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Canada IC Patients Speak Out Against Proposed IC Name Change

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  • Canada IC Patients Speak Out Against Proposed IC Name Change

    We just received this statement today from Inga Legere, Ottawa IC Support Group.

    Opinion on “Interstitial Cystitis” Name Change
    Interstitial Cystitis Support Group of Ottawa, ON, Canada

    At a recent meeting of the IC Support Group of Ottawa, ESSIC’s (European Society for the Study of Interstitial Cystitis) decision to change the name “Interstitial Cystitis” to “Bladder Pain Syndrome” was discussed. There was an overwhelming consensus of opinion among the group that the term “Interstitial Cystitis” should not be changed. The reason to retain the name “Interstitial Cystitis” is that it is now known among the public and the medical community. Almost twenty years of hard work and concerted effort by a number of patient advocacy groups and organizations have raised awareness of this disease, and have achieved recognition of the name “Interstitial Cystitis”.

    If ESSIC feels that the name “Interstitial Cystitis” is not the correct term for the disease, let us wait until the cause of this disease is finally discovered, and then consider re-naming it.

    For many who do not have the benefits of socialized medicine, the protocol ESSIC proposes to diagnose “Bladder Pain Syndrome” would be beyond their financial capability. The reality is simply that many people would be undiagnosed, and therefore untreated.

    Using the PUF or ICSI questionnaires may suggest the initiation of non-invasive treatments. If after a trial period of treatment there is no symptomatic improvement, perhaps more invasive (and therefore, more expensive) procedures for diagnosis and treatment would be indicated. At this point, ESSIC’s proposed ‘rating’ system for the severity of IC symptoms would be useful.

    The name “Interstitial Cystitis” represents a group of specific symptoms that are now recognized by urologists. The symptoms have not changed. Let’s not change the name.

    Until research discovers the causative factors of this puzzling disease and we can appropriately re-name the disease, keep the name “Interstitial Cystitis”.

    Inga Legere, Support Group Leader
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    Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.

  • #2
    That is great news but I don't understand why they want to change the name in the first place especially when we don't know what is causing it. I definitely would not want it change either because than we will be back in the same boat we were before. I don't understand the big issue about changing the name.

    Sending hugs, Trishann


    • #3
      Thanks for fighting for us!

      IC diagnosed officially via cysto/urodynamics 1/26/07

      Grade II Endometriosis diagnosed via lap 12/11/07

      "Fall down seven times, Stand up eight."

      "Life is a tragedy for those who feel and a comedy for those who think."

      Current Treatments:
      Interstim Since 5/25/07!
      Birth Control


      • #4
        Hmmmmmmm this is the first time hearing this !!!
        Thanks Jill..

        Thinking positive has got me through to another day!!


        • #5
          wow what a great letter. I do not think they should change the name either. Thats like telling changing the name of strep throat to painful red throat.. it makes no since whats so ever, and I have been pretty annoyed with it since the subject appeared.
          I second that: THANKS FOR FIGHTING FOR US
          'The will of God will never take you where the Grace of God will not protect you.'


          • #6
            I hope the name doesn't change. I know it superficially sounds like a good idea and it's descriptive, but, as the Canada group said --- it's taken a long time to educate the medical community and it would be a shame to have to start from scratch again.

            Stay safe

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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 agree with everyone else. I feel that some people, weather it be in the medical community or just people in our lives do not believe that IC is real. If we change the name that gives them more reason to question it. What other medical condition, or diesease have you ever heard of that changed it's name after 20 years of research. I'm afraid that it would give people an excuse to say we don't have a real medical problem.

              I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
              1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
              2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
              I have tried every oral medication as well as rescue instills and DMSO.

              I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

              Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
              Also proud mom to the best Bullmastiff on earth, Claus


              • #8
                I hope they don't change the name either, I know they have been thinking about changing the name for awhile. But the medical community is just now beginning to know what Intrestitial Cystitis is along with the general public - I mean, when people ask me what I have I can actually say I have this and most of them have said I have heard of it! So to change it would be like starting all over.

                Thank you so much Inga legere for the letter! it is much appreciated.


                • #9
                  I second that, I do not think they should change the name either. I think they should be looking into a cure for this disease, not a name change. So many doctors have no clue what interstitial cystitis is as it is, if they change the name, there will be even more doctors who are in the dark about it.
                  I mean "painful Bladder syndrome" just means painful bladder. Well with IC, there are soooo many more symptoms other than the pain. Look how long the name interstitial cystitis has been around and still not everyone has even heard of it or when hear the word cystitis, right away they link it to bladder infection, so that is not good either in my opinion, but changing the name would be a bad idea in my opinion and would confuse these already confused doctors even more! I say we should stay with the name we have. Thanks for fighting for Us!!


                  • #10
                    IC name change

                    Hi! I definitely feel that a name change from Interstitial Cystitis to Bladder Pain Syndrome would harm the care of patients suffering from this disorder. I have just recently been diagnosed with Interstital Cystitis and am shocked to find how little doctors know about this disorder or how to treat it. My own family physician says that in 30 years of practice he has had only 3 patients who have been diagnosed. My diagnosis was done by cystoscopy during bladder lift surgery. I still have not found a urologist in my area who treats this disorder. I am presently finding some help from a very good naturopath.
                    Please add my name to the list of those who do not want to see what is already a complicated life made even more complicated by this hare-brained idea to change the name. Respectfully, Ruth