Endometriosis in the bladder. Advice needed!!!

[Mollyborys]

Hi, I have been diagnosed with endo for about 2 and a half years and have had one surgery to remove it. In the past couple of months my bladder issues (which I have had for a long time) are now at an extreme point with it landing me in the hospital once every two weeks. I get all the symptoms of a uti, but the blood in my urine is not just a little it’s a lot. It’s more like a period from my urethra and the pain is so intense it sends me into adrenal crisis (I also have Addison’s disease). There doesn’t seem to be anything that triggers it, it randomly flares up and once it’s started nothing I can do to stop it. Does anyone else experience this type of issue and can offer any advice of how to manage symptoms? Doctors are investigating and going through the process to potentially get another surgery to remove but due to NHS waitlist I need some help coping until this happens.

Thank you

[mimilover]

Surgery to scrape endometriosis off your bladder. I had it all over my bladder .

[mimilover in reply to mimilover]

I’m so sorry about the wait time 💜

[Mollyborys in reply to mimilover]

Did you find that it helped a lot after that? What were your symptoms while you had it on your bladder if you don’t mind me asking?

[mimilover in reply to Mollyborys]

You know I didn’t realize it was all over . And they didnt realize (I over heard the doctors as I was being wheeled in they said “it’s a mess in there” I said “I can hear you” and they hurried and put me out . I didn’t know that it was on there. I was told it most likely was. But no I didn’t know. Or feel it. I woke up and they told me they took out all female ……and oh…..also what was most painful was up the rear . Anyway……..I’m very sorry . This was 25 years ago so it will be easy now …….the surgery.💜💜💜💜💜💜💜❤️❤️

[mimilover in reply to mimilover]

Oh…….after yes.. but low grade uti and that lasted awhile so I laid down a lot and drank a lot of cranberry juice . About a year. Everything else took like 5 years though to feel better.