History of Interstitial Cystitis
In 1836, Dr. Joseph Parrish, a surgeon in Philadelphia, was the first to document cases of severe bladder dysfunction which he labeled as “tic doloureux of the bladder.” (1) Fifty years later, Skene coined the term “interstitial cystitis” to describe what he thought was inflammation of the bladder wall that had destroyed the mucus membrane.(2)
Technology arrived in the early 1900‘s with the development of the first cystoscope, an instrument that allowed physicians to look inside the bladder. In 1918, Guy Hunner MD reported that he had observed red, bleeding areas in the bladder wall of patients that he believed were ulcers, thus coining the term “Hunner’s Ulcers.” (3) For the following sixty years, urologists believed that all IC bladders were ulcerated, a finding which was later disproven. Only a small percentage of patients have these more intense areas of inflammation, now also known as “Hunner’s lesions.” (4)
In 1944, Cristol published the first study of men with IC, documenting 78 cases. (5) In 1949, Hand was the first to provide an in-depth description of the bladder wall in patients with IC symptoms. He found “small, discrete submucosal hemorrhages… dot-like bleeding points” in bladders.(6) These later became known as “glomerulations.” (7) In 1953, the first paper was published showing that children could have IC. (8)
IC patients experienced a profound setback in 1958 when three clinicians suggested that a woman who had been under medical care from childhood to 29 years of age with severe IC, may have had “repressed hostility towards parental figures handled masochistically via bladder symptoms since infancy.” (9) This led to the misperception that IC was a mental disorder that, sadly, was taught in medical schools through the 1980‘s. Some patients still face physicians who tell them that IC is “all in your head” despite millions of dollars in research proving that IC is a serious and often disabling pelvic disorder.
In the late 1970‘s, a paradigm shift occurred. Rather than focusing on ulcers, Messing and Stamey proposed that bladder symptoms AND the presence of glomerulations on the bladder wall were the hallmarks of IC. (10) They also suggested that a diagnosis should be made through the exclusion of other diseases.
In 1987, the US National Institutes of Health (NIH/NIDDK) created their first working definition of IC, requiring that patients have either glomerulations or ulcers on the bladder along with symptoms of bladder pain or urinary urgency.(11) These very strict criteria were meant only for use in research studies yet became a defacto definition of IC in the USA. They excluded, for example, patients who had symptoms less than nine months, patients who urinated less than 8 times per day and patients under the age of 18. It was later determined that 60% of the patients who had IC wouldn’t qualify using these criteria. (12) As a result, the research community began focusing more on symptoms rather than specific bladder wall findings.
In 2002, the International Continence Society triggered fierce debate by selecting the first new name in eighty years, “painful bladder syndrome (PBS).” (13) Many felt that term IC did not accurately describe the condition because IC does not involve the interstitial layers of the bladder wall. Some patients have no visible bladder wall damage. In 2003, the international IC community agreed and suggested “interstitial cystitis / painful bladder syndrome (IC/PBS). (14) In 2004, researchers from several nations voted to reverse the names, placing painful bladder syndrome first, (PBS/IC). (15)
In 2006, the European ESSIC Society proposed yet another radical change. They began using the term “bladder pain syndrome (BPS)” to conform with the taxonomy of other similar pain syndromes and also applied a new rating scale based upon the results of a hydrodistention and tissue biopsy. Grade 1 patients have a normal bladder, Grade 2 patients have glomerulations and Grade 3 patients have Hunner’s lesions. If a biopsy from the bladder was normal, the grade would also include a designation of A. If the biopsy was inconclusive, it would be receive a B score. If the biopsy showed signs of inflammation, mastocystosis, granulation and/or fibrosis, it would receive a score of C. Thus, the mildest patients would receive a score of BPS 1A, and the most severe BPS 3C. (16)
Physicians in Japan, Taiwan and Korea took a different approach. They chose to use the terms “hypersensitive bladder syndrome (HBS)” and interstitial cystitis (IC) in their national guidelines which are still in use today. (17)
In Fall 2007, the National Institutes of Health launched the Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network to help uncover the genetic, biological and behavioral relationships of IC and its related conditions (i.e. irritable bowel syndrome, etc.) New discussions in the IC research movement begin to focus on the concept of neuroinflammation and neurosensitization. It may be that once our body has sustained an injury, it may create a cascade like effect of neurosensitization in nearby organs.
In 2011, the American Urological Association chose to use the name “Interstitial Cystitis/ Bladder Pain Syndrome (IC/BPS),” due, in great part, to concerns raised about health and disability insurance plans that had already recognized IC as a condition to be covered. The AUA diagnostic criteria focuses almost entirely on symptoms. (18)
As if that weren’t confusing enough, because IC/BPS often co-exists with and may be related to prostatitis, some researchers (including the US National Institutes of Health) classify IC and chronic prostatitis as a “urologic chronic pelvic pain syndrome (UCPPS).” (9)
Others include IC, IBS, endometriosis, pelvic floor dysfunction, vulvodynia and prostatodynia collectively in the term “chronic pelvic pain syndrome (CPPS).” This was reflected at the 2013 annual meeting of the AUA, where two new courses were offered that trained urologists in the diagnosis of chronic pelvic pain. A very strong emphasis was placed on the examination of the pelvic floor muscles and the use of physical therapy as an important treatment modality. The International Adhesions Society has also coined the term “complex abdominal and pelvic pain syndrome (CAPPS).” (10)
- Parrish J. Tic doloureux of the urinary bladder. Practical observations on strangulated hermia and some of the diseases of the urinary organs. Philadelphia: Key and Biddle: 1836. p. 309-13
- Skene AJC. Diseases of the bladder and urethra in women. New York: William Wood: 1887
- Hunner GL. A rare type of bladder ulcer in women; report of cases. JAMA. 1918; 70(4):203-212
- van de Merwe J, et al. Diagnostic critera, classification and nomenclature for PBS/IC: an ESSIC proposal. Eur. Urol. 2008;53:60-7
- Cristol DS, Greene LF, Thompson GJ. Interstitial cystitis of men, a review of seventy-eight cases. JAMA 1944;126:825-828
- Hand JR. Interstitial cystitis: report of 223 cases (204 women and 19 men) J. Urol. 1949;61:291-310
- Walsh A. Interstitial cystitis, In: Harrison JH, et al. editors Campbell’s Urology. 4th ed. WB Saunders; 1978. p. 693-707.
- McDonald HP, Upchurch WE, Sturdevant CE. Interstitial cystitis in children. J Urol 1953;70:890-893
- Bowers JE, Schwarz BE, Leon MJ. Masochism and interstitial cystitis. Psychosom Med 1958;20:296-302
- Messing EM, Stamey TA. Interstitial cystitis, early diagnosis, pathology and treatment. Urology 1978;12:381-392
- Gillenwater JY, et al. Summary of the NIDDK Diseases Workshop on Interstitial Cystitis, NIH. J UROL. 1988;140(1):203-206
- Hanno P, et al. The diagnosis of IC revisited: lessons learned from the NIH IC Database Study. J Urol. 1999;161(2):553-7
- Abrams P, et al. The standardisation of termination of lower urinary tract function: report from the standardisation subcommittee of the ICS. Neurouol Urodyn. 2002;21:167-78
- Ueda T, et al. Interstitial cystitis and frequency-urgency syndrome (OAB syndrome). Int J Urol 2003;10(Suppl):S39-48
- Hanno P, et al. International consultation on IC – Rome. September 2004/Forging an international consensus: progress in PBS/IC. Int Urogynecol J Pelvic Floor Dysfunct. 2005;16 Suppl 1:S2-34
- van de Merwe J, et al. Diagnostic criteria, classification and nomenclature for PBS/IC: an ESSIC proposal. Eur Urol. 2008;53(1):60-7
- Homma Y, et al. Clinical guidelines for the IC and HBS. Int. J Urol. 2009;16(7):597-615
- Hanno P, et al. AUA guidelines for the diagnosis and treatment of IC/BPS. J Urol. 2011;185(6):2162-70
- Defining the Urologic Chronic Pelvic Pain Syndromes: A New Beginning – NIDDK conference, June 16-17, Bethesda MD 2008
- Echenberg R. IC’s Role in CAPPS. BrightTalk Webinar April 4, 2013 – https://www.brighttalk.com/community/medical-research/webcast/9263/68467