Screening, Treatment, and Management of IC/PBS – Definition

(Published May 2008)

Definition and Nomenclature of Interstitial Cystitis/Painful Bladder Syndrome

Much remains unknown about interstitial cystitis/painful bladder syndrome (IC/PBS). Because (1) the pathological processes underlying the condition are not yet elucidated, (2) biological markers of the condition are not yet available, and (3) the type and severity of symptoms can vary, clearly defining the condition is not yet possible. For example, it is not yet known whether IC/PBS represents a systemic disease, is localized to the bladder, or is initially localized to the bladder and later evolves into a systemic disease.

After interactive discussion about these gaps in knowledge, participants of an expert consensus meeting on IC/PBS convened by ARHP and the ICA in February 2007 accepted the following as a definition for IC/PBS:

Pelvic pain, pressure, or discomfort related to the bladder, typically associated with persistent urge to void or urinary frequency, in the absence of infection or other pathology.

Participants decided to add the phrase “persistent urge to void” to help distinguish the symptoms of IC/PBS from those of overactive bladder. Participants also decided that the definition should specify that urinary frequency is associated with pelvic discomfort or pain, rather than necessarily precipitated by it. Further, they purposefully crafted the definition to require either urgency or frequency, but not necessarily both.

Not only has the definition of IC/PBS been controversial but even the name IC/PBS is under debate. A number of other names have been used for the condition, including interstitial cystitis, painful bladder syndrome, urethral syndrome, trigonitis, and bladder pain syndrome, among others. In recent years, a variety of groups have proposed different names, based in part on their beliefs about the underlying etiology of IC/PBS.

At the consensus meeting convened by ARHP and the ICA, the majority of participants concluded:

The nomenclature of IC/PBS may need to change, but change should not be undertaken now because there is insufficient evidence to support a change. Any change in nomenclature should be evidence-based. The majority of the group favored retaining IC in whatever name is considered in the future and positioning it first, as in IC/PBS.

No consensus was reached on the name, but a majority agreed to the term interstitial cystitis/painful bladder syndrome.

References:

1. The Many Faces of IC: People Living with Interstitial Cystitis: Their Stories. Rockville, MD: Interstitial Cystitis Association; 2006.
2. Hanno PM. Painful bladder syndrome/interstitial cystitis and related disorders. In: Wein AJ, editor. Campbell-Walsh Urology. 9th ed. Philadelphia: Saunders; 2007. p. 330-70.
3. Clemens JQ, Joyce GF, Wise M, Payne CK. Interstitial cystitis and painful bladder syndrome. In: Litwin MS, Saigal CS, editors. Urologic Diseases in America. US Department of Health and Human Services, Public Health Service, National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases. Washington, DC: US Government Printing Office; 2007. NIH Publication No. 07-5512:125-54.
4. Litwin MS, Saigal CS. Introduction. In: Litwin MS, Saigal CS editors. Urologic Diseases in America. US Department of Health and Human Services, Public Health Service, National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases. Washington, DC: US Government Printing Office; 2007. NIH Publication No. 07-5512:3-7.
5. Curhan GC, Speizer FE, Hunter DJ, Curhan SG, Stampfer MJ. Epidemiology of interstitial cystitis: a population based study. J Urol. 1999;161:549-52.