Living with Endometriosis.

Published June 25, 2015 by joannabolouri

Women get periods. It’s normal, right? You bleed, you pay your tax on tampons and you get on with it. But what happens when it’s not normal?

For those who don’t know what endometriosis is, here’s a definition.

A condition resulting from the appearance of endometrial tissue outside the womb and causing pelvic pain, especially associated with menstruation.

Anyone who suffers from endo and I suspect there are many of you, will know that this description means fuck all.  This doesn’t come close to describing the actual condition. In my case I’d describe it as –

 A condition where tiny, invisible bastards stab you up the arse repeatedly and during menstruation everywhere below the belly button bursts into flames, resulting in a tsunami style menstrual flow when doing simple things like standing from a seated position, or being alive.

20 years ago they told me it was just my hormones and that the pill would sort me out. It took them a further ten years to offer surgery in which they finally diagnosed me with endo and fibroids and a whole lot of ‘pelvic congestion.’  They zapped it but of course, as long as I still had periods, it was likely to return – which it did. It went away briefly after I had my daughter but a year later I was back to where I started. I’ve had three operations now.

So to give you an insight, here’s what endo is like.

Bleeding.

  • You can wear 3 maxi night-time pads to bed and still wake up like prom night Carrie.
  • You bleed out tampons. Right. The. Fuck. Out.
  • Your mooncup will runneth over.
  • In between your stupid regular period, which can last up to two weeks, you will spot old brown blood and fuck up your underwear.

Pain.

A doctor once described endo as lots of little internal blisters, bursting at the same time, whenever your hormones shout ‘GO!’ and this can happen whether you’re on your period or not.  This description is fairly accurate.

It can range from a dull ache to an acute ‘I cannot get out of bed because my womb is falling out’ pain. Sometimes it feels like a knitting needle has been rammed inside you, either vaginally or anally. Sometimes both. WHAT FUCKING FUN EH?

Oh yeah and a lot of the time sex feels like this:

‘OH YES, OH YES, OH FFSOWWWWWWW STOPTHATANDGETOFFANDNEVERDOTHATAGAIN.

Post sex feels like someone has put their penis inside you, only their penis is a size 13 shoe and that shoe is made of fire and they’ve booted you squarely in the cervix.  The thought of this happening is often enough to make you not want to do it ever again, which sucks because non-hurty sex is lovely.

There is no cure for endometriosis.  I’ve been on every form of hormonal contraception, a nasal spray to mimic menopause, pills to stop my bleeding and none of it works to the point where I feel normal. And I want to feel normal.

I’ve had this for 22 years and I’ve had enough – the next course of action would be a womb ablation or a hysterectomy, which of course means no more kids.  I may be fine with this but there will be women who aren’t happy that the way to end their suffering is to end their fertility, which might have already been ruined by endo in the first place.

So why am I writing this? I’m writing this because I am not unique and there are millions like me.

We should never stop talking about this.

This is not normal.

https://www.endometriosis-uk.org/

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