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New to need of friends who understand

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  • New to need of friends who understand

    This is the first time that I have ever had the opportunity to talk to other people to share this condition, so I apologize if this post is long...I've been suffering alone for 10 years, and for so long, I have felt so scared, isolated, and afraid. I had no idea what was wrong, or that anyone else was out there that would understand. I was always in pain, always going to the emergency room, always on antibiotics. For a very long time, my urologist had me on cipro once a day, convinced that it was a simple matter of poor hygine and sexual activity. I became obsessively clean, showering multiple times a day, cleaning after each bathroom break...and even stopped having sex. Still the "infections" continued. Eventually it got worse; I could always feel an uncomfortable pressure in my bladder; sometimes it would flare up in pain. I experienced terrible urgency, went all the time, and I felt horrible. Worse, I felt horrible about myself; it was humiliating to hear doctors insinuate that I lacked proper hygiene. After years of this, I finally had a urologist who started culturing my "infections." From here, it is likely a familiar story to all of you: the cultures showed no growth. I underwent a cytoscopy and eventually a CT scan. I was recently diagnosed with IC by exclusion (no evidence of cancer, etc. after investigations).

    I'd like to say that I'm getting treatment now and that I'm on a path to recovery, but sadly, I'm not there yet. My urologist referred me to an IC specialist, but I can't afford it - the specialst doesn't take insurance and the average cost for a new patient appointment is $1,400. I'm following the IC diet, but I'm still in constant discomfort/pain and I'm not taking any medications aside from pyridum (does nothing much for pain but is pretty effective at ruining perfectly good underwear) and advil.

    I could use some friends/advice from people who are also going through this and understand what I'm dealing with. (Particularly from members in the DC/VA/MD area!). Any suggestions welcome. I'm pretty good at staying positive and I'm becoming more active/assertive in my health care, but it drains you after a while, you know?


  • #2
    Hi Krissy,
    Some of the best IC research is being done at the University of Maryland. Maybe you could get in to see a doctor there? I can't imagine a large clinic like that not taking insurance? The other thing is that your primary care doctor may know a good local urologist who treats IC. I was initially referred to a large university clinic (my IC is pretty severe, started out voiding 60x a day), but now go to a local doctor. It is much less expensive, is easier to get to in an emergency, the doctor is fascinated by the complexity of IC, loves making our lives better, and goes to pretty much the same conferences as the specialists. My primary care doctor referred me to him.

    Just a heads up that, for many of us, Advil can make our symptoms worse. You might try switching to acetaminophen, more of us can tolerate that one.

    I hope that you will find the ICN a place of hope and support. It certainly has been for me. I've had IC for 8 years and today, I am much much better than when I was first diagnosed. Hang in there, the hardest time is when you're putting your treatment plan together.

    Come here as much as you need, and ask lots of questions!
    You're not alone
    Wishing you better days soon,

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

    New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
    Source - Pinterest

    Current treatments:
    -IC diet
    -Elavil 50mg at night
    -Continuous use birth control pills (4-5 periods/year)
    -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
    -Pyridium if needed,
    -Pain medicine at bedtime daily, as needed during the day several times per week
    -Antibiotic when doing an instillation to prevent UTI
    -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
    -Dye Free Benadryl 50 mg at bedtime
    -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
    -Managing stress= VERY important!
    -Fur therapy: Hugging the cat!