No endo found- but extensive bowel adhesi... - Endometriosis UK

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No endo found- but extensive bowel adhesions were?

EllaMes1 profile image
4 Replies

Wondering if anyone else out there has experience of this. I had a laparoscopy on Thursday 1st March because I'd been suffering from pelvic pain, pain during intercourse, bloating etc. Classic endometriosis symptoms, plus I had tenderness upon my pelvic exam. I also suffered from recurrent UTI's. My mother had extensive endometriosis and actually had to have a hysterectomy at age 30 because she had a cyst the size of a melon on her ovary from endo. Because of all this, my consultant said I needed a laparoscopy to see if I had it based on this family history/ all my pain.

Anyway, I had the lap, and the consultant said he didn't find any endo but my bowel was fused to my pelvic wall. He sounded a bit exasperated as this is a clear sign of endo but I didn't actually have any. He said he wasn't sure what caused this to happen- it was extensively fused to the pelvic wall.

I've never had an STI, appendicitis or previous surgery to cause these adhesions. He checked my appendix, it was healthy.

Any ideas?!

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4 Replies
Dee11 profile image
Dee11

I’m in a similar situation - loads of adhesions found, some scar tissue, and organs fusing together but gynae said there was no Endo. Was your gynae an Endo specialist? I’ve heard that it can be missed by general gynaes, or even if they just don’t explore deep enough or in certain areas.

I’m having another lap next week with another consultant to see if mine could’ve been missed or what other causes there could be. Like you, I’ve had no STIs, PID, or previous surgery before my lap x

EllaMes1 profile image
EllaMes1 in reply to Dee11

Thank you for your reply! I don't think he was an endo specialist. He seemed 50% certain I had endo before he did the lap- I haven't had my follow up consultation with him yet so I'm not sure what he'll say there.

Perhaps I should speak to an endo specialist if in my follow up my gynae says the adhesions weren't caused by anything as I know that adhesions with no cause is a very rare occurance.

Good luck with your lap! X

Heloo85 profile image
Heloo85

Endometriosis can spontaneously cure itself, as in permanently disappear forever except the damage its already done doesnt just disappear. Thats one. Two he couldve missed your endo. And 3 adhesive disease can run in families. Some men for unknown reasons can be found to have extensive adhesions for no known reason too. Its hard to say. Only thing you can do now is treat the adhesions that are clearly causing your problems .. Good luck xx

caroljane80 profile image
caroljane80

Hiya sounds a bit like me i have adhesions they blame surgery which somehow is now my fault and one dr said " no more surgeries !! " Im like f.. off in my head only . They seem more painful than endo was and random and somehow hormone related despite hysterectomy with ovary removal im nearly 1.5 years post hyst and its been hell. Still is but i found out lowering my HRT by ridiculous amounts ( to where I get night sweats or just before helped only ) nothing else did. Kinda been stuck on my own with this for years and it's demoralizing when experts who do know better try to bamboozle you saying its too high up to be gyne ( i know now it can be on the bowel bladder etc which are higher up )- naming no names but he did know better .So whats going on ?? I dont know, i only really trust a guy in Birmingham now that didn't rob me and nhs were just too thick to help me or wouldn't ! i did have hysterectomy with them but its made it worse ??? I was quite ok on zolodex but they eve take you off that after 6 months. Was told it will just be the same as the zolodex , i believed, but it wasn't more pain, more severe, more often and less control over it now .

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