Question to anyone else who has had colorectal/ rectovaginal endo removed via an MDT. To what extent if any do you think this has alleviated your colorectal / gastrointestinal signs?
Preoperatively I was aware of a rectovaginal nodule and obliterated POD. My symptoms progressively got worse while awaiting the surgery and this occurred daily even in induced menopause. I could not defecate at all without laxido, was often passing blood and got sharp rectal stabbing pains (alongside severe left side pelvic pain, bloating, naseua and a myriad of other endo issues!).
10th of September I have finally had MDT surgery for stage 4 endo and adenomyosis. The rectovaginal nodule was removed a large pararectal nodule was removed ( told to be a hand sized area) left ovary, fallopian tube removed ( large endometeioma and blocked fallopian) and nodule removed from a ureter. Gradually since the pains getting better daily. I stopped opiates the week after op ( managed on paracetemol thereafter but barely needed any the past few days).
However I have struggled to pass stools since (I can defecate but its either diarrhoea or Constipated). I was told initially not to worry unless I develop signs of sepsis ( about 10days ago) by the colorectal surgeon since I am obviously aware it is healing. I will be in contact again with him in the week.
Just wanted to see if anyone can share their experiences of having the op and if it has overall helped any gut signs?? The surgical discussion with consultants always seem to focus more on the surgery reducing pelvic pain. I remember at an endo support meeting someone saying post op they barely had gut issues after! I know every body is different but curious to hear other stories negative or positive.
❤ Sabrina xxx
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Sabrinacolada
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Hey am waiting for my bowel surgery just had my mri and bowel symptoms are awful so I can’t really answer your question I had a lap where they found severe deep infiltrated endo in the bowel frozen pelvis etc had a large endometioma removed. I’m waiting from a letter to tell me when the surgery is. I would just be patient and let your body heal I think though if you really can’t go to the toilet you need to speak to them as that sounds like could be a bowel blockage I would get checked out if your worried x
Thanks for your reply. Hope you get a surgical date soon. Its awful isn't it, trying to plan everything around gut issues on top of the endo pain itself 😕 hope you are finding ways to get some relief.
Yes I am seeing how I get on but will message the surgeon tomorrow ( I have been passing but either severe diarrhoea or constipation). It's still quite early days in terms of post op but the colorectal surgeon spoke to me so soon after the anaesthetic I'd like some further clarity xx
Hun I have these symptoms on regular basis and I struggle with out having to take either anti diarrhea medication and anti sickness as get so nauseous. But as you said still early days since your surgery and I think if you have had these symptoms for years I think the bowel will take time to really heal xx sending get well ❤️🩹 hugs x
It’s VERY dangerous to not go to the restroom after a procedure like this. I had a similar situation and they placed me on stool softeners for life. They also told me if there ever was a three day of passing no stools to go in the hospital as it’s NOT good.
Thanks for your reply. Sorry should of clarified I can pass but its diarrhoea or constipation. I had contacted the colorectal surgeon once post op, but I will contact him again tommorow just to discuss . I have laxido at home so have been taking it post op ( I had been on it daily for 12 months leading up to the op anyway). Sorry to hear you are on laxatives for life xx
Hey I'm 3 weeks post diagnostic laproscopy op. I just noticed that u mentioned nodules as I've been struggling to find people with the same diagnosis as me. I apparently have to see a speashilaist as all couldn't be removed. I'm currently suffering with my bowels and gastrointestinal problems still. Apparently I have big spots of endometriosis In my pouch of douglas. Also, endo on both sides of my uterosacral ligaments and I had 3 nodules. One of which was taken out to be tested, one treated and also one near my rectum.... Honestly I don't even know how bad it is but I'm thinking the worse as I'm waiting to see the speashialist and all couldn't be removed so do u think I may have colorectal endo to? X
Was that the diagnostic lap? It does sound suspicious for bowel/ colorectal since they have said endo lesions on the pouch of douglas ( between rectum and womb) and a nodule near the rectum. Did they say when the biopsy results come back? Is there any follow up to discuss your lap where you can discuss?
I remember my first lap being told vaguely what happened soon after recovery and having many questions. I ended up contacting the medical secretary of the surgeon to get more details. If NHS it's worth going via PALS ( patient liaison service) to explain your situation and need for more clarity. I requested my lap surgical report if you havent got one already. Also ask how long the wait is for an endo specialist ( about 6 months in this area)
The specialist they have mentioned I assume is an endometresiosis specialist. Because of the cul de sac and rectum lesions - general gynae solely should not do any surgery on the colon etc as it is highly specialist. The same as my diagnostic lap once I saw the endo specialist I was under a multidisciplinary team and was referred to a colorectal surgeon ( and urogenital as had lesions on ureter). The colorectal surgeon said I needed further surgery and tried to help with symptoms in the mean time.
One thing I researched is the rectovaginal area can be hard to fully visualise via lap thus I also had an mri. But my case is a bit different the initial gynae had said I didn't have rectovaginal but I had all the signs so I paid for an mri which found the nodule.
Hope you are recovering well and get some answers soon. Feel free to ask any more questions. Literally sounds like me last July after my lap so I can really sympathise.
Yh it was just diagnostic but they did try and take out what they could. They told me 2-3 weeks for results but I'm still waiting. I think they said I will see the speashialist in 6 weeks... which I'm thinking it will be more like 6 months lol... I waited a year for laproscopy to be done and before that 9 months just to see the gynaecologist. An yh I got a letter explaining what was found and done and that I've been referred to a speashialist but, it never said which one. Also it mentioned awaiting biopsy results. I'm just so fed up as I feel literally the same. Even worser to be honest. I ended up on antibiotics 4 days after lapro because of a uti and then felt fine for a week then back on antibiotics as my wee was still burning. I'm actually going for a urgent kidney ultrasound today as in the last 9 months I've had over 7 UTI infections. I don't know if this is all related with the endometriosis. I just know I'm gonna have to go through all this again which I'm not looking forwards to. Thanks for the help x
Aw bless you. Its alot to take in especially when in such pain/ symptoms unmanaged. The wait makes it so much more scary, the anxiety of not knowing what's going on.
Good luck with your scan today I am glad they are investigating the urinary signs let me know how you get on. After my diagnostic last year I also got a uti assumed from the urinary catheter. But prior and ongoing the same as you I had suspect uti signs on and off. When I saw the endo specialist he saw on gynaes lap pictures endo on the ureters ( tube from kidney to bladder). He says it is often mistaken for uti. In my case there was a superficial nodule ( now removed) it was on top of the tube/ ureter and was not blocking it. If it invades or is deep can block the urine flow and block the flow from the kidney. So it's good they are looking at the kidney and ruling out other issues.
I hope it is 6 weeks touch wood. You can ask PALS if needed how long the expected endo specialist wait time is. Express how debilitating the symptoms are.
My gp tried to expedite so I became marked as urgent ( sadly in this area told 6 months wait but may spare a few weeks off that so I ended up going private as was on so much pain). The endo specialist can review your symptoms ( write all of them down and any worsening at menses ovulation) and the lap images other test results to discuss a plan.
I think ultimately I asked - where the colorectal lesions enough to cause the symptoms ( any further imaging needed- I also had colonoscopy due to blood in my stools on the 2 week pathway to ensure no other issues but remember endo can be on top of the bowel and not invaded thus this alone wont rule out bowel endo). Could the urogenital signs be ureter or bladder endo). What management do they suggest ( I initially had induced menopause and then dienogest to try and reduce pelvic pain and stop continuos bleeding). Will multidisciplinary team be involved I.e. refer me to colorectal / urogenital. And unfortunately will further MDT surgery be the next step ( pending what they have found and risk v benefit). Highly advise take someone with you for support and a notebook.
Yh it's the not knowing that's the worse. Thanks for the good luck to. There wasn't no mention of any endo on my bladder but, who knows I wasn't expecting them to find what they did lol.... hopefully u get some relief soon to. I was gonna say did u get horrendous back pain after your laproscopy. I've had back pain for about 7 months anyway but since my surgery it seems to be even more severe. Also I still have my dissolvable stitches and it's been 3 weeks and 3 days... I dunno if that's normal or not and my belly one seems like it's got a new design that feels tight lol... xx
Yes I do have back pain too which was worse the first 2 weeks post op. Having pain made my posture poor, very hunched- probably the same as you painful to stand/ sit straight . I remember a physio saying before the pain from endo, weakened abdominal muscle putting more strain on the back. Also have an early spinal disc lesion. Had some sciatic signs on and off prior ( ended up having a spinal mri). Told by a nuero pelvic surgeon endo can actually be a couple cm near a nerve not directly on it and still cause nerve signs. So a few factors for me! Again write this symptom down to raise with them too.
Yes hun that is likely normal. I work as a vet ( used to do surgery myself but have changed ro remote work earlier this year) and know absorbable suture material ( normally use monocril) can take numerous weeks to a few months to fully resorb. You can sometimes still see the end of the suture tied/ knots dependant what tie pattern was used . As long as its not painful, inflammed or infected or open it's fine but they can check at the post op (any issues see your GP, I was unlucky and had an incision infection with pus about 6 days post op) . Yes the umbilical/ belly one I have feels tighter too- it's been under alot of tension from how much I have bloated etc.
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