I’m seeking advice from anyone who has had to have a bowel resection with a total hysterectomy. I’m 48yo and have endo, adeno and fibroids. My endo is stage 4 with my bowel and right ovary stuck to my womb, bits of recto-vaginal area also stuck together. I have surgery planned in Feb/Mar to remove a section of bowel, then do the total hysterectomy and I’ll be left with a temporary stoma which will be reattached 3-6 months after the first op. I’d be keen to hear from anyone who may have had a similar procedure - what was recovery like? How long before having the bowel reattached? Did it work and was the endo completely removed?
Thanks 🙏🏽
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Drakesie
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I’ve had Endo do 20 years. Had total hysterectomy and colostomy bag fitted in October last year. Recovery is slow and long. Bowel and ovaries were stuck and I had cysts on my ovaries that were also stuck. Surgery was long and complicated and at times life threatening. Mine was not known about before surgery so became a medical emergency I went down for surgery and didn’t get back to ward till 9 hrs later. As they are aware of your situation it should be much more straightforward. I just went back to m volunteering this week (teaching reading to 6 yr olds) and I was totally exhausted after two hrs! I was also on a morphine pump post surgery had many drains in my abdomen and a catheter. Best of luck hope all goes well
I’m also waiting for bowel resection but as I had sepsis after my first lap I was told by my consultant he can’t do a hysterectomy at the same time as would be too many places to heal also he needs to unfreeze all the fibrous addehisons he did say that with bowel resection the bowel could leak and that’s all another reason he won’t do both for me at the same time. I would imagine as it’s a longer operation I would say more time of work than three weeks for the excision lap as the bowel is more delicate xx
I had a hysterectomy in October last year after 20 years of gynae visits! Stage 4 Endo, cysts, adhesions, scar tissue, miscarriages, ectopic pregnancy, you name it this awful disease sent it my way. October’s hysterectomy decided to become a medical emergency as bowel was stuck to womb. Bowel repaired, colostomy fitted. Awaiting appointments to have test to see if bowel has healed, then I will be put on list for reversal. Found out yesterday no cancer detected from samples sent to lab. They didn’t know bowel was stuck prior to surgery. They only did the surgery as I had been bleeding for 7 months non stop. Best of luck with your surgery.
Thanks so much for coming back to me. Your surgery sounds very similar to my plan, my only bonus being that they at least already know exactly what they are facing. I’ve been really lucky as I’ve spent the last year having tons of investigative procedures in readiness for the big op. Do you mind me asking, how’s life been living with the bag? Is it easy to manage?
At first because of the shock I didn’t want anything to do with the bag. Hospital said that wasn’t surprising really, they were just as shocked on the ward. It took the best part of a week before I’d even look at it let alone change it. Then I had a fab nurse who got all the medical stuff out to change it, knelt at my feet and folded her arms and said “ There you go, pick it up” at which I burst into tears. She then said “ Right, now we’ve got that done, let’s get on with this” From then on with help ( I’m disabled aswell) I do the changes all the time. The “gremlin” as I call it will go sometime this year after some tests to check healing inside then go on the waiting list for reversal. It’s traumatic, and it hurts LOTS at first ( I had a morphine pump) don’t expect to be up and around afterward either, I didn’t move for 4 days. Then the dreaded physio turned up to get me up and walking. Hint, if you know what time they’re coming, ask for pain relief top up. Good luck anything else just drop me a line.
I have exactly the same but they won't touch it. I've seen 2 specialists and they both say that they'd rather I went through menopause as surgery is complicated and dangerous. I could end up with stoma bag for life. I'm not in any pain and they think it's been like this for 20 years. I'm on zoladex at the moment. I'm 50.
My symptoms are so bad from the Endo, adeno and fibroids that the hysterectomy is a must and after further investigations confirmed the extent of the bowel infiltration, they want to do the resection to minimise any further damage being done. I’m also going private which I think helps…when I was being seen by the NHS it was a nightmare getting any real help.
I didn't realise it has infiltrated your bowel. I have multiple fibroids and adenomyosis too and I'm hemorrhaging all the time. I'm on zokadex now with the hope that this will shrink everything and turn my ovaries off. I would go private if you can. The NHS is on its knees. Good luck x whereabouts in the country are you? Xx
I’m on Zoladex too - have been for 7 years. But this year I feel like it’s stopped working, I’m not having periods but I have bouts of extreme pain and really heavy bleeding. I just want to come off of it now. Btw, make sure you’re having bone density scans if you’re on Zoladex. My gynae in London never flagged it as a potential risk but once I started being seen by one here in Dublin they were really concerned.
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