Endometriosis of ureter

[EmsO]

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

[luthien]

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

[Hidden]

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.

[EmsO in reply to Hidden]

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.

[Hidden in reply to EmsO]

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.

[justokme]

It is possible. Some research implies that it might not be as rare as stated, and should be suspected in all cases of Deep Infiltrating Endometriosis. doi.org/10.1016/j.jmig.2008...

Very lucky it was found and can be addressed, even if another surgery isn't at the top of your wishlists. Much better to deal with it now then to deal with losing kidney function entirely. *hugs*

[Jujuhawk]

Hi. Not sure if this post was 8 mins ago or 8 months ago! I had a lap 6 weeks ago to remove 13cm cyst. During the op my dr removed endo from my ureter, this wasn’t planned but whilst he was in he decided to do this. His words were” he tidied around”. I have had problems in this area for many years and like you the urologist more or less said, get on with it! So never thought I’d ever be free of it. I have a frozen pelvis so got all sorts stuck. I’m pain free as I changed my diet and exercised. Want you to know I have had no problems and feel transformed!! Not going to the loo many times at night and no pain. Not sure why your surgeon didn’t remove when he saw it. I paid to be seen privately by an amazing surgeon recommended by my gynae consultant. He is a specialist endo consultant who incorporated bladder and bowel surgery. I went back on to the nhs list for my surgery. Good luck! Xx

[CJR99]

Hi,

I had Endo removed from my ureter during a total hysterectomy a year ago. Apparently, it can be very complicated to operate on. I'm at RVI Newcastle which is the BSGE centre in the North-East. I was very fortunate to be operated on by the top dude but, unfortunately it looks like it's returned and I'm on the diagnostic lap waiting list. Just had pre-op but, waiting lists are pretty long!

My surgery was day robotic day surgery and I recovered okay until symptoms returned after 6-8 months. I had everything removed for malignancy in right ovary...think I've just been a tad unlucky! The surgeons were very thorough. One guy is Head of Gynae and the other was a Gynae/Oncologist.

I have concerns my kidneys may be affected. I defo have Endo in the pelvic wall again and possibly the ureter.MRI's were clear but, as us ladies know very well that means nowt!

Wishing you well and please feel free to ask any questions. Be very happy to help,Clare xx