Endo in other / unusual places?!

[Kat090181]

Hi ladies

I wondered if any of you have been diagnosed with endometriosis in other areas such as the bowel, bladder etc, but no visible signs on ovaries, uterus?

Can this happen?

Xx

[Lovisa]

Hello, I have stage 4 endo which only affects the bowels, pod and on the uterosacral ligaments. Ovaries etc are completely clear.

[Kat090181 in reply to Lovisa]

Hi thanks for replying. I had a lap in April 16 after years of classic endo symptoms. GP and consultant were very confident that the lap would confirm endo as textbook symptoms. Symptoms are severe very heavy painful and long periods, pelvic/abdo pain, severe right shoulder pain before/ during monthly, severe bowel pain before/during monthly and bowel probs, sharp pain up my bottom, pain during sex/internal exam.

When I woke from the lap the consultant said my ovaries and uterus were clear but they had found severe adhesions in my bowel, around my appendix and this was adhered to my right ovary they separated the adhesions. The consultant said it couldn't be endo causing the adhesions as it wasn't visable on the ovaries or uterus and so had to have a gastro cause. Gastro feels is an end problem. My GP also disagreed with the consultant, and feels they should have biopsied my adhesions etc and checked behind them. The consultant, I have since learned was not an endo specialist, despite the hospital having two! GP wants me to have a second lap. Awaiting appointment back with the gynaecology dept.

Thanks for giving me a bit of hope that there might at least be an answer. Don't get me wrong...i don't WANT endo, but I need answers for my own peace of mind xx

[Lovisa in reply to Kat090181]

It can be easily missed, I'm kinda in the same boat atm, I only had my 4th lap few months ago and he removed endo off my uterosacral ligament but didn't touch my bowels as they're completely tethered to my pelvis but I have the same old bowel pain/bleeds I had years ago where the endo almost penetrated my bowels, so waiting to be seen again. I would definitely get another lap with someone who has some sort of idea about endo, I know it can be missed to the untrained eye.

[Kat090181]

Thanks for the reply. Fingers crossed a second lap shows something x

[Blod1978]

Hello - I had a 4 hour op on Friday for endo treatment - I had it on ovaries as well as bladder and bowel. If I’m honest I’m still feeling pretty ropey - but it’s moee nausea and discomfort than pain. Luckily I had an endo specialist operate this time - the last surgeon wasn’t a specialist - but in total it took about 18 years to diagnose. I guess what I’m saying is keep strong, get the procedure sorted and insist on seeing an endo specialist who will know for sure and can refer you if necessary. Take Care xx

[Sweetyassi]

Hi,

Yes, I had endo everywhere but not on my uterus.

Sweety.

[Kat090181 in reply to Sweetyassi]

Thankyou hun reassuring xx

[Hidden]

Following this post with interest as currently suspected with bowel endo due to cyclical rectal bleeding, but no prior known endo, so who knows what's going on in there! 🤔

[blahblah22]

Lap showed no endo anywhere, only adhesions between bladder and uterus. However confirmed endo inside the bladder so definitely can be the case.

[Kat090181 in reply to blahblah22]

Thank you so much for replying xx