Endometriosis UK

Endometriosis of ureter

Hi ladies. Had my lap on Monday. Found I have endo around my ureter. Looks like it’s extrinsic. My surgeon has said he will see me in 4 months. Been reading about endo of ureter and it sounds terrifying. I don’t know if I can bear another surgery especially major surgery. When my symptoms really started to flare up, I saw a urologist and I did have narrowing of my ureter but he didn’t think much of it.

Does anyone have experience of endometriosis in ureter. My research says it’s quite rare. What treatment was received? Did you have to stay in hospital and for how long? I’m trying to mentally prepare myself.

Thanks x

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I haven't had it in my ureter but they removed some (laparoscopy with curettage) from around both my left and right and detached both from the abdomen walls as the endo had stuck them to things. The left was at an odd angle which would have caused infections due to not properly draining.

My laparoscopy was three holes, bellybutton, bikini line and near hip bone. I was discharged the same day and signed off for two weeks; I also had removal of endo around bladder, uterus and both stuck to each other. check up in four months with considerations for endo removal from outside of bowel in the future.

If they've already done a laparoscopy then that's good because they know where they need to look so it should be straightforward :)

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I had it on my right ureter and it was excised as part of my main surgery. I also had cystoscopy and stents put in. It is something that you need to have treated because worst case scenario is that it can lead to kidney damage. I was in hospital for 2 nights, but I had a massive surgery with hysterectomy and excision of bowel endo carried out at the same time so really 2 nights didn't seem that bad.

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Thanks. I’m seeing my surgeon in 4 months so i’m thinking I might get referred to a specialist. Yeah from research it looks like i’m going to need surgery. I’m just tired of the disease already. That’s going to be a big surgery and i’m guessing recovery will be at least 4 weeks. I’m trying not to be scared.

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With this sort of endo you really need to be at a bsge centre - your GP can refer you so you don't have to wait the 4 months for the consultant to do it.

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