Endo what now?

If you follow me on twitter you may have seen that earlier in the year I was really struggling with pain.  A few of you know what has been going on and for those of you that do I have to say thank you, from the bottom of my heart, for your support. Whether that be in a shoulder to cry on, a hand to squeeze, a lift to the hospital or just a message to check in, it has been greatly appreciated.

I have been admitted to hospital three times this year.  And between those times I have spent more time in A&E and my GP surgery than I care to remember, and this isn’t the first year.  I have been back & forth to the Dr with unexplained lower abdominal pain for at LEAST 7 years; probably more.

There have been tears, moments that I thought I would pass out (mainly in supermarkets, which is fun), oh and feeling so nauseated that even plain water made me want to vomit.  I sit in work clutching a heated unicorn to my belly just to get a little bit of relief.

Every single time I saw a professional I was told something different.  “Oh its just a bit of IBS”, “oh it’s just period pain” “could it be your appendix?” (no, that went aged 10 thanks!) “hmmm it’s probably a cyst”, “it’s definitely PCOS” (again, nope, you have to have other symptoms for that Dr).

My pain was NOT taken seriously.  I have been left feeling like a child who was being told off by those very people who are meant to be helping me.  I actually asked my friend to never take me back to the hospital as I didn’t want to see a certain Dr again as he made me feel SO bad, and this was AFTER my diagnosis! I would rather drive the extra few miles to another hospital or wait to avoid A&E in order to avoid this guy!

My pains are 99% certainly endometriosis; a condition, for those of you who don’t know, where endometrial cells (those that line the womb) grow in places they are REALLY not meant to, usually the pelvis, but there have been known cases of endo all over the body! And endo SUCKS. The symptoms can be horrible, it can cause infertility, sex can be painful (how shit is that!) and you all know about the pain that comes with it.

The reason that I am not saying its 100% is because unless they open me up and physically SEE endo cells they will never know for sure. And endo can HIDE! It can also cause ALL of the pain and only be a really small amount .

I have seen ONE Dr this year who took me seriously, listened to me, experimented with hormones and said “yep, there’s no other explanation. This is almost certainly endo…what do YOU want to do next?” I cried in that appointment. I have cried in most of my appointments to be fair but these were different tears. I cried tears of relief.  Someone had finally listened and not tried to tell me I didn’t know what was going on inside my own body. I chose to go down the hormone treatment route as that has worked for me in the past. Only time will tell how well this has worked, I may still need surgery, who knows! But currently…all seems ok!

But why am I making such a fuss? Well… read on.

There has recently been an article in the Independent that suggested period pain was of the same level of pain as a heart attack.
Now this headline was catchy but the more we read into it the more it became apparent that this didn’t mean all that much.  What WAS interesting was the idea that women have to spend 16 more minutes with a Dr than a man before the same pain is taken seriously. WTF?!

On 6th September 2017 the National Institute of Clinical Excellence (NICE) released guidelines for GP’s that basically say “take our pain seriously” and “think endo” (I mean, that’s not ACTUALLY what it says but, pretty much!)if you want to read it you can do so here.  But I think (and so do a lot of other endo sufferers) that there shouldn’t NEED to be a document that instructs Dr’s to listen to us!  Why is it that if a man has unexplained pain a Dr will listen and give advice but if it is a woman we are USUALLY fobbed off?  I KNOW when something is wrong in my body, I KNOW what IBS feels like (blergh!) and I KNOW the difference between IBS and the other pains I get. And I know other women in the same boat.

The more people talk about this illness the less of a taboo “women’s issues” become and hopefully the more serious we will be taken by Dr’s.  So let’s all start talking more.

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2 thoughts on “Endo what now?

  1. Alexia says:

    I remember you suffering at NH and having found out about endo over the last couple of years it doesn’t surprise me to hear that’s what the problem is. Glad you’re getting close to a diagnosis and that treatment seems to be working.

    Like

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