All Disease

I have a disease that I know nothing about.

I thought I knew everything, or at least a lot about it – but that turned out to be very far from the truth and also very bad for my health.

I have endometriosis. For a long time I thought it was all about the debilitating period pain I’d had from the time I was about 14. Cramping I’d heard of and could identify in my belly, but it was harder to describe the ache in my back and how my legs felt under such constant pressure that it was hard for me to stand upright. I also felt sick and couldn’t understand why having my period should make me get diarrhoea and need to pee constantly. At 17 I was put on the contraceptive pill by a doctor and led to believe that was all medicine could do for my troubles. At university, it was easier to miss classes.

In 2001, at 24, and after eight years of complaining to several different primary care doctors of period pain that didn’t “feel normal”, I insisted on a referral to a gynaecologist. My general practitioner, who memorably told me that “some women have bad period pain, that’s life”, reluctantly gave me one.

Luckily for me, the referral was to a specialist who had good knowledge of endometriosis and experience in laparoscopic surgery. He immediately suspected endo and performed a laparoscopy, which turned into a laparotomy (where a surgical incision into the abdominal cavity is made) after a marathon surgery to remove lesions and adhesions that had fused my uterus, bowel and rectum together.

Related: ‘The pain is paralysing’: 30 women describe living with endometriosis

He was quite keen on showing me photographs of his handiwork.

“Look how bad it was, ” he said as he pointed to bloody pictures that all looked the same. It didn’t matter to me which one was the bowel and which was the rectum, I just needed to hear his words “look how bad it was” because it made me feel vindicated. I had almost begun to believe that I just had a low pain threshold and couldn’t handle what normal women could. Now I had a disease with a name and I didn’t have to feel like I was making it up any more.

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