Ureter Endometriosis Help

[VBear87]

Hi,

I've been diagnosed with endometriosis (have know it for years but officially from August). I had the operation in August and they removed it from both ovaries. I have stage 2 on my right and stage 3 on my left. While there they found endometriosis on my ureter tubes (the tubes linking the kidneys to bladder). This they weren't able to remove and have said it's rare and can lead to kidney failure if left and will require a bigger operation. I've not been given any more information and I've asked 2 GP's and both didn't really understand what I was talking about. I'm trying to research a specialist in this area but only finding kidney and/or bladder specialists.

Does anyone have ureter endometriosis and how did you find the right surgeon? Who is best to contact in the UK and what did the operation include?

Many thanks

[Kathb0]

Have you joined Nancy's Nook on Facebook? It's a good resource and provides lots of information as well as a list of surgeons/specialists in the UK. Hope this might help.

[Brambledoggy]

I’ve DM’d you in the hope the article I’ve sent you might help. I also agree that the NN group may help. You’re going to need the very best surgeons and knowledge. Sending support. ❤️

[dawntildusk]

i have had endo excised from my ureters. Was your surgeon a bsge specialist?

[Carolina88]

I had a laparascopy back in May. The took out some endo they found but my Gyno said i had some on both ureters, and thats an area she or anybody wouldnt want to touch. I still get bad cramps, and alot of bladder and digestive symptoms like bloating. I decided to reach out to an endometriosis specialist. Sounds like we are kind of in the same page.