your stories
I wasted 10 years of my life trying to get a diagnosis. In the end, with the help of strangers sharing their stories on the internet, did I get my then gynae to write “suspected bowel endometriosis” on the ultrasound referral form. After countless TVUs showing nothing, she decided to refer me to a “proper” clinic, who immediately identified stage 4 endometriosis and adenomyosis. So in essence, I diagnosed myself. A 6-hour surgery, removal of 40+ sites of endometriosis, total hysterectomy, ovary and fallopian tubes removed, a bowel resection, plus an 18-month recovery, I'm finally coming back to life. I have a host of side-effects and related conditions caused by living with undiagnosed endometriosis for a decade, but it’s better than living how I was.
Anonymous
I used to vomit and pass out on the bathroom floor from pain during my period. My mother assured me that was completely normal, and that it happened to her mother as well. In my early twenties, I ended up in the emergency room of a German hospital after passing out in a hostel bathroom. A German doctor printed me out pages of information on endometriosis, horrified that I didn’t know what he was talking about. It was the first time I’d ever heard the word. It would take 6 more years for me to receive an official diagnosis.
Kim
I threw up from periods at 13. I was told periods were supposed to hurt. I had pain in my ovaries at 15. I was told it was a follicle issue. I was prescribed the pill at 25. This hid my symptoms for 10 years. I had regular pain in my ovaries again at 25. I was told it was ovulation pain. I was FINALLY referred to a specialist at 25. My endo was diagnosed as stage IV in a 30 minute surgery. My pain returned 6 months later. I was told my only option was chemical menopause. I dealt with pain for another 12 months before it became crippling. My second surgery was 3.5 hours and included a vaginal reconstruction due to the severity of the tissue infiltration. I saw pain specialists, pelvic physios and acupuncturists because the long-term pain had fried my nerves in my pelvis. And have been on multiple different pain management medications. Finally, I sought out Astrid to support me, and my daily pain has reduced from a 7 to a 3. I’ve had 2 additional surgeries, my most recent resulting in my ovary being removed. I have also been diagnosed with adenomyosis.
Kaitlyn
I had taken so many pain killers for my ‘period pain’ that I ended up in the emergency room in excruciating pain. The doctor explained that the amount of period pain was not normal and referred me to a gynaecologist. After a laparoscopy, a 4 hour surgery, 4 days in hospital and 2 weeks of tough recovery at home… I finally knew it wasn’t just period pain. After 22 years.
Rach
I was diagnosed with endometriosis in 2013. I’ve had over 16 operations, some of which have involved removing parts of my organs. I’ve lost so much of my bowel and had my bladder resected and I know that didn’t actually have to happen. The system needs to work better so this disease isn’t progressing whilst people wait to be seen by a specialist, have surgery or generally be given the care they need.
Alice
The first time I went to the doctor about my intense cramping, he asked me if it ‘felt like leg cramps’. It would take 6 more years to receive my diagnosis of stage III Endo.
Kimberley
Being in labor was easier than my first period.I was walking with my Nanna when I got my first period, I had to bend myself over a tree in agony whilst she stood unsure how to help. From then on I experienced horrible periods and horrible pain that I just dealt with, assuming it was a normal part of life. It wasn’t until after my first son was born that I KNEW something was REALLY wrong. I was now experiencing pain EVERYDAY, back pain, leg pain, ovary pain. I had the support of a great GP and I was able to get a diagnosis within 18 months and for that I consider myself one of the lucky ones.
Alice
I have been in pain for as long as I can remember. I would pass out during each period, and the bleeding was so heavy that I had to change my pad every two hours. It took over 20 years, but in 2022 I was diagnosed with stage 4 endometriosis and adenomyosis.
Anonymous
I always assumed that painful periods were just a normal part of life. Eighteen years on, I am here to tell you that this kind of pain is not normal, and if left untreated it can impact your body and quality of life. I was diagnosed with endometriosis after 14 years of symptoms.
Anonymous
As a teenager, I visited multiple doctors, but they all dismissed my symptoms, suggesting that the contraceptive pill or getting pregnant would be the solution. By the time I was 22, I wasn't just in pain during my period - I was in constant pain, which led me to use morphine patches and oxycodone for two months straight with little relief. Fortunately I found an excellent GP and could afford surgery and was finally diagnosed with endometriosis at 22.
Anonymous
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