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Wednesday January 7, 2009 11:22 pm

Health Bulletin #1: The disease that poses as a UTI—and affects more than 1 in 300 women

With no known cause or cure, IC affects 1.3 million Americans, mostly women, and apparently my grandma had been suffering from a mild case of it for years. According to the Interstitial Cystitis Association, IC is the “pelvic pain, pressure, or discomfort related to the bladder typically associated with urinary frequency and urgency, in the absence of infection or other pathology. IC is also called chronic pelvic pain syndrome (CPPS), painful bladder syndrome (PBS), and bladder pain syndrome (BPS).” I promptly made an appointment with a local urologist and suggested that he perform a cystoscopy, which is really the only definitive way to diagnose IC. Sure enough, I was the not-so-proud bearer of the disease.

I could tell you horror stories about what happened next. About how I didn’t follow the low-acid, no-carbonation, no-caffeine, no-alcohol, no-preservatives diet and confused three very severe kidney infections for flare-ups and so sought medical help way later than I should have. I could talk about the hopelessness I felt, how I was convinced that my husband (then boyfriend) would leave me because what man would want to be with a woman with this kind of problem? I could talk about Vicodin-popping and weight loss, about rushing home from work because I was terrified I’d simply break down from the pain in front of my colleagues. And, apparently I am talking about it! But that’s for a reason. Things did not have to get that bad.

If you’ve been feeling some of these symptoms, I suggest the following:

1. Make an appointment with a urologist who specializes in interstitial cystitis. He or she will listen more carefully to your symptoms, be more apt to run tests, and will follow up with you afterward to ensure that you’re receiving proper care and support. If your initial urinalysis comes back negative for bacteria or infection, suggest a cystoscopy. Before you leave, ask him/her to prescribe either Pyridium or Urelle. Both are non-addictive medications that will ease the pain and urgency you feel, with only minor side effects (like cotton-mouth and wacky-colored urine).

2. For a week or two, try what’s known as an elimination diet. What affects me most negatively are: all fruits except blueberries and pears, acidic beverages (especially orange and cranberry juices), sodas, coffee, chocolate, and spicy food. Neutralize any acidic foods or drinks you consume with daily doses of alkaline foods, like spinach and mushrooms. You can also neutralize acidic foods with Prelief, which you can find in the antacid section of Walgreen’s. Meanwhile, drink at least double the recommended amount of water per day (the benefits extend far beyond IC treatment). If you feel better after following this diet, chances are good that you have IC.

3. If you’re in pain, run a hot bath and sprinkle some baking soda in there, which will neutralize the acidic urine. Do not use any sort of soap or bubble bath, which will only exacerbate the irritation in sensitive areas. After your bath, avoid the urge to tense up into a fetal position. Instead, lay on your back, with your legs butterflied (knees out to each side). Gently massage your bladder area.

4. Exercise! I have found that the more I work out, even if it’s just going for a walk or jog around the neighborhood, the fewer flares I suffer.

5. Get support. If the thought of a group of ladies sitting in a circle makes you cringe, check out the IC Network. Search your symptoms, look for a professional, and lurk on the message boards. You’ll be so glad you did.

So, want a happy ending to this IC tale, complete with a moral? I’m off all meds, have very few flare-ups, and am healthy and happy. Quite a change from just two years ago, and largely because I educated myself. Learning more about any health concern you have is the most empowering, beneficial thing you can do.

Was this helpful to you? Any questions or comments? What would you like to see covered here next week? 

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