This research, on a urological diagnosis and treatment of interstitial cystitis/bladder pain syndrome, IC/BPS, attempts to answer three questions:
- What does the American Urological Association, AUA, recommend to 22,000 urologists in America as the best treatment for a diagnosis of interstitial cystitis/bladder pain syndrome (IC/BPS)? (This diagnosis is for symptoms of urgency and frequency and “bladder pain.”) Keep in mind that urologists all over the world follow the treatment guidelines the AUA recommends, affecting millions more women, and some men.
- Does this “treatment” improve patient symptoms? In a word, no.
- Are there real causes and even cures for the symptoms of urgency and frequency and pelvic pain, and what are they?
The evidence we use to answer these questions is:
- from an online survey of 1628 women who experienced this “treatment,” analyzed and published in the United States, and also by the team of the President of the Canadian Urological Association, CUA
- from the best evidence that urologists have regarding the efficacy of the treatment they recommend.
- Published on our original website, www.cystitispatientsurvey.com, Letter_to_AUA-cystitispatientsurvey.pdf
- Windsor Square, an online newspaper, published our Letter to the AUA because the Editor had a friend who had suffered the “treatment” recommended by the AUA: http://www.windsorsquare.ca/archives/2013/do-you-suffer-from-pelvic-pain/53922
- Our Bodies Ourselves: http://www.ourbodiesourselves.org/cms/assets/uploads/2014/04/Zakariasen_ltr_to_AUA_4.18.13.pdf
- 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). (footnote 5) 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/
- As many as 70% of people diagnosed with IC/BPS actually have Pelvic floor muscle dysfunction, PFMD, (footnote 6) James’ story in our Letter to the AUA
- Various pelvic surgeries (hysterectomies, (footnote 7) 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 (footnote 8) 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.
- Miami Mom and Jackie: Hunner’s ulcers in the bladder. The AUA says that this condition should be ruled out before a diagnosis of IC/BPS; actually, all the conditions in this list should be ruled out, and many more, and the diagnosis of IC/BPS probably should be not used). Two women have told me recently that they saw many urologists who missed this condition, and when it was finally found, the correct surgery by a very competent and kind urologist had finally relieved them of years pain.
- 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. (footnote 9) 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, 2013, 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, or “the patient will not be helped.” (footnote 10)
- 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 the AUA and CUA, in the form of their Practice Guidelines, have claimed that their treatment is effective.
- UROLOGY (the Journal) January, 2008: “Patient Perceived Outcomes of Treatments Used for Interstitial Cystitis.” For the Abstract, i.e. short version, click here: https://www.goldjournal.net/article/S0090-4295(07)02143-7/fulltext
- 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/
- 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/
- 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/
- 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.
In short, some doctors would call the American Urological Association’s (AUA) Practice Guidelines (suggested treatment) for IC/BPS “Type II Medical Malpractice, that is “..doing something to patients … that was not needed in the first place. This kind of malpractice is at present a scourge in all medical specialties.” (footnote 1) See Dr. Nortin M. Hadler’s books: Last Well Person, and Worried Sick.
Our Publications on the answers to these three questions:
I recommend that you read all of these publications, and especially the three patient stories (James, Susie and Anne) in our Letter to the AUA, 2013, James’ story, pages 33-36, Susie’s story, pages 36-44, and Anne’s story, pages 44-58. Until you read these stories, you will not know how much more pain the AUA treatment can cause you.
In 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 dozens of trial and error surgeries, with surgical CPT codes. As surgeries, they require antibiotics also.
The surgeries recommended 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
http://www.auanet.org/guidelines/interstitial-cystitis/bladder-pain-syndrome-(2011-amended-2014) For a summary, click to open: Executive Summary
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. (footnote 2)
All of our publications show evidence that these surgeries and antibiotics do not provide any symptom relief to most patients; 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. (footnote 3)
Dr. Elizabeth Kavaler, my urologist, and I worked together from about 2002 to 2017, on an online survey of more than 1600 people diagnosed with IC/BPS, about the outcomes of treatments recommended by the AUA and a Letter to the AUA about the results of our survey and the cruelty of their Practice Guidelines.
Dr. Christopher Payne’s lectures in 2017, at the end of this list of publications are also very important information. In short, Dr. Payne (Stanford Professor Emeritus) says that the “Emperor has no clothes,” the Emperor being the AUA Guidelines for treatment of so-called IC/BPS.
1. Publications of Dr. Elizabeth Kavaler’s and my Letter to the American Urological Association (AUA)in 2013: It’s long, but it’s worth it! And Anne’s, James’ and Susie’s stories are all here too.
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.(footnote 4) Rovner, Eric , KJ Propert, et. al “Treatments used in Women with Interstitial Cystitis: The Interstitial Cystitis Data Base Study Experience” UROLOGY 56 (6), 2000.
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 treatment 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 is 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) is unknown, there is no cure, but that with trial and error surgeries on the bladder, eventually, there will be some relief of symptoms.
I knew by this time, from my own experience, the experience of dozens of other women and some men 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 they had provided the appropriate treatment. These causes of their symptoms were many, for example 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 our Letter to the AUA, is an example of a diagnosis of IC by several urologists, 31 trial and error surgeries on her bladder, which only made her intense and chronic pain worse, and finally, by accident!, the correct diagnosis - myofascial stricture, caused by a hysterectomy she had just before the symptoms urologists call IC began. Myofascial Release physical therapy, MFR, 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, rarely urologists. 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:
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. (footnote 11)
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 AUA 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,as well as Anne’s story, in our Letter to the AUA, James’ story, pages 33-36, Susie’s story, pages 36-44, and Anne’s story, pages 44-58. The real cause of James’ so-called IC was actually pelvic floor muscle dysfunction, PFMD, not a bladder problem. Susie had mild urgency and frequency. Urologists diagnosed her with IC/BPS and this led to dozens of surgeries, and the antibiotics that went with those surgeries, recommended by the AUA. This “treatment” led to removal of her bladder and to cancer. She has given us her story, a warning, “so that other people won’t have to go through what I went through.”
2. Publications of our Survey Results, the survey on our original website, www.cystitispatientsurvey.com :
3. My story (Kay Zakariasen), and survey results:
At present, I am grateful to Dr. Christopher Payne, Professor Emeritus of Urology at Stanford, who gave lectures at three urological meetings in 2017.
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. (footnote 12)
In addition to myofascial stricture as a cause of the symptoms the AUA calls a bladder disease (IC/BPS), from the interviews that I have done with dozens of women, some men, we know that there are also many more causes of our symptoms as per the list earlier in this this document.
How long have urologists been operating on women’s bladder, nervous system, vagina, for symptoms of urgency and frequency and pelvic pain? And how many women and female children? Incalculable. A century and a half of cruelty:
The Historical Context, since 1871, of the current American Urological Association Practice Guidelines for two symptoms – urgency and frequency and “bladder pain,” currently called interstitial cystitis/bladder pain syndrome, IC/BPS by the AUA:
The following surgeries, since 1871, would have caused chronic pain, and maimed and killed many of the women that experienced them and without antibiotics (before 1940) would have caused death in many, from infection. At the end of this list are 6 different ways to remove the bladder – which thousands (maybe more) of women have endured, with no benefit. Removal of the bladder is still being done, often after severe hydrodistentions are done by urologists, severely reducing the capacity of the bladder. While it is known that every urologist does their own version of hydrodistention, some 3 hours at high pressure, and this is recommended against in the Practice Guidelines,but the AUA does nothing to stop this. See Susie’s story, and since removal of the bladder is part of the Guidelines, there must be thousands more stories like hers.
27 surgeries (Sant/Christmas):
INTERSTITIAL CYSTITIS, Ed. Grannum Sant, Lippincott-Raven Publishers, Philadelphia, 1997, Chapter 1, “Historical Aspects of Interstitial Cystitis,” 1-7, Table 4: Review of surgical treatments for IC, p. 7:
1. Formation of vesico-vaginal fistula, Tait, 1870 (footnote 3)
2. Local debridement, Fenwick, 1896 (5)
3. Local excision of ulcers, Hunner, 1915 (7)
4. Fulguration of ulcers, Kreutzmann, 1922 (12)
5. Dental extraction, Frontz, 1928 (14)
6. Cystodistension under general anaesthesia, Bumpus, 1930 (16)
7. Presacral neurectomy, Pieri, 1930 (23)
8. Cordotomy, Grant, 1931 (85)
9. Augmentation enterocystoplasty, Sebening, 1932 (25)
10. Excision of superior hypogastric plexus, Douglass, 1934 (27)
11. Cystoscopic ulcer resection, Sears, 1936 (30)
12. Transvesical alcohol injection, Folsom and O’Brien,1937 (not 22, but 33+34)
13. Bilateral ureterosigmoidostomy, Counselor, 1937 (34)
14. Sensory denervation by local sympathectomy, Scott & Schroeder, 1938 (28)
15. Subtotal cystectomy & substitution enterocystoplasty, (Folsom et. al.)1940 (36)
16. Cystoscopic hydrocortisone infiltration, Johnston, 1956 (48)
17. Sacral (S l-3) root rhizotomy,Franksson, 1957 (50)
18. Sacral (S 2-3) root rhizotomy, Bohn & Franksson, 1957 (50)
19. Sacral (S 3) root rhizotomy, Milner & Garlick, 1957 (51)
20. Subtotal cystectomy & colocystoplasty, Gil-Vernet et. al, 1960 (22)
21. Cystocystoplasty, Warwick & Ashken, 1967 (86)
22. Total cystectomy and ileal conduit diversion, Worth & Warwick, 1973 (87)
23. Total cystectomy & ileal conduit diversion, Jacobo et al., 1974 (88)
24. Neodymium YAG-laser therapy, Shanberg et al., 1985 (89)
25. Laparoscopic laser destruction of nerve plexus, Gillespie, 1994 (90)
26. Total bladder replacement by ileocolic segment, Bejany & Politano, 1995 (91)
27. Total bladder replacement by Kock pouch, Christmas