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

(Published May 2008)

Interstitial cystitis/painful bladder syndrome (IC/PBS) is a chronic debilitating condition characterized by pelvic pain, urinary urgency, and urinary frequency.² Although many patients with IC/PBS experience pain as excruciating as that described in the patient quote to the left, the condition causes a wide range in symptom severity, which may lead to misdiagnosis or a delayed diagnosis. Experts estimate that the condition affects about 1.2 million women and 82,000 men in the United States.³ However, these figures may significantly underestimate the true prevalence of the condition.

Patients with IC/PBS suffer from a “silent affliction,” often appearing healthy but experiencing unrelenting pain that requires frequent trips to the bathroom, both day and night. They may curtail activities due to extreme urinary frequency. Sleep deprivation caused by pain and nocturia can lead to fatigue and depression. Many are unable to work. In addition to the personal toll that IC/PBS exacts, the condition is associated with significant health care costs. Experts estimated the total medical expenditures associated with IC/PBS in the United States to be $65.9 million in 2000.⁴

IC/PBS is a clinical syndrome for which the definition, etiology, diagnosis, natural history, true prevalence, and most effective treatment(s) are uncertain. Indeed, experts in the field are undecided about even the most appropriate name for the condition. Exacerbating and underlying these gaps in knowledge is a paucity of evidence-based scientific literature on the diagnosis, epidemiology, and treatment of IC/PBS. The current gaps in knowledge of IC/PBS directly affect patient care: in the past, patients experienced an average lag time of five to seven years before they received a diagnosis of IC/PBS.⁵

Many individuals with IC/PBS continue to suffer because of delays in diagnosis, misdiagnosis, and lack of awareness of the disorder. Primary care providers can play an essential role in reducing such suffering by identifying individuals whose symptoms are consistent with IC/PBS, promptly diagnosing and treating the disorder, and referring patients to specialists as necessary. For this reason, it is important for primary care providers to be aware of IC/PBS and become familiar with the presentation for diagnosis and recommendations for management of IC/PBS.

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.