Endometriosis Means Fighting for Effective Treatment

When someone is diagnosed with cancer, they tend to get referred to specialists quite promptly. The same happens to people with knee injuries or those with cardiac issues. But for hundreds of women like me, asking for an endometriosis specialist involves begging, and more often than not, arguing.

Fighting for my own care

Almost a year before I found my specialist, I sat in a small surgery in East Sussex, holding a binder containing all of my medical files. Sitting opposite me was a male doctor, staring blankly at me. I was there to ask to see an endometriosis specialist. This was something that as an endometriosis patient, I had a right to do.

I carefully explained my diagnosis, and the fact that the two surgeons I'd seen didn’t seem to know much about the disease. Yet, the doctor questioned everything I said. When I argued that one of these surgeons had suggested pregnancy as a cure, he seconded his colleague’s opinion. Then, I had to spend a few minutes deconstructing the myth on pregnancy as a cure.

I nervously (and politely) explained how any endometriosis specialist would have told him that pregnancy merely puts the disease on hold, and that symptoms re-appear after a mother stops breastfeeding. Upon hearing that, he corrected himself by claiming  that some women do cure their endometriosis that way. I then asked for some statistics, numbers on which to base that statement. That’s when he changed the subject and, in the end, flatly refused to help me find a specialist.

Many women share this experience

It took me 10 months to find a supportive GP who listened to my symptoms, understood how much I needed treatment, and referred me to my current specialist.

The truth is, this is nothing new. Stories like this populate every endometriosis forum. Recently, one of my endometriosis-ridden friends confessed how her GP had told her that endometriosis will always return, so she should simply "deal with it”. This doctor also told her that seeking a referral to see a new gynecologist was useless. She prescribed her some painkillers and sent her home.

Women are not being listened to

Endometriosis takes too long to diagnose. The obstacle to effective treatment is not us patients, it's doctors who are used to being dismissive about female pain.

One in 10 women have endometriosis. That’s millions worldwide suffering a chronic disease. It’s an illness that happens as often as diabetes, but it goes untreated for years. The average patient has to spend around 8 years arguing with doctors, jumping through administrative hoops, and begging for help. Endometriosis doesn’t kill you but, like cancer, it grows and worsens with time.

Many endo patients don’t even expect a cure

However, we require effective treatment for a life-limiting illness. To be able to receive this, we need medical professionals to consider our symptoms, and point us in the right direction. All we need is one doctor to understand the condition, guide and support us until we can function just like everyone else. That shouldn't be a big ask.