Endometriosis of the bladder - what stage is it considered?

[CharlotteE07]

Hi everyone.

Does anyone happen to know whether all endometriosis of the bladder is classed as the same stage (and if so, which stage is it?) or does it differ depending on the severity?

Specifically wondering what stage it is when it’s on the lining of the bladder but not sure if other factors come into play.

Thanks so much

[Stacey85]

Such a shame no one has replied because I'm in the same boat!!!

They found endo on my ovary and bladder, I also have a cyst in my cervix. They burned it off my ovary and left it on my bladder because they didn't want to damage my bladder.

I'm bad enough for them to leave it but apparently not bad enough to send to a endo specialist!!!

NICE guidlines state "Refer women to a specialist endometriosis service (endometriosis centre) if they have suspected or confirmed deep endometriosis involving the bowel, bladder or ureter."

I need to have this out with them because they will probably try and fob me off by telling me its not deep even though they don't know!

[CharlotteE07 in reply to Stacey85]

So annoying that it’s never black and white and you’re always left with questions. I’ve heard they don’t like to touch it when it’s on the bladder too but where does that then leave us! I really hope you get to see a specialist.

[Stacey85 in reply to CharlotteE07]

I want to know they have checked my bowel area as well because that causes me way more symptoms!!!

Sorry no one answered your original question xx

[CharlotteE07 in reply to Stacey85]

I am the exact same - I’ve only recently been told I have this (by MRI scan only which I know isn’t a confirmed diagnosis but they said it’s clear I do) and nothing showed up on my bowels but I’m convinced it’s there as I have way more symptoms with that too. That’s ok, it was a long shot! Hopefully one day we will get some more concrete answers xx