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  • Appt tomorrow

    I found a Uro-GYN in my town that I will be seeing tomorrow. I am really nervous because his website says he does the potassium test. Is it absolutely necessary to do this test? They have ruled out any other problem I could be having and I'm in a flare currently and am really scared this test will make it worse. Also he does Heparin instills and says he has success with this. I've heard these are painful too. I am so nervous I'm going to have to take an anxiety pill before my appt tomorrow. The thought of anyone touching me down there during a flare is anxiety provoking. Charisse
    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

  • #2
    I will say that everybody is different but the PST was really not that bad for me. I wasn't in a flare when I had it but it only burned for a second and then when I told them it hurt they removed it and put in a resue instillation. I went to work afterwards and was fine. Hopefully you'll have the same experience that I did. Good luck
    Christine



    I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
    1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
    2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
    I have tried every oral medication as well as rescue instills and DMSO.

    I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

    Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
    Also proud mom to the best Bullmastiff on earth, Claus

    Comment


    • #3
      I will be keeping my fingers crossed for you. Maybe ask him if this is the only way he tests for IC. Personally I think there was nothing worse then the Hydro an really hope I never have to have one again.

      Comment


      • #4
        The "heparin" instill is usually heparin, lidocaine, and sodium bicarbonate. Unless you are allergic to one of the ingredients, it is usually very soothing.
        Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
        Wishing you happiness and good health, and all the best out of life.

        Peace, Carolyn
        ___________________________________________________

        Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


        On the Beach with IC

        Comment


        • #5
          How did it go?

          How did it go?
          Quit ELMIRON due to hair loss
          Cystoprotek ROCKS!

          find me on FACEBOOK -
          search my email [email protected]

          Current Meds:
          AM Cystoprotek & ATARAX 50mg
          Dinner CYSTOPROTEK
          PM Elavil 25mg

          Comment


          • #6
            Appt today

            My appt is not until 3:00 p.m. Pacific Time. I'm in California. In the meantime my regular GYN called me back last night and spent over 15 mins on the phone with me. He is very willing to help me and is going to call another urology group and discuss my symptoms. He was shocked to hear how badly I was treated by the other urologist. He agreed that seeing another GYN with the proper equipment to do instills might be better since urologists mainly deal with men. I at the very least felt validated that I'm not going insane. I will be sure to update you guys after my appt tonight. I'm still pretty nervous. Charisse
            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

            Comment


            • #7
              Back from the uro-gyn

              Well I'm glad I went to see him although he wasn't able to do the potassium test today. I go back tomorrow at 2:00 and he'll do the test then. He said it really does sound like it's IC and that his recommendation would be to do heparin instills 3 times a week for a few weeks and then once a month if I wanted to keep the pain down. He also mentioned Elmiron orally for 6 mos. I'm scared about the nausea and hair loss side effects of Elmiron. Does anyone have luck with heparin instills only? Thanks again for all your support! This dr seemed confident that he could get me to feeling much better. He said he has many patients with severe IC that have gotten 100% relief from the instills. Charisse
              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

              Comment


              • #8
                my theory on hair loss

                if you are the skinny person in the office..who is always cold...you will experience hair loss.

                at least thats me
                Quit ELMIRON due to hair loss
                Cystoprotek ROCKS!

                find me on FACEBOOK -
                search my email [email protected]

                Current Meds:
                AM Cystoprotek & ATARAX 50mg
                Dinner CYSTOPROTEK
                PM Elavil 25mg

                Comment


                • #9
                  skinny girl . .

                  Well I am cold a lot and have been told my thyroid is borderline but I'm not thin What kind of treatment do you use now that you can't use Elmiron? And did your hair come back? Charisse
                  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

                  Comment


                  • #10
                    re

                    I quit the elmiron...and in its place i took desert harvest aloe vera
                    and elavil at nite
                    i did great for 8 weeks,,

                    but the hair was still falling out..after being off it elmiron for 8 weeks
                    i freaked out..and quit the elavil too
                    the hair loss slowed
                    but i flared for 2 weeks

                    now i am back on elavil, desert harvest..and ive added Atarax
                    Quit ELMIRON due to hair loss
                    Cystoprotek ROCKS!

                    find me on FACEBOOK -
                    search my email [email protected]

                    Current Meds:
                    AM Cystoprotek & ATARAX 50mg
                    Dinner CYSTOPROTEK
                    PM Elavil 25mg

                    Comment

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