Endometriosis on ureter

[Endom27]

Has anyone else been diagnosed with Uretal Endometriosis? I got my letter back today and it said I had that along with the other areas.

[Moon_maiden]

I don’t know yet, possibly uterus to bladder.

Did you have treatment at the same time?

How are you feeling?

[Endom27 in reply to Moon_maiden]

They said they couldnt remove it as was too dangerous. Im just confused by it all aswell as the doctor said alot more than what was in the letter to my doctor?

[Moon_maiden in reply to Endom27]

You must be feeling awful, so sorry. I dread getting the same answer.

Was it a BSGE centre? They have easier access to bladder and bowel surgeons, they have to according to guidelines. If it isn’t they should refer you automatically.

You could request a copy of the hospital notes, can take up to a month.

[Endom27 in reply to Moon_maiden]

No i dont think it was a BSGE centre. It was a private hospital though but done through NHS. Its in my ureter leading from my kidney to my bladder. It is heart breaking to know they cant do anything for it but I just have to come to terms with it.

[Moon_maiden in reply to Endom27]

If it wasn’t a specialist, you should get a second opinion. Have a look at the NICE guidelines, and BSGE website and speak to your GP. Hopefully you may get some help, it’s a tricky area though.

[Endom27 in reply to Moon_maiden]

Im pretty sure my doctor was a urology specialist x

[Megandmog]

Yep I did. I had a nodule inside my ureter. I had to have kidney stents put in, but they didn’t work so then I had to have something called bilateral nephrostomies to give my kidneys a break as I was suffering from acute renal kidney failure. I had surgery in December last year to do reconstruction surgery on my ureter and I had the stent removed in June and have only just been given the all clear!!!! Don’t hesitate to DM me if you wanna chat/ask questions! xx

[Endom27 in reply to Megandmog]

Oh gosh that sounds like youve had a rough ride ! They couldnt remove mine from my ureter. Did they tell you that too? Xx

[Megandmog in reply to Endom27]

No they managed to remove mine, they had to do reconstruction surgery on it, so they cut out the endo and re sectioned my ureter. I had an endo specialist and a urology specialist doing the surgery xx

[Endom27 in reply to Megandmog]

Oh I see I wonder why they couldnt remove mine 🤔

[Lindle]

Just be sure you are treated at a tertiary specialist centre if not already.

[lizzyxx]

Yes I did but they removed it during my excision surgery

[Endom27]

They didnt remove mine as they said it was too dangerous. I wish i had questioned it more but when she told me i was still drugged up from surgery x