Is it endometriosis : Hi, I'm new to this... - Endometriosis UK

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Is it endometriosis

Endo15Hell profile image
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Hi, I'm new to this. Never posted but desperate :( At 14 I started my periods, having 3 days a month of school with debilitating pain (I'd be sick, go dizzy, get chronic IBS D-type for the first 2 days). They tried me on a bunch of painkillers including codeine (and recently dihydrocodeine) and by 15 I was on Ovranette, then Dianette when my skin went crazy and then Yasmin when my moods declined. On every pill I had lighter periods, hardly any clotting and less pain - if any. 2 years ago, at 23, they found ectropions in my cervix (biggest like a 10p piece) and I came off the pill as this may help them improve (so I was told). Now the pain is back, I get sick, dizzy and sweat - painkillers don't work and if they do it's because they dope me up to much to function. My periods are terribly heavy and I lose clots. My moods are shocking and I feel exhausted and depressed constantly - all motivation has gone. I struggle to sleep solid and start with period like pain before I'm even on. I get IBS-D type almost every morning and I'm routinely taking time off work (on 2 occasions I looked that bad management sent me home - I go pale but am not anemic). They think I have Endo and I'm awaiting a specialist op and potential laparoscopy. The reason for my post is my swabs and ultrasound have showed up nothing - I still have ectropions mind you, but they didn't bleed on my last check. Intercourse is not painful (I read it is with endo?) and my periods aren't totally regular but they aren't far off. I'm dubious about putting myself through a lap if there's a strong chance it isn't endo as it means more time off work - but if it isn't that, then why am I in so much pain... Please help.

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Endo15Hell
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Linley profile image
Linley

Hello

Do understand what you are going through-in my case my periods were so heavy with clots that blood seeped through and stained my clothes very embarrassing when at work and then half way through the 5 days IBS D ugh! I believe your anxiety may be making things worse but all I can say is wait for the Laparoscopy because that is the only definite test to see what is going on down there. If is Endo there is help out there (I joined Endometriosis UK). Treatments have come along way since my days. Wish you well and let us know how you get on x

sal-lew profile image
sal-lew

Hiya. Sorry you're going through this. I was diagnosed with endo yesterday and am currently at home with a very sore post-laparoscopy tummy!

I was misdiagnosed with IBS and a trapped nerve previously. Anxiety seemed to make my pain worse, so please try not to panic.

I didn't really have pain during intercourse either, it could get a little uncomfortable, but not painful. However I did have awful pain very regularly for no reason, was uncomfortable when opening my bowels and the pain during my periods was horrific. I say was - I'll have to wait and see how the next one is!! I had a small amount of endo behind my uterus but he said it was in the place that could probably cause the most pain.

As for your questions...all I'd say is, have the laparoscopy. I had 2 ultrasounds and nothing showed. Even if you don't have endo, there's a very high chance they'll see what's wrong and be able to help. Good luck with it. There is a light at the end of the tunnel!

Endo15Hell profile image
Endo15Hell in reply to sal-lew

Hoping they don't make me have another ultrasound - I've already had every other test. I guess I best push for the lap. I hope it's not too long a wait, I've had enough of tablets! I'm surprised I don't rattle haha. Thank you. I just wasn't sure if it could be endo with no pain during sex, so I was baffled at the suggestion... But if you didn't either, maybe they're onto something.

sal-lew profile image
sal-lew in reply to Endo15Hell

Yeah I didn't really have pain just a minor bit of discomfort but so rarely that I didn't really notice. I think the lap is the way forward - my GP told me to push for it and I'm so glad I did. Hope it all works out and you get some answers soon.

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