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It's Neurological and not a physical bladder issue.

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  • It's Neurological and not a physical bladder issue.

    I have had IC symptoms off and on for 15 years but this recent Flare has been horrendous. I saw a Urologist today. This man is the Director of the Urology department at one of the best known facilities in my state. After hearing my history and symptoms, he tells me that he believes that IC is a neurological problem and not a physical problem with the bladder. He said I still could have some pelvic floor problems and he will do a Cystopcopy to rule out any bladder abnormalities. But basically it is caused by screwed up pain signals between the brain and pelvic area. Well that makes my bladder feel a whole lot better now , yeah right. He does believe that the pain exists but not from a bladder issue. So now what do i do ? I am actually scheduled to see another Urologist that is affililiated with his center but out of another office usually. I will see this other Dr at a sattelite clinic which is where I saw the first doc today.What a mess. I don't know what to do. The doc today told me to take Ativan everyday and 800 Mg of Ibuprofin. My GP told me that she would give me Elmiron and Valium. Should I take her up on this ? I hope she still agrees to, after my visit today. She seems to believe that it is physical so I am praying she will treat me. This really can be hopeless. And now my husband believes this Urologist and isn't very supportive.

  • #2
    I would get a second opinion. I have been told in the past that my problems were mixed signals also. Some IC patients can have symptoms and their cystoscopy shows up normal--doesnt mean they dont have IC
    Diagnosis: IC '09, vulvodynia '10, fructose intolerance '06, GERD '06, fibromyalgia '09, IBS '10 and TMJ '09, PCOS '11, genital herpes '12

    Current Meds: Butrans patch, welbutrin, lamictol, geodon, xanax, aldactone, linzess, topimax, trazadone and diflucan as needed.

    Meds tried before: Elmiron, elavil, antibiotics, welbutrin, cymbalta, prozac, nerve blocks, instills, nyastatin, flexerol, percocet, naproxen (which was what I was given for pain for years).


    • #3
      Has anyone ever officially diagnosed you with IC? Ruling out any other possible causes of your symptoms? If so, me personally, I would go with the elmiron and valium and seek another opinion. Ibuprofen has caused a lot of people with IC problems. My experience with uros is that they can be the head of some place but if they don't have an active interest in treating IC and learning the newest info on the disease they really aren't going to give you the latest and what is thought to be best treatment. That is totally my personal opinion.

      As far a what believes is causing your problems. I think that part of what is going on with me is communication between my bladder and brain. Such as I don't have an urge to urinate...ever...I have pain and that is how I know I need to go. That was really hard for me to adjust to in the beginning, I would be hurting like crazy and finally put it together that I had to "go"! I do know that I also have problems with my bladder too and urethra. I do think that most of what is going on with me is nerve problems because my main symptom is pain, constant, never ending pain. I do have urgency and frequency as well but not to the degree of my pain levels. One of my previous urogyne told me that with IC they have come up with quite a few meds to treat urgency and frequency but if you suffer from pain they really don't have any good answers for us yet. I think he is right, I would love to be able to not need pain meds to get through each day.

      Let your husband look around on the patient section of this site and look at the ICA as well. Hopefully he will realize that you are in pain.

      I hope you find some relief soon.

      Link to the patient information, everything from What is IC? to Disability

      American Urological Association Clinical Guideline
      Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom


      • #4
        I am so sorry you're in this situation! The hardest part of all of this for me was in that time when I didn't know what was causing my symptoms. I saw lots of doctors, some said it was this, or that, or I was imagining, or a drug seeker, or..., and I absolutely knew to my soul that none of them were right. I never felt so confused & helpless in my life and never want to have to feel that again!

        Has anyone ever officially diagnosed you with IC? Ruling out any other possible causes of your symptoms?
        I'm wondering the same thing as Sandra. It seems a bit early to simply declare it neurological when they haven't yet gone through the motions to rule out what it is not. There are doctors out there who "don't believe in IC", and I'm wondering if you may have one? I suppose I would have to agree with the others who have said second opinion time, but I sure wouldn't go to anyone in any way related to this same practice. I'd look elsewhere, even if it takes a day-trip.

        And now my husband believes this Urologist and isn't very supportive.
        That's sad and has got to hurt!

        Again, I'm so sorry you're in this situation! Best I can say is to go with your gut as to what you feel is true and right.

        "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."


        • #5
          IC symptoms can mimic all sorts of issues. You really need someone to get to the root of your symptoms whether its a neurological cause or not. Neurological doesnt mean you're crazy so I'm a bit lost as to why your husband is suddenly not wanting to offer support. Neurological pertains to nerves and disorders of the brain, spine, etc.
          While seeking out another opinion is always best, dont completely dismiss what this Dr has told you until you're got an affirmative diagnosis. Diagnosing IC is done by ruling out more sinister issues such as neuro issues, cancer, other diseases, etc.

          Good luck to you!
          (o.O )
          (> < ) This is Bunny. He's on his way to world domination.


          • #6
            I think in your position I would go for the second opinion --- with a doctor in a different office practice.

            Stay safe

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            Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

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            I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

            Anyone who says something is foolproof hasn't met a determined fool


            • #7
              I think it's both a bladder issue and a problem with the nerves. At least for me. I think that's why PTNS helped, because it calms down that centralized pain, which is coming from the nerves. And Elmiron has helped because it's also a problem on the bladder wall.
              Update! Feeling much better these days and no longer on any meds!

              Pelvic pain began July 2008. Urinary frequency began in November of 2008. IC Doctor says I'm one of the worst frequency patients he has had.

              Things that helped me the most: IC Diet, Elavil (30mg), Elmiron since June '09 (500mg/day).

              Previously tried and quit: one series of six instillations, Neurontin, Ditropan, Oxytrol, electric stimulation to the pelvic floor, Desert Harvest Aloe, Cystoprotek and Flomax, Hydroxyzine (50mg), Alesse Birth control (this helped my period flares when my symptoms used to be bad), PTNS (I think this helped).