|PATIENT SURVEY; PATIENT ANSWERS
|This survey is new and we have had a couple of problems with it. We have corrected the problems as of 1/29/05, but of the more than 100 surveys before that, we lost 4 because people wrote extensively in the boxes provided, rather than limiting comments to about 10 words. We do not want to lose these accounts, long or short, and ask you, if you used more than about 50 words, to please redo the survey, including the boxes where you wrote explanations. The survey program has been rewritten to accomodate long accounts. Again, this involves only about 4 surveys. And we apologize for this inconvenience. PLEASE BEAR WITH US - THIS IS A VOLUNTEER EFFORT.
If you are filling out this survey after 1/29/05, please try to keep your answers short in the boxes, but if you feel you'd like to give us a longer account, please do so. And please give us your e-mail if you are willing. Thank you.
The following is a SURVEY of PATIENTS with urinary symptoms of
"urgency and frequency" of urination, sometimes burning
and other pelvic pain. Partly because the cause of these symptoms is
usually unknown, there are many diagnostic terms used for
these symptoms. For the purposes of this survey and website we will use the
word CYSTITIS to mean all related diagnoses - lower urinary
tract infection (especially chronic or recurring infections), urethritis,
urethral syndrome, trigonities, interstitial cystitis
(and possibly others).
Basically, the survey asks whether the tests and treatments you have experienced
improved your symptoms, made symptoms worse, or had no effect. It also
asks how cystitis has affected your life.
| The results of the survey will be published on this website
after the first 100 cystitis sufferers have answered the questions.
Your answers to the survey will be published on this website as part of
numerical totals for each question, without any names. All individual
answers are confidential. This is a secure site (See disclaimer). Please
tell other cystitis patients about the survey; the results will be less
valuable if we do not have a significant number of responders.
|It is hoped that your
answers will be useful to all of us in several ways: helping us to discuss treatment
options with various specialists, encouraging more research and much better treatment
for cystitis, and perhaps fostering more cooperation among medical specialties, between
traditional and alternative medicine, and between medical providers and patients toward
a better understanding of cystitis, and different medical models - e.g. patient as
individual and not recipient of a formula for all. Basic communication between doctors
and patients is often lacking. A number of doctors have told me that they believe that
a patient has benefited from the therapy they gave the patient if the patient doesn't
return to the doctor. Patients tell me that they often don't return because the therapy
has not benefited them and they have switched doctors. Dr. Elizabeth Kavaler,
New York Urological Associates, says: "It starts with the patient...It's very
hard...unless patients demand alternatives. We see that in breats cancer.
Women didn't want mastectomies anymore so there's been a drive to stop that....We have
patients saying 'I won't live with this (cystitis) anymore. It's not acceptable.'"
|The survey was written by the author of this site, Kay Zakariasen, and Dr.
Elizabeth Kavaler, New York Urological Associates, New York, New York.
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