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  • First Installtion coming up and nervous

    So my Urologist has stated that there is probably no point in continuing different medications as she doesn't think nothing is going to work. I am going to be starting bladder installations but I had so much pain after my cystoscopy that I am worried about the catheter . Any tips on what to expect ? She said if the first one I have done is too painful than I can cancel the rest of them
    Cindy

    Diagnosed officially April 8th 2016 after 3 years of misery with Cystoscopy and Hydrodistention that showed bladder bleeds. Blood is always is urine

    Current medications:

    Mybetriq 50mg ( have been on this 3 years probably useless)
    Elmiron 100 mg ( supposed to be 3x a day)
    Also tecta as I have recurring stomach ulcers - I say the acid issues related
    Azo and prelief

    What I have tried and hasnt worked
    Oxybutynin, vesicare,Calcium Citrate 1000mg day Magnesium 500mg day
    Also have IBS

    Also numerous trips to ER and a former Urologist that wanted me to take antibiotics for 6 months as I must not know how to do a urine sample and there must be an infection

  • #2
    Re: First Installtion coming up and nervous

    I suggest you call your doctor's office and ask what's in the solution to be instilled --- then post that information. Some instillations can cause an increase in pain for the first few treatments; others can be soothing from the beginning.

    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: First Installtion coming up and nervous

      Thanks Donna. I am having DMSO
      Cindy

      Diagnosed officially April 8th 2016 after 3 years of misery with Cystoscopy and Hydrodistention that showed bladder bleeds. Blood is always is urine

      Current medications:

      Mybetriq 50mg ( have been on this 3 years probably useless)
      Elmiron 100 mg ( supposed to be 3x a day)
      Also tecta as I have recurring stomach ulcers - I say the acid issues related
      Azo and prelief

      What I have tried and hasnt worked
      Oxybutynin, vesicare,Calcium Citrate 1000mg day Magnesium 500mg day
      Also have IBS

      Also numerous trips to ER and a former Urologist that wanted me to take antibiotics for 6 months as I must not know how to do a urine sample and there must be an infection

      Comment


      • #4
        Re: First Installtion coming up and nervous

        I suggest you read the information at https://www.ic-network.com/forum/sho...highlight=DMSO before you have your first DMSO treatment. And I suggest you ask that lidocaine or Marcaine be instilled to help lessen any pain the DMSO might cause.

        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: First Installtion coming up and nervous

          Noooo! Dont do it, please!
          It is oldfashioned treatment and can ruin your bladder in bad cases forever.

          If you are from US, consider ordering Uracyst from Canada. This is having same effect as Elmiron, only in bladder and without bad side effects.
          It is coating your bladder.
          I have got that instill 3 years, because it needs to be used sort of once per 1-2 months after first stabilization period (more often). 3 years ago I saw during cysto my bladder, it was bloody, inflamed and scary, my uro said it as well. After 2,5 years of it, new cysto--it looked white and nice, like new!!! After this I really believe in it and suggest it.
          In Germany it is first treatment with IC, there it is Gepan (weaker) or Uropol. Next to this German forum suggests Tamsulosin, Tramadol and Amitriptylin, those all 3 I take as well.

          And you should make a blood test to see (gyno) possible hormonal problems and endometriose. After I had lap. op month ago, during doc removed endometriose cells, my bladder is 50-60 % better. Not everybody with IC has also endometriose, but in German forum quite many cases, as we found out.

          I hope you got some new ideas.

          Comment


          • #6
            Re: First Installtion coming up and nervous

            I actually cancelled my appt. I have my flares under control. I dont want to upset the apple cart. Its my frequency that is driving me mad
            Cindy

            Diagnosed officially April 8th 2016 after 3 years of misery with Cystoscopy and Hydrodistention that showed bladder bleeds. Blood is always is urine

            Current medications:

            Mybetriq 50mg ( have been on this 3 years probably useless)
            Elmiron 100 mg ( supposed to be 3x a day)
            Also tecta as I have recurring stomach ulcers - I say the acid issues related
            Azo and prelief

            What I have tried and hasnt worked
            Oxybutynin, vesicare,Calcium Citrate 1000mg day Magnesium 500mg day
            Also have IBS

            Also numerous trips to ER and a former Urologist that wanted me to take antibiotics for 6 months as I must not know how to do a urine sample and there must be an infection

            Comment


            • #7
              Re: First Installtion coming up and nervous

              Have you tried elavil? That is the one med that has helped me the most with frequency

              Comment


              • #8
                Re: First Installtion coming up and nervous

                I refuse to take antidepressants. Long story
                Cindy

                Diagnosed officially April 8th 2016 after 3 years of misery with Cystoscopy and Hydrodistention that showed bladder bleeds. Blood is always is urine

                Current medications:

                Mybetriq 50mg ( have been on this 3 years probably useless)
                Elmiron 100 mg ( supposed to be 3x a day)
                Also tecta as I have recurring stomach ulcers - I say the acid issues related
                Azo and prelief

                What I have tried and hasnt worked
                Oxybutynin, vesicare,Calcium Citrate 1000mg day Magnesium 500mg day
                Also have IBS

                Also numerous trips to ER and a former Urologist that wanted me to take antibiotics for 6 months as I must not know how to do a urine sample and there must be an infection

                Comment


                • #9
                  Re: First Installtion coming up and nervous

                  There's also gabapentin,and that med called Lyrica.Not antidepressants,but work on the nerves similarly to Elavil(I think).

                  Comment


                  • #10
                    Re: First Installtion coming up and nervous

                    Originally posted by cp2369 View Post
                    I refuse to take antidepressants. Long story
                    Oh I see, that's too bad because it is very effective for many
                    How about Atarax? Elavil helped with my frequency but once I paired it with atarax it really took it down to normal levels

                    Comment


                    • #11
                      Re: First Installtion coming up and nervous

                      Hi Cindy,

                      Great question

                      #1 - Don't be afraid of instillations... be informed. We have a great discussion of instillations on our website so that you can learn the pros and cons. Rescue instillations are, by far, the most popular in the USA if not the world. DMSO has slowly fallen out of favor because it can be more painful whereas the rescues genuinely have patients feeling better. https://www.ic-network.com/interstit...instillations/

                      #2 - The choice of catheter makes all the difference. Hydrophilic catheters are the preferred choice for patients doing bladder instillations. These ONE TIME use catheters are very slippery when exposed to water, thus are often much easier to slip through the urethra. However, they must be used within just a few minutes of opening or they become tacky and impossible to insert. Research studies have found that hydrophilic catheters appear to significantly reduce the risk of urinary tract infection. Also, we generally use a smaller size catheter (i.e. 12 to 14 french) to minimize urethral trauma. https://www.ic-network.com/confused-about-catheters/

                      #3 - Make sure you watch our videos from 2016 - The Five Subtypes of IC and the Six Steps of Treatment so the you can learn more about which treatment might apply more to your specific case of IC. https://www.ic-network.com/interstit...-video-series/

                      Hope these help!

                      Jill O.
                      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.






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