My Story With Endometriosis

When I was a teenager, I started to experience extreme period pain. I went to the GP but was fobbed off (‘I’d grow out of it’, ‘I’d be fine after I had a baby’ … that kind of nonsense), so I carried on as if this pain was normal.

 

It was not normal.

 

After seven years, I was referred to a gynaecologist who, during surgery, found that I had endometriosis. Endo is a chronic pain condition where cells similar to those that form the lining of the uterus are found elsewhere in the body. When hormones tell your body to start a period, these cells also bleed, causing adhesions to other organs, extreme pain and general chaos. People with endometriosis can also experience infertility, heavy periods, pain during sex, tiredness, irritable bowel, and pain during ovulation.

 

My diagnosis was in the late 90s, and I learned that the seven years it had taken me to find out I had endometriosis was in fact the national average. Appallingly, this statistic remains exactly the same.

 

When people* start to experience periods that are not within the normal range, they need to be investigated far more quickly. Everybody expects the odd cramp and a heavy day or two, but if you are bleeding through your menstrual protection really quickly, or if you can’t move around because of the pain you’re in, then something is wrong.

 

*I say people because, although most people who have wombs and periods are girls and women, some trans men and boys also have periods and wombs.

 

The truth is that many people do not take period problems seriously (especially in younger people) and, often, doctors are dismissive. Doctors aren’t renowned for being great with any chronic pain condition—add “typically female problems” to the list and it seems impossible to be treated like a worthy human being. I had a male GP tell me to never see him again about periods; it was a job for a female doctor only. I had another who told me he didn’t really know about periods because patients normally chose female doctors for those conversations. But it was also female doctors who told me to just take paracetamol and hug a hot water bottle rather than refer me for the specialist help I needed.

 

This is a condition that one in ten women of reproductive age experience. It is not a rarity that doctors have never seen before in their clinics. And yet there are still a lot of questions about endometriosis that research has not yet solved, such as what causes it or (and this is key) how to cure it! There are treatments that can reduce symptoms. But nothing, not even a hysterectomy, will remove all problems for all sufferers.

 

Some high-profile people with endometriosis got together and made a video pointing out that they are #1in10 of the population and need to be taken seriously.

https://www.youtube.com/watch?v=e6qcHVK-otk

 

Written by Anonymous and edited by Nina Giblinwright.