Pain After Cystectomy/Urethrectomy

[ICNDonna]

Re: Pain After Cystectomy/Urethrectomy

I think it's unusual for phantom pain to hit that long after a surgical removal. I haven't had this surgery, but a friend found that when she had the feeling she needed to go, she would sit on the toilet and it eased the feeling. Somehow her nerve system, plus years of easing that "gotta go" feeling by sitting there to urinate seems to trick her system into feeling the same relief she used to get after urinating.

You might give that a try. And please let me know how it works.


Donna

[neohioic]

Re: Pain After Cystectomy/Urethrectomy

do you have the ileal conduit (the external bag) or do you have an internal bladder that was made by the surgeon?

[sweetness7104]

I had my bladder and urethra removed 11 months ago, in Sept 2017. After my surgery I had instant relief. All my IC symptoms were gone and remained this way until about a month ago when I had a sudden onset of pain/burning in what and where my urethra was. I feel the need to pee all the time now with a lot of pain in my “urethra”, which doesn’t exist. I’m pretty much back to my pre-surgical state, other than the fact that I don’t have to actually pee 40x/day.

Anyone else that has had surgery, has this happened to you? Does anyone have suggestions? I’m losing my mind. I’m on neurontin, receiving pelvic floor therapy (I developed small bowel herniation after my bladder was removed), and I don’t know what else to do.

FYI- I had surgery after 12years of living with IC and failing every FDA approved treatment. I’m afraid the length of time before I finally had surgery has possibly led to an irreversible pain/nerve loop.