Bladder endometriosis

[laurenadc]

Hi, has anyone been diagnosed with endometriosis in the bladder? An MRI last month confirmed mine, and they have suggested surgery but it will permanently remove some of my bladder. Has anyone had this done, and what were the long term effects? Or any other ways to manage it? I go back and forth whether surgery is the right option for this, but after a bad flare this weekend that resulted in me being sick at my desk in work yesterday, I don’t think I have much option 😞

[Nataliex]

Hi,

Yes I had this surgery a couple of years ago. It was done using a robot and two surgeons ( one for the bladder and one for endo elsewhere). They had to take around a third of my bladder away. The good news is that it completely resolved my symptoms and healed really well. The bladder is apparently really stretchy and stretches back to normal size in a few weeks. Initially I was conscious of going for a wee more regularly but soon back to normal. The only thing I'd warn you about is the recovery period is really unpleasant. I had a catheter in and another one coming through my belly as a backup incase the first one failed. These had to stay in place for 3 weeks to let the bladder heal. I managed with them at home but they have to be cleaned regularly and it's really not fun walking around with tubes dangling from you. I have to admit it really got me down. If you're happy to put up with that for a few weeks then it will likely do the job for you.

Also it was quite a long operation so consider the risks of that as well.

Happy to talk more / answer any questions here or you can private message me.

Best of luck with it which ever way you go! Be reassured there can be a good outcome in the end.

Xx

[Cheeseandpineapple]

Hi Lauren and Natalie. I've had it on the post and had a section burn off, followed by prostap, bladder instillations and a lot of physio. It took a lot of years to get semi free of the pain but is now back. Can I ask, have you had horrific bladder pain, difficulty weeing and constant high levels of white blood cells in your urine too? Prior to surgery did uou find anything that helped alleviate the pain or symptoms? I feel like I'm going to lost all bladder function at this point with the NHS waiting lists