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A New Member Looking For Answers

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  • A New Member Looking For Answers

    Hello fellow sufferers!

    This is my first visit to this site. I was diagnosed about six months ago. However like many of you I have been suffering with this disease for years! Again like many of you, I've tried everything possible to alleviate my pain. Nothing has helped, and I live my life from bathroom visit to bathroom visit.

    While nothing I have read can offer an explanation on what causes this disease, I was wondering if any of you out there where cancer survivors!

    I had breast cancer over twelve years ago and had both radiation and chemotherapy. It seems to me like all my bladder problems started shortly after that.

    Looking for answers.


  • #2
    Hello and

    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.


    • #3

      I just wanted to welcome you. I am not a cancer survivor but I would not be surprised if it is the root of some issues. Good luck!


      Have tried DMSO and other treatments but gave up and came off all meds. Canada likes to keep people in pain!!
      Diagnosed in 2005 but suffered since 1998.


      • #4
        to the IC Network Julie! I am not a cancer survivor either but still wanted to say hi. There are so many theories about what causes IC. A lot of people even think that it's different diseases and that is why it is so different for different people and one day it will actually be figured out. It would seem very possible that chemo or radiation could have caused your problems.

        I think that have a bladder surgery several years ago was probably the cause of mine and some say they have had symptoms their whole life. I'm glad you found us, there is so much info here.

        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