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Update From AUA #3 - Pelvic Floor Therapy Study Report VERY ENCOURAGING!!

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  • Update From AUA #3 - Pelvic Floor Therapy Study Report VERY ENCOURAGING!!

    In the plenary session today which discussed several research projects, the one true success story was the presentation of the results of a multi center randomized trial of physical therapy in the treatment of IC which represents the first true success of a federally funded IC treatment study. Inotherwords, it proved that physical therapy can and will improve the symptoms of some patients. I'll put the hard data in another posting.

    So... IC researcher and clinician Jorgen Nordling from Europe asked Chris Payne MD from Stanford "Have you had any cures of patients? I've had cures in my practice?" The answer was a qualified ...Yes, we have seen cures .. though I prefer to use the term in remission (I think that's the word he used) ... in patients whose primary pain generator is the pelvic floor.

    I agree. As Dr. Payne reported in the presentation, he has seen patients who were diagnosed with interstitial cystitis by other physicians who, upon his examination, had normal bladders and, instead, severe pelvic floor muscle dysfunction. In these cases, physical therapy eventually completely resolved discomfort for some patients though he acknowledged that the pelvic floor could be hurt again.

    In any case, I found this to be very exciting and, finally, a use of the word "cure" that I can accept wholeheartedly.
    Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

    Looking for books, magazines & reports on IC? Please visit the ICN Shop at: http://www.icnsales.com: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

    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
    PFD study

    do you have a link on the site for the study?

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    • #3
      excellent

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      • #4
        Jill, Dr. Hanno had told me this study was coming out. My physical therapist, Erica Fletcher in Narberth, Pa. is my #1 line of defense for my IC. Thanks Jill!!

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        • #5
          Awesome news!

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          • #6
            This is the same sort of therapy used on men with the associated condition, Male Chronic Pelvic Pain Syndrome, in the Wise-Anderson protocol.

            There was a presentation at AUA 2010 by Anderson on the topic (see here)

            Note that Dr David Wise himself took a couple of years to achieve a cure when attempting this treatment, so it's not surprising that quite a few of the men surveyed after 7 months did not have complete cures yet. But they were mostly improved and making progress, which is why most of them gave it a thumbs up.

            Why do some cases fail completely (10%)? I don't know, but let me speculate ...
            1. Inability to relax the pelvic floor. I suspect that for many men, the discipline required to stop habitual clenching of the pelvis, especially if one has a sitting job where periods of high concentration are required, is too much.
            2. Undiscovered allergies or intolerances. As I've stated many times on my forum, gluten can give me pelvic pain.


            Yes, it would be nice if everyone was 100% after 7 months, wouldn't it? There are no easy fixes for this condition. But the Quality of Life scores were about 30% better after a half year, which, when you consider this treatment takes a couple of years for full effect, is not too bad.

            Always remember that in a group of refractory patients, like the one used in this study, outcomes are never as good. And the overall averaged figures you are looking at will include some people who are 95% better, and some who are no better at all (for any number of reasons, including non-compliance).

            I also hear that a new study is in process with better outcomes. Stay tuned.

            I think part of the problem with curing this condition is that nerves are involved. Conditions that involve nerves are notoriously slow to heal, so that what one looks for, optimally, is a stratagem that improves the condition incrementally, while allowing the nerves to take their own sweet time returning to a condition of homeostasis. This protocol seems to be doing that. Essentially, the goal is to relax the pelvic floor in whatever ways possible (mind control, manipulation, anesthetization) and so give the nerves a "time out" to allow them to reset. The reset is the unpredictable part, and the longer you've had this, the more fixed the abnormal (ie over-goosed) pathways have become. It's back to the analogy of allowing the grass to grow back over the unwanted pathway by not walking down that pathway all the time.

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            • #7
              Hi,

              Just had to add...I think Dr. David Wise is an amazing man. I had the honor of meeting him several years ago. He just so happens to live about 20-30 minutes from me. I took one of his seminars at his home. He is the kindest and most gentle man. I was having some problems with the methods he taught and he invited me over for a free coaching session. He truly had sympathy for other pelvic pain sufferers and I truly truly got the impression at the time that he would do anything he could to help anyone suffering. He's got an excellent physical therapist on board and also Dr. Rodney Anderson was a Stanford doctor now retired. Just from personal experience, I think Dr. Wise is one of the last people I would insult.....by the way, I have no personal and financial gain from saying any of this.

              Just my thoughts,
              Jill
              "Where there is hope there can be faith. Where there is faith, miracles can occur."

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              • #8
                Just wanted to add

                Hi,
                Sorry to hijack this post for a moment-Mary I got that phrase from you and I love how you worded that. I just wanted to add my 2 cents because I know there have been said some things said about Dr. Wise in past threads.

                Just my thoughts,
                Jill
                "Where there is hope there can be faith. Where there is faith, miracles can occur."

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                • #9
                  Hi Jase,

                  I'm not looking to start anything with you. I do respect your opinion and just wanted to share mine. I personally don't see anything wrong with what Webslave has posted in the past. I think we just have to agree to disagree. We're all here on this forum for similar reasons so I really don't want to lose site of why I joined and get into disagreements with anyone. I apologize if I offended you.


                  Jill
                  "Where there is hope there can be faith. Where there is faith, miracles can occur."

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                  • #10
                    Great news! I know that my personal experience with pelvic floor therapy (which Dr. Payne referred me to) has been most exciting. For me, I had the side benefit that my pelvic floor therapy improved my IC symptoms considerably.

                    It also helped me with my urine capacity issue, too. Prior to PFT, I was up at least 4 times at night and now I am only up 1x night. Every so often, I even sleep through the night, which is a treat.

                    I admit I was a PFT skeptic in the beginning, but due to my progress, I am now a firm believer in the positive benefits of PFT for IC patients with PFT issues.

                    Thanks for sharing this info, Jill.

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                    • #11
                      Ive had IC/prostititis for 3 yrs. I also have PFD. Acidic foods or drinks cause painful bladder flareups. My question is, how does PFD destroy the lining of the bladder?

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                      • #12
                        also i've been wondering...does a damaged bladder wall lining with the pain cause the PFD

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                        • #13
                          Originally posted by sshannon74074 View Post
                          also i've been wondering...does a damaged bladder wall lining with the pain cause the PFD
                          More than likely, yes.

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