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How Many Heparin Instills Did You have?

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  • How Many Heparin Instills Did You have?

    I've had my fourth weekly Heparin instill, but I don't feel much better. It may have helped with pain a little, but the urgency is still intense. Those of you who have had Heparin instills, how many did you have before you noticed a difference? Did they help with urgency, or just pain? I think I'm going insane.

  • #2
    I noticed a difference before I left the office after my first treatment. I think that is why I was so encouraged. It worked the first time and has ever since. I am symptom free if I watch for signs that it is time for a treatment. I do instills as needed which started 6-7 times a week but now maybe 2-3 a week and sometimes less. My instill recipe is in my signature.
    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

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    • #3
      I would get occasional heparin/lidocaine instill every two months or so if I were feeling symptoms. The uro wanted me to do 3 x per week for six weeks to see if we could settle things down. I got a horrible UTI and haven't had one since. They were helpful at the beginning, but at the end they didn't work so well.

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      • #4
        I was having them done 1 time a week for 8 months before I noticed any help from it. It mostly helps with frequency. When the pain is really really bad then it helps with that.

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        • #5
          The first week my urogyn did 3 a week to see how they were going to work. I could tell it was working after the 1st.

          I had 3 more in the office the next week to learn how to do instills and then I started doing them at home.

          I know keeping on top of the flares keeps the flares down. If I wait too long it takes me 3-4 days to get back to normal. He agrees that keeping ahead will keep the frequency of flares down.

          As soon as I recognize any symptoms returning I do an instill right then. If I am going to be away from home more than 24 hours I take supplies to do instills with me.
          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
            When I did heparin I self instilled it twice a day at first, then gradually went to once every two weeks. It did help, but not as much as I wanted it to.

            Donna
            Stay safe


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            • #7
              I do home instillations 3x a week if doing well, daily if flaring.
              They have helped me a lot with frequency, pressure, pain & are a major reason why I am still able to work.

              I noticed slight improvement right away, but it took some adjustments to get them to be really effective. Here's the list of adjustments...

              I burned with lidocaine/heparin/sodiumbicarbonate/sterile water, til my doctor & I made the following adjustments.
              1. Non-latex caths really really helped. I didn't have any indication of latex allergy, but thought it might be worth a try & the nonlatex ones burn much less!

              2. Surprisingly, increasing the size of cath to 12Fr instead of the pediatric 8Fr helped because it moved less & irritated the urethra less.
              Also, the liquid passed through it faster, so I had less time with the catheter in. I think for me, leaving the catheter in would be far more irritating.

              3. I couldn't understand why the DMSO instills I had burned less than these rescue instills. The only explanation I could come up with was that I used Marcaine with the DMSO's, so my doctor agreed to let me try Marcaine instead of Lidocaine, even though he didn't think it would work. BUT it did work, Marcaine is much better for me.

              4. I only held the instills 20 minutes for the first few months on the treatments (even though my doctor insisted EVERYONE was ok at an hour), then I gradually increased the time to about 50 minutes - and that works fine for me.

              5. Also discovered that one of the reasons the instills burned at first was because I was refrigerating the sterile water, thinking b/c it had no preservatives, I should. Uh, no, my bladder REALLY didn't like the cold bath I was giving it. When I thought of it and asked the nurse, she was shocked that I'd had it in the fridge, told me to just keep it at room temperature & I was sooo much more comfortable after that.

              6. I shower before the instill, rinsing really well, but don't use soap, because every single soap I tried irritated the vulva so much, I burned all night. The doctor told me to stop using soap, but to rinse really really well with warm water. The warm shower also relaxes my muscles, so inserting the cath is easier.

              7. After the instill I rinse well with a bottle of warm water, and then rinse again after voiding the solution. If I have any external burning, I pat dry & use lidocaine gel on the outside only.

              Hope you find some things that work for you!
              These instills have dramatically reduced my pain, pressure & frequency!
              Kadi

              -------------------------------------------------------------
              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.
              ------------------------------------------------------


              New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
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              "


              Current treatments:
              -IC diet
              -Elavil 50mg at night
              -Continuous use birth control pills (4-5 periods/year)
              -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
              -Pyridium if needed,
              -Pain medicine at bedtime daily, as needed during the day several times per week
              -Antibiotic when doing an instillation to prevent UTI
              -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
              -Dye Free Benadryl 50 mg at bedtime
              -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
              -Managing stress= VERY important!
              -Fur therapy: Hugging the cat!

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