Endometriosis: the condition doctors take years to spot

I’ve spent years in and out of hospital, being pumped with medication, and operated on

This week is Endometriosis Awareness Week. It’s a little-known womb affliction that causes incredibly painful, life-destroying periods and pre-menstrual tension. It affects 10 per cent of women in the UK – including me. And I can tell you first-hand that this disease warrants our attention.

Endometriosis destroyed large chunks of my life. I’ve spent years going in and out of hospital, being pumped with medication, and operated on. I’ve missed days of education and work. I’ve spent sleepless nights curled up in a ball on the floor crying in the worst kind of pain. I’ve experienced unbearable mood swings and fatigue. But it took too long to get diagnosed and treated because the condition isn’t well known – even among doctors.

According to Endometriosis UK, the average sufferer waits seven years for a diagnosis. I was fobbed off by doctors for 10 years before I was referred to a specialist. Yet awareness-raising needs to be aimed not just at the medical profession but also at schools  and employers.

Because medical professionals, teachers and employers don’t know about this disease, they lack empathy and understanding when faced with a sufferer. I’ve gone home early and taken days off because I was bedridden, not because I wanted to slack off. I’d rather be out-and-about than vomiting in bed wishing for a hysterectomy to end it all.

The narrative of endometriosis also needs to change. Those who do know about the disease usually know it through the prism of infertility. Yes, it can make you infertile, but placing this as the emphasis alters how patients are treated. As I was coming round from one operation, the gynaecologist suggested I freeze my eggs. That’s hardly sensible or sensitive patient care. I object! Don’t assume I want a baby, and don’t assume I’ll have IVF if I can’t fall pregnant naturally. I’ve had enough of hormones and doctors and hospitals and that is why I will never have infertility treatment.

Here’s where the focus should be: I want to live as healthy and normal a life as possible, and I want people to understand what’s going on when I can’t do that. And that’s why Endometriosis Awareness Week  is important.