If you're strugging with a medical condition, the treatment decisions you make will be based in part on the information you gather from your doctors, family, friends, books and websites. Your job is to take all that information, sort the good from the bad, the credible from the absurd, and make intelligent decisions. Make no mistake about it. Your health and your funds are at stake.
- Consider the case of Jenny. She had IC for a few years and was struggling with pain. A friend suggested that she visit a chiropractor who could miraculously "treat any medical condition." She said "yes," drove 90 miles, had an examination by someone completely inexperienced in IC that triggered even more bladder pain and then bought hundreds of dollars of useless herbs and vitamins.
- Brian spent $29 buying a book online that said it would share the "cure" IC. After purchasing the book and reading it, he felt scammed. It blamed IC on salt, offered a simple low salt diet that he could have printed, for free, from many websites. It also offered no credible proof or research studies that showed that salt caused IC or that a low salt diet could "cure" IC. Yes, salt on a wound hurts. Reducing salt makes sense. But it's not a cure.
- Mary heard about an acupuncturist who could "heal" her IC. She spent more than a thousand dollars for phone consultations and herbs and experienced no improvement.
- Nancy was told by a doctor in Colorado that the only treatment for IC was a surgical procedure. She paid thousands of dollars for a medical device to be implanted (i.e. Interstim) that was not FDA approved for IC and suffered from serious surgical complications. When she went to another urologist to discuss her complications, she learned that there were other less expensive and less traumatic treatments that she could have tried that she was not told about.
Were these wise decisions? Of course not. Each patient forgot to be skeptical and to gather information from multiple sources, especially about potential "cures." Your first line of defense is to gather information from reliable sources... especially when using the web. Why? In the past ten years, we've seen it all. Websites that claim that they can cure for your IC if you buy their books. Vitamin distributors eager for new customers who pretend to be patients sharing their success stories. Alternative practitioners sharing wildly successful patient testimonials. And, yes, even well meaning patients who are sincerely trying to help others but are unfortunately passing along poor information. You, the reader, must protect yourself by verifying that the information you have is accurate, factual and credible. Please don't fall victim to these scammers. Be skeptical.
You must understand that much of the information you might read or hear, whether it be from companies selling you things or patients sharing their success stories, is the least reliable form of information to base your personal medical care on. Here's a good rating system that you can use to verify the quality of the information you are reading and, more importantly, perhaps relying on to make your medical decisions. Source: Agency for Health Care Policy and Research
Score of A to A- (Most Reliable): Statements are supported by one or more randomized controlled clinical trials, ideally at multiple locations and published in a peer reviewed journal.
Score of B to B-: Statements are supported by a well-designed and controlled research studies, ideally published in a peer reviewed journal
Score of C to C-: Statements are supported by less valid research studies, such as comparative, correlational or case studies or the opinion of a single experienced expert, such as a physician.
Score of D: An unbiased testimonial that reflects the pros AND cons of any particular approach.
Score of F (Least Reliable): Statements consist of anecdotal information, biased testimonials from patients or manufacturers, back-of-the-magazine paid stories, ads and TV infomercials. The vast majority of websites and several patient written books are "F's."
Thus, we think it's important to focus on information that is supported by strong, credible research. If a company has NOT paid out the money to do a study that proves their claim, we suggest you be skeptical. If a website that proclaims a cure is not listing research supporting their claim, be incredulous. If someone says that they can cure IC, ask for proof... hard, written (usually in a medical journal), factual proof.
Look for books written by medical professionals and/or IC experts, such as:
(1) The IC Survival Guide by Robert Moldwin MD, which is considered the #1 book written for patients. It covers the diagnosis, treatments and pain care for IC.
(2) A Taste of the Good Life: A Cookbook for IC and OAB by Bev Laumann
(3) Confident Choices: Customizing the IC Diet by Julie Beyer RD
(4) A Headache in the Pelvis by Dr. Rodney Anderson MD and David Wise PhD (Stanford University)
While there are now many websites now offering information on IC, we suggest starting with the large, national websites, government sites and large health care providers.
(1) The IC Network website - the only publishing company dedicated exclusively to IC and its related conditions, includes free newsletter (ICN E-News) and quartery magazine (IC Optimist).
(2) The IC Association - comprehensive patient association website discussing many facets of IC.. includes both free e-newsletter (Cafe ICA) and quarterly magazine (ICA Update).
(3) NIDDK IC website - a basic review of IC
(4) Mayo Clinic on IC - a basic review of IC
(5) Wikipedia on IC - a more cutting edge, up to date review of IC
National Library of Medicine (PubMed)
Curious about what's coming down the pipeline??
Wondering about past studies??
The National Library of Medicine, also known as PubMed, is the leading source for IC research information. This is a great resource that both patients and providers use extensively which usually provides pbulished research abstracts (summaries) from all of the major peer reviewed medical journals, full references and, on occasion, full text articles.
The other preeminant website that discusses current research in-depth, as well as conference reports, is UroToday, which discusses, in depth, many urology interests. Their section on Interstitial Cystitis and Painful Bladder Syndrome is superb, containing extensive summaries of current studies, current clinical trials as well as comprehensive conference meeting notes and discussions. You'll often find articles written by Phil Hanno MD.
In 2008, they also launched the UroToday International Journal.
Other websites of Interest
Medical journal articles are the gold standard of medical information simply because most are "peer-reviewed." This means that it is not only reviewed by the authors, but also by an individual panel of physicians who credibility test what is written. Several journals and magazines routinely carry articles about IC, including: