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  • newly diagnosed, question about treatment?

    Hi, I was recently diagnosed with ic a couple weeks ago. I am 27 yrs old, and have a mild case, mainly frequency and urgency with occasional pelvic pain. My doctor wants to start rescue installations 3x a week for 3 weeks, decreasing gradually. it seems as if this treatment is too invasive for a mild case and for a 1st time treatment? ( i did try 50mg elavil months ago with a diff. doctor, couldn't handle side effects) I feel confused and nervous to start this whole process. I would appreciate anyones thoughts/and or experience with this treatment. Thanks a bunch

  • #2
    HI I haven't had the instillations.......but I agree that sounds like a very invasive treatment if you have just a mild case. Also, my dr. said that 50mg of Elavil is more for heart issues than an IC dosage. He recommends 25 mg. for IC. Maybe that would be much better for you......with out heavy side effects.....Good luck to you.....and Welcome! Roxie

    Double Spinal Cord Stimulator surgery 8/09
    Unsuccessful MiniArc sling surgery 12/07
    Dx'd Hypothyroid
    Dx'd Chronic Axonal Neuropathy & Myopathy
    June 2007
    Dx'd IC May 2006 (after suffering for 25+ yrs!)
    First Cysto 1979
    First Hydro 1981 (Many treatments since then!)
    Collagin"Durasphere" injections for urethra
    Gall bladder surgery Aug. 2004
    Gastric Bypass Dec. 2004
    Dx'd: Barrett's Esphogus July 2004
    Dx'd: Vaginal Atrophy 2005
    Bladder surgery 2000
    Dx'd: IBS 2000
    Hysterectomy (fibroids) 1999
    Laminectomy 1989
    Dx'd: Degerative Disk Disorder 1989

    For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
    I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra's amazing stuff!!:woohoo:


    • #3
      You might try the IC diet for a few weeks first if you're having doubts about what you're being told. Some find the diet is a huge help.

      Sending healing thoughts,
      Stay safe

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      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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      Diet list:

      AUA Guidelines:

      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.

      Anyone who says something is foolproof hasn't met a determined fool


      • #4
        Hello and

        I agree with Donna and Roxie, the diet helps so much and my opinion the dr started you on to high of elavil, I started on 10mg and worked my way up to 25mg and it helps so much with the pain..

        And as far as the instills, I do not get them, but have heard they work very well for some people..

        I am sure more people will respond..

        ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!

        Link to Patient Handbook:

        Diet Reference Sheet:

        Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

        Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

        Meds I have Tried:
        Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
        Lexapro< Bad reaction to this med!
        Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

        Dx With IC in Nov 2006 with Hydro/Cysto
        Hydro/Cysto Caused Bladder to Rupture.

        Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.

        ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.


        • #5
          I also think that could be too invasive. I was diagnosed with a mild- moderate case myself at age 21. My doctor really emphasized the diet and put me on Elmiron. Both of those helped me a LOT.


          • #6
            I too was diagnosed with a mild case of IC (although in the beginning I felt as if it was the worse case of IC) My urologist started me with 25 mg of elavil and elmiron. I go to pain management for neurontin and vicodin. After 4 months I noticed a difference. Now after 6 months I feel as if it really has kicked in. It really is hard to take all this in when you first get diagnosed. But there is so much treatment that makes you able to function! Hugs to you and I hope you start feeling better. Nazareen


            • #7
              I agree with the others. If you have a mild case I would not start out with the instillations. I notice you said you tried Elavil but could not handle the side effects. But there are other meds you can try. I dont know if you are on Elmiron or Atarax, but they are pretty much the standard when diagnose IC.

              ALSO the diet can play a huge part in handling your IC. Especially with you having a mild case. Alot of times the diet alone can handle your symptoms. So if you are not doing it, you might think of.

              Personnally I would wait on the instillations and try other treatments first. My this is only my opinon and all of this is your choice.

              Good luck with all.
              God grant me the serinity to withstand the days ahead!!!

              My myspace link...


              In Memory of My Father (Lawerence) 1/25/2007

              Interstim Sept 2001
              1st InterStim Removal May 2005
              2nd Interstim Implanted May 2005
              2nd InterStim Removed March 2007
              Hysterectomy 1999
              Tubes Tied 1997
              C-Section 1996

              Me and my kids

              Taylor (my daughter) Me and my daughter My son Cody and Taylor


              • #8
                Hi! I am new too, just diagnosed last Thursday. I am 32 and am not sure what kind of case I have, I don't have frequency/urgency but rather pelvic pain. I was put on Elmiron - 100mg right now, building up to 300mg. I had my first instillation of heparin, lydacaine and sodium something or other (can never remember!!)on Monday. I go again tomorrow. I am getting 2 a week for 2 weeks then once a week for 4 weeks. My doctor pretty much made it like the rescue instillations were protocol and said he has had great success with them. If you just have frequency/urgency, I would think eliminating coffee and chocolate and caffeine would be beneficial for you. I am on the IC diet, but haven't noticed much of a difference yet. I do pee less since I'm not drinking coffee though Like I said though, frequency was not an issue for me.

                I know the other treatment DMSO or something has some bad reviews. Is that what your doctor wants to do, or just the rescue ones?
                Last edited by soccermom32; 03-07-2007, 10:01 AM. Reason: Typo


                • #9
                  I agree with soccermom find out what kind of instill they are. I personally, refuse to have DMSO or whatever its called because although my signature shows all kinds of meds I am very concered about what I put into my body...Industrial Solvent at any dilution isn't something I will ever allow.

                  IC diagnosed officially via cysto/urodynamics 1/26/07

                  Grade II Endometriosis diagnosed via lap 12/11/07

                  "Fall down seven times, Stand up eight."

                  "Life is a tragedy for those who feel and a comedy for those who think."

                  Current Treatments:
                  Interstim Since 5/25/07!
                  Birth Control