The hell that is endometriosis

Mine is a familiar story. I was in total agony every time I had a period. In my teen years and twenties, I always knew at least 2 days of the month would be spent curled in a ball, weeping, puking, trying to breathe my way through the worst pain in the world. I had days off school. I walked out of classrooms and exams because I needed to vomit. (Nobody ever suggested I retook one A level that was completely messed up by my period and me walking out after only half an hour.) Nobody ever said being so sick wasn’t ok; hot water bottle, ibuprofen and bed was the only thing on offer. It didn’t touch the pain which was an endurance to get through. Now we have people like Professor John Guilleaud (University College, London) saying menstrual pain for some is as bad as having a heart attack. Back then I was told I had a low pain tolerance. I thought everyone suffered as I did but I was weak. (Hollow laugh.)

It was a matter of knowing it would end. That day one was worse than day two. I just had to keep breathing. Work was tricky. I knew I’d be ill once a month so I could never afford to have any other sick leave. I only had a small window once my period started before I began vomiting, so travelling home from the centre of London was nerve wracking. I have puked in a lot of public places. It just added to the humiliation.

It ruined holidays, parties, romantic encounters, fun, work, play.

A gynaecologist told me I was perfectly healthy and would get better after I gave birth. She was wrong!

On the ward after my emergency caesarean, I didn’t ask for pain relief and a nurse asked why. The truth was the pain was nowhere near the pain I endured every damn month – it was a breeze in comparison. After the boys were born, contrary to what I’d been told, it got far worse and I was in excruciating pain for 3 weeks out of 4. I was dismissed by the doctors, told I was neurotic. Despite me insisting the pain was all related to my menstrual cycle, I was told it was probably IBS. It’s hard to keep going when professionals tell you there’s nothing much wrong with you and your body insists otherwise. It took eight years before I had a laparoscopy which showed I was chock full of endometriosis. Bits of my insides were glued to each other. It was such a relief to be told that I would have a simple operation – “a spring clean” – and all would be well.

Of course, all was not well. There is no cure for endometriosis. With my first period post surgery, back came the pain.

No treatment is perfect. No treatment cures. They dampen symptoms but produce their own side effects. Mine lists the following: abdominal/pelvic pain, ovarian cysts, back pain, headache/migraine, nervousness, dizziness, nausea, bloating, breast pain, weight gain, acne, depression, changes in mood, loss of interest in sex, itching/skin rash, and puffiness in the face, hands, ankles, or feet. Such fun!

People don’t know what endo is, or they think they do and imagine it’s a bad crampy period. There’s no recognition of how debilitating it is. How destructive. How it ruins lives.

I sometimes wonder what I could have achieved if I wasn’t derailed by this damn condition so often. I know there’s no point on dwelling on what-ifs though and bumble on as best I can, but it niggles at me. Just when I make headway on a project along comes the endo to fell me. Everything I do has to be done when I can manage it and everything is stop-start.

That things still haven’t improved in the decades I have suffered says much about the lack of importance afforded to women’s issues. It’s heartening to see #endometriosis trending on twitter, but watching this video is heartbreaking.

Hell yes, endometriosis care needs urgent improvement.

I just found this drawing of me aged 17 in the midst of a period. Drawn by my best pal then and now, Lisa Bailey.

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