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Just got back from my Uro

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  • Just got back from my Uro

    Man he couldn't be more of an ass. So unsympathetic and rude. I told him I had had th eBotox done by another doc (because I didn't think he did it) and I told him it didn't work on me and he says "Yeah I didn't think it would". All smug about it too. At least I tried it!

    Anyway, he said there basically isn't anything else he could do because we've done hydros, rescue instillations, and I've tried the Botox. So he put me on
    B&O Supposotories and Ketorolac. I got to the pharmacy and they informed me that the Ketorolac is so strong that if I take it more than 5 days consecutively I will develop renal failure. Great! Glad the doctor told me that.

    He also said that the last time he did a hydro in December that my bladder looked much better. Not as many hemoraghes and no lesions. Which is good.....but it makes me worried because I wonder if I am crazy. If it looks good, then why does it feel worse than ever? Am I crazy? Is it just a phantom pain now? Or is it a nerve thing?


  • #2
    HI Myca, I don't know your history......Are you not able to use Elmiron? I see you have tried all kinds of options. It's just SO difficult to find a good dr. and find the right treatment. I hope you are able to find a solution! 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
      I would fire the uro you saw today or find another one, then fire him. Doctors can be fired as as we are the ones paying them. One could say our health insurance pays them, but we either go to work to earn the benefit of health insurance, which means giving up part of our live/time to get it. So, yes we are paying these doctors for a service and if they are not effective and don't perform at an acceptable level then they need to be let go.

      I wish you the best in finding a good uro. The ICN has a list of docs and you could also call the closest IC support group to your home as they are a great source of the truth regarding uros.



      • #4
        I have been on Elmiron for about 8 years. Does nothing for me. But then again maybe it has and that is why my bladder looks better. Who knows? It's just so frustrating to find something that works. Now that my bladder looks okay, it seems it's my nerves that are shot. So how do you fix that. ARG!