under anaesthetic. She decided to wait until my insurance will cover me and we’re going to do an exploratory Laparoscopy to see how advanced my condition is. They couldn’t tell me if I can have kids.

As a 20 year old with a serious boyfriend who I’ve been living with for over a year. It really put a halt in our relationship. He didn’t want to be with me if I couldn’t have kids, and I wasn’t able to tell him because I didn’t know myself. I wasn’t getting any support from him, and my family lives in America. They get so upset hearing about my suffering so I don’t tell them.

Listening to other women’s stories and how they are able to be strong every day has helped me through this period of uncertainty
— Shiloh, Melbourne



Its common knowledge that with your menstrual cycle comes menstrual cramps. They go hand in
hand... right?

I remember clearly in Year 8 my cycle had begun. The first 2 or so years it was smooth sailing. I
questioned what other girls and woman or on about when they spoke about pain.
Then from the age of 16 it hit and I learnt about this excruciating pain that goes along with “Aunt

I tried everything, being natural remedies or just your usual panadol and nurofen to take the edge
off. Im not a fan of medication so even though friends that suffered similar pain would recommend
them i am always reluctant.

I knew what was coming every month and around the same time and same duration. It was
always severe and always debilitating for at least the first 3 days. Yr 12 trying to write and essay
on Frankenstein i will not forget that pain that hit me out of no where and gave me sweats, nausea
and just wanting to scream in a quite testing room. Obviously you don’t want to make a scene
and people always thought you were over reacting or trying to get of something. They always
offered that damn hot water bottle. They claimed it was the ultimate cure. NO! i was already so
hot! Clutching that damn thing and almost in a fetal position i wrote the never ending essay on
Frankstein. Happy to be done i went to sick bay and my mum found me there tucked underneath
the seat as i couldn’t even bear to sit up or lye down. I got a C on that essay, gee just imagine if i
was well!

There are stories that it all goes away once you have a baby. This too was a lie. Maybe it did for
some, but definitely not for me.
I have heard of endometriosis. As of recently a lot more light is being put on it and it maybe
something to consider getting tested for. Like i said many girls suffer thinking it is just the way it
is. This is not the case.

Thank you to Rebecca for being so strong and educating myself and others on this disease.
— Tania M, Epping North



It wasn’t until my early twenties that I finally received a diagnosis of the condition that had
plagued me my entire teens .......‘Endometriosis’. A diagnosis that finally put the pieces of
the puzzle together; the lethargy, the dizziness, the heavy periods that would sometimes last
for weeks, the low iron levels that no one could explain and the pelvic pain....finally it all
made sense...and it wasn’t in my head either! The relief of a diagnosis, whilst liberating, was
short lived as there was more to come, more understanding, more research and treatment
for the disease had already started to wreak havoc on my body.

By the time I was 24 I had three laparoscopies and laser treatments to remove
endometriotic cells that had deposited themselves on the outside of my uterus. I recall
asking my lovely female gynaecologist at the time in frustration, who was so caring and
nurturing doing everything that she could to assist me, surely there was something out there
that could cure this disease and her response was a simple ‘pregnancy does’. I was stunned,
‘pregnancy!’, I exclaimed, that was the furthest thing from my mind at the time, I was a
newlywed, working full time, paying off a mortgage and with plans to do so many things!
‘Yes’, she simply responded. The gynaecologist explained that pregnancy had shown in some
cases to cure the disease in some women (there is much conjecture about this now as
current consensus is that pregnancy temporarily suppresses the symptoms and doesn’t
actually cure the disease) but if that wasn’t an option for me then there are hormonal
treatments, like a pill that I could take that would stop the periods and mimic pregnancy. I
explained that I couldn’t tolerate the pill but was assured the treatment would involve a low
hormonal dose and that I would be fine.

So then I started the hormonal treatment of Primolut N but unfortunately a number of
months later I suffered extreme and severe side effects where I experienced stroke like
symptoms where one side of my body was paralysed, I was unable to speak and I had a
intense painful headaches (this happened to me on three occasions). After many visits to a
neurologist and a battery of test I was finally advised that I had suffered hemiplegic
migraines, a side effect of the Primolut N hormonal treatment and that I was to stop the
treatment immediately. Basically my sensitive body could not tolerate the hormonal
treatment... ...then in the midst of all this drama... during numerous doctors, neurological
and specialist visits.....I miraculously fell pregnant! After all that I had endured with this
disease, there was a silver lining, whilst not expected or planned, the joy of giving birth to
my first child had eradicated in an instant the trauma and trials of this disease and in an
ironic twist I was blessed with motherhood, the very thing that this disease had threatened
to elude me from!

Fast forward, 26 years later now, I recently was diagnosed with endometrial hyperplasia,
following symptoms of painful, heavy and prolonged bleeding, very similar to
endometriosis...infact I thought it had reared its ugly head again!...but this time around it
relates the joys of impending menopause apparently.....more research and understanding to
be gained again... I do wonder though if there is a correlation?
...they joys, trials and tribulations of being a woman, from one who cares and loves
passionately and just like Bec, who would like to END Endo too!
— Stav D, Greensborough

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(Just to add, this story is quite dear to me especially as Bel wanted to share the spot in front of the camera with her beautiful boy Blake, and you'll know why as you read through her story..... )

I was diagnosed at the age of 19 with Endometriosis after the 10th doctor finally listening to me!. I was told I would probably have trouble getting pregnant due to the amount of endo I had, and to consider conceiving sooner rather than later. Although I always wanted children it was not something I pictured doing at the age of 19 or 20. Geez!.

The effects even after surgery were so debilitating to me, I would lie down on the office floor at work in agony, I would come home from work and go straight to bed. Living on Mercyndol Forte is not ideal but helped somewhat manage it. The depression that came with the daily pain was awful. I tried Hormone Therapy to relieve my symptoms which did help but the downside was I could only be on it for 6 months without impacting my body in other ways. The hot flushes of the medication drove me bonkers! I thought here I am going through menopause at 20!

At 24 I had my third surgery to help relieve the symptoms yet again, this time though I was also diagnosed with Adenomyosis (endo in the uterus wall muscle) and told I would never have children. I cried for days.. It broke my heart...
The doctors told to me to consider a hysterectomy to stop the pain..I decided no at that point.

Skip forward to 34, I had been though 7 years of heartache, depression and a breakdown after losing my dad to Pancreatic Cancer...
I now had a partner and the urge to try and have a baby was churning in my mind. I thought I have to at least try..

So we tried and I fell pregnant! I couldn’t believe it, I still can’t believe it, the docs were adamant I couldn’t get pregnant!!

My miracle boy was born in 2015 and the joy he brings to my life is just magical. I am so blessed.

It appears Endo has reappeared again with intense daily back pain, chronic fatigue etc. I’m trialling lots of drugs to find the right one to combat pain and not effect my body in other uncomfortable ways. (So for me the ‘have children to cure it’ was not the case).

I want all of you without children to hold hope....and please try, even if the docs say it’s not possible to conceive, please just try :) xx
— Belinda A, Epping

Images by  @joshuabarriephoto


Mum’s comforting arms around me, I remember sitting together on my bed around 4:30am. It was before my grade 6 camp, I had woken up to go to the toilet when I saw blood. “It’s okay” she lulled to me, “this is normal, this is growing up, this is becoming a woman.”

But what I began to learn was that what I have endured the past 11 years was far from normal.

When I was 13 the real pain started, not being able to gain relief from pain medication or heat packs, the dizzy spells, the nausea, the fatigue & limited movements.
At 16 I was still certain something wasn’t right and that’s when I started to try and seek help, even though I was being told the same thing over and over - “this is part and parcel of being a female,” “we can give you different pain relief?” “there’s nothing else we can do.” Soon my Mum started questioning me as well, every single period I had I ended up in the sick bay at school as I just could not concentrate on anything other than my pain.”Is it really that bad Shenae? I have never experienced pain with my periods.” Great, not only do I need to convince a doctor who has trained for years that there is something not normal about my periods, but now I need to convince my Mum?

I remember being around 18 when I read an article about this women who said she had a disease called Endometriosis. When I read her symptoms, her struggles and not giving up on her intuition knowing there is something not right, I knew that I had Endometriosis, and that I was about to start the struggle of trying to find a doctor who believes that as well.

GP, after GP, after GP it was the same story. Send me for an ultrasound, go back and hear the results were clear, try different medication. This happened until I was around 20 years old.
A few months before my 21st birthday I started a new job in Fitzroy, I was working in a hospital and they had a staff clinic service in case employees needed to visit a doctor whilst they were working. This period was probably one of the worst I had ever had and I was really struggling at work. One of the girls suggested I go to the clinic as there was a very kind and nice GP working there today.
I walked out of the appointment in tears, this GP had me go for another ultrasound, but she also said if it comes back negative she would be referring me onto a gynaecologist for a specialist opinion as she thought I had Endometriosis. Finally, someone listened, someone cared enough to not just palm me off to take medications that simple just masked the symptoms that were obviously being caused by something of a greater issue.

A few months later and my specialist had me booked into surgery for investigation, “the only way to truly diagnose and treat” he explained “was through laparoscopic surgery.” He thought I would only be under for maybe 20 minutes depending on what they found.
I wake up dizzy and nauseous from the anaesthetic. “we found 5 pockets of Endo cells all throughout your pelvis” he explained. “We have burnt them out and treated them, it’s not a cure, but we will monitor you after this”
I felt the biggest rush of relief, FINALLY, I cried to myself, I have an answer to all my pain.

To this day every month is still struggle, and the pain never really goes away. It’s impacted relationships and friendships, it has impacted employment. I’ve now not only got Endo pain but I have had ovarian cysts rupture resulting in hospital stays. But I know I have a disease, I know I have something called Endometriosis and I am a voice that can tell other women to get help when something is not normal. I can be part of this movement to bring Endometriosis to the spotlight and help thousands of women suffering in pain, but they do not need to suffer in silence.
— Shenae C, Sunbury



I was one of the lucky ones. My diagnosis of PCOS was swift and I am so glad I had a GP who knew what they were doing.

I was the first of all my friends to get their period- I was 11 years old and in Primary school, I guess I was an early bloomer. From that point onwards things seemed pretty normal, until I was about 19. I was in Ghana on exchange for the semester and it suddenly seemed as if I was just bleeding all the time. I didn’t know what the hell was happening and was worried I’d contracted something.

By the time I returned home I talked to my mum about it and she came to the doctor with me. Pretty much as soon as I mentioned that my period had suddenly become irregular of its own accord in the months previously, she mentioned something I’d never heard of- Polycystic Ovarian Syndrome. The doctor mentioned a few of the symptoms and it started making sense; weight gain coupled with a difficulty to lose said weight. I’d thought maybe while I was on exchange I’d ‘let myself go’ but in the weeks since I’d returned my weight actually wasn’t going back to normal but increasing even when back in my normal routine.

To make sure I was referred to a family planning centre to get an ultrasound, and when the results came back it confirmed my diagnosis of PCOS. I was told conceiving children would be drastically more difficult. I think this upset my mother more than it did me- I’d never wanted children and personally wasn’t too concerned. But mum said sadly that it was one thing to not want them, but it was another thing entirely to have that choice taken away from you.

I was put on the pill, which seemed like a gift- my period came like clockwork, and I could even skip it entirely! But then the migraines started… I’m in the process of researching other options, because the connection between migraines being symptoms of the hormones contained in the pill is pretty strong. Most recently I went to the doctor’s and they’ve suggested Implanon, or the rod inserted into the arm, so in the next few weeks I plan to give this a go in order to get my hormones under control.

For me the most upsetting factor is the hair loss- one of the symptoms of PCOS is increased body hair but a loss of hair on the head. Sometimes clumps will just fall away as I’m washing my hair, making me self-conscious that my scalp is showing or that I’ll eventually become bald. A habit I’ve noticed I’ve picked up lately is that I’ll compare how thick other girl’s hair is, a girl with thin hair reassuring me that it’s okay, other people have thin hair too, stop panicking…

My relationship with my body has always been so negative and harmful, and this just seemed another way that my body was fighting against me. But we all have bodies, there’s no such thing as a good one or a bad one. They’re all weird and unique and beautiful and ugly. This shoot is just one part of a long process in which I am trying to unlearn all the years of breaking myself in order to fit in. Instead I am trying to learn to love myself, and this has been the most empowering experience in my life.

4 years ago I’d never heard of PCOS before my diagnosis. I didn’t even hear about Endometriosis until maybe a year ago. People just don’t talk about periods and fertility and how our bodies work. It’s just not the ‘done thing’ and it’s so dumb- how are we meant to educate ourselves and each other if we don’t talk about it? Since I learned about Endo I’ve discovered so many of the women around me either have or know someone with PCOS and Endo. Let’s keep talking about it so something can be done.
— Irene B, Ringwood North



My journey with Endometriosis hasn’t been as long as most and I’m super grateful to my Endo sisters before me who have shared their stories and helped people like me discover it earlier. Also to Bec for creating awareness in the most beautiful way and helping women not only share their sufferings but create a place of support and love.

My first periods were quite harmless but then it all sort of caught up and came at once. Debilitating pain, it felt like someone was ringing out my spine and uterus, I sometimes couldn’t move and would have to stay in bed. I went on the pill which helped subside the worst symptoms enough for me to go on like ‘normal’.

Then fatigue plagued me, particularly once I started Uni, you would often find me napping in the library, during lectures, the dance studio or outside in the sun, at least once a day!

I have been dancing since I was 4 years old and was doing a Bachelor in Dance so I feel like I have a very strong connection and understanding of my body. I also became vegetarian and then vegan which had a significant impact on my body, it felt so much lighter, clearer and only deepened my relationship with my body.

During my degree I also noticed abnormal bloating, I went to the doctors on campus to find out why I was bloating more than usual and they ran some tests but everything came back normal and healthy. Soon after I went off the pill because I felt it was too mentally overwhelming, which only brought back my agonising pains that were briefly hidden by the pill. Feeling so sure of my body and that things weren’t quite right it was so frustrating not knowing what to do or who to turn to.

Years went by and the symptoms worsened, I got the implanon which made my periods extremely irregular. I was constantly in pain, bleeding or not and my bloating turned into a full term food baby belly after eating literally anything. Nausea to the point of dry reaching. Going to the toilet became a nightmare, needing to go all the time, feeling like I’m busting but then nothing comes out?? I would sometimes leave it till I absolutely had to go to make the pain shorter. Being intimate was near impossible and put a massive strain on me and my partner. I could only sleep with a pillow or heat pack underneath my stomach to put pressure on it, and from my travels I’ve learnt that a firm travel pillow is the perfect shape and cushion for sleeping on. I thought perhaps I could have IBS, weak bladder or an intolerance to some food, but being vegan it only really left gluten or fructose and I was not prepared to give them up too!

My trip to India and Nepal was really where I figured out that I had Endometriosis. I remember this day so clearly, we were in a small town in North India called Bundi, staying with our friends Pappu and Munni at their place called Energy Cafe. My partner and I had started doing some research into my symptoms, unfortunately Endo shares many symptoms with other common illnesses. Then I found Bec’s page, her beautiful photos and everyone’s stories, they all resonated with me so much! We went for a stroll into the main part of town, the streets are tiny and full of people, bikes, cars, monkeys and cows. There was a mummy cow with twins which is a miracle because most cows won’t accept both, not to mention cows are my favourite animal. I was in pure bliss watching these beautiful beings but then I was doubled over in immense pain, what a conflicting feeling. It was like my uterus was screaming and shaking me from within saying yes you’ve figured it out!! Now help me help you.

When I returned home I booked into the doctors and told them to give me a referral to a gynaecologist and within a couple of weeks I had my appointment and my answers officially. I will be having the surgery in a couple of months and I’m feeling a bit nervous about it but also looking forward to it. I’ve accepted that this will just have to become a part of my life and that if I can’t physically have children I am happy with adopting.

All I can say is that nobody knows your body better than you do, always listen and nurture it!
— Angie D, Sunbury



It was back in May 2010, at the age of 29 that my life changed forever. It was then that I’d decided to stop taking the pill, that I had been on since I was a teenager due to bad acne, as my husband and I had been talking about having a baby soon. However, that decision impacted on every aspect of my life in ways that I could never have imagined.

The first period I had after stopping the pill was uncomfortable, more painful and felt different to
what I had been used to. Of course, like many women I just brushed it off as being period pains and my body adjusting to stopping the contraceptive pill. Yet as each month passed my pain increased and I became more reliant on over the counter pain medication to get through work or daily activities when I was on my period. I recall clearly one day when I had to finish work at lunchtime as I was so unwell and headed to the doctor. I drove to the clinic in tears, barely able to press down on the clutch to change gears and sat in the waiting room grimacing in pain, tears streaming down my face. The doctor of course was very sympathetic but since most of my symptoms involved my low back, left buttock, left hip and left thigh rather than investigate the fact that my pain seemed linked to my periods I was sent for a lumbar spine x-ray and CT scan as he suspected a bulging disc.

Of course, these tests came back clear and showed no sign of disc bulge or other spinal issue. It was at this point in late 2010 that he felt the persistent link between the pain and my period couldn’t be ignored and I was referred to a local gynaecologist for further investigation. It was at this time that he also suggested endometriosis may be the cause but like many women I hadn’t heard of it before. By now things had worsened to the point where on the second day of my period I would feel a wave a nausea, begin vomiting and end up curled up in a ball on the floor crying out in pain. If I needed to have a bowel movement I would be in immense amounts of pain and often could not stand up from the toilet with my husband needing to come and help me. On these days walking was almost impossible and I would end up at the emergency room being given Panadeine Forte, Endone and placed on a morphine drip until my pain levels stabilised and I was able to return home. Of course, all of this was extremely draining and I would need time off work to recover.

As I waited for my gynaecologist appointment I spent one night every month in the emergency
room, I developed a limp to compensate for the pain that was beginning to occur more regularly and it had a negative impact on my mental health. I was finally seen by the gynaecologist in February 2011 and he booked me in straight away to have laparoscopic surgery for investigative purposes and to remove endometriosis if it was found. I began to research endometriosis, it’s causes, treatments and anything else I could find out about it from reputable sources, including speaking to different health professionals about it, so I was prepared in case there was a positive diagnosis. In March 2011 the day of surgery came and I was hopeful that this would be the end of my pain filled life but oh how wrong I was. Everything went well during the laparoscopy, I recovered and returned to work after 2 weeks off. I had a follow up appointment shortly after and it was at this time that the truth of how this disease was impacting on my body became evident. My gynaecologist said I had one of the most severe cases of stage four endometriosis he had ever seen and that it was beyond his skill base.
He apologised for not being able to assist me and gave me a referral to an endometriosis specialist in Melbourne.

Thankfully the wait time wasn’t long and I was able to travel to Melbourne to find out what my
options were and how we should proceed from this point on. I was sent for an internal ultrasound,
was given many examinations and was advised that another surgery would be needed. I was also
informed that my bowel was most likely involved so I would need to consult with a bowel surgeon
before I could be booked in for my next surgery. During all of this I was still ending up in hospital
each month and the disease was impacting greatly on my ability to work and live a “normal” life.
Finally, in May 2011 I was admitted to Epworth Eastern Hospital in Melbourne to have excision
surgery and either a bowel disc resection or a full bowel resection. To say I was nervous is an
understatement as I didn’t know if I would wake up to find out if I’d had keyhole or open surgery or
if I would be fitted with a stoma. After many hours in surgery and a day to sleep off the anaesthetic I
was advised that keyhole excision surgery had been completed including a bowel disc resection.
After a very painful and uncomfortable 5 days in hospital I was able to return home to begin the 8
weeks recovery. It was not a fun and relaxing time off, I was in a lot of pain, I could hardly eat, I was
nauseous and walking was difficult. Thankfully each day saw small improvements and by the end of
the 8 weeks I was starting to feel more like my old self again.

Sadly, after all of that I was still experiencing some pain with my periods and upon post op
examination it was determined that due to the severity of my condition either some endometriosis
had been missed or a new deposit had formed. I was advised to begin trying for a baby as it may
help my body to adjust and reduce my symptom although my specialist was sure to inform me that it
would not cure me of endometriosis. I no longer needed to visit the emergency room regularly but I
was on a rotation of Oxycontin, Endone and Panadeine Forte to try and manage the pain which had
become a daily occurrence. I was tired constantly, couldn’t make plans because I didn’t know how
I’d feel a day from now let alone in a week or a month and my life was ruled by this disease. I tried
acupuncture and Chinese medicine which had some positive effects but didn’t get rid of my pain. I
went from exercising several times a week to struggling to get out and walk regularly because any
form of exercise left in in crippling pain. I was anxious, depressed, suffering chronic migraines and
struggling with the fact that I wasn’t falling pregnant.

Of course, we went through the fertility testing and were told that although everything looked ok
that due to my disease our only option was probably going to be IVF. I knew I couldn’t put myself
through it mentally, emotionally or physically and we decided if it was meant to be it would be and if
not, we would look into adoption in the future. It wasn’t until we’d given up hope and had stopped
actively trying to conceive that it happened. In January 2013 we found out we were expecting and, in
the September, we welcomed a beautiful, healthy baby girl. For 7 months all was going well until I
began to feel extremely unwell. It was found that my iron levels were dangerously low and my
hormones were out of balance so I was advised to stop breast feeding but to be prepared for my
period to return along with the possibility of my endometriosis flaring up again. I felt great for
around 6 months or so with very little pain and fairly “normal” periods but as time progressed things
took a turn for the worse.

By the middle of 2015 I was again relying on pain medication to function and my pain was now a
constant in my life. It was there 24/7 and was taking a terrible toll on my body, it also took a toll on
my marriage and sadly my husband and I parted ways on good terms. By this stage I was so drained I

needed to nap every day and caring for my daughter was difficult as my aches and pains made every
little task so much harder. The culmination of everything had lead to me being diagnosed with post-
natal depression back in 2014 and then in late 2015 I was referred back to my specialist in
Melbourne where we discussed my options yet again. I left this appointment confused and unsure of
the decision I should make. My specialist had given me 3 months to try the contraceptive pill again
as a way to manage my symptoms before making a decision about whether or not to undergo more
surgery. The pill did nothing to help and I was virtually bedridden due to the intense and crippling
pain I was experiencing. So, at the follow-up appointment, at the age of 35, I made the difficult
decision to have a full hysterectomy despite knowing that it would not cure me. Then on the 22
December 2016 I was admitted to the Royal Women’s Hospital Melbourne and underwent
endometriosis excision, cystoscopy and a full hysterectomy with only the preservation of my right
ovary. I was advised that they had removed all of the endometriosis they could find except for a
nodule that was present on the bowel as there was no bowel surgeon present in the operating
room. After two days in hospital and another 8 week recovery I was feeling fairly good and was
optimistic about my chances of a life without pain.

6 months is all it took though for my pain to begin to return. It started as small twinges that I
brushed off as nothing but as each month passed my pain slowly increased from a day here and
there to constant 24/7 again. I wish I could say that since then things have improved, that I’ve found
some miracle treatment that has given me back a “normal” life but of course I can’t. I am back on
prescription pain medication, taking high doses of daily Provera, regularly rely on crutches to walk
and praying that the diet changes and regular gentle yoga stretches will make a difference. It’s now mid 2018 and I have a month and a half before my next specialist appointment. Hopefully I can find something that makes a significant difference between now and then because if not I may require
yet another major surgery. This time I would be looking at a full bowel resection which of course
means the risks increase as do the chances I would end up with a temporary stoma or colostomy
bag. It is scary, it is crappy, it is something I wouldn’t wish upon my worst enemy but still I will fight on.

The one thing that breaks my heart in all of this is that on my worst days my daughter becomes my carer. At 4 years old she brings me my ice pack, helps me move between my bed, the couch and the bathroom, makes sure my crutches are within reach, gives me my medicine and gets my drink bottle for me. No child should have to do that, no child should have to be stuck at home all weekend because their mum is in too much pain to walk let alone drive. Yet she is an amazing, kind, caring and nurturing little girl and she gives me a strength and will to push through that I never knew I had. If it wasn’t for here I can honestly say I could have easily given up a long time ago and thrown in the towel. For her though I will continue be the resilient warrior she needs and show her that no matter what life throws at you, you can succeed and live your life to the best of your ability.
— Amanda B, Bendigo


For many women, they don't get the chance to express themselves in this way, feeling confident and not ashamed to communicate their battles with a chronic disease yet to be recognised by many GP's. It makes months and years of battling someone to believe you, and an umpteen amount of cash to fuel your own campaign. My intentions of this project is to get this so well recognised that we, and the millions of women still to be diagnosed get recognition and a chance to finally get the help we deserve without begging for it. If you suffer from Endo, PCOS, or anything similar to this....(even pre-diagnosis!!), please get in touch. I want to hear your story, it was meant to be heard.

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