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  • Pelvic floor therapist

    I believe that most of my problems are due to PFD, but the dr that I see so far hasn't referred me to anyone. Did most of you get referred by your urologist? I'm not sure what to do, I don't have another appt w/my urologist until August! I would be curious to know how to find a good PF therapist on my own.

    Thanks!
    Dona

  • #2
    My urogyne tested me for obvious triggers and didn't seem to think I had any but I am convinced I have PFD so he gave me a referral to a PFD therapist. I have my first appnt next week. Why not call your uro and ask for a slip - there may be one at his hospital so he may know one.

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    • #3
      My urologist referred me to a PT. If you're interested in trying PT give your DR's office a call and explain to him/her that you'd ilke a referral. If the URO doesnt want to cooperate, you can always go through your GYN or PCP.

      Take care, dear
      D
      (\__/)
      (o.O )
      (> < ) This is Bunny. He's on his way to world domination.

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      • #4
        A good test to see if you PFD is to try valium as treatment of relief for frequency/urgency and two 20 min. baths per day (20 min. is a long time, so time yourself.) Dr. Modwin's book gives possible dosages. Many docs don't know how to diagnosis PFD and in reality there is no medical measurement that is totally accurate.

        ads

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        • #5
          Ads - how do you take the Valium? Is it a suppository or a tablet? Thanks

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          • #6
            I have always taken it in pill form for the most part, but have also tried the cream which didn't work for me. There are compounding creams and suppositories as well. You might search the message board for them. Others might post about them.

            My comfirmation of pelvic floor dysfunction was years ago when IC was on the list, but it was severe and not responding to treatments well. I went to a major medical emergency room for hand pain (undiagnosed carpal tunnel) while out of state dealing with the IC, and the doc prescribed valium. I didn't know much about valium and was too afraid to take it while already being on hydrocodone and large amounts of neurontin. After coming home my hand was killing me from carrying luggage and woke up in the middle of the night in agonizing pain, my HMO insurance wouldn't allow me to go to the emergency room, so I swallowed a couple of valium. Eventually, after walking the floors in pain, I feel asleep and woke in the morning and didn't notice my bladder as much. It was like a miracle. Then I remembered reading in Dr. Moldwin's book about pelvic floor dysfunction. Guess I am a little slow. LOL!

            ads

            Originally posted by izazen
            Ads - how do you take the Valium? Is it a suppository or a tablet? Thanks

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            • #7
              ads- I had the same thing happen to me, but only on xanax. I would take one prior to any internal exams, and i would notice afterwards i could walk better and didnt really notice my bladder either.

              I thought it was just coincidence or the xanax calming me down, but of course i now know i have PFD and therapy is helping me.


              If your urologist wont write the script, i would try to see a urogynocologist they are usually familar with pelvic floor problems. Has your urologist done an internal evaluation to see if your muscles are too tight etc?


              Oh and i just started the valium supositories they do seem to be helping.


              Lyme disease diagnosed 11/05
              vulvar vestibulitis diagnosed 2/06 -worst case she has ever seen..very bad.
              IC diagnosed with hydro/cysto- may 17, 2006

              Over growth of lactobicilli found 8/07 treating with doxy.

              Was able to get my first internal exam evaluation for PFD....wohoo 1/18/07:woohoo:

              8/22/07- was able to get my first speculum exam, with pap

              Strep D found in bladder with United medical labs May 2006
              2 strains of strep in stool culture 9/06
              high Strep ASO titre found 10/06

              NEW MED

              Capsasin cream-once a day for 20min,
              BUt wont lie it does burn

              About to start valium supositories for PFD

              Trigger point injections- oct 07

              Current meds:
              Neurontin- 100mg at night supposed to work up to 300mg if i can tolerate it
              Zanaflex 2mg
              IC and low oxalate diet, no sugar diet
              Xanax for appointments to help relax me since they cause so much pain

              Started PT 3/07, PT has really helped me in ways I never knew that it would

              Meds ive tried
              Lyrica
              Klonopin
              Singulair
              Claritin
              Pyridium
              Soma- can barely tolerate half a pill
              Atropine cream- didnt seem to work, although i found out I was applying the creams wrong
              Estradiol cream
              Urelle- caused worse bladder spasm and retention

              Various antibiotics for lyme which caused yeast and made the IC and VV worse

              waiting for the next chronic illness to pop up


              "Did you know?
              Every 15 seconds,
              a person is
              diagnosed with
              interstitial cystitis."
              Source: J. Dimitrakov, MD

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              • #8
                I have been told by my urologist that I don't have IC b/c my frequency/urgency and urethra spasms stop when I take lorazepam (ativan), which is also a benzo, like valium. He has me taking up to 3-1 mg tablets a day. And I also borrowed a friends IC survival guide book and I believe I read in there that exclusions for IC were if your symptoms responded to any valium type, anti-anxiety med. So I am really beginning to believe that I do have PFD. No my dr did not do any internal exam for PFD. I really wonder why they haven't referred me to a PT?? Are these type of therapists hard to find? I have never really heard of PFD before all this happened, so I'm wondering how easy it is to find someone in my area.


                Dona

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