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Just Diagnosed in January

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  • Just Diagnosed in January

    Hello Everyone! I am new to this. I was diagnosed with I.C. on January 11, 2006. Before that I had an Urethral Diverticulum removed in April of 2006. I thought I was just having continued symptoms from that surgery. My urologist gave me pamphlets on I.C. to read. I also came to this website to get more information. I had the cysto and hydrodistention in January. I am glad to know that I am not alone and glad for the diagnosis. But, it is alot to swallow. I am trying to follow the diet but sometimes it is really tough. I have been having pain daily. Is that normal? My uro has me taking "bladder treatments" once weekly for 6 weeks. This afternoon I will be going in for my 5th treatment. I have not witnessed to much of a result from far. I am currently taking a pain medicine, Sanctura,Vistaril, and Imprimine(?) at night. The last 2 meds my uro said would help me to sleep but I haven't noticed that effect. Any advice you have would help alot. Thanks! bbtex
    Last edited by bbtex; 02-20-2007, 07:21 AM.

  • #2

    Glad that you found the boards. First off, I hate to be the bearer of bad tidings, but the IC diet is really important for most people. However, you will be happy to know that if you follow the diet strictly for about two to three weeks, then slowly add things back in, you should be able to identify the particular trigger foods that affect you, and you can add back most of the other stuff. For example, I cannot have any caffeine at all, but others can. I can drink most types of alcohol, while some can't. So it's really an individual thing that you have to figure out.

    There are many medicinal options and combinations to help treat IC symptoms, so if you still don't feel relief from your instillations, you may want to look into changing up your meds, adding maybe Elmiron to start working to heal your bladder. Just work together with your doctor to find the best combination for you. And if necessary, find a new doc that has a good IC background.

    Good luck and again, welcome to the boards!


    "A heart is not judged by how much you love; but by how much you are loved by others."
    ~ The Wizard of Oz

    "If I ever go looking for my heart's desire again, I won't look any further than my own
    back yard. Because if it isn't there, I never really lost it to begin with!" ~ Dorothy


    • #3
      Glad you found us...

      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.


      • #4
        Thanks for your replies. I am trying to follow the diet. I find I really miss my caffeine after lunch. I start to have a sinking spell around 2:00 to 3:00 p.m.
        I haven't really had any headaches from lack of caffeine. That is a positive. In the morning, I usually have a cup of 1/2 caff. coffee. I haven't really noticed any ill effects from that. I'm interested to see when my uro. will put me on oral Elmiron. I haven't had any alcohol for 2-3 months. I'm scared to drink because I don't want to feel bad.