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Pain After Cystectomy/Urethrectomy

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  • ICNDonna
    replied
    Re: Pain After Cystectomy/Urethrectomy

    Originally posted by neohioic View Post
    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

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  • neohioic
    replied
    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.

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  • ICNDonna
    replied
    Re: Pain After Cystectomy/Urethrectomy

    Originally posted by Deannmarmo View Post
    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

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  • Deannmarmo
    replied
    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.

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  • neohioic
    replied
    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.

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  • Deannmarmo
    replied
    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.

    Leave a comment:


  • neohioic
    replied
    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?

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  • sweetness7104
    replied
    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!

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  • sweetness7104
    replied
    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.

    Leave a comment:


  • neohioic
    replied
    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.

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  • ICNDonna
    replied
    Re: Pain After Cystectomy/Urethrectomy

    Originally posted by sweetness7104 View Post
    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

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  • sweetness7104
    replied
    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.

    Leave a comment:


  • neohioic
    replied
    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?

    Leave a comment:


  • sweetness7104
    replied
    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.

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  • sweetness7104
    replied
    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.

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