Endometriosis is a Thing

We are so excited to be introducing the first guest post in our Smutathon 2020 ‘Endo Stories’ series!

Endometriosis is a condition that affects 1 in 10 people AFAB but still 54% of people don’t know what it is – which rises to 74% of men. Between now and our main Smutathon 2020 event on 26th September, we will be sharing posts written by people with endometriosis about their experiences with the disease and the difficulties they’ve faced in getting acces to diagnosis and treatment.

We hope that this will increase your (and our) understanding of endometriosis – and will encourage you to donate to support Endometriosis UK, our chosen charity this year!

Our first guest blogger is Zebra Rose (she/her), a fantastic writer and generally brilliant person. You can find her on Twitter at @ZebraRoseSub

I was 21 when my history of ridiculously heavy menstruation, cramps that incapacitated me for days on end, pain during and after vaginal sex, and digestive disruptions were put together for the first time and diagnosed as endometriosis. “A classic history for endometriosis” said the gynae consultant I had finally been referred to after over a year of tearful GP visits and inability to hold a job. “Why didn’t you come to me sooner?”

Don’t even. 

I didn’t bother explaining that my (male, elderly) GP had refused to refer me until he ran out of painkillers to prescribe and I’d yelled at him for suggesting a psychological diagnosis. Or that none of the GPs I’d seen (including the one who prescribed mefanemic acid to my twelve-year-old flood-prone self) had even hinted at the possibility that this might not be ‘just one of those women’s things’ (subtext: that I should belt up and learn to live with without making such a fuss). What would be the point? I was just too busy being relieved that this Thing that was ruining my life, was a Real Thing, it had an official name and everything!

What it is; there are a bunch of cells inside the uterus whose job it is to grow a lining, so that if an egg is released and fertilised, it will have somewhere cosy to develop. These cells do their thing every month, but if no fertilised egg comes along, they fold up their tent and head for the nearest exit. Endometriosis is when those cells start turning up outside the uterus, and grow in places they’re not supposed to be lurking in. Tendons, organs, blood vessels; that sort of hideout. Because these rogues can’t leave once they’ve checked out, they hang around and cause lesions and growths that get in the way of other bits of you doing their jobs.

So, I had a laporoscopy – a fairly urgent one. This is keyhole surgery, when the medics make three little holes (one through the bellybutton, the others at the top corners of le bush), pump your abdomen full of air, and stick long-handled instruments like cameras and lasers inside you to fix whatever needs fixing). They offered me the video of the op, which I inexplicably declined (a decision I regret, because body geekery is fascinating), and while I was out cold, they burned off the endometrial tissue that was taking up residence in the wrong neighbourhoods. I was back home the following day. Doddle. Lesson learned – doctors have their own biases and knowledge gaps; when in doubt, get another opinion.

It was another eighteen years before I realised that I’d fallen into the pattern of resigning myself to more and more extreme menstrual effects, that my quality of life had diminished until I dreaded the two weeks every month that backache, stomachache and vicious cramps would screw up my ability to function. Turns out it’s much easier to get a diagnosis of endometriosis when you have a medical history of endometriosis, and reproductive health has come a LONG way in the past two decades! Actually, I now have adenomyosis, which is where those pesky cells get themselves entangled within the fibres of the uterus itself – where they can’t be lasered off, the sneaky little gits. This – and the likelihood that surgery will leave scarring that causes its own set of problems – meaning that I’d be best-off getting an IUD implanted.

I had a Mirena coil fitted and it has definitely reduced my flow rate to manageable proportions, cleared up much of the digestive trouble, and allowed me to have as much vigorous PIV sex as we can manage without breaking either myself or my Fella. Result.

I’m really pleased to see progress being made in recognising and addressing this debilitating condition across medicine, research and day-to-day life. Promoting a positive and inclusive approach to gender, bodies and sex is an essential part of this – I’m proud as hell to be part of the #Smutathon community doing exactly this!