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  • Moving on from pills to instills. Scared and nervous!

    I've had IC almost a year now.
    I have major frequency and pain in bladder.

    I have been through a lot of medication.

    Just quickly, here is what didn't work: vesicare, oxybutinin, myrbetriq, sancturia, elavil (but did help pain) elmiron (Worked after 3 months but only lased for 2)


    Here is what did work: Diet and elavil for pain

    My doctor wants me to try instills. He said he starts with DSMO, and if that doesn't work we can try Lidocaine or Heparin. He also said you can mix them.

    I am really freaked out because last time I had a catheter was when another urologist used it to check my bladder for an infection (before ic diagnosis) and the hysto/cysto for the diagnosis.

    He said the catheter is for a kid and is very sterile. I'm still scared but basically am willing to try anything. I don't usually have urethra pain but did when a catheter came near it.

    Has anyone had success with instills for frequency? How often do you get them if so and how long does it take to work if it does?
    ----
    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

  • #2
    Re: Moving on from pills to instills. Scared and nervous!

    Instillations do work for many ICers. However, I think I would go for the lidocaine or heparin before moving to DMSO. There's a link to the American Urology Association Guidelines For Treatment in my signature below. I suggest you have a look at the guidelines to maybe give you some ideas to discuss with your doctor.

    Warm hugs,
    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

    Comment


    • #3
      Re: Moving on from pills to instills. Scared and nervous!

      My instills went terrible. I cried embarrassingly, and the catheter hurt a lot going in. They wanted me to hold it for 2 hrs, but I made it 20 minutes. It now hurts so much when I urinate. I left the message regarding this with my doctor. I kind of don't want to do it again, but I am running out of options.
      ----
      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


      • #4
        Re: Moving on from pills to instills. Scared and nervous!

        You could ask your doctor for something to help you relax for the instillation procedure --- the more tense you are, the more it's going to hurt. I try to relax for them --- what I do is to concentrate on breathing slowly and deeply --- and consciously relaxing my body. It does make it easier. If they instilled DMSO, it can be irritating for several days. I was on DMSO instills for several years --- when I first started, they hurt for several days afterwards. I was almost ready to say "no more" when I woke up one morning and realized I had slept all night for the first time in years. That was enough to convince me and I had the treatments for quite a while before they stopped helping.

        Sending warm hugs,
        Donna
        Stay safe


        Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
        Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

        Have you checked the ICN Shop?
        Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

        Patient Help: http://www.ic-network.com/patientlinks.html

        Sub-types https://www.ic-network.com/five-pote...markably-well/

        Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

        AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

        I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
        [3MG]

        Anyone who says something is foolproof hasn't met a determined fool

        Comment


        • #5
          Re: Moving on from pills to instills. Scared and nervous!

          Thanks for the reply, Donna.

          He still wants me to continue it, but I have not felt any relief. I actually feel 100% worse. My frequency is off the charts. And the day of the procedure, I was in a lot of pain.

          I am really worried it will be a waste of time, but I guess I don't have much of a choice.

          I may be starting a new job soon, so I hope that the job is flexible with trying to get in. It sucks being unhealthy trying to be normal.
          ----
          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


          • #6
            Re: Moving on from pills to instills. Scared and nervous!

            I do instills with Heparin at least 30 weeks out of the year. My OB is awesome and they don't hurt at all. Sometimes a cycle of 6 will give me an 8 week period with no pain at all and eating anything I want. Other times, it doesn't help. No clue why but don't be afraid....they are not nearly as bad as an IC flare

            Comment


            • #7
              Re: Moving on from pills to instills. Scared and nervous!

              Ceera, just checking to see how things are going for you. Are you still trying the instills? I think I mentioned this before to you in an earlier post, but instills didn't really work for me either. I finished the whole course, but I worried that they were making me worse, mostly from the irritation of the catheter.

              What meds were in your instillation? Do you think the irritation was mostly from the catheter? You can try looking into other catheters, if you are still doing the treatment. I found the prelubricated ones are a heck of a lot better than the ones you have to lubricate yourself.

              Comment


              • #8
                Re: Moving on from pills to instills. Scared and nervous!

                Thanks for checking in! I gave up after 2. They were causing me too much pain and making me flare. He thought he would discontinue. It was from the catheter but probly the meds too because it would cause increased frequency.

                We decided to try the interstim since I exhausted everything. I have my trial put in next week. I'm pretty scared!
                ----
                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: Moving on from pills to instills. Scared and nervous!

                  Thanks for checking in! I gave up after 2. They were causing me too much pain and making me flare. He thought he would discontinue. It was from the catheter but probly the meds too because it would cause increased frequency.

                  We decided to try the interstim since I exhausted everything. I have my trial put in next week. I'm pretty scared!
                  ----
                  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


                  • #10
                    Re: Moving on from pills to instills. Scared and nervous!

                    Do you mind if I ask what Interstim is?!
                    I still do catheters weekly most months while waiting to see if Elmiron is the answer.

                    Comment


                    • #11
                      Re: Moving on from pills to instills. Scared and nervous!

                      Originally posted by ceera1231 View Post
                      Thanks for checking in! I gave up after 2. They were causing me too much pain and making me flare. He thought he would discontinue. It was from the catheter but probly the meds too because it would cause increased frequency.

                      We decided to try the interstim since I exhausted everything. I have my trial put in next week. I'm pretty scared!
                      Good luck with your interstim trial!! Please keep me posted. I have a uro appointment in a few weeks and am hoping to start PTNS. It'd be interesting to compare.

                      Comment

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