The RESULTS of this survey will be published on this website, for patients, urologists and all to see. No names will be used. We will publish numerical totals for each question. We want this information to be a matter of public record, with patients' privacy protected. Please see the disclaimer page.

WHY FILL OUT THE SURVEY?

Cystitis can be difficult and often impossible to cure, if it is more than one or two bladder infections. There is no known cause or cure, beyond antibiotics for non-chronic infections. There are many tests and treatments offered by urologists, but there has been ongoing disagreement among both urologists and patients for decades about several of the tests and treatments, many of which are invasive. Researchers from the departments of Urology and Academic Computing at the University of Texas Southwestern Medical Center write about dilation of the urethra, a popular treatment for cystitis for three-quarters of a century: "...there remains skepticism about the effectiveness of urethral dilation largely because of a paucity of long-term, well-controlled studies and the lack of scientific evidence that would support its use on the basis of technical merit." (UROLOGY 1999, July, 54:1, 37-43)

Some patients are "horrified," by dilation, others "swear by it," I am told. As a cystitis patient for 30 years, I had 10 dilations and my symptoms became much worse and chronic after a great deal of urological intervention following one bladder infection in 1970. I want to know, and many other patients and urologists I have talked to want to know whether dilation and the many other tests and treatments offered are working for you. You may want to know what other patients think, also.

This survey asks you, the patient, whether the tests and treatments you have experienced have provided relief, made symptoms worse, or had no effect. And it asks you what you have found to be helpful in lessening the symptoms, whether from urologists, other specialists, or alternative treatment. Finally, the survey asks how cystitis has affected your life.

We hope you will take the time to fill out this survey. It has taken us nearly a year to write and design it, a first effort for all of us, and a volunteer effort. It is long; if you don't have time for all of it, please just answer the questions you feel are most important or relevant for you. Results will be published as they come in, beginning with the first 100 submitted surveys.

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Note: Cystitis is primarily a female disorder, but does affect some men and children. Please forgive me for using only the word "women" throughout the website; this is done for the sake of simplicity only. It is not meant to slight men or children with cystitis and of course we want men to fill out the survey too, and parents to fill it out for children who have cystitis.
THANK YOU.

AUTHORS of this site: Kay Zakariasen, a cystitis patient for more than 30 years, is the author of this site. My early cystitis history can be read on the PREVENTION MAGAZINE page of this site, an article I wrote in 1983. Dr. Elizabeth Kavaler, New York Urological Associates, wrote a number of the questions on the survey and has provided invaluable advice and encouragement.

PLEASE CONTRIBUTE: Lena Aronson and her husband, Mikhail Markov designed this website. Lena has had cystitis for many years and her daughters also have it, intermittently. All of us are volunteers. This is a nonprofit website and cannot continue without support from those of you who would like to contribute. Please see the "contributions" item on the menu. Thank you.

Quantifying the numbers of cystitis sufferers is difficult, partly because of the vagueness of the diagnosis, I.e. the inconsistent use of terms like cystitis, urethritis, trigonitis, urethral syndrome and interstitial cystitis, by doctors. The following, however, may provide an idea of the numbers, for women. Remember that there are also many children and men who have cystitis. I have not been able to find numbers for them.

5,000,000 office visit's a year within the US alone to gynecologists for urethral syndrome - chronic cystitis, not just a bladder infection. (Western Journal of Medicine, California Medical Association, May, 1996)

*700,000 diagnosed cases of interstitial cystitis in the US
(Interstitial Cystitis Association webstite)

*2.5 million people a year, mostly women, have "cystitis" in Britain (painful and/or frequent urination), half with bacteria/infection, half without. (British Medical Journal, London, Saturday 6, July 1991)

*Between one half and one third of women who visit a family doctor with symptoms of urinary frequency and pain do not have an infection, and this is referred to as urinary syndrome. (Lancet, 9/25/ 82, p. 694-5)

Symptoms of urgency, frequency and painful urination (in the absence of structural abnormalities and infection) were estimated to effect as many as 20-30% of women and in one cliniic affected as many as 719 out of 928 visits by women over a two year period. (Scotti, RJ, Ostergard DR: The urethral syndrome. Clin Obstet Gynecol 27:515, 1984, and Smith, P: Age changes in the female urethra (Br J Urol 44:667, 1972)