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  • #1

    First heparin instillation today ... really nervous

    My flares don't seem to be going away for more than a couple of hours a day and the medication does not seem to be working for me anymore (Elmiron, Atarax and just restarted taking Vesicare). I am really nervous about today's appointment; mainly of being catheterized (not sure if that is even a word).

    I am so frustrated and feel as though I have no life anymore, I am glad I came to this site because I am feeling so alone and misunderstood at this point. Can any of you share your first experiences with me and possibly (hopefully), calm my nerves?

    I would really appreciate any advice you can offer.
    Tags: None
  • #2
    ((hugs)) The rescue instillations always help me - and they help me fast! By the time I get dressed and I leave the office feeling better than I walked in. I do them at home now. Just try to relax and remember that even though this is your first time being catheterized, it's not their first time putting one in! For me, I needed to find the right cath that was most comfortable. After some trial and error, because of my urethral issues, I ended up with red rubber pediatric. So, if what they try first really bothers you, ask if you can try another type. It was no where near as bad as I thought it would be. The first few pees after are a little stingy but then it feels better. Good luck! Hope this gives you some relief!
    Diagnosed with IC 2008 via in office cystoscopy and symptoms

    Current treatments:
    -At home rescue instillations as needed
    - IC diet
    - Meds for IC: Vistaril (I have tried a TON but discontinued all but the Vistaril)

    Other diagnosis - Urethral Syndrome, Vulvodynia, PFD, Pelvic Congestion Syndrome, Pudendal Neuralgia (Clitoral Branch)

    Boston Scientific Spinal Cord Stimulator Implanted July 31, 2013

    Comment

    • #3
      I did 6 weeks of Heparin instills. They didn't work for me, but that doesn't mean they won't work for you. I found that it was always more painful right around the time of my period. I have severe pelvic floor dysfunction which contributed a lot to the pain. I took more pain medication than usual about an hour before I went & sometimes helped. If you have valium suppositories, I would definitely recommend using those before you go. Just know, that they are not as bad as we make it out to be in our head. I thought for sure I would faint in the process, but I made it through and it's one more thing I can cross off of my list to get closer to the solution. I hope everything goes well today!!
      Things that work:
      HEATING PAD!
      hot baths
      ice packs
      vaginal suppositories-->valium/lidocaine
      at-home bladder instillations:
      Heparin(40,000IU) & lidocaine(15mL)
      Tramadol 50 mg. 4x day
      Gabapentin 900mg. 3x day
      Zanaflex as needed
      Dye-free Benadryl at night

      Things that don't work (for me):
      Negativity!
      Amitriptyline
      Elmiron

      Always looking to chat!
      email: [email protected]

      Comment

      • #4
        I never got much help from instills but for those here who do benefit they all seem to notice immediate relief. Remind yourself you won't know the benefits you could be missing out on until you try! I like the above poster who said remember they do these all the time. Ask for a bit of lidocaine to be shot up into your urethra before they insert the catheter. My old Uro-GYN's office used to do this. I also had better luck with a red rubber cath or a pediatric sized catheter. And if you have Valium or Ativan or Xanax then I would take a bit beforehand as long as you have a driver. Otherwise nice deep breaths and lots of reminders to relax the muscles down there. The pain with urination is usually only for a few hours afterwards. Good luck and let us know how it goes!!
        The combo of things that brought me out of remission were artificial sweetners, liquid vitamins with citric acid, tight pants, lower body workouts and stopping all my allergy meds cold turkey during height of allergy season. I wish I knew back then what I know now about IC
        First IC symptoms Spring of 2000; In-office cystoscopy 2002 -negative; Remission until 2007 (yeah!!); Negative PST spring of 2007; IC diagnosed via Cystoscopy and Hydrodistention 7/24/07; Another In-office cystoscopy 4/9/10 with biopsy showed inflammation
        Treatments for my IC/PFD: Elmiron 400 mg per day; walking, Zyrtec, Claritin, Singulair, Neurontin 100 mg per day; Ice packs and laying down; About to try Cytotec
        Tried and Failed: Heat (always makes me worse!), Heparin instills -too painful for my urethra; Atarax (interfered with my quality of sleep first time, second time dried my bladder out; Elavil makes me sick, lidocaine patches (just plain don't work), Cystoprotek (only tried a couple months but didn't seem to do much), Aloe Vera caps, pelvic floor therapy, trigger point work flared me worse, Lyrica (bad stomach pain)
        Other Diagnoses: PFD 2009; Fibromyalgia 2006, Osteopenia 2012, GERD 2006, Gastroparesis (delayed gastric emptying) Anxiety: Other medications: Ambien, Dexilant, Ibuprofren, Necon 1/35, Voltaren gel for tailbone
        BABY GIRL 10/28/08 *** BABY BOY 7/8/11

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        • #5
          Thank you so much for the words of support. I did it! No pain, just discomfort. I took an ibuprofin one hour before my appointment and that may have helped.

          Thank you again for the support. I have had IC off and on for 20 years; it got bad the last 5 years and I was finally diagnosed. I have felt so alone for so long. I appreciate this forum and the people involved so much!!! I don't feel as alone anymore.

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          • #6
            How can this be? Finishedinstallation an hour ago and now my bladders on fire. Can Installations make your flare worse?

            Comment

            • #7
              I'm sorry that you are having burning now. I'm on week 2 of heparin instills, and my first week was a little sore, especially by that Friday, but this week has been better. I had one yesterday and I was like, ok, so this happened and that was it. I have no idea if they are working. I guess it has been too little time. Try a heating pad or a cold pack. Maybe that will help. Hope you feel better soon
              ----------------------------------------------------
              My blog on IC, adoption, and academia: the garlic whisperer

              Diagnosed Jan 2013. Currently taking:

              200mg Elmiron morning and night
              25mg Elavil at night (no drowsiness or weight gain)
              culturelle in the morning
              SLIT drops for allergies (environmental) 3 drops/night under the tongue
              zyrtec 24 hour nightly (recommended by uro)
              Instillations 3x/week: Parson's Solution
              uribel and prelief as needed

              Also took Desert Harvest Aloe (3 in the morning and 3 at night) for a year and had great luck.
              No longer need them, so I only take them during flares.

              Comment

              • #8
                Depends on what the components of the instillation are. (If DMSO is part of the formula, it usually causes some burning, but is worst only the first or second time). Also the size and type of catheter can make a difference. Even though I'm not officially allergic to latex, latex catheters really give me an after-burn. I also found that lidocaine burns like crazy, but for me, marcaine does not. Sometimes it takes a few adjustments to get the instillations most comfortable. I think it took trying several types of catheters, the two types of anesthetic, and adding a little sterile water (for volume) til I got the right mix.

                Hang in there! Wishing you better days soon!
                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
                Source - Pinterest
                "

                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!

                Comment

                • #9
                  Originally posted by bugnsue View Post
                  How can this be? Finishedinstallation an hour ago and now my bladders on fire. Can Installations make your flare worse?
                  It could be from the instillation, but also could be the ibuprofen --- some ICers (me included) have a problem with ibuprofen.


                  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.

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                  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

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                  • #10
                    Do you know what is in your mixture? That may need to tweaked to best suite you. Everyone is so different, but for me it was immediately relief not burning. Sorry you are hurting!!
                    Diagnosed with IC 2008 via in office cystoscopy and symptoms

                    Current treatments:
                    -At home rescue instillations as needed
                    - IC diet
                    - Meds for IC: Vistaril (I have tried a TON but discontinued all but the Vistaril)

                    Other diagnosis - Urethral Syndrome, Vulvodynia, PFD, Pelvic Congestion Syndrome, Pudendal Neuralgia (Clitoral Branch)

                    Boston Scientific Spinal Cord Stimulator Implanted July 31, 2013

                    Comment

                    • #11
                      I had my second instillation and it went much better. There was still discomfort from the insertion of the catheter; however, no burning (yay)!

                      I do seem to have the symptoms (heaviness, urgency and pain) when I go to the bathroom after the instillation, so I am going to keep going to see if I get any relief. I understand that it can take a while before you feel relief?

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                      • #12
                        Originally posted by bugnsue View Post
                        I had my second instillation and it went much better. There was still discomfort from the insertion of the catheter; however, no burning (yay)!

                        I do seem to have the symptoms (heaviness, urgency and pain) when I go to the bathroom after the instillation, so I am going to keep going to see if I get any relief. I understand that it can take a while before you feel relief?
                        I felt awesome relief while the mixture was in my bladder so I would hold it as long as I could (at first it was hell due to the intense urgy feelings and would sweat and stare at my watch I set as a timer but eventually I could hold it for hrs.). The pain was relieved instantly with the instills while they were in. It was however easily 6 weeks of 2xweek instills before I think I felt sustained relief and a better overall bladder. Until then, once I would urinate the mixture out, the relief was gone. Good luck!
                        Diagnosed with IC 2008 via in office cystoscopy and symptoms

                        Current treatments:
                        -At home rescue instillations as needed
                        - IC diet
                        - Meds for IC: Vistaril (I have tried a TON but discontinued all but the Vistaril)

                        Other diagnosis - Urethral Syndrome, Vulvodynia, PFD, Pelvic Congestion Syndrome, Pudendal Neuralgia (Clitoral Branch)

                        Boston Scientific Spinal Cord Stimulator Implanted July 31, 2013

                        Comment

                        • #13
                          The istallations always feel great right after , the pain meds they put in to numb has not yet worn off--but when they do--my treatment is a cold hose directly to pelvic floor far about 20 minutes. They don't do much for me tried agin a few weeks ago with little luck and a big fat 2000.00 bill --urologist are doing the same things they have done for years and of little help to us --Ive had IC 12 years tried it all, I think there needs to be more looking into stem cell research and the use of non invasive pain drugs like sarapin for nerve blocks possible installatons. IC patients appear to be on the back burner for research and doctors just won't try alternative things that could be very helpful

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                          • #14
                            Third instillation; again, after I hold the heparin in my bladder for one hour (they say 30 minutes, but I hold it longer) they pain and urgency is just as bad if not worse, for at least two days.

                            How long should I keep trying instillations before I give up?

                            Sue

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