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Any PFD sucess stories?

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  • #16
    That makes sense but I know in my case it would be horribly painful! Glad you have found something that is working so well for you! Sounds like you are on your way to great days ahead.
    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


    • #17
      Yes with that aspect of stuff I am. Now its just getting over this cold and pleurisy and getting my vulvodynia under control.
      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).


      • #18
        I have been doing PT for almost a year now (went to the therapist for about 9 months and now I'm continuing the exercises and such on my own).

        After 3 months of therapy and dilator, I was beginning to have slight pain relief and was able to have pain-free sex for the first time!

        After about 6 months of therapy I was having significantly less pain.

        At this point, I am basically pain-free a couple days a week and when I do have pain it is milder and lasts a shorter period of time.

        My therapy involved dilation, stretching exercises, abdominal exercises, re-alignment exercises, and posture exercises.

        At this point, I could skip a day of dilations or exercises and not be worse for wear. I can't skip it more than a day though or I end up in pain. The re-alignment exercises particularly help because if I get out of alignment, I am in pain!

        I have not yet returned to running and yoga, which I used to do, but I do plan on starting up this summer....slowly. I also have not incorporated kegals yet to strengthen. I just started a new job and am stressed, so I don't want to add more pain. Last time I tried kegals a couple months ago, it hurt, so my body wasn't ready for those yet.

        I have also made a lot of lifestyle changes that help. I know that certain ways of standing, sitting, and lying down make me go out of alignment, so I avoid them, which makes a difference. I'm also careful in how I get out of car or take big steps or do certain activities. PT has made me more aware of things like this.

        I would say after a year, I'm about 90% better. There was this one day about 7 months into PT that I realized that I had absolutely no pain. It was amazing, because for a couple years before that, the days I felt like were pain-free, were actually low-pain days. I had forgotten what it was like to be pain-free!

        I definitely recommend PT. Find a good therapist though. And be dedicated to it. It's hard to be dedicated, but it took a long time for your muscles to get like they are and it will take a long time to get better. But I've really found PT to be life-saving. (Also, just to give you an idea, my PT told me that I didn't have a severe case of PFD--so even for a milder case, it's taken a while for me to get better. Although it's possible that someone with more severe symptoms might have seen more dramatic improvements, I don't know.)

        Good luck!


        • #19
          I had much success with mine. I went for two months and had the internal myofascial work done. I go for a 'tune up' now periodically. I was having severe pelvic floor spasms. I do the stretching exercises now at home. With any IC pain though it is very possible my pelvic floor spasms could return so treating both is probably what I will need to do. Pelvic floor therapists seem to be hard to find but maybe in the future there will be more of them trained since they now know how all that stuff down there is interrelated.


          • #20
            I am still doing well

            I posted a while back on this thread about the sucsess I have had.

            I have about 1-2 pain free days a week. I am no longer seeing my specialist in Brisbane, I see a Womens Health Physio once a week to go over the trigger points. I have not had a bad pain day (pain level 5-6) for about 2 months. Most days are a between a 1 and 3 on the pain scale.

            Bladder training going well I don't go in the night at all now. I go in the day about every 2 hours and drink 2ltrs of water.

            I hope to be completely pain free one day soon. It takes so much work....

            Glad to hear others have had sucsess with this also.
            TMJ Dysfunction 2009
            Vulvodynia and/or PFD 2010
            IC, based on symptoms alone 2010.
            PCOS March 2012

            8 month remission following the birth of my beautiful daughter Imogen Rose 25/12/12....currently flaring and hoping to get remission back, life without IC was amazing!

            Currently using: IC Diet...pain meds as needed
            Medications / treatment tried and discounted:
            Fluconazole 150mg 1 per week for 6 months (yeast)
            Endep 25mg - 4months
            Lyrica 75mg - 2 months - FLARE
            Oxytrol patch - I think this caused retention.
            Countless creams, lotions and potions.
            Cystoprotek - no change in symptoms
            PT - for 1 year
            Various herbs and supplements


            • #21
              Re: Any PFD sucess stories?

              Hi guys.. How r u
              Did any of you guys become symptom free and pain free from physical therapy?? Please let me know your experience.. Thank you


              • #22
                Re: Any PFD sucess stories?

                Hi this massage is for all o you who went to physical therapy to seek relif?? How long did it take to help... Are any of you symptom free from physical therapy??? Thank you


                • #23
                  Re: Any PFD sucess stories?

                  Did any one here get pain free from physical therapy