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  • Can rescues cause flares?

    Hi, everybody! I'm new to the ic-network family. Diag'd IC after 1 year of symptoms...had my second rescue instillation(heparin/lido) this week. The 1st caused irritation with urination for 24 hrs, but the 2nd seems to have caused a flare. Normal urinate every 1 1/2 hrs, but for the last 2 days, it's been between every 15 -30, finally seeming to calm down a bit this evening (although last evening was easier vs. the day, too). I'm just wondering if the instills are worth it if it causes a flare? I don't know if I've ever had a true UTI, so I kind of think it's not that...has anyone else experienced flares afterward?? Thanks!

  • #2
    Yes, I had a similar experience with the same type of instillation. I had success with them for at least 5 or so times before I had these symptoms. I didn't have an infection. If the flare calms down within a reasonable amount of time, I would continue getting the instills. It was my experience that it didn't, so I stopped them. This summer I'm trying a new cocktail.
    ----------------------
    -Amanda
    34 years old, bladder symptoms all my life
    diagnosed with PFD and VV October 2009; IC May 2010

    Current meds:
    Cystoprotek 2 pills twice a day, Hydroxyzine 10 mg, Gabapentin 600 mg, Myrbetriq 25mg, Zoloft 25 mg, Mircrogestin, capsaicin cream (for vulva)
    Other past treatments:
    IC diet, physical therapy, Traumeel injections as needed, TENS unit, heating pad, instills with sodium bicarb, lidocaine, and mucosa compositum
    Tried and didn't work:
    Pyridium, Singlair, Nortriptyline, Elmiron, lidocaine and heparin instills (worked at first, then didn't anymore), various creams, acupuncture

    Comment


    • #3
      I'm curious about the type of instillation you're trying next. Also, I notice you've used a TENS unit. Did you have treatments with a TENS or do you own one?

      Comment


      • #4
        Holly, I started off with TENS treatments just at PT, but I've had my own for over a year now. It's a great help for me since I get low back pain from my pfd. Plus, it's nice to be able to put the pads over my bladder if I'm flaring. Your doctor or PT can help you purchase one, I'm sure, if you're interested in having one at home.
        ----------------------
        -Amanda
        34 years old, bladder symptoms all my life
        diagnosed with PFD and VV October 2009; IC May 2010

        Current meds:
        Cystoprotek 2 pills twice a day, Hydroxyzine 10 mg, Gabapentin 600 mg, Myrbetriq 25mg, Zoloft 25 mg, Mircrogestin, capsaicin cream (for vulva)
        Other past treatments:
        IC diet, physical therapy, Traumeel injections as needed, TENS unit, heating pad, instills with sodium bicarb, lidocaine, and mucosa compositum
        Tried and didn't work:
        Pyridium, Singlair, Nortriptyline, Elmiron, lidocaine and heparin instills (worked at first, then didn't anymore), various creams, acupuncture

        Comment


        • #5
          Yes, icers can have flares after instills. Some of the reasons that might cause flares are:
          Type of catheter (latex free)
          Size of catheter
          Ingredients in instill
          Technique of person doing the instill

          Tens units must have a prescription to be covered by insurance. On my policy the unit was covered under durable goods, not pharmacy benefits.
          TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
          My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

          Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
          Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
          I post to encourage and offer total support for rescue instillations.
          Find me on facebook: L. Clark Thomas
          Louann

          Comment


          • #6
            In the United States a TENS unit requires a physician's order even if insurance is not involved.

            Donna
            Stay safe


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            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


            • #7
              Compositum

              So, I just had instill #8...I have had some good days, but overall, I'm not sure I'm progressing. I would have thought that my major symptoms of urgency/frequency would have subsided more. We have planned to do 2 more and if that's not working an instill with Compositum. Any one have good results with that? (I'm also starting PT next week - pray that helps, too!)

              Comment


              • #8
                Originally posted by hollyic View Post
                So, I just had instill #8...I have had some good days, but overall, I'm not sure I'm progressing. I would have thought that my major symptoms of urgency/frequency would have subsided more. We have planned to do 2 more and if that's not working an instill with Compositum. Any one have good results with that? (I'm also starting PT next week - pray that helps, too!)
                Hi Holly,
                The instills with the compositum are going great overall! I just had my 8th one yesterday. I'm going to taper down to once every 2 weeks instead of every week. I've experienced less frequency and urgency, and had no problems transitioning back in to work. (I'm a teacher, and usually I have issues with the rigid schedule and bathroom breaks.) I even had 2 nights recently when I didn't get up to pee. Unheard of for me! The only strange thing is that the instills tend to leak out after about 20 minutes, but none of my practitioners seem too concerned about it. There really isn't any literature published about using this for the bladder. (I'm surprised since I see someone at a practice that publishes a lot.) But yes, doing well.

                I hope PT turns out to be as big a help to you as it has been to me.
                ----------------------
                -Amanda
                34 years old, bladder symptoms all my life
                diagnosed with PFD and VV October 2009; IC May 2010

                Current meds:
                Cystoprotek 2 pills twice a day, Hydroxyzine 10 mg, Gabapentin 600 mg, Myrbetriq 25mg, Zoloft 25 mg, Mircrogestin, capsaicin cream (for vulva)
                Other past treatments:
                IC diet, physical therapy, Traumeel injections as needed, TENS unit, heating pad, instills with sodium bicarb, lidocaine, and mucosa compositum
                Tried and didn't work:
                Pyridium, Singlair, Nortriptyline, Elmiron, lidocaine and heparin instills (worked at first, then didn't anymore), various creams, acupuncture

                Comment


                • #9
                  Did you have leakage before you started doing instills?
                  TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
                  My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

                  Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
                  Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
                  I post to encourage and offer total support for rescue instillations.
                  Find me on facebook: L. Clark Thomas
                  Louann

                  Comment


                  • #10
                    No, the leakage started after about the 5th instill. I didn't experience it last summer when I did lidocaine and heparin instills. I'm wondering if it could be from the oral valium I take, since that's different from last year, or if it's due to spasming...or something else entirely.
                    ----------------------
                    -Amanda
                    34 years old, bladder symptoms all my life
                    diagnosed with PFD and VV October 2009; IC May 2010

                    Current meds:
                    Cystoprotek 2 pills twice a day, Hydroxyzine 10 mg, Gabapentin 600 mg, Myrbetriq 25mg, Zoloft 25 mg, Mircrogestin, capsaicin cream (for vulva)
                    Other past treatments:
                    IC diet, physical therapy, Traumeel injections as needed, TENS unit, heating pad, instills with sodium bicarb, lidocaine, and mucosa compositum
                    Tried and didn't work:
                    Pyridium, Singlair, Nortriptyline, Elmiron, lidocaine and heparin instills (worked at first, then didn't anymore), various creams, acupuncture

                    Comment


                    • #11
                      There are some post on the forum about this same problem. You might try to search and see what they have to say about the problem. Who knows what it might be, but it probably isn't the first time your MD has heard of it. I would just mention it to him on your next visit or if you are concerned just call his office. The only bad question to ask, is the one you didn't ask.
                      TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
                      My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

                      Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
                      Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
                      I post to encourage and offer total support for rescue instillations.
                      Find me on facebook: L. Clark Thomas
                      Louann

                      Comment


                      • #12
                        Pt

                        Skybluesoul,

                        I just had my first PT appt today - the physical therapist is great! She's knowledgable and compassionate, and I'm really hopeful about seeing good results from the things we're planning to try. How long/how many sessions did it take for you to get some relief from your symptoms? from your urgency/frequency(did the PT help that?)?

                        Thanks!
                        Holly

                        Comment


                        • #13
                          Originally posted by hollyic View Post
                          Skybluesoul,

                          I just had my first PT appt today - the physical therapist is great! She's knowledgable and compassionate, and I'm really hopeful about seeing good results from the things we're planning to try. How long/how many sessions did it take for you to get some relief from your symptoms? from your urgency/frequency(did the PT help that?)?

                          Thanks!
                          Holly
                          That's great, Holly! I'm really not sure how much PT helped my bladder, considering I started my current instills around the same time I started doing PT multiple times a week. I'm sure it helped some though. With a good PT who gives you a home program, you should see lasting results within 3 months or so. Might be faster, might be slower. Everyone is different. I do my exercises at home still every night. I stretch every night, and do stretching with strengthening every other night to keep in the good place I've gotten to. I hope you'll see some good results soon!
                          ----------------------
                          -Amanda
                          34 years old, bladder symptoms all my life
                          diagnosed with PFD and VV October 2009; IC May 2010

                          Current meds:
                          Cystoprotek 2 pills twice a day, Hydroxyzine 10 mg, Gabapentin 600 mg, Myrbetriq 25mg, Zoloft 25 mg, Mircrogestin, capsaicin cream (for vulva)
                          Other past treatments:
                          IC diet, physical therapy, Traumeel injections as needed, TENS unit, heating pad, instills with sodium bicarb, lidocaine, and mucosa compositum
                          Tried and didn't work:
                          Pyridium, Singlair, Nortriptyline, Elmiron, lidocaine and heparin instills (worked at first, then didn't anymore), various creams, acupuncture

                          Comment


                          • #14
                            I went for rescue instills and then learned how to do them myself. I always had burning and pain in the urethra after them even with lidocaine. I find that I actually feel better without instills and haven't done them in a few months. I had one done by my uro. back in the spring and think it ultimately caused a UTI.

                            Comment

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