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  • What if my PTNS therapy fails?

    I currently have five PTNS treatments to go before I'm certain that PTNS has been the right path to go down. The nerves around my bladder (sacral nerves, right?) are apparently screwed up. What if my PTNS therapy fails? I don't want to get an Interstim or similar device installed in my body! Is even getting tested for a bladder pacemaker particularly risky? Neither oxybutynin nor trospium worked for me. I've already undergone pelvic floor physical therapy, but the physical therapist who primarily worked with me has believed that I've plateaued. I do have Kaiser Permanente.

  • #2
    Re: What if my PTNS therapy fails?

    What haven't you tried?
    My doctor keeps saying that interstim is a serious consideration for me because my main symptom is frequency. I know it is risky, but I am seriously considering it if all else fails. And I have not gone through it, but I have read up on it a lot. I have not heard anyone say that the initial test is risky because everything is out of your body. I think most people have complications once it is in.
    ----
    Diagnosed Nov 14 via hydro with cysto
    --
    Tried and Didn't work:
    -Hydrodistension
    -Oxybutinin, Troviaz, Vesicare, Cyrotec, Trumadol, cimedidine, myrbetriq, sancuria, imetidine
    -Tried DMSO instill twice and could not hold it for more than 15 min. Put me in 10/10 pain for days.
    -Tried Elmiron
    -Pelvic floor therapy for 2 months Returned this month
    -Interstim Advanced Trial, Pudendal Interstim Trial
    -Gabapentin cream for VV
    - Botox in the pelvic floor & Bladder, Pudendal Nerve Block

    Tried and did work:
    elavil for pain only 25mg a night
    Trying: psychological therapy, doxepin 25mg at night
    Diagnosed:
    PFD, Vulvar vestibulitis, IC

    Comment


    • #3
      Re: What if my PTNS therapy fails?

      I went in for a yearly checkup at my urologist's office. My MIL got the interstim about 5 months ago for OAB. It has really helped her. I was telling him this and he told me he has had many patients who swear it has changed their lives (as far as frequency goes).
      Jane
      Diagnosed 1/7/14 via cysto/hydro

      Current Treatment:
      10 mg amitriptyline, DH Aloe Vera

      Used During Flares:
      Uribel, extra DH Aloe Vera, Klonopin and Tramadol (as needed)

      Practicing bladder training and stress control (hot baths, pelvic stretching)
      Recently tried PT, do not appear to have PFD

      Things that have not helped in the past:
      Oxybutynin, Vesicare, Pyridium, Myrbetriq, Vagifem

      Also have migraines and IBS

      Comment


      • #4
        Re: What if my PTNS therapy fails?

        Originally posted by my2boys99 View Post
        I went in for a yearly checkup at my urologist's office. My MIL got the interstim about 5 months ago for OAB. It has really helped her. I was telling him this and he told me he has had many patients who swear it has changed their lives (as far as frequency goes).
        Are you considering it? Yeah, I know a few people with retention who it has worked out amazingly for.
        ----
        Diagnosed Nov 14 via hydro with cysto
        --
        Tried and Didn't work:
        -Hydrodistension
        -Oxybutinin, Troviaz, Vesicare, Cyrotec, Trumadol, cimedidine, myrbetriq, sancuria, imetidine
        -Tried DMSO instill twice and could not hold it for more than 15 min. Put me in 10/10 pain for days.
        -Tried Elmiron
        -Pelvic floor therapy for 2 months Returned this month
        -Interstim Advanced Trial, Pudendal Interstim Trial
        -Gabapentin cream for VV
        - Botox in the pelvic floor & Bladder, Pudendal Nerve Block

        Tried and did work:
        elavil for pain only 25mg a night
        Trying: psychological therapy, doxepin 25mg at night
        Diagnosed:
        PFD, Vulvar vestibulitis, IC

        Comment


        • #5
          Re: What if my PTNS therapy fails?

          Well, let's just say I'm keeping it in mind if all else fails. I've been doing pretty good treating my flares with uribel, klonopin and amitriptyline. I've got samples of myrbetriq to try if I ever want to, and I would definitely consider another hydro, since the first one seemed to really help me. I've also never tried Elmiron, but I am very susceptible to headaches, so I'd rather avoid that one since that's one of the side effects.

          My MIL went from having accidents all day and using the bathroom about every half hour to no accidents and being able to hold it for 2 hours. That's awesome for her!
          Jane
          Diagnosed 1/7/14 via cysto/hydro

          Current Treatment:
          10 mg amitriptyline, DH Aloe Vera

          Used During Flares:
          Uribel, extra DH Aloe Vera, Klonopin and Tramadol (as needed)

          Practicing bladder training and stress control (hot baths, pelvic stretching)
          Recently tried PT, do not appear to have PFD

          Things that have not helped in the past:
          Oxybutynin, Vesicare, Pyridium, Myrbetriq, Vagifem

          Also have migraines and IBS

          Comment


          • #6
            Re: What if my PTNS therapy fails?

            Originally posted by my2boys99 View Post
            Well, let's just say I'm keeping it in mind if all else fails. I've been doing pretty good treating my flares with uribel, klonopin and amitriptyline. I've got samples of myrbetriq to try if I ever want to, and I would definitely consider another hydro, since the first one seemed to really help me. I've also never tried Elmiron, but I am very susceptible to headaches, so I'd rather avoid that one since that's one of the side effects.

            My MIL went from having accidents all day and using the bathroom about every half hour to no accidents and being able to hold it for 2 hours. That's awesome for her!

            That's pretty much what I am doing too. I can't kick this frequency. Uribel doesn't help me at all. I have heard of klonopin, but my dr has never mentioned it.

            I tried myrbetriq, and it worked for one week then failed. And it also broke me out really bad.

            I tried Elmiron. It took 3 months to kick it, and it worked great for 4 months. Then it stopped completely even though I was on it for 2 additional months. So my dr was like nvm forget it. I did have headaches for the first week, but it went away. No other side effects.
            ----
            Diagnosed Nov 14 via hydro with cysto
            --
            Tried and Didn't work:
            -Hydrodistension
            -Oxybutinin, Troviaz, Vesicare, Cyrotec, Trumadol, cimedidine, myrbetriq, sancuria, imetidine
            -Tried DMSO instill twice and could not hold it for more than 15 min. Put me in 10/10 pain for days.
            -Tried Elmiron
            -Pelvic floor therapy for 2 months Returned this month
            -Interstim Advanced Trial, Pudendal Interstim Trial
            -Gabapentin cream for VV
            - Botox in the pelvic floor & Bladder, Pudendal Nerve Block

            Tried and did work:
            elavil for pain only 25mg a night
            Trying: psychological therapy, doxepin 25mg at night
            Diagnosed:
            PFD, Vulvar vestibulitis, IC

            Comment


            • #7
              Re: What if my PTNS therapy fails?

              Klonopin has been the best thing for me when I'm flaring. Within an hour or two, my frequency and pressure usually disappear. I only take it in the evenings when I'm flaring because it makes me very relaxed and sometimes sleepy. I know some doctors won't prescribe it because it's a benzo, like valium. I guess I'm fortunate that mine prescribes it. He knows I don't abuse it. It acts as a muscle relaxer and I believe that's why it helps me. I have often wondered if I also have PFD.

              You could try asking your Dr for a script. It's been a life saver for me.
              Jane
              Diagnosed 1/7/14 via cysto/hydro

              Current Treatment:
              10 mg amitriptyline, DH Aloe Vera

              Used During Flares:
              Uribel, extra DH Aloe Vera, Klonopin and Tramadol (as needed)

              Practicing bladder training and stress control (hot baths, pelvic stretching)
              Recently tried PT, do not appear to have PFD

              Things that have not helped in the past:
              Oxybutynin, Vesicare, Pyridium, Myrbetriq, Vagifem

              Also have migraines and IBS

              Comment


              • #8
                Re: What if my PTNS therapy fails?

                Yeah, I have a lot of pressure and frequency 24/7 every single day. :/ It like a constant flare.

                I often wonder if I have PFD too. I have brought it up, but he kind of ignores it.
                ----
                Diagnosed Nov 14 via hydro with cysto
                --
                Tried and Didn't work:
                -Hydrodistension
                -Oxybutinin, Troviaz, Vesicare, Cyrotec, Trumadol, cimedidine, myrbetriq, sancuria, imetidine
                -Tried DMSO instill twice and could not hold it for more than 15 min. Put me in 10/10 pain for days.
                -Tried Elmiron
                -Pelvic floor therapy for 2 months Returned this month
                -Interstim Advanced Trial, Pudendal Interstim Trial
                -Gabapentin cream for VV
                - Botox in the pelvic floor & Bladder, Pudendal Nerve Block

                Tried and did work:
                elavil for pain only 25mg a night
                Trying: psychological therapy, doxepin 25mg at night
                Diagnosed:
                PFD, Vulvar vestibulitis, IC

                Comment


                • #9
                  Re: What if my PTNS therapy fails?

                  People should keep in mind that I have been diagnosed with sensory urgency as well as pelvic floor dysfunction. I have yet to be formally diagnosed with IC. I do admit, however, that I tend to urinate in order to relieve discomfort.

                  Comment

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