Kay Zakariasen do not give medical advice or engage in the practice of medicine. Kay Zakariasen under no circumstancesrecommends particular treatment for specific individuals and in all cases recommends that you consult your physician orlocal treatment center before pursuing any course of treatment.
various possible causes of our symptoms, and treated or referred accordingly. Theanswer to our second question will provide a list of many causes of our symptoms, andhow they can be treated successfully and noninvasively. See list/table of contents of our next document, below.
The Guidelines claim that treatment is
options,” but actually
treatment ismultiple surgeries
intended to be done multiple times to the same patient
often dozensof times, in a trial and error fashion. The treatment we have experienced, and which theGuidelines recommend
instillations of chemicals such as DMSO, Chlorpactin, andmany other chemicals, hydrodistentions of the bladder, implants of neurostimulators,Botox injections, are all surgeries
that‟s why they hurt so much. These surgeries are
done in different ways by different urologists; for example hydrodistention can be a 2minute procedure, or up to 3 hours, and the water pressure also varies. It is so painful
and invasive that the bladder always bleeds, and the patient couldn‟t stand
hydrodistention without anesthesia. All of these surgeries are a century old tradition inurology and are still recommended in the 2011 Guidelines. The multiple dilations of theurethra, also surgeries, are not mentioned in the Guidelines, but continue to be done to atleast 25% of patients, d
espite a urological study which has called dilation “a quality of care problem in the field of urology.” Urologists in Germany have a very different view
of dilation than many urologists in the United States, as you will see in the attached letter.The misleading information, found in the Guidelines, and shaping treatment, is alsounethical.
We now have data from thousands of patients, 2000 patients who filled out our survey,www.cystitispatientsurvey.com, 600 who participated in the urological trial called theInterstitial Cystitis Data Base Study (ICDB), published in 2000, and
hundreds morewho participated in the
ICCRN and ICCTG trials conducted at NIH/NIDDK, our National Institutes of Health, the department which pertains to urology, the NIDDK. (I
say “likely” because I have not been able to get this information from the NIH or other
urologists, though these trials have been paid for with our tax money. This researchappears to have been lite
rally buried in the NIH “archive,” and is even not available from
the authors, despite my querying them.) All of these studies asked patients whether theurological treatments they had experienced helped to improve symptoms, and the resultscan be stated in the words of the conclusion of the ICDB study - that
“…no current treatments have a significant impact on symptoms with time.”
That is, none of thesurgeries are effective
nor are the drugs commonly used. There is only one treatmentthat some patients found effective, among these trials, - myofascial stricture release, akind of physical therapy which helps heal tissue damaged by surgeries, or other injuries.There are two patient stories included in this letter to the AUA committees, James and