It is Endometriosis Awareness Month once again. I have used this space to write about the condition before and no doubt will again. Goodness knows, my dodgy womb tissue isn’t going anywhere soon.
You will have heard of endometriosis, a condition where tissue similar to the lining of the womb grows in places it shouldn’t. It is not a rare condition (one in 10 people with periods are estimated to suffer from it) but it is hell to live with; its headline symptoms being excruciating pain and infertility, with increased risk of a host of cancers thrown in for good measure.
Over the next few weeks, people will share their most harrowing stories. People will quote some grim statistics at you, like the fact that it takes an average of eight years to get an endometriosis diagnosis, or 58% of women in the UK visited their GP more than 10 times to get one. Or they'll tell you that research has suggested endometriosis increases the chance of miscarriage by 76%. Or that, between January and October 2019, more than 100 women in the UK took their own lives because of the disease.
So why is it not taken seriously?
Read more: Endometriosis patients wait over eight years to be diagnosed in Scotland, report finds
If I had a fiver for every uninterested male doctor who lectured me about period pain then I probably could have afforded to go private. I returned time after time, documenting distressing symptoms and explaining how I spent entire days curled up in a ball on the floor, to the point where I once wondered if I was dying. I was shrugged at and sent away every time.
Realising I had endometriosis was completely accidental. I was kicked up to the hospital after a routine smear test and, when the gynaecologist there told me she thought she knew what was causing my symptoms, I cried with relief. Not because there was any cure or respite but because I had spent years feeling like I was either defective or going mad. It was the first time that someone had made my struggle feel validated.
It is clear that there is work to be done to stop normalising women’s pain. We are told period pain is natural (doctor-speak for put up and shut up). Drummed into us from a young age, we believe that but, more worryingly, so do some medical professionals. I was well into my 20s before my experience was not ‘normal’.
It seeps into our professional and personal lives too. Coming into work even though you are doubled over in pain because the alternative is being quietly regarded as being unreliable. Dragging yourself out to see a friend because you cancelled the last time and you know that they won't understand why if you do it again. We push ourselves to the brink because people can't bring themselves to understand with that we're forced to live with.
Read more: Endometriosis drives women to hysterectomy – but it doesn't work
I suppose there are reasons to feel hopeful (chiefly because I’m using a newspaper column to chat away about the rogue tissue growing inside me) but we are getting nowhere fast. The treatment of women’s pain and what we are just expected to endure is so deep-rooted that it cannot be unlearned overnight.
The lack of diagnostic and treatment methods make endo a slow, painful and mentally draining journey. But it would be a lot easier if you didn’t have persuade a dozen medical professionals that it isn’t all in your head first. So let's start there.
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