The Hard Road to an Endometriosis Diagnosis

Trigger Warning: mention of suicide and self-harm.

The first time I came across the word Endometriosis I must have been in my early twenties. The actor Lena Dunham shared in an Instagram post that she had to get to the ER on a regular basis because of her painful periods caused by Endometriosis.

Endometriosis is a condition where cells similar to the ones in the lining of the uterus are found in other parts of the body. These cells react in the same way as those in the womb, meaning they build up, then break down and bleed. However, unlike the cells in the uterus that leave the body as menstrual blood, this blood has no way of exiting the body.

Symptoms include painful periods, chronic (pelvic) pain, painful bowel movement and/or urination, dyspareunia (pain during sex), fatigue, depression, infertility etc. Endometriosis affects around 1.5 million women, non-binary people and transgender men in the UK.*

I remember a part of me thought: what if I have that too? At that point, I had been struggling with painful periods for 10 years already.

I can’t recall how many times I have been told that ‘some women just have painful periods’. I thought I was unlucky, that it was genetic: My mum used to vomit every month from the pain as a teenager. Doctors prescribed me pain killers that stopped working after the second month, and hormonal birth control that gave me unbearable side effects, like migraines or suicidal thoughts.

Going to see a health care professional became torture for me. I wasn’t taken seriously, I was judged on my choices, I was pressured to take yet another birth control pill even though the previous one caused me to self-harm, and I left thinking that I was a weak person. When I mentioned endometriosis to one doctor, he told me that I couldn’t possibly have that.

Credit - Charles Deluvio, Unsplash

I tried to ignore the pain as much as I could, taking (too) many painkillers, missing out on school, work and social events on really bad days and praying for it to go away because I didn’t want to go to yet another doctor who would tell me to “just use a hot water bottle.”

However, it got in the way of my biggest dream: Acting.

I stuck heat patches on my body so I was prepared for a long day at drama school. I bit in my hand when I was in public toilets so I wouldn’t scream out loud and I cried because urinating and bowel movements were excruciating. But it wasn’t just the cramps on my period. I would get this random abdominal pain. Once I had such terrible pain on my right side that I thought it was my appendix when I was, in fact, just ovulating.

It came to the point that I googled ‘hysterectomy’ at 25 because I was just so exhausted from spending the week after my period recovering from it and the week before getting terrible PMS because I was dreading it so much. Suddenly, the tracks of the London Underground looked so inviting. If I jumped I wouldn’t have to be on my period ever again. I felt hopeless because no one could help me and I was doomed to live like this till menopause.

The turning point came in 2019 when I almost fainted in public. I couldn’t stand up anymore and a man offered to call an ambulance which I refused because it was only a period after all, and some women just have bad periods. In that moment I swore to myself that I would do anything to get help. Accompanied by my sister I went to see another doctor who was the first one to mention endometriosis and that I might have it.

Credit - Erol Ahmed, Unsplash

After some delay in April 2020, at the height of the COVID-19 pandemic, a gynaecologist found a large so-called chocolate cyst (an endometrial cyst filled with blood) on my left ovary during an ultrasound. I was told I had endometriosis and that I needed a laparoscopy (keyhole surgery) because that is the only method to definitively diagnose endometriosis, and to remove endometrial tissue. I have been waiting for almost a year now to get this surgery!

Spending three days every month with period cramps (that is more than a month per year!) had left me hating my body, experiencing phases of disordered eating, struggling with physical intimacy and believing that I wasn’t good enough to be successful, or worthy enough to be loved. I spent lockdown working with a wonderful practitioner in a holistic way: Looking at my nutrition, changing my lifestyle and challenging all these beliefs I had about myself. The results are astonishing: I not only reduced the pain, but I also found a new love and acceptance for my body.

There is still a long way to go. The surgery is the next step to finally get a proper diagnosis after 14 years. On average it still takes 7.5 years to diagnose endometriosis. So it is about time to break the taboo and speak openly about painful periods.

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