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South FL doctor familiar with IC?

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  • South FL doctor familiar with IC?

    Hi all,

    PLEASE, PLEASE, if anyone knows of a Urologist that is at least a little familiar with IC in the South Florida area, let me know his or her name!!

    I'm in Miami, FL and I'm having a hard time with my Urologist, Dr. SC, as it seems he doesn't know what he's doing when it comes to managing my IC. Mind you, this is in spite of being highly recommended by my primary doctor and having good general reviews online.

    Dr. SC gave me 3 instills of RIMSO-50 without dilution on a bi-weekly basis, which caused horrible spasms last time. When I researched the spasms, I found out that the AUA only recommends DMSO to be given at a 25% dilution with a dwell time of only 15-20 min--as opposed to the 60-90 min Dr. SC was recommending--as stronger concentrations may cause irreversible damage to the bladder. IRREVERSIBLE DAMAGE! Someone even lost her bladder because of DMSO in high concentrations. And, here, Dr. SC was giving me these treatments without a care in the world when he could be destroying my bladder. Needless to say, I was livid upon learning this info! I'm starting to think Dr. SC knows nothing more about IC than the quick blurb in his med school textbook. When I brought up the AUA recommendation--which is OVER A DECADE OLD--he wasn't even aware!!

    Well, I made sure my 4th instill was done right, but I think I need a new Urologist.

    I am able to travel anywhere between North Broward (Ft. Lauderdale, Plantation, Weston, etc.) to South Dade (Kendall, Perrine, Florida City, etc.). Anywhere in between is doable! I am willing to travel 60-90 minutes in any direction from Miami to see a good Urologist that at least has SOME knowledge on the condition.

    Any help is highly appreciated!!!
    Diagnosed in 2014 via Cystoscopy. Suffering symptoms since 2011. First manifested after vicious cycles of antibiotics for chronic UTIs followed by yeast infections.

    Current medications:
    -RIMSO-50, 25% dilution, every 2 weeks (4 instills w/ minimal improvement)
    -Cystoprotek, 1 pills /3x a day - started 3/21/14 (some relief already—seems promising!)
    *NOTE: I have a severe shrimp-only allergy, but can take it with no problem!
    -D-Mannose, 1500mg before & after sex OR every 3-4 hours when infection looming
    -Prelief, as needed
    -Clonazepam 2.5-5mg, as needed for anxiety
    -Progenex Omega+, 2 pills a day
    -Evening Primrose Oil, 1000mg/2 pills a day
    -Garlic, 2000mg/2 pills a day
    -Tocotrienols, 50mg/2 pills a day
    -L-Arginine 500mg daily
    -Ginko Biloba, 120mg daily
    -Melatonin, 10mg/ daily at bedtime

    Failed medications: Pyridium (no effect), Elmiron (severe bruising & hair loss), Marshmallow Root (holy mother of burning bladders!!)