The one where I get angry about endometriosis research…

*A Pre-warning, that this blog post contains details that may be considered as ‘TMI’ or ‘oversharing’. If menstruation makes you uncomfortable…don’t read on!*

I don’t talk about this on my blog much anymore, mostly because until very recently this illness that I unofficially got diagnosed with at 22 has not affected my life as much as it once did, thanks to the wonderful NHS, the availability of a contraceptive treatment that also works to control my symptoms in the form of injections into my butt cheek/hip area every 12 weeks. But the other week, this article popped up on my twitter feed, and I felt just a tad enraged about it.
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Why did it make me angry you might ask? Well. First of all the fact that hardly any research money goes into endometriosis. I’m one of the lucky ones. At 22 my life was miserable. I ended up in A&E more than once because of the horrific pain I was in for about 1-2 weeks of every month. I never took myself to A&E…it was usually a friend, or one time a doctor who was driving past when I was collapsed on the pavement dizzy and in pain. I imagine this is because watching their friend wretch (and then start panicking because she has a phobia about being and seeing people be sick) because they are in so much pain while also passing out because they are in so much pain (sometimes hitting their head off bathroom furniture in the process) was a little bit scary to watch. Especially when you are a young adult and not entirely sure what to do because all of a sudden your parents aren’t there to call on. My friends made me go to GPs multiple times and watched as they came up with the most ridiculous answers to the problems I was facing.

Part of the issue was that doctors didn’t know about endometriosis, how to diagnose it and how to properly treat it. Add the fact that at 18 I’d had quite a radical change in my religious beliefs and had chosen to not engage in a particular activity ever again unless I decided to marry someone. Most doctors I met didn’t see the point in checking for a diagnosis or investigating further unless I was at a point of deciding to start a family.

There was no support whatsoever. It was just let’s keep trying every medication we can think of to deal with your symptoms and hope you don’t find out your totally infertile later.

There is little research into treatments, what causes it or cures.

And oh what a shame for these poor men! What about how it effects OUR lives? Or are we still under this weird assumption that women don’t like doing that activity (I’m not a prude, if we were in person I’d say the word, but know if I type it all sorts of issues are created in terms of search engines, spam and people not being able to access this blog).

There is so little funding for women’s health research, so why is THAT a priority?

And then the photo chosen.

How is THAT representative of a woman suffering from endometriosis?

First of all…one hot water bottle ain’t going to do it. I would have them on my front, my back even between my legs because the pain was basically from the inside out and down (if you catch my drift).

Second of all…I would not be that relaxed. If you had a picture of me in the foetal position lying on the floor screaming and crying…sure. Perhaps holding onto a toilet bowl. Basically writhing in pain trying to find anything that makes the pain bearable, and praying to anyone to be able to like…stand, sit or whatever.

Third of all…I would not be lying there in a white vest and pants. Dark clothes, anything comfy and tatty because chances are it’s going to have to be soaked in warm water and be treated with any remedy I’ve heard of that removes blood from clothing before I’m able to put it in a washing machine if I have a chance of being able to wear it again. I might even be wearing two pairs of pants (something my friend used to do – both pairs with a sanitary pad that was meant for ‘night’ use). Even then we could still wake up soaked with blood stained pyjamas and bed sheets…so we would sleep on top of towels.

Fourth of all…I’m going to be a lot more gross and sweaty. Because all those heat packs to try and deal with the pain are making me way too hot and I’m probably wearing a cold wet flannel on my head and arms to compensate….not to mention the pills I’ll be surrounded by and taking maximum doses of every hour I’m safely allowed to.

That’s the reality.

And as I said, I’m one of the lucky ones. At 25 they put me on injections which stopped my menstrual cycle and for the most part that has worked. I put on 2 stone in weight (and thankfully lost 1/2 stone of that eventually) and my hair started falling out and going grey but it was a small price to pay for no longer being in pain and spending a fortune on tampons and sanitary towels which I needed 40% of the month at times. Yes, in the last few months it would seem that I’m having a return of some symptoms and now I’m on a new medication to see if that works before they go down a surgical route. But if you go on the Endometriosis UK forum, there are women who had far worse and symptoms 24/7. I could tell you so many stories of doctors who have been clueless and unhelpful…but some of that is not really their fault. It’s because women’s health is not studied or seen as a priority for research and treatment. You can bet your ass if men had to deal with a uterus and ovaries things would be different.

Ok.

Rant over.

(For now).

 

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