Pain After Cystectomy/Urethrectomy

[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.

[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?

[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

[sweetness7104]

Re: Pain After Cystectomy/Urethrectomy

I have the Indiana Pouch. And yes, I thought it was strange that phantom symptoms would hit this far out too. I’m actually in more pain than before the surgery. I just don’t know what happened or what to do.

[sweetness7104]

Re: Pain After Cystectomy/Urethrectomy

Donna,
I will try this. But it’s 24/7 pain with urgency, so I’m not sure it will go away. I felt SO great after my surgery, and now I feel so hopeless.

[neohioic]

Re: Pain After Cystectomy/Urethrectomy

I"m very sorry your suffering. I've spent tons of hours reading on this topic because I'm suffering too. I"ve heard somewhere that if you have IC and get the bladder removed it is best to get the ileal conduit (external bag) to avoid future pain as the nerves could grow back around your new bladder.
Does your pain ease at all after you drain the indiana pouch?
Maybe you can get a pain pump. Have you looked into this?

[sweetness7104]

Re: Pain After Cystectomy/Urethrectomy

Draining the pouch has no effect on the pain whatsoever. I have an interstim device that I’ve had for 10 years. Is that what you mean by pain pump? I knew the nerves could grow back, but didn’t realize they could grow back around the pouch itself. I had my urethra removed as well and that’s the source of all my pain. I don’t even know which doctor to see at this point I’ve seen so many.

[ICNDonna]

Re: Pain After Cystectomy/Urethrectomy

Draining the pouch has no effect on the pain whatsoever. I have an interstim device that I’ve had for 10 years. Is that what you mean by pain pump? I knew the nerves could grow back, but didn’t realize they could grow back around the pouch itself. I had my urethra removed as well and that’s the source of all my pain. I don’t even know which doctor to see at this point I’ve seen so many.

A pain pump and interstim are two different things. Both are units that are implanted under the skin. The interstim delivers tiny shocks that help ease pain; my pain pump delivers a tiny, constant dose of morphine directly to the nerve pain source. Which doctor? I suspect either a neurologist or a pain management specialist, but I honestly don't know --- if you have a primary care physician, he/she would know and handle a referral.

Donna

[neohioic]

Re: Pain After Cystectomy/Urethrectomy

well sweetness I'm very sorry that you are suffering like that. That is terrible. So there must be some kind of problem with the nerves in your case and probably with mine with chronic nerve pain. Like sometimes I will take a pain killer, and it will take time to take effect but it really helps with the pain for over 24 hours. I know after the 24 hours the medicine from the pain killer is long gone. But it must help with 'shutting down' the nerves from firing. That is why I"m afraid with getting my bladder removed but I know the pain is coming from my urinary tract. I believe that because when I get an instillation, it shakes up my pain. It will change, get worse, better, and then go away. It will do that multiple times on the day of getting the instillation. Then the next day or so, the pain will really start to settle down like where I feel normal. So the source of the pain is from the urinary tract. If I"m able to stop the pain from the source, that should solve the issue completely.

Did bladder instillations ever help for you? I have the interstim too. It doesn't really do anything for my pain. It helps with my retention problem which only started after I started on my larger doese on amitryptaline. A pain pump puts drugs into your spine so these drugs work better without the side effects of taking them orally. I think I"m going to try this.

[sweetness7104]

Re: Pain After Cystectomy/Urethrectomy

I think I’m going to meet with a pain mgmt specialist regarding a pain pump. I tried the bladder instillations prior to my bladder/urethra removal and the pain was so severe that I had to go to the ER. Those were a definite NO for me. It seems I’m doomed to have this pain even when the source is gone.

[sweetness7104]

Re: Pain After Cystectomy/Urethrectomy

Hi all, we may, and I stress MAY (because we all know how this goes), figured out the culprit. My pain is localized, internally behind and on my pubic bone. The thought is that scar tissue from my surgery has formed AND my nerves are reconnected with this. So not only do I have new pain from the scar tissue but I have old phantom pain as well. Oh yeah, and I still feel like I need to pee! I’m working with a pelvic therapist who thinks she can help, otherwise I’m heading back to the urologist to see about scar tissue removal. We’ll see. I’ll keep you posted!

[neohioic]

Re: Pain After Cystectomy/Urethrectomy

yes, please do keep us posted. I'm glad they were able to figure something out. I"m amazed the gave that answer. Is that just a theory they have or how did they figure this out?

[Deannmarmo]

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.

[neohioic]

Re: Pain After Cystectomy/Urethrectomy

Hi deannmarmo, I'm very sorry that you are suffering, this is a terrible condition. Can I ask a few questions: how many years did you deal with this condition? Also did you get indiana pouch, or the urostomy bag? A couple other things, when you had your bladder did you get relief from instillations with heparin/lidocaine? I"m thinking about getting bladder removal eventually and I want to make sure it works for me.

[Deannmarmo]

Re: Pain After Cystectomy/Urethrectomy

I’ve had IC for 33 years. I wear a urostomy bag. The instillations never really helped. They seem to flare me up.