Cystitis Research Center

- 1996 Patient Survey Results - Interstitial Cystitis Information Center -

July 30, 1997

Dear IC Questionnaire Participant:

I imagine that by now you might have forgotten all the work you did in filling out the CRC/ICIC questionnaire that was sent to you last fall, but we (Dr. Fugazzotto and I) have not forgotten you.

Thanks to all your input (both positive and negative) we have come up with a definite indication that the CRC monitoring program for pelvic symptoms/IC does work and works extremely well for many IC patients. It has taken many months and hundreds of hours of work to compile this information but it is now completed.

Enclosed is a copy of the abstract and general conclusions reached by the compilation of all questionnaire participants. I think you will find them to be most interesting to say the least As we had no funding source for 17 months of work and effort to complete this questionnaire, I am sorry to say I canÕt send the complete set of conclusions to you unless you would be willing to send $6.50 in order to receive such a copy. The report itself is 11 pages long with four charts making a total of 15 pages.

If you do want the complete report, please send a check for $5.50 made payable to Kay H. Benton and I'll get a copy out to you by return mail if at all possible. If any of you are further interested in receiving the ICIC info listing (free) and info regarding the IC Supplement Program (first ever to be put together specifically for IC patients), please also indicate that on the note you send with your request and I'll be happy to send that to you also.

Dr. Fugazzotto and I hope most of you are continuing to do well with your IC and/or as many of you indicated continue to enjoy a healed bladder and freedom from IC symptoms. We thank you again for adding your pertinent information to this most valuable study determining the efficacy of the CRC monitoring program for IC patients.

Sincerely,
Kay H. Benton, Director

Participants in the Cystitis Research Center Monitoring Program

Fugazzotto, Paul and Benton, Kay H. Rapid City, SD and Farmville, VA

As a former sufferer of Interstitial Cystitis and participant in the Cystitis Research Center (CRC) Program under the monitoring of Dr. Paul Fugazzotto, I became interested in collecting all the information I could find on IC: research publications, news reports, personal experiences, etc.

In the past 12 years I have accumulated hundreds of pieces of informational material which I began to put to use to help other IC victims by establishing the IC Information Center in early 1995.

A study of these articles shows that none of them can claim a measure of success comparable to that of the work of the CRC technology for diagnosis and monitoring of IC that I received. Since 1986, Dr. Fugazzotto has tested more than 8800 urine specimens from chronic symptomatic women (mostly) for a roster of over 1700 participants. With all this accumulation of data, I approached Dr. Fugazzotto on the desirability of conducting a nationwide clinical survey of his CRC participants' histories for a validated scientific approach to the identity of IC. He readily agreed but left the design of the survey to my discretion and merely provided the listing of 1000 inactive patients names and addresses to a mailing agency in Rapid City, SD whose computers randomly selected one of every five names to receive the survey by bulk mail, The survey, mailed out in the fall of 1996, was accompanied by an addressed envelope to be returned to me at the ICIC for analysis and tabulation.

The content of this survey consisted of 50 questions referring to pelvic disorders/IC experiences contained in three parts: Part A: Prior to Participating in the CRC Monitoring Program (18 questions); Part B: Participation in the CRC Monitoring Program (12 questions); and Part C: General Questions (20 questions). While an actual count of diagnosed IC participants was not made, the surveys submitted indicated that nearly all returns were made by IC patients having urine specimens yielding historically established Gram Positive coccus pathogens.

Responses were tabulated and a basic summary of results was concluded. These conclusions are attached to this abstract. Most importantly, in contrast to the nearly complete failure in the management of these patients by standard testing and traditional antibiotic and/or invasive treatments prior to their CRC participation, the CRC participants showed a success rate of 78% in that their pelvic disorders/IC symptoms were LESS in ALL categories while under the CRC monitoring program. That success rate would appear to have been even higher if various breaks in the participation chain had not occurred.

No funding by ICA or NIH

GENERAL CONCLUSIONS TO THE NATIONWIDE CLINICAL SURVEY OF RESPONSES BY A SAMPLE OF PARTICIPANTS IN THE CYSTITIS RESEARCH MONITORING PROGRAM:

The survey results show the efficacy of Dr. Paul Fugazzotto's Cystitis Research Center monitoring program of individuals with pelvic symptoms/IC. Sixty-eight percent (68%) of the respondents showed symptom reduction taking the CRC suggested antibiotics within "DAYS" and/or "SIX MONTHS. If there was a problem with the antibiotic being taken or the dosages taken 75% of those who made the suggested changes found them to be helpful. It was learned from this survey that the average continuous time using CRC suggested antibiotics was 16 months, not the years and years that many IC patients have heard or felt would be necessary in order to rid their bodies of IC bacteria. It was also learned that the average age of onset for pelvic symptom/IC was 36 1/2 years as opposed to the accepted thinking that most IC patients are middle-aged and either peri-menopausal or menopausal.

Sixty percent (60%) of those who stayed with the CRC monitoring program now feel their bladders are HEALED, have only slight symptoms needing occasional antibiotic usage or no longer feel they need antibiotics at all.

Seventy-two percent (72%) ranked the CRC monitoring program "fair" to "excellent".

Seventy-eight percent (78%) felt their pelvic symptoms/IC were LESS in all categories while under the CRC monitoring program.

Eighty-two percent (82%) said they would and have recommended the CRC monitoring program to others.

Sixty-nine percent (69%) reported they had complete remissions in their symptoms anywhere from two weeks (1) to four or five years. When asked if they were currently symptom-free, forty-nine percent (49%) said they were.

Also encouraging was the fact that eighty-two percent (82%) of the respondents had implemented dietary controls and found them to be helpful. Interestingly, however, sixty-one percent (61%) did NOT think they had food, drug, chemical sensitivities or other types of allergies that caused them problems in their treatments. And an impressive eighty-seven percent 87% reported that they do take vitamin/mineral supplements to help them improve their overall health.