When the medical condition Endometriosis hit headlines last year I was absolutely delighted. Suddenly something I, and a handful of women I knew, had been suffering with for years was finally being taken seriously.
It was about ten years too late, but it felt like we and our defective endometrial linings were finally being listened to.
Endometriosis is a disease that affects 1 in 10 women during their reproductive years: a massive 176 million women worldwide. Cells like the ones in the lining of the womb go rogue and are found elsewhere in the pelvis, causing painful and debilitating symptoms such as excruciating periods, heavy menstrual bleeding, exhaustion and pain during sex. They grow and subside with each menstrual cycle, and historically it’s very difficult for women to be diagnosed with the condition. You can’t see it on an ultrasound: the only way to have a certain diagnosis is via surgery, where the doctor will remove any of this surplus endometrial tissue found.
It’s literally one of the least fun parts of owning a uterus.
I started on my own endometriosis journey when I was about sixteen. I was exhausted, in pain and bleeding more than any teenage girl should have to. I couldn’t get through my periods without extreme mood swings and my months were cyclical, punctuated by massive doses of painkillers and a truckworth of tampons. It was awful and I was backwards and forwards to my GP for years.
As is the way, I was given a litany of diagnosis before endometriosis was suggested, but still my doctor was hesitant to refer me to any kind of specialist. Out of pure pain and frustration I finally self-referred to a private consultant to get my endo diagnosis, paying what felt like a huge £150 out of my paltry 20 year old wages, and he sent me back to the NHS with a date for a laparoscopy – keyhole surgery to obliterate any trace of endometrial lining they might find floating around my pelvis.
And did they ever: the predicted 30 minute op took three hours, with my surgeon finding so much endometriosis that he was unable to get rid of it all. What an over-achiever, eh?
Following the surgery I was put on a year-long regime of hormones to prompt the symptoms of menopause: they needed to temporarily kill my period to shrink the remainder of my endometriosis, the side-effects being weight gain (I had a middle aged spread at 21), hot flashes and a veritable rollercoaster of HRT-induced emotions.
I’d say it was a fun year, but that would be a massive lie.
Endometriosis can hugely affect your fertility, with the worst cases rendering women infertile, yet ironically bearing children is the one surefire way you can get rid of your symptoms. When I came round from my operation that was the one question I asked of my gynaecologist: how badly would my fertility be affected? He told me that if I wanted to have kids I should get on with babymaking as soon as possible and, freaking out at the thought of being infertile, that’s why I fell pregnant with Elfie at the age of 24.
Hux followed 20 months later, and a post-birth exploding cyst and an appendicitis misdiagnosis aside (again: not fun) I’ve been pretty lucky ever since. My symptoms up until now have been eased somewhat by tricycling the pill once again – I found Yasmin was easiest on my hormones – but not any more. Now at the age of 32, 11 years after my last laparoscopy, I’ve admitted defeat. The monthly cycle of pain and exhaustion is too much and I’m worried about my fertility being compromised long-term.
Yep, I’m going back for surgery.
This time around it’s been so much easier to talk to people, both medically and not, about what I’m experiencing endometriosis-wise. I now have friends who’ve been through the same and who aren’t afraid to talk about it, friends who know how terrifying it can be to have this aspect of your health so affected. In fact, it was talking to a friend who’d been through issues with her endometriosis recently at Am I Number 5 at Britmums that convinced me to stop putting off the surgery I knew I needed, and to just bloody (literally) sort it.
The increase of visibility around endometriosis (including celebrities like Lena Dunham speaking up about their experiences) has helped hugely, and the reaction I’ve encountered has been completely different compared with the first time around. On going to see my GP six weeks ago she referred me back to a gynaecologist immediately, from where I had an ultrasound scan and follow-up appointment, with a surgery date to follow. A quick month and a half for something that took nearly 5 years to help me with back in my teenage years.
I no longer minimise the pain, tiredness and hormonal mood swings I feel due to endometriosis. Sometimes it’s enough to get through my worst days without keeling over from pain and exhaustion and I might need to crawl back into bed to run my little empire on occasion, but I don’t feel ashamed of that any more. I’m proud to have achieved in my career and family life despite my uteruses best efforts, it’s OK to say you aren’t infallible and that you need to look after your body and your health.
And if you want me, that’s what I’ll be doing.