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I need help with BCG!!!

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  • #16
    SuzZ, please keep us posted. There is a uro in Austin, TX (4 1/2 hours away from me via a two-lane road with unimproved shoulders)that is working with BCG and swears by it. Could you ask your uro about the problems that may occur with an IC patient with Hunner's ulcers.


    • #17

      I participated in the BCG study that was done several years ago and, for most of the participating patients, it did not provide any relief. It is not recommended for the treatment of IC and will not be getting approved by the FDA for it either.

      Although I didn't have many side effects from it, I didn't find it at all helpful either.>Tina
      Founded in 2002, the Baltimore/Washington DC IC Support Group is an independently organized local group. There are no fees or dues required to join.

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      • #18
        I also participated in the BCG Study several years ago in Baltimore. I was pretty lucky, I had few side affects and had 2 years of little to no signs of the IC. Unfortunately it doen't last forever but it was worth it.


        • #19

          Diane I have had a hypogatric nerve block done a couple of times without lasting effects. It sounds like your mother is going to have nerves cut. I was told that once you cut nerves they will eventulally grow back in time. Currently my pain doctor is suggesting a trial of a pain pump and I do not think I have ever seen anyone post on this site about having an implanted pain pump for pelvic/bladder pain. He said that he most likely would use something like fentenyl in the pump. Apparently you undergo a trial similiar to what you would do for an interstim. . He also said that just a tiny bit of medication in a pump would work as effectively as taking many oral medications that would put you to sleep. So I would be interested to know if any of you have a pain pump and if it has made your life a lot better.
          Last edited by Grammy; 06-11-2008, 03:57 PM. Reason: mistake in a word


          • #20
            Grammy, I know there used to be a couple people here who had pain pumps implanted...but not sure if they post here anymore...You might have better luck reposting in a new thread (this one is so old--from 2001) I wouldn't want your post to be buried under BCG if there is someone with pain management experience could that help you.
            Somewhere there's a reason /Why things go like they do /Somewhere there's a reason /Why some things just fall through /We don't always see them /For what they really are /But I know there's a reason /Just can't see it from this far /Maybe I don't like it, /But I have no choice /I know that somewhere, /Someone hears my voice / I thought I knew it all /I thought I had it made /How could it end this way? /I thought I knew Somewhere there's a reason /Why things don't go my way /Somewhere there's a reason /That I cannot explain /Just like the change of season, /Just may not be my turn /But I know there's a reason, /The lesson's mine to learn