If it's not endometriosis then what the h... - Endometriosis UK

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If it's not endometriosis then what the hell is it?

5 Replies

Heyyyyyy

So I've just had my laprocopy to look for endometriosis. They said that they couldn't see anything but that I did have scar tissue and adhesions on my bowel. I haven't spoken to gynaecologist performing the surgery.

I've been suffering from painful periods but the pain is localised. It would either be at the top of my womb or the left or right side. About 10 years ago I used to get the worst period pain, id be sick and faint.

I will usually get periods twice in one month, sometimes the next period can be as soon as 8 days after the last. I also get rectal bleeding.

What the hell is this? Did anyone have a clear laprocopy and go on to find that they still had endometriosis?

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Lcjames83 profile image
Lcjames83

That sounds very confusing. Your symptoms do all sound like endometriosis. I wonder if you can have old scarring from previous endometriosis and it not be active currently but you still have pain from the adhesions? Other things could cause the adhesions like pelvic inflammatory disease. Best thing is to get your specialists opinion- hope you are seeing them soon to get some answers

in reply toLcjames83

Yeah :/ it's really annoying. I haven't really been to.d anything following surgery other than about the scarring, I feel like because they've said I'm fertile then that's that and they aren't going to press further. This pain and frequent periods have called me so much misery :( I don't even know if I can speak to the gyanecologist who did the surgery.

Heloo85 profile image
Heloo85 in reply toLcjames83

I think this is correct. Very little is known about endo abd believe it or not it can disappear and cure itself! Just like cancer can. Some people can have stage 1 and have stage 1 all their life. Others can have stage 1 and it progresses to stage 4 and others can just have stage 4. You may not have endo anymore but are suffering from the damage your endo caused! I do have active severe endo thats currently unresponsive to anything from surgery to Zoladex, but, my symptoms arnt the standard painful periods or 1-2 days a month. They are everyday and looking back have been for years. Been real bad the past 2 years but wasnt brilliant for years before my diagnoses. Endo is a strange disease and it effects people differently!

Patricia2015 profile image
Patricia2015

That sounds as a big disappointment. Poor you!

Was the lap performed by an endo specialist?

Rectal bleeding could be caused by endo but also by inflammatory bowel disease (colitis, Crohn's, etc).

Bleeding twice a month is horrible. I have bleeding throughout the month two. I have also adenomyosis. Did they check you for that?

Keep strong!

in reply toPatricia2015

Yeah it's massively disappointing which I know is an odd thing to be disappointed about but I just want answers :( it was performed by a gynaecologist but as far as I am aware, she isn't an endo specialist.

I should also mention that I get pain during sex. There's only be a handful of times where I've enjoyed sex as it's painful.

The gynaecologist today before the surgery classed it as ovulation bleeding, but I get PMS before the build up and it last five days. It varys between starting anywhere between 8 and 14 days after a period. Last period I had was 8 days after the last one.

No she didn't check for adenomysis either. I think she was mainly checking that everything was in working earlier and I don't think they did the blue test they said they would. It was on the NHS and I want to speak to the gynaecologist who did the surgery but I'm not sure I'll actually be able to?

Sorry for the waffle!

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