Bladder endometriosis

Hi ive got endometriosis thats grown through the bladder wall and its in a position that is grown over the hole that drains from the kidney. Apparently its quiet rare. Is it as rare as they say?They would have to do partial cystectomy and make another hole and put a stent in.has any one ever had this surgery? And was it a success? And how painfull was it. Also I had a hysterectomy 6 years ago so endometriosis definitely comes back.

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  • Sorry I can't answer your questions but I have severe endo including endo on my bladder which was seen in a diagnostic lap recently and I'm having a treatment op soon (tppe and a hysterectomy). Do you mind me asking which tests they did to discover the extent of your bladder endo? Thanks and good luck with the treatment.x

  • Hi just-me firstly good luck with your treatment I pray when they do your hysterectomy it resolves your problem. I had a severe pain in my pelvis constantly and when I went to bathroom I wanted to climb walls felt like I was peeing razor blades and also having had a hysterectomy I wasnt sure were blood was coming from. A laparoscopy was done and they didnt find anything apart from cysts on ovaries..eventually I was sent to urologist.where they did ct scans but nothing showed up. A cystoscopy was performed and as he went in there was noduals all inside my bladder. He did biopsies and then sent me for a MRI.they eventually saw it all on the Mri. Biopsy result confirmed endometriosis in muscle of bladder walls and all the nodules. Hope this helps you. Xx

  • Hi Pugy,

    Sorry to hear this - yes it is quite rare, I have also been there and sympathise with you. It is complex surgery. I would be happy to chat with you about it if you like? Do send me a message if you want to chat - it's a long story to write about unfortunately! Good luck and take care x

  • Hi I have recently had stents put in for this reason I also got told it was rare. I am ok regarding that now you can't feel the stents after a day or two. I have also had a hysterectomy and still having issues and am currently waiting for another op. They found out my tube was blocked as I went into a&e in agony and they did a ct scan which showed that my right kidney wasn't draining and that it was all distended etc so was rushed into theatre but it too late my kidney is now damaged so have another person to c at hospital now. The stents are successful the only thing you have to be careful with is urine infections as if they travel the stent can make it worse so if u develop temp etc n it is urine /kidney infection be prepared to be hospitalised as it usually requires treatment with iv antibiotics. If i can help in any way at all feel free to message me and good luck with it hope it all goes smoothly.

  • Hi pugy! I'm currently 10 days post op...I had partial cystectomy. They removed a nodule of endo the size of a dessert spoon that was sitting in between bladder and uterus. It had also invaded through my bladder wall. It was combined gynae and urology surgery and both consultants were pleased with the way it all went.

    I'm 26 and wanting a family so the surgery was essential as I was unable to fall pregnant with it there. I was terrified... as I was told hysterectomy was a possibility if things went wrong! I'm pleased to say that I'm feeling good. The surgery was done via laparotomy, so I have a c section style scar, which is tender but not painful. The worse thing is the catheter. Because the bladder was opened, endo removed and stitched back up they need to ensure that the bladder does not stretch so a catheter is necessary for 10-14 days. Mine will be out on wed all being well.

    So far I have no regrets....this had to be done. I consider myself lucky that apart for 2 tiny spots on my pelvis (that we're lasered also) I'm free of endo, for a time anyway!

    And yes this type of bladder infilrating endo is rare. In 15 years my consultants had seen 4 cases like mine, I was the 5th! All patients had a partial cystectomy, and were a success...fingers crossed mine is too. My advice would be to find a surgeon (if you haven't already) that has operated on this type of endo before. Good luck with everything. Xxx

  • Thank you for your post, it was very helpful. I've recently had a large mass of endo removed from my bladder and was also told it's rare. I'm awaiting my lap, but am TERRIFIED by the thought of a catheter for the length of time you've had it - you poor thing! Did they mention to you about the implications of having a partial cystectomy on your chances of conceiving?

    Thank you x

  • Hi pugy! I'm currently 10 days post op...I had partial cystectomy. They removed a nodule of endo the size of a dessert spoon that was sitting in between bladder and uterus. It had also invaded through my bladder wall. It was combined gynae and urology surgery and both consultants were pleased with the way it all went.

    I'm 26 and wanting a family so the surgery was essential as I was unable to fall pregnant with it there. I was terrified... as I was told hysterectomy was a possibility if things went wrong! I'm pleased to say that I'm feeling good. The surgery was done via laparotomy, so I have a c section style scar, which is tender but not painful. The worse thing is the catheter. Because the bladder was opened, endo removed and stitched back up they need to ensure that the bladder does not stretch so a catheter is necessary for 10-14 days. Mine will be out on wed all being well.

    So far I have no regrets....this had to be done. I consider myself lucky that apart for 2 tiny spots on my pelvis (that we're lasered also) I'm free of endo, for a time anyway!

    And yes this type of bladder infilrating endo is rare. In 15 years my consultants had seen 4 cases like mine, I was the 5th! All patients had a partial cystectomy, and were a success...fingers crossed mine is too. My advice would be to find a surgeon (if you haven't already) that has operated on this type of endo before. Good luck with everything. Xxx

  • I didn't have exactly the same issue but I had an Endometriosis mass that was seen on an ultrasound between my uterus and bladder. It was causing a lot of lower abdominal pains. My gynecologist referred me to a gynecologist oncologist for the surgery since he was highly experienced and one of best surgeons in Maryland. He performed the surgery using the Davinchi Robot but also had to go in through my bladder to carefully remove the Endometeriosis and stents were used. The surgery wasn't bad at all, the worst part was having a catheter for 2 weeks.

  • Hi, all your comments are very useful! I've recently had a laparoscopy which has confirmed a mass in my bladder is endometriosis. Neither the urologist or gynaecologist seem To think it needs treating or removing but they've never come across it in this location before. From your experiences, if you were told pros and cons of treating bladder endo, please can you share with me? Thanks!!

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