My Endometriosis & Me

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Have you heard of it - Endometriosis? Chances are, if you have, it’s only because you know someone (or someone who knows someone) who has/had it. It’s rare (if at all) that it’s taught in school around the UK. So, whilst in Sex Ed in the years of my schooling I learnt to put a condom on a banana as the endometriosis inside me started to form. Helpful.

Just so you know, endometriosis is a condition where the tissue that lines the womb (endometrium) is found outside the womb, such as in the ovaries and fallopian tubes. This causes very painful menstruation alongside other symptoms such as severe nausea, pain during sex, and infertility. But there are many, many other symptoms. It prevents a lot of women from being able to continue with their daily activities, particularly when on their periods. Indeed, when I say women - I mean women who may not identify as a woman too.

Because ‘all periods are painful!’, women with serious gynecological issues often aren’t taken seriously. It takes on average of 7.5 years for a women to get her endometriosis diagnosis in the UK, despite 1 in 10 women having it. 10% of women throughout the world (that’s 176 million) have endometriosis. So why does it take so long to be heard? To get help? I don’t think it would be presumptuous to suggest that this is a serious feminist issue.

As I write this it has been exactly a month since I had my Laparoscopic Surgery, where my Stage 3 endometriosis was diagnosed and burnt away. A key-hole surgery, but an invasive one nonetheless. During surgery my gynecologist inserted the Mirena Coil, a favourable way of preventing pain caused from endometriosis. For me, it did the opposite. The evening my period started (2 days after the surgery - thank you, Mother Nature), I was alone in bed. In so much pain I could hear my heartbeat in my ears. Thumping, consuming my thoughts. My body went numb apart from the unbearable pain in my uterus. I couldn’t move. I couldn't speak. I couldn’t even pick up the phone to call for help. I was frozen for 7 hours before my dad found me, lying in the worst pain I’d ever felt (and I have an extremely high pain-threshold). I thought I was going to die but didn’t even have the energy to cry about it. This wasn’t the first time my body had gone completely numb apart from feeling pain in my uterus. But I was lucky. It took me 4 years to get a diagnosis, I had access to private healthcare due to generous bank loans on my mother’s credit card, I was living with my parents so rent wasn’t an issue whilst I couldn’t work, and I had unbelievably understanding bosses (thank you, Anna & Erin). In those 7 hours, and the days of excruciating pain afterwards, I had a lot of time to think. Everything hurt but what hurt most was knowing there were millions of women out there suffering in silence; struggling with money because working was impossible for a week out of every month, doctors who misdiagnosed or simply didn’t understand, the loneliness that comes with all of this.

I am here, I am here, I am here. I echoed those words in the hope that somebody would hear me. I wanted to do something but I was useless on my sofa. Do you think that a condition that affected 1 in 10 men wouldn’t be spoken about? Wouldn’t have more funding? More conversations surrounding it? Surely the reproductive organs in a woman’s body should be the most important organ to focus on, considering it’s how the human race continues? HOW is it not focused on? HOW did it take until I was 20 to hear about endometriosis? HOW is it possible that we ignore women’s pain as hysterical? Do I even need to start on the historical implications of hysteria?

I am lucky. My endometriosis was burnt away. I am looked after, and even if it came back, I have access to the NHS. But what about the women who don’t? What about the women who are shrugged off as women who just can’t handle pain very well? I am devastated, confused on how little people care about the damn thing that they were created in? I am going to work towards raising awareness for endometriosis. Starting with this article. Below are the symptoms of endometriosis; pain shouldn’t be normalised. If you’re concerned, insist on being heard.

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Article by Helena Burton-Jones