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Real members of MyEndometriosisTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Hi Girlies! Does Anyone Have Experience With Endo Inside Their Bladder?

A MyEndometriosisTeam Member asked a question 💭
Boston, UK

I’ve recently been diagnosed with endo through a cystoscopy. I’ve been living with UTI like symptoms since 2019. Does anyone else have experience with it being inside the bladder? I was told I had ‘painful bladder syndrome’ and my urologist completely ignored the possibility of it being anything else. I packed my suitcase in March and went to Latvia where I was hospitalised and had a bladder biopsy which confirmed endometriosis. I didn’t even know what endometriosis was before the diagnosis, so… read more

May 5, 2023
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A MyEndometriosisTeam Member

Yes @A MyEndometriosisTeam Member, my bladder was back to normal and have no more bladder problems since. I still have bowel issues but that's another endo story.
I hope Visanne works for you. It's painful to go through any type of surgery.

May 11, 2023
A MyEndometriosisTeam Member

That is very helpful @A MyEndometriosisTeam Member! I am currently on Visanne, hoping my symptoms improve but my gynaecologist has said that I might need a part or the bladder removed if hormones won’t do the job. Has your bladder gone back to normal completely after the surgery?x

May 7, 2023
A MyEndometriosisTeam Member

I had endo outside and inside of my bladder, endo blockage on my ureter and outside my kidney. That's what caused my UTI symptoms. I was initially diagnosed to have interstitial cystitis and was put on antibiotics for a year.
I had an excision surgery, the urologist removed that part of my bladder. I was on a catheter for 2 weeks. I haven't had UTI symptoms since.
I am no doctor, but I think if they only found them on one side, I.e. endo hasn't penetrate through, an excision or ablation should be suffix and they might me able to do it with cystocopy procedure.

May 6, 2023
A MyEndometriosisTeam Member

I’m on Visanne at the moment, hoping it makes a difference, I haven’t had a laparoscopy, only CT scans etc and 2 cystoscopies. Doctors think I’m stage 1 and don’t want to cut me open unless it’s necessary later on (I’m hoping it won’t be)

May 6, 2023
A MyEndometriosisTeam Member

I have always had bladder trouble.

May 5, 2023

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