Advice Please

[nikogirl18]

Hello all!

I was diagnosed with stage 2 endo in November and had excision surgery which was successful - Mirena fitted during surgery. All seemed to be going will until about a month ago when bowel symptoms return, followed by lots of pelvic pain on my left side (my left side was mostly affected by the endo in the first place.

I was told I had endo on my bladder, ovary and my notes suggest uterosacral (although I don’t know what that means) so not sure if the bowel symptoms are related or not but I get a lot of internal pain and fresh bleeding when opening my bowels.

Anyway - my GP sent me to hospital yesterday for a scan and tests due to how much pain I was in, and in particular to look at my left ovary for cysts or endometrioma. They couldn’t see my left ovary on the ultrasound. Is that something where maybe just how it was sitting they didn’t see it, or is it stuck somewhere from endo? They could see my right one fine, but the left one apparently couldn’t be visualised.

I’m so worried this is my endo coming back already, but I’m really only 4/5 months post surgery! Any advice?

it was also noted my cervix was discoloured 😔 I’ve been put on anti biotics for PID but they aren’t sure what’s causing my symptoms, again!

[Endofitall]

Have you or your doctor checked a pregnancy test for you? The return of my symptoms 3 months post op were signs of an ectopic pregnancy (which aren’t always seen on scan, at least easily or in early stages). Not likely with Mirena but still possible and just want to make sure it’s been ruled out for you.

If you’re getting blood when you open your bowels and left sided pain has your doctor looked at investigating for inflammatory bowel disease?

I really hope you get answers and feel better soon

[Endofitall in reply to Endofitall]

also uterosacral ligament is a common area for endometriosis and passes from the sacrum (Lower spine) at the back to your uterus and they wrap around the rectum so commonly cause bowel symptoms. I had the same. I would also just add to my above post the question of was your op done by an endo specialist? Did they identify any endo affecting your bowel? It may be that a colonoscopy would be wise if you keep having bleeding from the bowel.

[nikogirl18 in reply to Endofitall]

Hi! So I’ve had almost every test under the sun 😂 no pregnancy (you also need to have had sex for that and I don’t want my partner any where near me at the moment bless him, been like that since before my surgery), no UTI, no STIs - had endoscopies, sigmoidoscopies and colonoscopies (which always come up negative for and sort of IBD) so I’m really at a loss.

My surgery was done by an endo specialist who I have been in touch with but he was confident nothing was missed and that I didn’t have bowel endo 🤷‍♀️

Confused is an understatement and I just feel at a bit of a loss

[Endofitall in reply to nikogirl18]

I had a lot of benefit from seeing a pelvic floor physio - I had to pay private as they don’t provide hands on pelvic physio in my area. It’s been incredible in resolving the residual left sided pain and bowel symptoms for me. Maybe something to try?

All that inflammation has sat and irritated those pelvic floor muscles for years so they become overly tense/tight and even thicken (the ones on my left near the uterosacral ligaments are actually thicker to feel when my physio examines me). They can cause a lot of pain and a lot of bowel and bladder issues. As well as painful sex.

Maybe something to try?

[nikogirl18 in reply to Endofitall]

My surgeon had mentioned about physio for if I was having pain during intercourse - I might email him to be put in touch with the physio team then! Worth a shot, thank you!