Our latest research: June, 2013:
The two links below will connect you to our latest research. If you’ve wondered whether to agree to urological treatment for IC/PBS or what it was you have already agreed to, this may help.
2. A link to an online, newspaper, Windsor Square, including our letter to three AUA committees:
These links contain a letter from myself, Kay Zakariasen, a patient, and Dr. Elizabeth Kavaler, to three committees of the American Urological Association (AUA), asking them to stop all invasive treatment for a diagnosis of IC/PBS, because it is unethical, harmful and unscientific. The links above contain the full text of this letter. The urological trials of the past two decades have concluded, in the words of one of the trials, that
“…no current treatments have a significant impact on symptoms with time.” This research has been hidden from patients in the archives of the National Institutes of Health (NIH), and does not appear in the new Patient Guidelines, the suggested treatment for IC/PBS. This lack of disclosure to patients of the ineffectiveness of treatment, is a breach of our legal Patients’ Rights.
Since 2004, when Dr. Elizabeth Kavaler and I launched an online survey of patients diagnosed with IC/PBS, www.cystitispatientsurvey.com, we have endeavored to understand two things: first, what is the nature of the treatment which the AUA suggests that urologists offer patients diagnosed with IC/PBS, exactly, and is this treatment safe and effective for patients, and second, what diagnoses and treatments have actually improved or cured symptoms?
The links you see here will connect you to the answer to our first question. We hope this information will help patients make understand the treatment they’ve already had, and to make decisions in the future.
These links were just put on the web by a recipient of a newsletter from a large patient support group in Canada: KWICSmail (firstname.lastname@example.org) . This member of KWICS support group is the publisher of an online newspaper for Windsor, Ontario. He put our letter to the AUA on the web in two places and these are the two links; the second link includes both his story and our letter to the AUA. We have just started to tell patient support groups about our letter.
Do not fail to read the patient stories in the Addendum to our letter to the AUA.
The answer to my own and Dr. Kavaler’s second question, what patients find actually does improve symptoms, all noninvasive, will be up on our survey website, within a month, hopefully sooner.
Those of you who filled out the survey helped to make this work possible. Thank you.
WE HAVE GOOD NEWS: SURVEY RESULTS ANALYZED AND PUBLISHED
750 Interstitial Cystitis (IC) patients tell us whether urological treatments improved their symptoms, made them worse or had no effect:
1. , January, 2008: “Patient Perceived Outcomes of Treatments Used for Interstitial Cystitis.” For Abstract, i.e. short version, click here: http://dx.doi.org/10.1016/j.urology.2007.09.011
Then click on “Science Direct,” and the abstract will come up.
For full text of UROLOGY article, click here
2. Newsletter article, March, 2009: “The Treatment and Mistreatment of Chronic Urgency and Frequency – Gathering Women’s Experiences about Interstitial Cystitis.” Click here: http://www.nwhn.org/newsletter/article1.cfm?newsletterarticles_id=332
3. is running a blog about the NWHN article, click here:
4. has published the NWHN article in their Magazine, and you can purchase it from their website www.ic-network.com (ICN shop)
5. A link from to the NWHN article is http://www.ichelp.org/Research/tabid/603/Default.aspx
6. The Cystitis Overactive Bladder Foundation in the United Kingdom has provided a link to our website for patients in the UK to the NWHN article:
If you have already filled out the survey, THANK YOU. IF NOT please do so. 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, at the bottom of this page.
The purpose of this website is to ask patients with chronic symptoms of urgency and frequency and often severe pelvic pain, WHETHER UROLOGICAL TESTS AND TREATMENTS THEY HAVE HAD IMPROVED THEIR SYMPTOMS, MADE THEM WORSE, OR HAD NO EFFECT. (“Chronic urgency and frequency” are clinical terms for the feeling that one has to urinate, or pee, without letup, for weeks, months or years. Sometimes there are bladder infections also. There have been many diagnostic names given to these symptoms, including the latest, Urologic Chronic Pelvic Pain Syndrome, UCPPS, because the cause of cystitis is unknown. Most of these diagnostic names are at the top of this page. For the purposes of this survey, we will use the term “cystitis.”) We have already published an analysis of some of the data from the first 750 completed surveys. To read the full article click here
We now have over 1500 completed surveys and expect more. Our hope is that
information from other patients about their experiences with prescribed drugs,
tests and treatments, will help other patients to decide whether to agree to tests and treatments suggested by urologists. You will find these articles
using the links provided on this page.
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 benefit and harm from the urological procedures they have experienced. Many of these procedures have been in wide use for many decades.
The survey was primarily written by myself, Kay Zakariasen, a patient with these symptoms, with encouragement and added questions by New York urologist Dr. Elizabeth Kavaler.
THANK YOU TO VOLUNTEERS WHO MADE THE SURVEY POSSIBLE:
First, thank you to more than 1500 patients who have taken the time to fill out our survey,
I owe my life to two doctors who practiced medicine primarily to help patients, not primarily as a business model:
Dr. Howard Lutz, who first diagnosed food allergies and an overgrowth of candida in my intestine in 1981, and thereby ended several years of extreme gas and pain
in the intestine, and thank you also to Olga Diamondes, a dear friend who saw this holistic internist on a TV talk show and insisted I see him,
Thank you also to the doctor who used new, evidence based medical research and 50 years of experience to successfully diagnose
and treat my chronic urgency and frequency (30 years) which began with urological surgeries - dilations of the urethra, silver
nitrate instillations and many courses of antibiotics administered by urologists. He relieved me of my bladder symptoms by
treating the cause of the problem, and without surgery or ongoing pharmaceuticals. See NWHN article for details, link at top of
home page. This doctor is retired and wishes to remain anonymous,
Dr. Diane Churchill for years of encouragement and enlightenment,
Thank you to the doctors and leaders of women’s health organizations who made the publishing of survey data possible:
Doctor Elizabeth Kavaler for supporting www.cystitispatientsurvey.com from the beginning, advising me, and organizing the data analysis and writing of the article for UROLOGY (link at top of home page),
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
the article, “Patient Perceived Outcomes of Treatments Used for Interstitial Cystitis,” which was published in the medical journal UROLOGY, 71
Cindy Pearson and staff at The National Women’s Health Network, for a letter of support for the survey from the first day and for asking
myself and Dr. Hill to write an article for them about the survey, www.nwhn.org. See the top of this page for links to the NWHN article about the
Judy Norsigian and staff at Our Bodies Ourselves, for a letter of support for the survey from the beginning, for reprinting the NWHN article and producing a blog on
the article, www.ourbodiesourselves.org See the top of this page for a link to the blog,
Mary Jo Keitzer, Professor of Nursing and the Director of the University of Minnesota Center for Spirituality and Healing, for early encouragement and current analysis
of patient written answers on the survey, www.csh.umn.edu
Carol Sakala, Director of The Childbirth Connection, for advice and encouragement many times, www.childbirthconnection.org
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), www.nyam.org/library,
And to the Maine Medical Center Library and librarians, one of the few medical libraries still open and welcoming! to the public, Portland,
and to the Librarian, Leslie Rounds, of Dyer Library, Saco, Maine for reading the NWHN article before submission to NWHN.
Anonymous surgeons and private urologists in England and Germany,
Several organizations for patients started and run by patients:
The Interstitial Cystitis Network and President Jill Osborne, for her encouragement and advice and for providing a link to the survey from the beginning and reprinting the NWHN article in the Magazine,
The Interstitial Cystitis Association for republishing the NWHN article. www.ichelp.org
Cystitis and Overactive Bladder Foundation, COB, a very large patient organization in England, for encouragement from the beginning of the survey,
The International Painful Bladder Foundation, Jane Meijlink in the Netherlands for support and encouragement www.painful-bladder.org
Website design, programming, export of data to Excel, data analysis:
Professor Yelena Aronson for designing the website and ongoing, many hours of work on the site
Mikhail Markov for programming the survey and for ongoing, many hours of advice
Steve Davis, Net Vantage, who volunteered to export survey data to Excel and sent it to the analysts, and 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 Yandell who made it possible.
And thank you to friends and family who supplied essential professional expertise, inspiration and many hours of their time:
Rebecca Finnell for her friendship and incredible skills as executive editor at Natural History Magazine for 25 years, for editing the survey and
suggesting I ask Maire Crowe, former Managing Editor at NHM, to edit the book – which she very generously agreed to do,
My sister, Linda Davis, for her listening, very good questions and encouragement since I began this in 2002.
My niece, Kristi Carter for arranging an interview for the documentary I am working on,
Russ Zakariasen, and stepmother, Ethel, for asking me every time we talk how my project is coming and encouraging me,
Nandini Kotha, for help with computer issues and for recommending coconut milk to soothe the bladder, an Indian remedy – very helpful for dealing
with bladder irritation at bedtime,
Kate Flax, a Graves’ Disease patient who inspired me with her book for other patients: HEALING OPTIONS, 1998,
Mary Rollefson, a friend and professional survey researcher, who advised me on how to write a survey. She now runs her own landscape design business,
Jennifer Miller, who advised me on how to position the survey on the web and on TM.
Fred Bogin and Gian and Miriam Cinquegrana, for patience and generosity on computer issues, my nemesis,
Last, but certainly not least, thank you to my husband, David Hanson, who endured and expertly helped me, too many times to count, with computer and
other questions, and who encouraged me to do this even though it meant constant financial outgo and no income, for 7 years so far, and counting. And to my
children, Nels Hanson and Kashi Hanson, who are my best and most patient life teachers.
THANK YOU TO OUR SUPPORTERS:
OUR BODIES OURSELVES
NATIONAL WOMEN’S HEALTH NETWORK
COB FOUNDATION (UK)
INTERNATIONAL PAINFUL BLADDER FOUNDATION (NETHERLANDS)
All of these organizations have
given us support in the form of web links that have helped cystitis patients find the survey.
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
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