I in 10 women suffer from the chronic auto-immune condition known as endometriosis.
I’m one of those ten – a condition I unfortunately inherited from my mother.
If you don’t know what endometriosis is, it is “[a] disease in which tissue similar to the lining inside the uterus … [is] found outside the uterus, where it induces a chronic inflammatory reaction that may result in scar tissue” (according to Endometriosis.org, 2019).
Basically, if the above makes very little sense to you, endometriosis is painful as all fuck. By the time I was fifteen, my periods were incredibly irregular, excessively heavy, and came twice a month. Each time it came, I’d vomit endlessly until I would inevitably pass out from the pain.
I’m sure I’ve mentioned somewhere before how passing out became so common I’d use disabled toilets because it’d be less obvious whenever I did pass out. (A few times I passed out in non-disabled toilets and it caused a big, melodramatic and rather unfortunately embarrassing circus – something that will actually become a discussion for The Ex Files.)
After years of this, when I was barely 16, I had my first surgery – an attempt to remove the cysts and scarring that had been building up.
I needed a second one just after my 19th birthday.
I’ve been on the pill since my first surgery and I’ve had rounds and rounds of tests. I’m no longer allowed to have more than 2-3 periods a year – which is not much different from before.
Before I was allowed 3-4 periods per year.
But things have gotten worse again, and an attempt to avoid another surgery and potential infertility, so now I’m no longer allowed more than 2 or 3, and as a report that indicated from a specialist back in 2015 that my (and this is a direct quote) “the uterus does not appear to move freely in the pelvis, possibly related to adhesion formation. [Assessment] Raising concerns for background changes of adhesions, [relating] to changes of endometriosis and correlation with clinical findings”; except I was never properly given this report, because my lovely friends, who my darling bridesmaid wanted to be neutral with as everyone insisted that “it was mean on both sides”, no longer believed me when I came to see her. Which means that I never received the report that indicated that I might need surgery to help with my fertility, you know, if I ever wanted kids, back in 2015.
In fact, it’s a report both Scott and I saw for the first time recently.
It’s also something that my husband’s parents won’t talk to me, or even him, because of, which if you haven’t got the message about how fucking words matter and why you need to own your shit and accept responsibility, maybe you’ll start getting what the reality of that suckerpunch must feel like it.
But it wouldn’t matter what it said, because the endometrial lining has grown since then and now, because I was told I was fine, and not that my ultrasound showed that my uterus was sticking to things, therefore meaning surgery might be necessary.
That could’ve been real nice info to know.
I wonder what would happen now. Would my in-laws suddenly hate the people responsible for my infertility? Would my in-laws be horrified to learn that the people that have come to them, betraying my husband, are the reason why I can’t have children?
Somehow, I doubt it would matter, because they always made it clear they didn’t give a shit how I felt, and that I was nothing more than an object that had one purpose.
Regardless, none of the birth control options I’ve used over the years have ever really helped to stop the pain. It’s like my body knows when “that time of month” is meant to come, and even though – thanks to the miracles of a rather expensive pill – it doesn’t. (Or, for a period of time, the depo.) However, my body still likes to remind me that my stomach (or uterus) would like to self-implode.
And when that time of month does come?
It’s like hell on earth. If I have to work, I have to overdose on strong pain medication to just be able to walk (don’t worry – I dated a pharmacist and my mum is a nursing unit manager with a heavy background in pharmaceuticals. I don’t do anything dangerous or stupid, and I know the exact limits of what I can push and when I can’t).
If I don’t have to work, I still do the same, but I curl up into a ball with heat packs and hope to god I pass out (which, fortunately, still often happens).
Sometimes the pain is so bad that pain medication like Tramadol doesn’t work.
So what’s my point?
My point isn’t to get sympathy, it’s to raise awareness. If you have a daughter, friend, sister, relative or partner that’s suffering from that much pain, something is not right.
I was fortunate. Because of my mother’s previous experiences, I got help early. With a lot of luck, I’ve managed to avoid a lot of pain (which is saying something) and, if it wasn’t for some lovely friends, I’d probably be more fertile.
However, not all women are so lucky. Not all women are listened to. You may genuinely need to fight to get your doctor to listen to you – I know more friends than I can count who weren’t diagnosed with endometriosis until their mid to late twenties. And my doctor didn’t suspect endometriosis when I went in for surgery – the only reason he did, in the end, was because the pain was so bad that they thought my appendix was going to burst (which it actually would, a few years later, and holy mother of god that pain was like no other. Even morphine barely dented that).
Endometriosis can be dangerous to your health and body if left unchecked.
It’s a silent disease from which there is no cure.
We need to spread the word – because no one should not have to go through this alone.