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.
Thank you for sharing your story. I am currently working hard to get to a healthy BMI to have my biggest endo surgery with the most risk. I hope more and more people continue to share their stories to help reduce the time it takes to reach a diagnosis.
I think that’s what I hate about it so much, it always comes back, or never even goes away after an op for some ladies. It’s been 18 months since my last op and it’s all back to square one. The last year’s increased coverage has helped immensely though, I feel like if I at least know more I can be more empowered when seeing the Doctor. Hope your surgery goes well and recovery isn’t too bad x
Make sure you see a bsge registered endo specialist Deepa, not a general gynaecologist. They now know that endo needs to be cut away. Lasering etc by a non expert will only cause it to grow back just like taking to top off an evil weed!
Thank you for a great read Alice. I’ve followed you for some time and didn’t know. I have stage 4 endo and a similar condition adenomyosis, both of which have only been diagnosed in the last three years. I’m 42 and I’ve had the sorts of problems that you describe since I was 14! I was always told it was just one of those things. I won’t be saying that to my daughter! X
This resonated so strongly with my experience (the hormone side effects and the baby-making time pressure – ugh), although I am one of the incredibly lucky ones who had to wait just nine months for a diagnosis – only because, after seeing five clueless doctors, I remembered a friend having the same symptoms and was able to go to the doctor with a potential diagnosis for what I was experiencing.
Thank you for raising awareness, and I hope all goes well with the surgery (I still can’t drink peppermint tea without thinking of that post-lap tummy full of air ;) xx
I totally feel your pain, I have PCOS and it hit an all time low when my workplace had to call out an ambulance to me as my periods get so bad I pass out. I did warn them this would happen (it doesn’t happen ever month, just randomly – which obviously adds to the excitement!) but I think me unresponsive was enough to cause my male boss to panic. The ambulance turned up just as I was going back round, so I felt like a massive fraud. Went to the GP and they can’t find anything wrong with me, and don’t know what to do. They say there isn’t much they would do unless I was trying and failing to get pregnant, which I want to do but until now I haven’t found the right person, and right now just isn’t the right time. I’m freaked I’m going to never be a mum.
The only thing I have think might happen is that when I have a bad one, I get a weeks worth of period – blood, hormones everything, in a few hours, that’s my guess, at what might happen, which the doctors seem to agree with. I have spent so many years beating myself up about not being able to deal with the pain of a period which millions of other woman do, I thought I was a wuss. However, this week I was contacted from a lovely lady who had read the blog post I read on the whole ambulance incident, and she said the exact same thing happens to her. I feel so much better that I am not alone!
Thank you for speaking out, hopefully if we all do we can start to see really change. Someone I know once joked if periods happened to men we would have better ways of dealing with them, I something think they might be right!