I am 6 and 7 weeks post surgery, stage 4+ endo, nodules on bowel, bladder and kidney all successfully removed (although bowel was pretty mangled up and the rectum removed, unfortunately the join leaked internally and am now with a temp stoma bag - but that's another story!).
My bladder will not work and I have now been ISC'ing for 4 weeks. I am not making even the smallest progress since leaving hospital. I have no sensation of 'needing to go', there is the smallest relief when I drain the bladder and I don't know enough about nerve ending recovery/nerve damage after surgery. Currently waiting on physiotherapy appointment, also currently going slowly mad self diagnosing with Google! Anyone been through this and out the other side? Good and Bad experiences? TIA, Jx
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Joclynwithnoe
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Thank you for your reply, the consultant is suggesting physio for pelvic floor (they think the nerve endings haven’t healed) but I am not so sure as there is zero progression and I don’t know enough about bladders.
To answer your question, I had a lap last year and when they went in they discovered the endo was so bad they couldn’t do anything apart from see what was there - hence finding the nodules. I also had a CT scan before this lap so they had a bit of an idea where the main masses were. I then went on zoladex for 9 months and had a dual op with a bowel surgeon and the gynae team.
Hi Joclyn. Sorry to hear about your story and suffering. I had endo on my bladder I'm pretty similar post lap to you. I was struggling with retention before diagnosis and was ISC for a while. I now have a suprapubic catheter (through abdomen) they are hoping now post op that the bladder can relax and nerves can heal. They have said it can take time everyone is different. I'm doing pelvic floor physio and have been passing urine normally at times (yay!) Im waiting to have video urodynamics (they fill your bladder and watch you pee under x-ray) and if no improvement I'm also being considered to have sacral nerve stimulator put in my back then the catheter can come out. So there is lots they can do. Unfortunately it can take time but I've improved loads post op so hope you do too.
Thank you so much Chillier! That’s really made me feel much better. The docs keep avoiding my questions about what plan b,c,d etc is so it’s great to hear that there are options! So glad to hear you have improved loads post op, my worry levels have dropped now! Jx
They were the same with me. They are very much " just keep trying this and give it time " Ive found. Have you got support for both your stoma and catheters? I've found coloplast and bladder and bowel really helpful to me. They get all your supplies and extra bits and bobs too to help with it all. Best wishes. X
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