Bladder removal? I have questions

[Trei6y1952]

1) Did you have your urethra removed?
2) Did getting your urethra removed affect your sexual function?
3) Did your IC come back, and if so, how many hours do you have to cath at worst?
4) Do you regret it?

[Judith56]

I just want you to know that everyone is different , my experiences may not be the same for you, but I will answer your questions as to how it is/was for me.
1.Yes
2.No
3.My IC did not come back. The frequency of how often you will cath depends on several things, once your pouch is "trained" it depends on how much fluid you have taken in and how much your pouch can hold.
4.I do not regret having the surgery in any way. I am very happy it was an option for me.

[Fiona R]

Bladder removal?

Hi Susan,

I had a Urinary Diversion to an Ileal Conduit in 2003 and tried to have a continent diversion in 2006. This however failed and I ended up with the Ileal Conduit again.

I didn't have the bladder or urethra removed due to adhesions however this has not presented any problems. My IC has spread to my ureters so this is still an issue for me. My urologist confirmed that I have been unlucky as the IC was so aggressive.

One thing he did state in 2003 when we discussed my options was if I removed the bladder, then this would limit my options if they ever found a real cure for this horrible disease. I know that this sounds like a long shot but I was only 31 at the time and had the disease for 4 years so I was desperate for some kind of hope.

I have never ever regretted my diversion, my pain decreased and I regained some control over my life.

If I had the choice then I would opt for the continent diversion and keep my bladder, however this is a really personal choice.

A nephrostomy is a good way of finding out if simply removing the urine from the bladder and urethra will resolve your pain thereby allowing you to make an informed decision.

I wish you all the luck in the world with your next step.

Best wishes, Fiona