Has anyone had bladder endometriosis that has actually penetrated the bladder wall and is inside?

I have stage 4 endo with massive bladder involvement. The endo is inside my bladder, not just outside. I have been speaking to various surgeons, including a couple of urologists who both say that it is too difficult to excise because of where it is- trygone area, close to the ureters. I have been offered a bladder ablation (inside) on the NHS and am having private surgery in 10 days or so where they plan to invite another urologist in as a courtesy to give his view on whether it is possible to do or not. I wonder whether anyone on here has been in the same position and whether anyone has ever had a partial bladder cystectomy performed successfully? Is it as rare as everyone is making out?

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  • Hi sorry to hear you are suffering so much. I did have a deep infiltrating nodule of endo excised from my bladder wall in Oct 11. It was found during my excision surgery and lap and was unexpected as I hadn't linked all my bladder symptoms with endo (it was all very new to me and I thought it was just 'getting older' -dim). It had almost gone through the bladder wall and gynae had been concerned during surgery. It is listed as partial bladder cystectomy on my hospital discharge sheet. I was NHS but was seen and operated on my an endo specialist in one of the BSGE accredited centres (wasn't accredited then but is now under the leadership of the same surgeon). Yours sounds more complicated sadly but I hope you get some more advice/info here. Best wishes.

  • I had it and my surgeon did excision and TPE by a lap, I had my ureters unblocked too, you might want to get a surgeon who does excision not ablation and who is a little more confident, mine did a 6 hour lap and removed everything including bladder, bowel, pod, tubes, 18cm cyst etc x

  • Thank you both for your replies. I definitely think the ablation would be a temporary fix (whether it would even do anything for my symptoms remains to be seen). Unfortunately I wasn't referred to a specialist centre and having been very close to a surgery date, decided to get a second opinion from a well respected surgeon in the field which kinda brought my fears about being operated on by just anyone, to life. Am hoping that the guy who is coming in to look as a courtesy is a better bet for my needs. Unfortunately I'm not insured so the costs are going to be somewhat astronomical plus we need to try IVF again afterwards. Our first NHS cycle failed. It is scary thinking you are stuck with something like this for life and have to rely on surgeries to feel normal! Am worried very much about the implications for my bladder as I imagine surgery will also have long term implications. Lilly83, have you got any substantial relief from the excision on your bladder or has it made things worse? I have symptoms all day, every day so hoped that surgery would make that better but am wondering whether it will actually make things worse. :-( I also cannot get my head around the fact that you had an 18cm cyst. How awful for you. I currently have a 6cm endometrioma on my left ovary and have had it since Xmas ( as a result of IVF). The pain is incredible. I can't begin to imagine how much pain you were in. X

  • Hi i also had Stage 4 and had quite a large nodule removed from the bladder dome as endo had grown right through into the bladder. I had a bladder cystectomy at the same time as my hysterectomy. i was treated at an Endo specialist centre by endo surgeon and urological surgeon. Good luck x

  • Hi! I'm currently 16 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 was 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. I had it removed on day 13, and was able to empty my bladder normally, if a little more frequent than I was used to. I'm told that over time the bladder will stretch back.

    After the surgery my gynae consultant felt that even though the endo was not effecting my reproductive organs, just being there and it's unfriendly nature would make conceive very difficult...if not impossible! So it's safe to say I'm thrilled that's it's gone!!!

    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! I'm doing a 3 month course of prostap, followed by 3 months of mini pill, then will start TTC again in the new year. It's necessary to leave 6 months anyways for the bladder to heal completely.

    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. Good luck with everything. Xxx

  • HI, do can you PM, the name of your surgeon? Also what symptoms did you have prior to surgery.

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