Endometriosis in the bladder causing recurrent infections

[Lily1985]

Hi everyone

I used to be on here years ago whilst I was going through IVF unsuccessfully with my ex fiance.

I was diagnosed with severe Endometriosis and infertility in December 2013.

They found Endometriosis and adhesions on the bladder, uterus, fallopian tubes and ovaries. Adhesions from the uterus to the bladder and adhesions from the ovaries.

Both fallopian tubes are blocked.

I left Scotland in June to live back in Germany after 12 years abroad.

Even months before I left Scotland I had recurrent bladder infections and thrush.

Once I arrived in Germany both got worse and I ended up in hospital 3 days ago with a kidney infection.

I am in urology and the doctor there said that I need a laparoscopic surgery especially for the bladder as she thinks that the Endometriosis is inside my bladder causing recurrent infections.

I struggle to empty the bladder daily and the pain is excruciating.

I tried several medications for the Endometriosis such as the Prostap injections and the Visanne.

Nothing worked without severe side effects.

My last surgery was in December 2013 where I was told that I definitely need more surgery.

I told my urology doctor that I would like the surgery done in an Endometriosis centre. She is okay with that.

We have two Endometriosis centres nearby.

Has anyone else got any experience with Endometriosis in the bladder causing recurrent infections?

Thanks for reading everyone xx

[Bdgjdjd]

Sorry about your struggles 😭

I have stage 4 endometriosis

Burning urination kills me everyday i have done the test and it back normal and I don’t have infections but i swear i have something no infection but painful and burning peeing makes me carzy

Did your infection show on the test ?

[Lily1985 in reply to Bdgjdjd]

Hi thank you for your reply

Whilst I was diagnosed in the UK they didn't have stages just mild, moderate and severe. I think at the time I was moderate Endometriosis with adhesions and infertility.

Yes a strong infection showed up on the test on Tuesday.

Bladder Endometriosis is a nightmare.

I hope those of us suffering from it will get help as soon as possible xx

[C765]

I have the same bladder problems as well. I had a lap to remove endo in March but my bladder symptoms and pain during sex are still happening. I went back on Thursday and I'm getting a camera to look in the bladder to see if there's any endo or if I have interstitial cystitis. Im having it done a week on monday so can keep you updated. Have they had a look inside before doing any surgery? Or will they do that at the same time?

[Lily1985 in reply to C765]

Hi thank you for your reply

The urologist wanted to have a look but they wanted to do it whilst i am still on antibiotics for my infection and without pain relief, whilst I am fully awake. The pain is too severe for me to do that.

So she said I should go to an Endometriosis centre and to get it done whilst I am in surgery.

The thing is what they see at the urologist inside the bladder is just the tip of the iceberg.

So getting it removed everywhere else and on top if the bladder is important too cause otherwise it just grows straight back inside again :/

I wish you good luck with your appointment! Will they give you pain relief or let you sleep through it?

Yes please let me know how it went and what they found

[C765 in reply to Lily1985]

Oh no that sounds so painful, defo a better option to do it whilst you'll be asleep. I hope it all goes well for you and hopefully can ease the pain. I'm getting put to sleep cos he's gonna stretch my bladder and that can be quite painful and cos it's sore already he doesn't want to make it unbareable. The thought of being awake whilst they put a camera up there as well makes me feel funny as well.

[Lily1985 in reply to C765]

That's good that you'll be asleep during the procedure!!

Yes I was thinking the same that I don't want to be awake and being in agony whilst they put their equipment and a camera up there 😳😩