Endometriosis is a condition that affects 1 in 10 people who are assigned female at birth. Despite that, 54% of people don’t know what it is – rising to 74% of men. We want to help change that.
In the run up to Smutathon 2020 on September 26th, we’ll be sharing weekly ‘Endo Stories’, written by other bloggers, authors, and awesome people we found on Twitter. They’ll tell you about their experiences with endometriosis, and about some of the challenges they’ve faced, from diagnosis to treatment, from sexual pleasure (and pain) to fertility and menstruation.
Today’s story comes from Isabelle Lauren, who writes at isabellelauren.com. As well as sharing her story with you all today, Isabelle will be joining us in September as a featured author for our Smutathon 2020 event – we’re very excited to have her on board! Find her on Twitter at @RomanticIsa and please consider donating to Endometriosis UK to help them help people all over the UK who are struggling with endometriosis.
I’ve had endometriosis since I was 12, but, like most women, I wasn’t diagnosed until 15 years later. Multiple trips to see doctors and gynaecologists resulted in gaslighting (“it’s all just in your head”), shaming (“you just have a very low pain tolerance limit”) or disbelief (“if you were in that much pain, how come you can make it to the appointment?”). Meanwhile, my periods were horrendous and one week out of four my uterus felt like it was out to kill me.
15 years of being told there’s nothing wrong with you while you’re in the worst pain imaginable damages a person. I’m not going to sugar-coat it. It’s been 16 years since my diagnosis. I’ve had one laparoscopy and, at the age of 39, I had my uterus removed. It was the best day of my life. Even better than when I gave birth to my kids. And it’s only since my hysterectomy that I’ve been able to start healing from that damage.
I’ve hated my uterus since my first period, which was so awful, I couldn’t walk from the pain. Each month I came to dread my menstruation, hating my uterus more and more as time went on. I remember vividly, as a sixteen-year-old, wanting to get a hysterectomy. I only held on because I wanted children. But I vowed that if the stupid, useless organ couldn’t give me that, I’d get it ripped out.
I never understood the whole “celebrating womanhood” thing. There was nothing amazing about being a woman, in my opinion. And celebrating menstruation? Forget it! That was even more bizarre to me. My uterus was a hostile enemy I needed to fight each month. As time went on and the endometriosis took firmer hold in my body, the pain became more frequent, even as often as every day. Had I had a diagnosis – and laparoscopy – sooner in my life, I’d have been able to have a better relationship with my body. But such was not the case.
By the time I was diagnosed – by accident after a miscarriage – it was already too late. I hated my body. I hated being a woman and having to endure these crippling pains. It became a bit better after the laparoscopy and the birth of my children, but soon after my second kid was born, the endometriosis came back with a vengeance.
At that point, I couldn’t stand my body to the point that I also didn’t want to have sex. Sex hurt anyhow, so it wasn’t very alluring to me to begin with, but I didn’t even want my husband to see me naked. I went from hating my uterus because of the pain to loathing my body. There was nothing sexy about me (in my opinion, my husband disagreed with me). I could feel the endometriosis spread throughout my body, ruining my life. And, because I had moved countries, I couldn’t see my excellent endometriosis specialist for advice. Trying to get another doctor to believe me – and then treat me – seemed so daunting, I put it off for years.
In the end, I found a specialist endometriosis clinic near me. I psyched myself up and went to see my GP, prepared to fight tooth and nail for a referral. And boy, did I have to fight! In the UK, it’s your right to be referred to the specialist of your choice. And you can request a referral to the endometriosis clinic from your GP. Luckily I knew this, because the GP was not willing to refer me. I got the usual bullshit (“Are you sure you have endometriosis”), but I persisted and in the end, the GP had to refer me.
At the referral clinic, I didn’t beat around the bush. I asked for a hysterectomy. And because I was nearly forty and had two kids, I was granted one. (Which is also bullshit because whether I’m forty or twenty and whether I have kids or not, I should be able to get a hysterectomy, but that’s a whole different discussion.)
Getting a hysterectomy is the best decision I’ve ever made. I came alive after I recovered. I felt at peace with my body, hell, I even started to love it! I wanted sex, all the sex! I started blogging about sex and I explored my sexuality and found out I’m bisexual. I am more energetic, happier and I finally feel that my body belongs to me. Some women experience loss when they have a hysterectomy, but I threw a party. Good riddance! I’ll never miss my stupid uterus, it can burn in hell. I’m more woman now without it than I ever was.
P.S. Fuck everyone who says you need a uterus and ovaries to be a woman. I didn’t become a woman until after my hysterectomy.