The survey also asks about "alternative" or "complimentary" treatments you have tried, and how cystitis has affected your life. To my knowledge, there are no other long term follow up studies of large numbers of patients regarding the urological procedures they have experienced. Many of these procedures have been in wide use for decades.
And go to the publications of the data from other patients with your symptoms, to see what they have to say about the treatment.
The survey was primarily written by a patient with these symptoms, with encouragement and added questions by New York urologist Dr. Elizabeth Kavaler.
If you are still deciding whether to do the survey, please click on the letters of support from the National Women's Health Network and Our Bodies Ourselves, just to the left of this paragraph.
THANK YOU TO VOLUNTEERS WHO MADE THE SURVEY POSSIBLE:
You, who have taken the time to fill out this survey,
Doctor Elizabeth Kavaler for supporting the website from the beginning,
Doctors Jennifer R. Hill, Ginger Isom-Batz, Georgia Panagopoulos and Dr. E. Kavaler for analyzing some of the data from the first 750 surveys and writing an article, “Patient Perceived Outcomes of Treatments Used for Interstitial Cystitis,” in the medical journal UROLOGY, 71 (1), 2008
Judy Norsigian and staff at Our Bodies Ourselves, Cindy Pearson and staff at The National Women’s Health Network, the COB Foundation in England, The International Painful Bladder Foundation in the Netherlands, for support and encouragement from the beginning, and for publishing articles about the data from the survey, in UROLOGY, and the National Women’s Health Network March, 2009 newsletter. There will also soon be links to these articles on our site from COB, the ICN and the ICA.
Mary Jo Keitzer, Professor of Nursing and the Director of the University of Minnesota Center for Spirituality and Healing,
Carol Sakala, Director of The Childbirth Connection,
The Director of the New York Academy of Medicine, Janie Kaplan, and the librarians who work with her, - NYAM is the last remaining medical library open to the public other than the New York Public Library, in New York City and I have been visiting them since the late 1970s (medical libraries are mostly closed to the public around the country now),
Anonymous surgeons and private urologists in England and Germany,
Jill Osborne of the Interstitial Cystitis Network for her friendship, encouragement and advice and for providing a link to the survey from the beginning, on her site,
Professor Yelena Aronson for designing the website,
Mikhail Markov for programming the survey,
Steve Davis, Net Vantage, who helped us to organize data, export it to Excel and send it to the analysts, and who who helped with technical questions that put me over the edge.
Robert Green, who as a grad student at the University of Wisconsin Department of Biostatistics and Medical Informatics, did a separate data analysis with an excellent report which I am using, and his Advisor, Brian Yankowitz,
And friends and family who supplied essential professional expertise, inspiration and many hours of their time –
Rebecca Finnell, Maire Crowe, Kate Flax, Mary Rollefson, many others,
My husband, David Hanson, who helped me too many times to count with computer and other questions, and my patient and helpful children, Nels Hanson and Kashi Hanson.
Contributions:
I have been supporting the survey financially with family funds, thanks to my husband, in order to be independent of pharmaceutical and other medical interests which might be perceived to influence the outcome of the survey. I could really use financial help if anyone is inclined, and would discuss which project you might like to contribute to. Zakariasen@verizon.net , 845-727-1957
