Help - kidney issues

[RainbowBeth]

Hi

So I have found out that I have really poor kidney function as a result of Endo on my ureter tube. In my last surgery 8 weeks ago I had a temporary stent fitted to support my ureter. (The Endo had squished the bottom of the tube). I had a scan 4 weeks ago that showed my kidney function had gone from 13% to 17& (not good really). Just wondering if anyone else has experienced this.

Feeling anxious that it won't get better. Also that worse case scenario is I lose my kidney! I quite like having two!

I am finding it all a little overwhelming as my Endo journey has been a roller coaster that I would really like to get off sometime soon.

I am chasing the team for an update regarding a plan to solve the issue, however they are being a little evasive which is making me nervous.

Thanks x

[Alicepirate]

Oh no really to hear this how did you find out about kidney issues what symptoms do you get? I was awaiting hysterectomy for adenomyosis have paused it as since lap where endo was cut from left areas including left ureter have been having more and more pain weeing and find it hard to empty bladder fully and lots of pain all the time in that area especially at night . also some blood in urine for a week in August i finally had a CT scan last week and have a cystoscopy on the 5th dec but no results yet have been waiting for referral since April to urologist very long waits.

Hope you get some answers soon😀

[Stellauk]

Hi,

I had endometriosis effecting the left ureter and other places too. Luckily the kidney function was normal. I had a diagnostic lap with stent inserted. I also had prostap3 injection to shrink the endometriosis lesions. 3 months after the first operation I had the major operation to remove all endometriosis lesions. I had the stent for another 4 weeks and catheter too. I am all back to normal now from week 5 post operation.

The key is to be referred to the right surgeon as you need more specialised care. You need to find a BSGE center. Check out lindle posts here on how to do this.

All the best.