Ureteral Endometriosis

[Harpyiai]

Want to keep this short. Had a laparoscopy last year when I was 17. They found a deep nodule of endometriosis on left Kidney tube (ureter). Got referred to a specialist, he didn't do anything apart from offer the prostap injection. My new Doctor in a CEMIG center said I need surgery to remove this nodule as the previous surgeon should have kept an eye on it as it is on such a vital area. I am getting all the symptoms related to Ureteral Endometriosi, including need to go to the toilet often (feel like I have a bladder of a child) and horrible back pain etc.

Want to know if anyone else has had experience with Ureteral Endometriosis or any endometriosis on their kidney tubes (ureter).

Thank you. Would appreciate any reply.

[KA410]

I had endometriosis on my right ureter (as well as several other places). My first gynaecologist didn't want to remove it himself but he referred me to another surgeon who successfully removed it with no problems. All my urinary symptoms resolved following surgery. Hope you also get successful treatment. x

[Stellauk]

I had endometriosis on my left ureter too. I had MAG3 renal scan and MRI. I was treated by a BSGE surgeon this year. After two operations (diagnostic and major operation) all were successfully removed and feeling much better now.

You may have to have stent / catheter for a while but it is not too bad.

Good luck

[Sez73]

Hi

I had both ureters affected, the left more significantly (as is usually he case) Initial laparoscopy revealed the ureter was very badly restricted due to extensive endo. Like you, I felt I needed to run to the loo all the time and never felt I'd emptied my bladder fully. The surgeons removed the endo around the ureter as best they could to relieve the constriction, however a renal scan after the op showed it was still getting blocked - my ureter was also stuck to the back of my cervix, ovary and v near the main artery to my uterus so they couldn't remove all the endo safely. Due to inflammation post surgery and remaining endo, I had a ureteral stent put in place for 3 months (longer than normal as I was on an extended holiday over Christmas at the time) the stent did the trick, relieving the pressure and allowing the ureter to work properly while the inflammation died down after the surgery and things healed. The stent felt a bit uncomfortable at times & you feel it occasionally 'scratching' in your bladder and lower back so it was a big relief when it was removed, the ureter while badly damaged did work sufficiently after that. I then had a 6 month follow up renal scan which showed everything was still ok.

I had further much more radical surgery in Nov last year (total peritoneal excision 8-9hr op in Yorkshire by an amazing surgeon at a BGSE centre) he managed to fully removed the remaining endo around my ureter as well as a nodule at the back of my cervix after both were deemed too risky to touch by surgeons in Sydney where I live. That improved my lower back pain significantly. I did not need another ureteral stent after that surgery, an added bonus! While my left ureter is now stretched, deformed and double the size of my right, it works enough and is no longer stuck to anything. So far so good!

At worst, I was told after my first surgery that if the ureter still got blocked again by the nodule of endo I would have to consider ureter re-implantation surgery, this is where they'd totally cut away the very damaged part of the ureter which was all stuck down to other organs, and then they'd stretch and re-insert it into the bladder in a new place. The urologist said it that would be fairly straightforward surgery, despite it not sounding like that! You'd then require another stent after that surgery while your body healed and the inflammation reduced. Luckily I didn't need that to happen though.

I've had a lot of surgery after significant endo which badly affected the ureters and am pleased to report that if you can find a very experienced dedicated surgeon willing to take on more risky cases it pays dividends as I have seen a lot of improvement now the nodule has finally gone completely.

Good luck with everything, please do contact me if you need any further info

Best wishes

Sx

[Harpyiai in reply to Sez73]

Thank you for your reply, I really appreciate people understanding my situation through their own experience. I am sorry to hear you went through all that but glad you are getting better . I have been sent for a CT scan soon to see the damage so fingers crossed. Thank you again x

[Sez73 in reply to Harpyiai]

No problem. Good luck with your scan x

[Shelly92 in reply to Sez73]

Sez

Do you think your horrendous experience was due more to bad doctors or severe disease

[Sez73]

A combination of both! My endometriosis remained undiagnosed for over 20 years despite numerous visits to my GP complaining of lower back and leg pain, and horrendous chronic fatigue, the many different GPs I saw (never the same one twice) at a busy city practice never investigated further as I didn't have the very traditional symptoms, they repeatedly told me there was nothing wrong with me, I must be depressed and it was all in my head & the fatigue was because I ran my own business and worked too hard. I eventually gave up fighting, stupidly believing I maybe was imagining it, & just put up with the pain for decades. I moved to Australia when I was 38 for a fresh start and new work/life balance and the endometriosis was finally diagnosed there but only after fertility investigations as I couldn't get pregnant. I had a diagnostic laparoscopy when they discovered 25+ years of extensive endometriosis, it was one of the most severe cases they'd seen & they were beyond horrified about the treatment of received in the UK NHS. They could only remove so much then deemed me too risky to operate further as there was a nodule sticking the back of my cervix to ovary, ureter &bowel and my main artery to my womb was implicated too, so they didn't want to risk any further surgery. I researched like crazy and finally referred myself last year to a BGSE centre in Elland Yorkshire and found a wonderful, dedicated, extremely clever surgeon willing to operate and he has turned my life around. Still unable to get pregnant and still have pain but nowhere near as debilitating and have some quality of life back which is brilliant. I know I'll never be well 100% but he's given me a chance at a half normal life so it was worth the eye watering operation costs!!

The thing I have learnt through this horrendous time and which I tell others- always trust your gut instinct and if you feel something is wrong, push push and push the doctor to listen and get referred. I couldn't continue fighting when I didn't think any of the GPs believed I was in pain but I wish I'd fought more & the endo may not have multiplied to such awful levels. I was told I had a very aggressive form of it but early detection would have certainly improved my outlook.

GPs know nothing of this disease and they do a great disservice to people like me by ignoring symptoms.

Good luck with everything

Sx