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Great article on IC - rop

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  • Great article on IC - rop

    talks about why it's very damaging to the patient to tell them it's a psychological illness rather than a physical illness. Describes why that myth has been so persistent.

    It also (joy!) states that up to 30-50% of IC'ers do not find relief with any treatment. I know that statistic will be hotly debated, and maybe it's not accurate, I don't know, but I am overjoyed to find that quote here, because I have had doctor after doctor after doctor tell me there was something wrong with ME (psychologically speaking) because the standard treatments for IC did not work for me. "None of my other patients have gotten this far - they all got relief from these treatments..." (The unspoken part being, "so what is the matter with YOU?"

    Anyway, without further ado, here is the link.

    Just click on it and then click on the PDF or whatever to read the full article.


  • #2
    Wow, Lori! That is a great find! I still have no idea how you constantly find the things you do, but you are definately are go to person for the latest information! Whenever I see new information or studies, I dont even have to look to see who wrote the post, b/c 9 times out of 10, it was you.

    Thank you for always sharing your findings. Like your other posts, this one was just printed off by me, and I am sure many others will do the same and file it with the rest of your findings for when we need them.

    Thank you again!



    • #3
      Thanks for posting this, I hope more *correct* information about IC is put out there so that many doctors can stop being ignorant about the disease.

      My first uro pulled the same thing on me when I first went into remission after my ulcer removal and scar tissue repair in 2000.
      He said that most peoples IC goes away and doesn't return, so low and behold mine returned 3 years later and he thought I was lying.
      Now why would anyone lie about being sick? Who likes doctors offices and spreading your legs so doctors and nurses can poke inside you soar spots?
      IC Live Journal


      • #4
        This is a good find, Lori. The problem with this paper is that it was published 6 years ago. The statistics quoted are no longer considered accurate and the studies cited are very old going back as far as 1978. Also, the existence of knowledge of biomarkers, particularly APF and the work done by Dr. Susan Keay and associates, is obviously lacking. None of this, however, negates the validity of the premises presented here. In my opinion, more recent research along with the knowledge gained of APF and other biomarkers gives even more credence to the theory presented in this paper.

        I would love to see a more recent article on this topic that presents more accurate and up-to-date data along with the inclusion of the current knowledge of APF and other biomarkers which provide factual evidence of the existence of IC and the physical damage APF is apparently causing in the bladders of IC patients. Growing knowledge of the physiological changes occuring in the IC bladder give all the more credence to the belief placing psychosomatic blame on the IC patient is damaging to the mental health of that patient. If anyone can find a more recently published article on this topic, I am sure we all would appreciate reading it.

        With current research shedding more light on the causes for physical damage being done to the bladders of IC patients, we now have far more evidence which can be used in a court of law to file charges against those denying the existence of IC and those who persist in supporting the damaging concept of psychological causes for bladder damage and resulting pain. Even though we do not as yet have knowledge of what triggers IC, research is giving us more factual evidence of the damage IC causes. As more and more people are diagnosed with IC and, because we now have this growing body of knowledge of the processes occuring in the IC bladder, we are now seeing more successful lawsuits being won by patients who have been hurt by the ignorant acts of medical professionals, employers, etc.

        It seems logical to me if you combine this published article (and any similar articles you might find) with more recently published studies showing results of current research revealing the damage being done within the bladders of IC patients, you would have a powerful presentation to give to someone still clinging to somatiform beliefs.

        Ulcerative Colitis and IBS
        Pelvic Floor Dysfunction

        Retirement is great! Work is highly overrated!!!
        ---My dear hubby

        Never go to a doctor whose office plants are dead.


        • #5
          Thank you for posting that, Lori

          Hugs and Wishes for Pain FREE days!!,

 ~reducing plastic waste one bag at a time~

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          Me and my Guccigirl... she helps me through those painful hours!