Pain After Cystectomy/Urethrectomy

[ICNDonna]

Re: Pain After Cystectomy/Urethrectomy

I too had IC and I had my bladder and urethra removed on September 6th. I did well for 4 weeks then everything went down hill. First I started out with the feeling I needed to urinate then the burning pain started in the area my bladder used to be. It goes down into my vagina area and down both legs. My surgeon sent me to a pelvic pain specialist who wants to do a nerve block but he didn’t sound very confident that this would help me. He also put me on gabapentin which so far hasn’t helped. I’m going next week to see a neurologist and get his opinion on what I should do. I feel for you and anyone who has gone through IC and had their bladder and urethra removed only to be in pain still.

You are still fairly new to your bladderless life. I still have my bladder, but have read many messages from those who have had theirs removed --- I'll try to pass along some things I have read. It can take several months to recover from the surgery itself. One suggestion made by a member that sounds reasonable to me is that when she felt that "have to go" feeling, she would sit on the toilet until it eased. Somehow her muscles would relax, just as they do during urination.

You might want to consider the nerve block. It may be a temporary fix, but could give you some relief while your body has time to adapt. I'm so sorry you're going through this --- and hope you'll feel better soon.

Warm hugs,
Donna

[neohioic]

Re: Pain After Cystectomy/Urethrectomy

That is so weird that you have pain still even with urethra removed. Did your bladder hold much? Did it look good under cystoscope? Maybe because you had the pain for so many years, the nerves at stuck in the on position.

[ICNDonna]

Re: Pain After Cystectomy/Urethrectomy

That is so weird that you have pain still even with urethra removed. Did your bladder hold much? Did it look good under cystoscope? Maybe because you had the pain for so many years, the nerves at stuck in the on position.

It's not unusual for the body's nerves to fail to recognize when an organ or limb has been removed. It's called "phantom" pain. We had a friend who lost a leg many years ago, but he had to treat leg pain for the rest of his life. When an organ is removed, the nerves going to that organ are severed, but they still think it's there so the pain continues. That's one of the reasons many, if not most, doctors are so hesitant to do removals except as a very last resort.

Donna