bladder wall endometriosis

[Cactus0724]

hello,

I had my first lap on Thursday where I was found to have a lot of endometriosis. Some of it was found on my bowel wall and my gynaecologist didn’t remove it in fear it could cause damage to my bladder. I am awaiting a consultation with her in a couple of weeks but in the mean time, I just wondered if anyone has been in the same situation and if so what was your outcome? Thank you

[TogetherWeAreStrong Moderator Endometriosis UK]

I have read your post Cactus0724 and I have had no experience of this myself, but I am sure somebody will, so I am sorry that I can't help, but you have been heard and somebody will be able to, hang tight

[Escapologygirl]

hi

I have endometriosis on my bladder and rectum and gynaecologist wouldn't treat it as he was afraid of damaging other organs therefore he recommended decapeptyl injections which put me in a chemical menopause and i had every side effect going. So I wish you luck and know your own body and don't be afraid to get 2nd and 3rd opinions.

[Cactus0724 in reply to Escapologygirl]

thank you for getting back to me. That sounds awful for you. I hope you’re ok! My gynaecologist is an endo specialist so hopefully will come up with a good solution. I’d like to have kids some day so hopefully it will be manageable. Thanks for taking the time to respond x

[Escapologygirl in reply to Cactus0724]

Well I was only diagnosed at 40 after years of suffering in ignorance and now I'm 44 and have done my research for how to live with endometriosis and am not so green or eager to accept the first thing a gynaecologist says to me.

I live in Ireland and our female health services make the victorian age look like the space age.

I learnt everything about endometriosis from the UK society and and in Ireland you really need to have private healthcare as theres a 15yr wait for the public health service. I went to 2 private gynaecologist and they're best in their field including urogynacology and still pretty much got shafted. I hope you're luckier and can have kids.

[jabee]

Not quite the same but I have had endo in lots of places including on the bladder and deeply infiltrating endo encasing both ureters. I was seen by an endo specialist and he operated with the assistance of a urologist and surgically removed it all. I think if you are seeing an endo specialist you should be in good hands.

[Cactus0724 in reply to jabee]

thank you for getting back to me 🙂 I hope another op with a urologist would be good for me too

[SarahAnne81]

Hi,

So sorry to hear you are in this horrible boat too, l recently had an MRI which uncovered multiple cysts & endo on my ovaries which are stuck to the back of my uterus along with endo on my bowel, bladder & spine. I am being treated at Birmingham UK womens hospital, they have started me on prostap with a view to a good clean out via lap in the coming months. Only advice l can give really is keep chasing for treatment as much as you can, happy to answer any other questions and sending much love & positive healing vibes ❤️

[Cactus0724 in reply to SarahAnne81]

thank you so much for getting back to me. Wishing you all the best for your lap xx