PublicationsIn all of the following publications, you will see that I refer to the “treatments” or “procedures” recommended by the American Urological Association, AUA, for a diagnosis of Interstitial Cystitis/Bladder Pain Syndrome, IC/BPS as surgeries, with surgical CPT codes. As surgeries, they require antibiotics.
These surgeries are: hydrodistentions of the bladder, instillations of chemicals like DMSO (a wood solvent), Heparin and/or Lidocaine, implantation of neuromodulation devices under the skin, Intradetrusor botulinum toxin A (Botox), Cyclosporine A, and finally “diversion” of urine, which means either removal of the entire bladder (cystectomy) or part of the bladder. The AUA “Practice Guidelines,” where these surgeries are recommended to urologists can be found at
There are also many other surgeries done, such as “dilation of the urethra,” which has been done since 1917 and continues, even though it has been scientifically proven that a “narrow urethra” is extremely rare and only caused by trauma. (1)
All of our publications indicate that these surgeries do not provide any symptom relief to mostpatients; on the contrary, they cause many other health problems and symptoms. Because surgeries and antibiotics always cause harm, when they are ineffective, they are also unethical. (2)
Dr. Elizabeth Kavaler, my urologist, and I worked together from about 2002 to 2017, on a Letter to the AUA, and a survey of more than 1600 women who were diagnosed with interstitial cystitis/bladder pain syndrome, IC/BPS.
See Dr. Christopher Payne’s lectures at the end of this list of publications may also be helpful to you, in becoming informed.
1. Publications of Dr. Elizabeth Kavaler’s and my Letter to the American Urological Association (AUA)in 2013:
a. Published on our original website, www.cystitispatientsurvey.com,
c. Our Bodies Ourselves:
By 2013, when we sent this letter to the AUA, it was apparent that the results of the first 750 submissions to our survey at www.cystitispatientsurvey.com, and the results of the urological evidence we knew about at the time, the Interstitial Cystitis Data Base study, were essentially the same – that “…no current treatments have a significant impact on symptoms with time,” making the Practice Guidelines of the AUA an “irrational” treatment.
Though we didn’t know it in 2013, there had also been numerous random controlled trials (RCTs) done at NIH/NIDDK regarding the treatments recommended by the AUA, and others, only one had shown any benefit at all for some patients – myofascial stricture release, MFR, a kind of physical therapy.
Our Letter to the AUA was addressed to three Committees of the AUA, the American Urological Association: Judicial and Ethics Committee, Practice Guidelines Committee, and the Quality Improvement & Patient Safety Committee.
The message of the letter was that the treatment is unethical, the Practice Guidelines extremely harmful and quality improvement and patient safety nonexistent.
The AUA claims that the cause of IC/BPS (urgency and frequency and bladder pain) was unknown, there was no cure, but that with trial and error surgeries on the bladder, eventually, there would be some relief of symptoms.
I knew by this time, from my own experience, the experience of dozens of other women who I interviewed, that some had eventually found a doctor or other health care provider who diagnosed the correct cause of their symptoms – which was rarely a bladder problem - and provided the appropriate treatment. These causes of their symptoms were many – viruses, muscle disorders, damage to the myofascial tissue (the tissue that holds our bodies together from our toes to the top of our heads) from surgeries.
Anne’s story, in this first article at this website is an example of a diagnosis of IC by urologists, 31 trial and error surgeries to the bladder, which only made her intense pain worse, and finally, the correct diagnosis, myofascial stricture caused by a hysterectomy she had just before the symptoms urologists call IC began. Myofascial Release physical therapy, MFR, finally relieved 95% of Anne’s pain. As many as 45% of women diagnosed with IC actually have myofascial stricture, not a bladder problem and therefore surgeries on the bladder are “irrational.”See ICDB pdf.
In other words, the people I interviewed had been diagnosed and cured by other medical specialists. You might take this list of some of the causes of urgency and frequency and pelvic pain with you to your family doctor or any other doctor who is willing to test you for some of these conditions, as possible cause/s of your symptoms:
Some people, after being diagnosed with IC/BPS, give up on the AUA surgeries because their symptoms get worse, and some go to different medical specialists, physical therapists and other health care providers. Some get lucky, are correctly diagnosed and correctly treated, almost never with surgery. As we’ve said, urgency and frequency and pain can have many causes – it’s not the same for everyone. Here is a list of some of the causes of symptoms; a doctor who practices holistic medicine should understand:
• The very diagnosis of IC/BPS leads to dozens of unnecessary surgeries on the bladder, with antibiotics, and can actually cause the very symptoms that urologists call IC/BPS (urgency and frequency and “bladder pain.).” Overuse of antibiotics (used with unnecessary surgeries, like the surgeries on the bladder) can cause a Candida albicans infection, sometimes called Small Intestinal Bacterial Overgrowth (SIBO). Almost every patient of the dozens I’ve interviewed has had intestinal problems, with allergies to many foods, bloating and pain – even a woman in Lesotho who was diagnosed with IC/BPS. The AUA has a long reach, to urologists in many countries, who follow the AUA lead.
According to Dr. Martin Blaser, of the International Human Microbiome Project, overuse of antibiotics has caused many “modern plagues,” which include “… obesity, asthma, allergies, diabetes, and certain forms of cancer.” (Cancer – see Susie’s story) Blaser’s new book is Missing Microbes; How the Overuse of Antibiotics is Fueling Our Modern Plagues , 2014. This is very readable. Blaser: http://martinblaser.com/
 See more at: http://martin.com/#sthash.jdRIXjFt.dpuf
• As many as 70% of people diagnosed with IC/BPS actually have Pelvic floor muscle dysfunction, PFMD, James’ story in our Letter to the AUA
• Various pelvic surgeries (hysterectomies, C-sections, appendectomies, surgeries for bladder prolapse, endometriosis, Vulvar Vestibulectomy, gall bladder and many other pelvic surgeries) can cause damage to organs in the pelvis, like myofascial stricture. See Anne’s story. It bears repeating: Surgery is always harmful and both the surgery and the antibiotic necessary for a surgery are unethical unless the patient is expected to be much more benefited than harmed by the surgery. No patient is benefitted from the surgeries recommended by the AUA for a diagnosis of IC/BPS, if our survey results, and medical evidence are correct.
• Sensitivity to or allergies to many foods can cause symptoms in the bladder.
• A side effect of pharmaceuticals, for example Norvasc, can be urgency and frequency.
• There can be a bladder infection that the Agar plate (routine urinalysis) does not pick up, such as Chlamydia trachomatis, Ureaplasma urealyticum. A broth culture can be done by www.unitedmedicallab.com and at other labs.
• Chemicals like antiseptics and spermicides.
• Viruses like Herpes II virus, (my own case) and Polyoma virus, VZV virus, and Noro virus.
• Acidosis of the body.
• Lyme disease.
• Hormonal problems - the leader of a patient support group says: I do believe that I have organic Bladder Pain Syndrome, BPS – which is not a bladder disease. Hormones are just one part of the many pieces of my puzzle. They did not cause the problem nor cure the problem -- they are just one factor. I believe I have the organic disease (call it what you will) that Dr. Buffington studies -- the neuro-endocrine disorder. I have all of the symptoms for that and I have never heard of a cure -- just trying to keep the symptoms down and hormones help in that (but do not alleviate the symptoms). To say I have a "bladder" disease I believe is just rubbish. Whatever I have is my whole body disease. I hope that makes sense. Dr. C. A. Tony Buffington’s article: https://www.ncbi.nlm.nih.gov/pubmed/15371816
The treatment this woman has used is two-fold:
1) When I began taking bio-identical progesterone around aged 40, this helped to "calm the whole body" as progesterone does, and so all of my symptoms, including bladder symptoms became less severe. (If I would have known about this, I would have tried it much sooner).
2) When I was in my late 40s, my bladder began acting up again with severe symptoms and I realized that because I was in peri-menopause, this likely meant I was decreasing in estrogen. I began also taking bio-identical estrogen, and once again the bladder symptoms decreased to a manageable level.
**Both of these are obtained through a doctor's prescription, and compounded by a pharmacy.
• New, noninfectious disease epidemics that we now have are, hypothetically, caused by a “mismatch” between our paleolithic bodies and our “novel environment.” That is, our paleolithic bodies cannot cope with unimaginable quantities of and combinations of synthetic chemicals in our food, water, air, and genetically modified food combined with the herbicide glyphosate. We will explain in a later article. In the meantime, you may benefit from reading a book written for everyone (in plain rather than medical language), called The Story of the Human Body; Evolution, Health and Disease, 2-13, by Daniel Lieberman, especially page 172, a “hypothetical list of mismatch diseases,” more than 50 new epidemics.
• In addition to this list of possible causes of urgency and frequency and pelvic pain, The President of the Canadian Urological Association, Professor of Urology at Queen’s University in Canada, Dr. J Curtis Nickel, and colleagues, have studied a group of patients diagnosed with IC/BPS and discovered that they have “associated non bladder syndromes and conditions (which) must be addressed as well as the urological issues, “…by the urologist, the family physician and in many cases by specific specialists working collaboratively to treat the ‘whole patient.’” Dr. Nickel maintains that if these associated conditions are not diagnosed and treated, “the patient will not be helped.” (9)
These conditions, says Dr. Nickel, “ include IBS (59% of a studied patient group), Fibromyalgia (59%), chronic fatigue (18%), diseases which are Genito-Urinary (71%), Neurogenic (35%), Hematologic, blood,(18%), Psychiatric, depression (35%), Gastro Intestinal, stomach, intestines, (88%), ENT, ears, nose and throat (41%), Allergic/immune system (47%), MSK - Medullary Sponge Kidney, leading to blood in the urine, kidney stones, urinary tract infections, (82%) Dermatological, skin (6%), Cardiovascular, 29%, Pulomnary, lungs (88%) and/or Endocrinologic – hormone issues- (47%). Underlining is mine.(10)
The question for me, (Kay) is how many of these conditions are caused by overuse of antibiotics, food laden with pesticides, glyphosate and other herbicides, and other poisons.
Dr. Nickel responds to this question, 3/1/18: As far as your query in regard to antibiotics causing many of the associated conditions, there is no proof one way or another. However we do know that these conditions are increasing and very well may have an environmental etiology. Certainly our food in terms of diet, environmental pollutants and overuse of antibiotics may be implicated. (etiology means “the cause, set of causes, or manner of causation of a disease or condition”)
I reply: Re: antibiotics, we know that the Guidelines involve a lot of surgeries, each with an antibiotic, and we have known since the public use of antibiotics, in the 1940s, that the result is candida albicans – and now we know how these antibiotics effect the whole microbiome of the body. (Martin Blaser, NYU Langone, the international human microbiome project etc.).
THIS IS BY NO MEANS A COMPLETE LIST OF ALL THE POSSIBLE CAUSES OF THE SYMPTOMS OF URGENCY AND FREQUENCY AND SO-CALLED BLADDER PAIN SYNDROME. If you can find a doctor who practices medicine in a holistic manner, she or he would understand and likely be able to help diagnose the real causes of your symptoms. The above list of possibilities may be helpful.
I strongly recommend that you read James’ and Susie’s stories also, in our Letter to the AUA. The real cause of James’ so-called IC was actually pelvic floor muscle dysfunction, PFMD, and of Susie’s condition the cause was the dozens of surgeries, and the antibiotics that went with those surgeries, recommended by the AUA. Susie’s condition began with a mild urgency and frequency and after most of the surgeries recommended by the AUA had been done and her condition was much worse, her bladder was also removed. She has given us her story, a warning, “so that other people won’t have to go through what she went through.”
2. Publications of our Survey Results, the survey on our original website, www.cystitispatientsurvey.com :
o 2018 publication by the Canadian Urological Association Journal, of a reanalysis of our survey data, the full 1628 female patients’ views about the effectiveness of urological treatment for IC: https://www.cuaj.ca/index.php/journal/article/view/4505
“Conclusions: There is a disconnect between real-world patient perceived effectiveness of IC/BPS treatments compared to the efficacy reported from clinical trial data and subsequent guidelines developed from this efficacy data.”
In other words, in general, the 1628 women who filled out our survey felt that the urological treatment they had received was not effective in improving symptoms, while AUA and CUA, in the form of their Practice Guidelines, claimed that their treatment was effective.
o UROLOGY (the Journal) January, 2008: “Patient Perceived Outcomes of Treatments Used for Interstitial Cystitis.” For the 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, and an explanation, click here https://www.cystitispatientsurvey.com/ic_article.jsp
o National Women’s Health Network Newsletter, 2009: https://www.nwhn.org/the-treatment-and-mistreatment-of-chronic-urgency-and-frequency-gathering-womens-experiences-about-interstitial-cystitis/
3. My story (Kay Zakariasen), and survey results:
o National Women’s Health Network Newsletter, 2009: My story and results of our survey: https://www.nwhn.org/the-treatment-and-mistreatment-of-chronic-urgency-and-frequency-gathering-womens-experiences-about-interstitial-cystitis/
o Our Bodies Ourselves,
A blog started by Our Bodies Ourselves, regarding this article and my own experience: https://www.ourbodiesourselves.org/2009/06/ic-draft/
o Prevention Magazine Article: http://www.cystitispatientsurvey.com/prevention1t.jsp Please note that there is a “next page” prompt in the upper right hand corner of each page. on our original website so that you can read the entire article.
Zakariasen, Kay, “Cystitis: Getting Off the Treatment Treadmill”, Prevention Magazine, 1983; April, pp. 104-9.
Twenty five people who read this article sent me letters, and became my first contacts with other people diagnosed with cystitis or IC. One woman said “Kay, I’ve been butchered.” This pretty much sums up the content of all of these letters and conversations with these people.
At present, I am in agreement with Dr. Christopher Payne, Professor Emeritus of Urology at Stanford, who gave lectures at three urological meetings in 2017. However, interviews that I have done with dozens of women indicate that that there are more causes of our symptoms than Dr. Payne mentions in his lectures, as per the list on pages 3-5 of this document.
Dr. Payne says that a 2007 review of 203 biopsies of bladders, (Leihy, RF et al, J UROLOGY, 2007:177:142-148) indicates that 90% of people diagnosed with IC do not have a bladder disease and their symptoms may be curable.
The other ten percent of people diagnosed with IC have Hunner’s ulcers or cancer in their bladder, and the appropriate surgeries will help them.
In Dr. Payne’s words, “The Emperor Has no Clothes.” https://www.ic-network.com/dr-chris-payne-presentation-icbps-aua-2017
In Dr. Payne’s private practice, the majority of his patients have myofascial issues, for which he recommends myofascial physical therapy, and if that doesn’t bring progressive relief, other therapies.
Dr. Payne does not say this, but one study does indicate that as many as 45% of women diagnosed may have so-called IC symptoms which are actually caused by damage to the myofascial tissue during a hysterectomy. In this case, the so-called IC symptoms begin right after this operation. (11)
(1) Santucci, RA, Payne CK, Anger JT, Saigal CS; Urologic Diseases in American Project,”Office dilation of the female urethra: a quality of care problem in the field of urology,” J Urol, 2008 Nov; 180 (5):2068-75. Epub 2008 Sept. 18.
(2) Sharpe, Virginia A., and Al Faden, MEDICAL HARM: Historical, Conceptual and Ethical Dimensions of Iatrogenic Illness, Cambridge University Press, Cambridge, 1997. pp 65-67, 74, 71, 83, 127.
Sometimes the Benefit:risk ratio is expressed as benefit:harm, because benefit:risk assumes that “risk” is not certain. Surgery is de facto harmful, always causes harm, and if the patient isn’t expected to be better after surgery than before, it’s unethical – and a disaster for the patient, who may then experience lifelong, chronic pain.
(4) Mandell, Douglas and Bennett’s Principles and Practice of Infectious Diseases, 7th ed., 2009 Churchill Livingstone, An imprint of Elsevir, Chapter 257, Candida Species, John E. Edwards, Jr., pp. 3225-3240. “The most important predisposing factors to (causes of) Candida infection …are iatrogenic (this means caused by the doctor, or care giver, by over prescription of )… antibiotics … Antibiotics suppress normal bacterial flora and allow Candida organisms (fungus) to proliferate, especially in the GI tract (small and large intestines)….”
(5) Moldwin, Robert, MD, The Interstitial Cystitis Survival Guide, 2000, page 50: “Interstitial Cystitis is rarely only a bladder problem. One striking example is….pelvic floor dysfunction, PFD…seen in about 70% of IC patients, …Often some of the most pronounced symptoms of IC derive from abnormal muscle activity in this region, rather than from the bladder.” PFD has been recognized for about a century. A magazine article: Elle, Veronica Manchester, “Let Who Put What Where?”, page 528: : https://beyondbasicsptblog.com/2013/08/21/amy-is-in-elle-magazine/
(6) https://www.ncbi.nlm.nih.gov/pubmed/8437248 “25 potential risk factors (likely to lead to a diagnosis of IC/BPS) included 44.4% of the women reporting hysterectomy,” – in other words, hysterectomy can cause the symptoms urologists call IC/BPS. One successful treatment for the damage caused during a hysterectomy operation, is myofascial stricture release, a physical therapy. See Anne’s story. https://www.ncbi.nlm.nih.gov/pubmed/?term=Kozial+James+A+Douglas+C+Clark+Ruben+F+Gittes+and+Eng+M+Tan+The+Natural+History+of+Interstitial+Cystitis+A+Survey+of+374+Patients+-+The+Journal+of+Urology+Vol+149+465-469+March+1993 http://www.hersfoundation.com/facts.html
(7) Sharpe, VA and AI Faden, MEDICAL HARM: HISTORICAL, CONCEPTUAL AND ETHICAL DIMENTIONS OF IATROGENIC ILLNESS, Cambridge University Press, Cambridge, 1997, pp 65-67, 74, 71, 83, 127
(8) Daniel Lieberman, head of the Harvard Human Evolutionary Biology Department, tells us in his very readable book The Story of the Human Body; Evolution, Health, and Disease, 2013, that our bodies are basically Paleolithic. Our bodies evolve (change) extremely slowly, and are best adapted for the time before agriculture, 10,000 years ago. Lieberman lists new “hypothesized noninfectious mismatch diseases,” using the word “mismatch” because these epidemics are caused by a “mismatch” between our Paleolithic bodies and our current, “novel” environment – that is, among other things, the 50,000-100,000 synthetic chemicals, in unimaginable quantities and combinations, in our food, water, air, and in everyday objects, (e.g. plastic, with BPA, a carcinogen). Simply put, our bodies are not adapted to what we now see as normal modern life. If you think the rise in breast cancer is due to earlier detection or larger populations, this is not the case, says Lieberman, and explains.
Sources on genetically modified food, especially corn and soy, include a DVD, and book, both titled Genetic Roulette, and an article in Elle Magazine about an allergy to genetically modified corn are helpful: http://www.elle.com/beauty/health-fitness/advice/a12574/allergy-to-genetically-modified-corn/
(9) http://www.cuaj.ca/index.php/journal/article/view/2031 Multiple sensitivity phenotype in interstitial cystitis/
(10) Also, for decades, other urologists have noticed “diseases associated with IC/BPS,” which overlap with Dr. Nickel’s list: “immune system alterations such as autoimmunity or allergies,” “disruption of biological signaling systems, such as changes in hormone levels,” “other manifestations of damage to biological systems that result in disease or suboptimal functioning,” and a list of “associated diseases – allergies (40% of patients diagnosed with IC/BPS, Hand, 1949), Irritable bowel syndrome, IBS, (30% of patients), Koziol, 1994, Fibromyalgia, Clauw, 1997.) Kozial, James A., Douglas C. Clark, Ruben F. Gittes and Eng M. Tan, “The Natural History of Interstitial Cystitis: A Survey of 374 Patients - The Journal of Urology, Vol. 149, 465-469, March, 1993. Koziol mentions Epstein Barr virus as one “risk factor” or associated disease. Other authors have mentioned virus also.
(11) https://www.ncbi.nlm.nih.gov/pubmed/8437248 “25 potential risk factors (likely to lead to a diagnosis of IC/BPS) included 44.4% of the women reporting hysterectomy,” – in other words, hysterectomy can cause the symptoms urologists call IC/BPS. One successful treatment for the damage caused during a hysterectomy operation, is myofascial stricture release, a physical therapy. See Anne’s story in our Letter to the AUA. And http://www.hersfoundation.com/facts.html