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oh, the frustration......

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  • oh, the frustration......

    i just finished meds for the first UTI that i have had in months.. but, my bladder is still not feeling just right.When my culture came back my dr, changed my antibo.. from Cypro.. to Bactrium.. i really think that the bactrim didn't work. ! so i guess , it's back to the urine culture yet again, so depressing .. I have been on elmoron for 4 months and i swear i thought it was working.. has anyone else taken it for this long and had it just simply stop working.???? i am at a loss as what to think.. I think the next step my urolgist will try , it's the cysto with distention.. but, i wonder if it does put a name to my problem.. , will the treatment be different??? and i wonder how hard the cysto is on the bladder and what is the recovery time???

    On top of all of this.. i had a bone density test today.. and now my ortrop. wants me to start Boniva.. just what i need something else that might eat at my bladder .. boy , i tell ya.. i am starting worry about my sucky life.. please someone tell me it does get

    Help !!!!! karen

  • #2
    I am sorry you ar having such a riugh time.. You ask does it get better? Since I was dg I will say it has gotten a little better. I think once you get the combination of meds and learn what you can and cannot eat is the most important things to learn on your road to a better life.. This disease is not cureable but you can learn to live with it.. I hope you feel better soon...(((((hugs))))

    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
      Things will get better, it's just going to take some time to figure out what's going to work for you. On a scale of 1-100, I'm doing about 75-80% better than I was at the beginning of this year. I still get frustrated when I'm having problems, but I have to remember the progress that was made. You'll go through periods where you get to feeling closer to normal, then you'll slide back a little bit, and that hurts almost as much as the beginning did, even if the physical pain isn't what it was.