Endo in the bowel - any info?

[EllaB3]

Hey! I have been told I have endo in my bowel, bladder and uterus. Have any of you had endo in the bowel and if so what have your experiences been? I’ve been told I need to see a bowel specialist and I just want to get an idea of what that will entail? Thanks in advance!

[Simo7]

Hi EllaB3, I had endo on my bowel. If it’s just on the outside of the bowel the specialist (who will usually operate with your endo specialist) will shave the bowel to get rid of the endo. If it’s deeper then they may have to do a bowel resection, which is where they cut a little bit away and then re-stitch back together. My symptoms were a sharp stabbing pain in the bowel area whenever I went to the toilet. The pain from that was still excruciating. Luckily I only needed a shave and not a resection. I hope you’re not in agony with it.

Hope this helps a little, good luck with the surgery x

[EllaB3 in reply to Simo7]

Thank you for your response! To be honest I haven’t really noticed any symptoms relating to the bowel which is why I’ve been so shocked when they said it was found there! What you’ve described has really helped me visualise what type of treatment I can expect to receive so thank you! X

[Crazycatladyjones]

Ah bless youhow did they diagnose this? I have suspected bowel endo my journey to statthas only just begun. My GP was pne who suspected it. My bowle movemnets havr gone much looser and I get a really baddd pain on my left side during ovulation and durong period, horrifc bloating I feel like there is a twisted knot on that left side and like I will explode and if I try to poop during period I get the worseee pain up my bottom feels like a big hot pole up there even if the stools are loose its soooo painful still. What type of symptoms did you have? What do u dp to eade symptoms I hope you get sorted soon xxx

[EllaB3 in reply to Crazycatladyjones]

Hey! I had a laparoscopy two weeks ago and the consultant told me they found some on my bowel. I haven’t had a full debrief yet of the ins and outs of exactly what was found but I know they definitely found some there. I haven’t experienced any bowel related symptoms which is leaving me confused as most of my symptoms are bladder and uterus related. I do feel pain in my left side, like how you’ve described, a lot more so than my right side so that might be to do with it? Xx

[Starfish123]

I had worse constipation in the run up to my period. Pain on the left side every night and worse during period. Bleeding from the rectum before period started, plus other symptoms. I was told I was mistaken by my dr and it wasn’t investigated. More than 10 years later I had an operation for possible ovarian cancer, it wasn’t it was endo. I had my Fallopian tubes, cysts and all but a slither of ovaries removed, the slither was left because it was attached to my bowel and taking any more could have meant a colostomy bag.

[Crazycatladyjones in reply to Starfish123]

Gosh its awful isnt such a cruel condition if I havent got endo then god knows what's going on but if it is I dnt know how I am going to put up with this 🙄Do u still have pain ans symptoms following the surgery? What do they suggest to help the symptoms?

[Starfish123 in reply to Crazycatladyjones]

Hi, I have pains from nerves from the surgery but I’m menopausal now so don’t have periods etc now. I still get constipated but take magnesium supplements to help that now.

Yes surgery is definitely recommended, I just wish it happened years ago, at least then I would have been able to get help. I used hot water bottles for pain, 2 at a time, front and back. I also used a camphor and menthol gel from SBC on the skin but this has now been discontinued. Anything to change the sensation helped me cope. I also had cocodamol on prescription and Nurofen, which I took to the maximum for days on end around my periods. I did pass out a few times too.

[EllaB3 in reply to Starfish123]

Wow thank you for sharing your story what a powerful woman you are. I truly hope that you’ve found some relief from what was done to try and fix the issue. Someone else has mentioned pain in their left side which is where I get a lot of my pain. I’m guessing this is linked specifically to the bowel endo? Thank you you’ve been such a great help x

[Vicky2708]

Endo UK have a leaflet on endometriosis and the bowel that may be a useful resource to refer to - endometriosis-uk.org/sites/...

I was diagnosed with severe endo in 2017 and was told my womb and bowel are fused together. I'm currently on the waiting list for surgery to resolve this, although I'm not sure exactly what's being done either.

Good luck x