2. National Women’s Health Network website and the newsletter, March, 2009: “The Treatment and Mistreatment of Interstitial Cystitis,” by myself, Kay Zakariasen, and Dr. Jennifer Hill, chief resident in Urology at Lenox Hill Hospital in New York, published in March of 2009. The article, in full, can be viewed on the NWHN site by clicking here:
http://www.nwhn.org/newsletter/article1.cfm?newsletterarticles_id=332
This article is first, a summary of what the urological literature says about effectiveness and harm of treatment. The article also contains a lay version of the UROLOGY article, which summarizes what patients who took the survey have told us about the effect of urological treatment – mostly surgeries (dilation, hydrodistention,instillations). What patients are telling us is startling. We hope that these results will help patients make choices about treatment.
Please let us know if you have difficulties – we will try to help: zakariasen@verizon.net

Having taken on this project of a survey of patients, and now a book, I feel responsible to patients who read what we have written. I offer the following for your consideration:
Dr. Philip Hanno, writing the chapter on interstitial cystitis in the main Urological reference book, CAMPBELL-WALSH UROLOGY, says that “No current treatments have a significant impact on symptoms with time.” (8th Editon, p. 635) He also points out that hydrodistention – used for diagnosis as well as treatment, for decades, and common chemical instillations – silver nitrate, oxychlorosene (Chlorpactin WCS-90) and dimethyl sulfoxide (DMSO) all damage the inner lining (GAG) of the bladder. (8th Edition, p. 652 and 9th Editon, p. 345) Dr. Hanno told me in a phone interview that dilation was not in his chapter on intersticial cystitis because it is not considered indicated, appropriate treatment, for IC. Though it is not indicated, more than a quarter of patients responding to our survey – www.cystitispatientsurvey.com – said they had been treated with dilation.
Furthermore, dilation of the urethra, hydrodistention and instillations are all technically surgery. Surgery is de facto harmful and justified only if there is an anticipated benefit to the patient greater than the harm inherent in surgery. My paraphrase, from Sharpe, Virginia, MEDICAL HARM;Historical, Conceptual and Ethical Dimensions of Iatrogenic Illness, Cambridge University Press, 1998, p. 194