Damaged ureter.

[Pinknickers]

Hi. I Do hope someone can help, although I recognise we are all on very different treatment pathways. I was diagnosed with Endo last year following surgery to remove my ovaries and cervix after a previous partial hysterectomy had failed to stop my bleeding and pain. I was over the moon to have a diagnosis at last, but was told that the tube from my kidney had been damaged by the previous surgery, and also had endo on it. Since then life has gone downhill. Every day is crippled by pain that at best is tolerable with significant amount of pain killers, and at worst is intolerable. I have had stents inserted and a balloon to open up the tube, and the kidney is working well and draining, but the pain continues. I have lost 17kg as I have no appetite and when the pain is bad I vomit violently, recently ending up in hospital to have pain and vomiting both managed. I am failing as a wife and mother, and my work has become a distant memory. My gynaecologist is very supportive but it's the urologists who now oversee my care, and they in turn have no idea what to do with me. Does anyone have any similar experiences? Or know of a good urologist with interest in endometriosis? Any advice is really appreciated, as I am absolutely at my wits end.

[As-17]

Hi there sending lots of hope, me too! I had major endo surgery in April and then after 6 weeks I developed a different kind of pain n was admitted back to hospital saying my left ureter wasn't draining propley and I developed a cyst on my left side tooo. After having 6 hours of stage 4 endo surgery were my bowel, bladder and womb was stuck togethere that was sooo hard and then within 6 weeks needing surgery for kidney stents and drainage of cyst, plus spiked temperatures so ending up staying in hospital 4 weeks. Me tooo I feel like I'm failing as a wife and mum plus work seems far away xxxx

[didymus]

Hi. I have experience of endo re both ureters. The left was worst and was putting massive pressure on that kidney. They struggled to get stents in even after removing the disease and for a while it looked like they were going to have to 're-plumb' me ;-). I'm assuming that they removed the endo from your ureter. I could tell you who I was treated by if you want but it would have to be in a pm as we are not supposed to make recommendations on the forum itself. I am still unfortunately in pain but I'm fairly sure my situation would have been a lot worse re my bladder, bowel, ureters and kidney if I had not been operated on.

[Pinknickers in reply to didymus]

Hi Didymus, thanks for replying. They said they got what they could off. I didn't ask what was left because I didn't know what problems lay ahead. They did initially have to put a stent in through the kidney, but the ureter is no longer blocked, so the kidney is fine. The urologist does not know why I am in so much pain, so I don't know if it's because of the scaring or the Endo or both. My urologist just happened to be in the theatre next door when I had my Gynae op, so he's not a specialist in Endo, and I'm thinking that maybe someone with Endo experience may be able to give me more answers. What part of the country are you in? I am thinking of just asking my urologist to hand me over to someone listed on the BSGE site. I don't want to offended anyone, but I don't think being polite is going to give me back my life.

[didymus]

I actually live in South Yorkshire but having taken a second opinion in a bit of an emergency situation(actually I took a third at the same time just to be on the safe side), I travelled down to the South East (Surrey) for surgery. Unfortunately, there are not that many people in the country who are truly skilled in ureteral endo - though you will come across a fair few who think they are. My surgeon is not on the BSGE site - which is confusing as he and his hospital have one of the best reps in the country for endo and for minimal invasive surgery. That's not just me saying that - other gynaes say it as well as patients. Believe me, when I was researching my next step, I talked to a lot of medics. I can only assume that the hospital has some other motivation for not being listed.

[Yazza in reply to didymus]

Could you pm me the details pls. X

[Pinknickers]

Wow. I am definitely getting the feeling this is an extremely specialised field, and unfortunately my guy (who is really a nice guy, trying his best) seems to just be stuck with how to look after me. If you wouldn't mind emailing me the name of who you saw, I would really really appreciate it. [e-mail] Thank you.

[didymus]

I'll email later today with more detail - just a bit tied up with something right now - but don't want you to think I'm ignoring you x