It’s Endometriosis Awareness month and we are shining an important light on the disease that affects one in 9 women.

Endometriosis is a condition where cells similar to those that line the uterus grow in other areas of your body, especially around your ovaries and uterus. The disease takes on average 6.5 years to be diagnosed.

While one in nine Australian women have clinically confirmed endometriosis, what this statistic does not reflect is the thousands of women suffering with symptoms and not receiving the help they need - or ARE unaware of the help available.

So, to highlight the importance of sharing this common condition, and speaking out about it, we reached out to our cbrmamas community. Nine women have chosen to graciously share their endometriosis journey with you all in the hopes it will help others out there…

Tamar’s story

I was never a girl to have a heavy period or “excruciating” periods. I think that’s what surprises me the most when I look at where I am now and how complex and stubborn my endometriosis is. I started having cysts rupture that would have me in ED from age 17. After a while I would experience the same episodes of pain but when scanned, they couldn’t find any evidence a cyst or other cause was even there. I knew something else was going on.
I presented multiple times to the hospital in agony being told there was nothing that could be done or questioned about the possibility of me just “drug seeking”.

One night a doctor even began lecturing me about the fines associated with selling medication like endone and questioned my knowledge and access to these medications as a nursing student.

As time went on, I began giving up hope that the healthcare system was believing me or that they were ever going to be able to actually help me. I fought with my GP at the time about getting a referral to a gynaecologist because she didn’t think it was necessary. Then I was laughed at by the gynaecologist because my issues I guess weren’t really an “issue”. Neither of them could explain to me why my right ovary was in fact double the size of the left. Nor did they bother to further investigate. I thankfully fell into the hands of an incredible specialist who made me feel validated within the first 5 minutes of the appointment. He had an explanation and prognosis for my symptoms at my first appointment. I am blessed to have this specialist almost 9 years later and I owe him SO much. Not only has he been through my endometriosis journey but he spent 6 years assisting in helping me fall pregnant. It only felt right that he be the person to deliver my first baby in July this year.

My endometriosis is not only rapid growth but widespread and not responsive to treatment. I have had 3 laparoscopy’s all within the space of 4 years and have tried what feels like every medication under the sun to try slow down the growth and manage my pain. It was no shock to my specialists when I was diagnosed with fibromyalgia as my pain is extremely difficult to manage. I use to have days of feeling like a “sook” or that I wasn’t trying hard enough because of the amount of medication I was taking and am still taking in order to just achieve basic function. My Mum use to remind me that I was doing the best I could and I deserved to live a somewhat normal life so how that would be possible did not matter.

I sometimes wonder where I would be had I given up due to the constant rejection from health professionals. I saw a shift in healthcare and the attitude of particularly people working within women’s health. Regular visits to the hospital up to 2-3 times a year for ketamine infusions to help calm down my pain receptors and tolerance to medication, has meant I have gotten to experience everything from rejection and judgement to acceptance and a desire from others to understand. It has not been easy and being someone who naturally worries so much about what others think has left me in agony and delaying attending the hospital for help for up to a week in fear I’ll be judged and my walls would go back up again. If I learnt anything from what I have been through it was to never give up. Had I listened to the multiple people who failed me by dismissing my concerns and judging me, mentally and physically I don’t know how I would be functioning today.

Endometriosis is not a condition that comes or is felt in one form only. Its uniqueness continues to frustrate and amaze me. There are women who have surgery or fall pregnant and their endometriosis and symptoms are no longer existent. There are though women like me who continue experiencing pain every single day but are required to continue working and functioning because the wider community fail to understand the incredible complexities of endometriosis.

MELISSA’s story

I remember once explaining to a doctor the unbearable pain I had experienced a few days before my period. He dismissed it as typical period pain and suggested that I had a low pain threshold. It took me seven more years to be diagnosed with Endometriosis.

My Endometriosis journey began in my early teens. My periods would cause me excruciating pain that left me crying to my mum on the phone, begging her to help me. Despite undergoing various tests and doctor visits, I was prescribed the pill as a common solution for painful periods.

I stopped taking the pill in my early 20s over concerns about its long-term effects, but soon remembered why I had started taking it as my Endometriosis flared up worse than ever before. During my cycle, I experienced episodes that left me immobilized, vomiting, and passing out from pain. Despite seeing multiple doctors, trying various remedies, and living in constant fear of the next episode, my pain was often disregarded.

In 2021 I went and saw a GP who specialised in female health. To say she saved me sounds dramatic, but realistically, she did. She believed and symphathised with me, and ultimately saved me from my disease. She put me back on the pill to stop the pain and referred me to an Endometriosis specialist, who after 15 years, officially diagnosed me with Endometriosis. Through an internal ultrasound the specialistic found I had 5 ‘chocolate cysts’ on my right ovary, 2 on my left ovary and 1 on my vagina. The specialist recommended a laparoscopy, but I was hesitant due to its invasiveness, long recovery time, and potential for ineffective pain relief. With my GP, we agreed that, given the location of my Endometriosis and my desire for children, it was best to consult a specialist who specialised in Endometriosis and fertility.

From here, I embarked on another journey and by far the hardest I have been on yet, IVF. As recommended by the specialist, my husband and I tried to conceive naturally for a few months, but struggled due to my Endometriosis. During this time, we also suffered a miscarriage which prompted the specialist to recommend we begin the IVF process. This proved to be the best decision as we are expecting a baby girl in July.

My Endometriosis journey has been lengthy and is far from over. But it has taught me to trust myself and recognise my strength, both physically and mentally. Despite the opinions of doctors, specialists, family, and friends, I have learned to rely on my intuition and have faith in what feels right and wrong within my body. While this can be a lonely journey, it doesn’t have to be. It is important, no matter how independent you are, that you surround yourself with a good support network. People who are there for you in all the good and all the bad.

ANNA’s story

I became aware of endometriosis (endo) at age 21. After experiencing extremely painful periods for several years, I was referred to a gynaecologist to investigate the cause. After trialling many different types of medication to alleviate my symptoms, my gynaecologist suggested a laparoscopic surgery to determine if I had endometriosis. Since then, I have undergone another 6 surgeries all related to my endo with very limited impact on my symptoms. Following my second surgery to remove endo, I was encouraged to try fall pregnant within 12 months of surgery, so that the endo had less amount of time to grow back and it would hopefully not cause issues with falling pregnant. Shortly after getting married, my husband and I started trying for a baby and fell pregnant straight away. Having another child proved to be a lot more difficult and after two miscarriages, I sought intervention from a fertility specialist, I’m unsure whether endo caused my fertility issues but I’m certain that it didn’t help. I was able to fall pregnant naturally for my fourth pregnancy with some additional help and was lucky enough to give birth to another beautiful boy.

In December 2021, I had my most intense laparoscopy surgery, where stage 4 endo was discovered. Following surgery, my gynaecologist advised that it would be best for my body to not have a period anymore as the more build up of endo I have will mean lengthier and more painful surgery next time around. I am now on medication that stops my periods and has helped considerably with my symptoms but there are many side effects, the main one being weight gain. This medication while great is very costly as it is not currently on the PBS, I have seen some petitions to try change that so hopefully it happens soon.

What has endometriosis taught me? That immense period pain is NOT normal, get it investigated and investigated early.

KEELY’s story

I am the mother to two little boys, and have suffered from "endo" since I was 22. Prior to children- my journey was one of debilitating pain, surgeries, hospital admissions, countless doctors appointments (utilising medicare threshold cap by April), medicated pain relief, trying as many non-medicated options as I could, struggling to work.

I have been fortunate enough to not have issues with fertility- but it has not been without its challenges since pregnancies. So often, women with endometriosis are told to "fall pregnant to fix it", but it returns. For me, I couldn't breastfeed as long as I had hoped for due to the uterus contractions with feeding causing immense pain. I couldn't carry my child down the stairs when I had a severe flare. I couldn't take my kids to the park or run around with them.

Endometriosis has taught me to be flexible as a parent. To try different activities in our own way (playing memory on the bed) and to take some days slowly. Some days, it involves more screen-time and less time at the park. It has also taught me that we can raise the next generations of children (boys and girls alike) to have a greater understanding and care of womens health.

NICOLE’s story

My cycles have always been debilitatingly painful. I would vomit and pass out from the pain, endured back pain, sciatica pain, fatigue, nausea, mid cycle bleeding and pain. It was both physically and emotionally exhausting. After many hospital admissions, doctors’ appointments, invasive tests and expensive scans I was told I was working myself up, it was just a period and it would hurt less if I just relaxed. I was made to think it was all in my head, I was weak and this is what everyone goes through. I lost hope and hid the pain which impacted every part of my life; work, studying, travelling, friendships, socializing. Years later my brother was telling me about the pain his wife experienced with endometriosis and adenomyosis and suggested this could be what was happening to me. I spent the next four years again searching for answers with various medical practitioners. I was told again it is normal and it’s just something as women we need to live with. It’s not, and as a society we need to stop normalizing women’s pain.

I am eternally grateful for the GP who took the time to listen to me. I burst out in tears in the specialist’s office out of pure relief. It took 22 years to get a diagnosis of endometriosis and adenomyosis. The conversation then changed to issues of infertility; I was shocked. With a laparoscopy (costing me thousands of dollars) it could reduce pain until the endometriosis grew back and give me the chance of having a child. If we did want a family, it was ideal to begin trying for a child after the surgery, before the endometriosis grew back and to minimize scar tissue from multiple surgeries. It would also buy me more time in case I needed to explore IVF. Ideally, we wanted to wait so we could travel and be married before children, but this disease was tearing up every aspect of my life. with the help of an experienced surgeon we were blessed with our miracle baby and I am so in love with our beautiful little boy. As a family, we have the looming dread of when the endometriosis returns; pain can improve, stay the same or get worse. We also have to think about future surgeries and if we want to have any more children, if we are able to.

My body has been through a lot and I know now to trust my instincts and that no one knows my body better than I do. It is important to share our journeys of living with this chronic disease. Not everyone will understand, but it could help that one person suffering in silence to not lose hope and get their diagnosis.

JAYDE’s story

My endo journey started when I was 15 years old and I was seen by my GP for high emotions, weight gain, cystic acne and lack of menstrual cycles. I was referred to a gynaecologist and because I was under 16 I had to see a paediatrician. I remember being tested for diabetes and being admitted just for tests due to my age. I was prescribed oral contraception at 15 and regulated menstrual cycles with this. At 17 I had my first explorative laparoscopic surgery to see what was going on as I was still unable to menstrate naturally and my hormones were all over the place. I was soon after diagnosed with stage 3 Endometriosis, Bicornate uterus as well as polystic ovaries, and Duplex kidneys.

They managed to remove majority of the tissues internally, and they were positive for the future with further specialists managing my kidneys, however I was told I’d never naturally fall pregnant and would need intervention. My symptoms returned with another two surgeries to remove internal tissues, and my appendix as they were now also completely fused and carried a lot of disease. I then started to forget to take the pill so I had the implanon inserted. This sent me crazy, my hormones were all over the place and physically and mentally I wasn’t well. I commenced the pill again so that I could transition to get the implanon out, however before I could get it out I found out I was pregnant. My miracle little boy was delivered via C-section at 38 weeks due to kidney complications and the bicornate uterus meant I was never going to naturally give birth.

2 years later I went to have the mirena inserted and another explorative laparoscopic surgery… they had found that my uterus and bladder had fussed to my C-section scar and so I had major surgery to remove and detach my organs. Throughout this hospital admission I was so unwell the pain team were involved however I was accidentally overdosed and ended up having to be resuscitated and sent to ICU. This was a long recovery process, and gave me a completely different perspective in life. It was from here that I learnt so much more about endometriosis, I went and educated myself with pelvic floor physiotherapies and followed strict diets to loose weight and look after myself for my son.

Since then I have been healthy, maintained my hormonal Imbalances and managed to lead a healthy life. Endometriosis has taught me to never underestimate your body, as miracles do happen. The world is your oyster and even when you have chronic health issues, you are able to achieve whatever it is you want. Despite all of these challenges I have successfully become a Nurse, I work full time in Service management and continually provide for my little boy whose almost 4.

STACEY’s story

I’m 28 and I was diagnosed with stage 4 endometriosis at the age of 14.

That’s a time of my life that I’ll never forget. I remember, getting up from my chair in class and just buckling over in pain. I was vomiting from the pain, and I remember Mum coming to pick me up from school and she took me straight to hospital. Because endometriosis wasn’t a common diagnosed back then, the doctors assumed it may have been my kidneys or appendix. Thankfully, the did some scans before cutting me open and that’s when I was diagnosed with serve endometriosis.

My endometriosis has affected my life in many ways, constant endo attacks at school or work and having to rely on prescription pain killers, multiple sick days, and cancelled plans. However, in the recent years, it has had the biggest effect on my fertility.

Over the years, I’ve suffered multiple miscarriages due to my endometriosis with that I was told I was infertile at 23 ad my husband and I have battled through many years of infertility and IVF, with multiple failed embryo transfers. It wasn’t until 2021 that I was given the option to but my body into medicated menopause and completely stop my cycle – thankfully, this worked and now we have been blessed with a beautiful boy.

We need to stop feeling ashamed of this condition and let go of the stigma that’s attached to endometriosis. We should be comfortable enough at work, school or wherever you may be to talk about it and open conversations. It’s time for women to stop feeling like we must live in so much pain, because “it’s part of being a woman”

ELOISE’s story

I was diagnosed with endometriosis (and adenomyosis) in 2020, after I had gone through IVF/ICSI in 2019, and I was so lucky to get 7 embryos. I started the exciting journey and had transferred 4 embryos over 5 months before really thinking "why isn't this working?". So after talking to my specialist off I went for an ultrasound where I was told I have endometriosis and adenomyosis, 6 weeks later I was off to Sydney for a laparoscopy where stage 4 endometriosis was removed and got told "you'll definitely get pregnant now". My 3 remaining embryos didn't take, but throughout all my transfer cycles I have had 5 chemical pregnancies.

My journey, like so many others have experienced, has brought a lot of unknowns. There is so much you can't control, and there is so much that will surprise you along the way. I am continually teaching myself to be concious of my mindful state and to take things as they come. It is hard to remember there is no right path for anyone to manage endometriosis. I have not so graciously taught myself how to manage and continue with my fertility (or should I say infertility) journey and the grief that is experienced with that. But ultimately in the last 3 years I have learnt that although endometriosis and adenomyosis affect me in so many ways, I can make real and concious efforts to make sure it doesn't define me!

IMOGEN’s story

My endometriosis journey started pretty much when my period started, in Year 5. I always had bad cramps, but used to be able to manage it with over the counter pain meds. In high school they started getting worse, but being at an all girls school, my pain would usually earn me an eye roll. One day at school my pain was so bad that I tried to tell the lady in sick bay that I wasn’t coping and mid-way through her telling me that I’ll be fine, I collapsed at the window.

My mum has always been my biggest supporter and once I started my own research into why my pain was so bad, she took me to all the recommended doctors and specialists all over Canberra to get some help. I tried all the progesterone creams, pills and diet changes but it wasn’t until I finally connected with a lovely woman on the Canberra Endometriosis Support Facebook page that I was pointed in the right direction and found someone who would actually listen. By this stage my pain was so bad that most months I would end up in hospital on a morphine drip because Endone wouldn’t touch the pain. I found an incredible Specialist in Canberra called Dr. Menakaya who, with a state of the art scanning machine, finally diagnosed me with Stage 4 Endometriosis, or Deep Infiltrating Endometriosis. It was so bad that part of my bowel was stuck to the back of my pelvis with endometrial cells, as well as all over my ovaries. I was told that it was highly likely I would lose a fallopian tube during my 7 hour long surgery and would struggle to fall pregnant.

I was extremely lucky that although the surgery didn’t take all my pain away, they were able to save my fallopian tube and we were able to fall pregnant quite quickly after trying. I’ve gone on to have two beautiful babies and my pain is no where near what it was before I had them.

The biggest thing Endometriosis has taught me is to keep fighting for that diagnosis. Period pain is not normal. 1 in 9 women are diagnosed with endometriosis but most spend so many years being told that “everyone gets cramps, suck it up”. My pain was debilitating, I missed countless days of school and university and was on enough pain meds to take down a horse. I knew it wasn’t normal but when you are being told over and over again that it is, you start to doubt yourself. Listen to your gut, get second, third, fourth opinions if necessary and spread as much awareness as you can because one woman on a Facebook page changed my life, and you could change someone else’s life who is looking for answers too.

Endometriosis Australia is a nationally accredited charity that endeavours to increase recognition of endometriosis, provide endometriosis education programs, and provide funding for endometriosis research. Visit endometriosisaustralia.org for more information, or to support their research.

*Cbrmamas acknowledges individuals living with endometriosis who are transgender or non-binary and may not identify as women.

Endo mama: stories from the 1 in 9