Screening, Treatment, and Management of IC/PBS

(Published May 2008)

Epidemiology, Risk Factors, and Impact of Interstitial Cystitis/Painful Bladder Syndrome


Interstitial cystitis/painful bladder syndrome (IC/PBS) predominantly affects women, with an average age at onset of 40 years.1 It also affects men and, in rare cases, children.1 The estimated prevalence of IC/PBS varies considerably, depending upon the criteria used for defining the condition and the data collection methods used.

Epidemiological studies have used a variety of data collection techniques—application of specific diagnostic criteria, physician diagnosis, patient self-report, and surveying for symptoms suggestive of the condition—with a resulting wide range of estimated prevalence. The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) (based on National Health and Nutrition Examination Survey III [NHANES III]) estimated that 1.2 million women and 82,000 men in the United States have IC/PBS.2 One study found a prevalence of IC/PBS in the general population of 60 per 100,000, although this is believed to be an underestimate.3 Indeed, as shown in Figure 1, the prevalence in a managed care population was 197 per 100,000 for women and 41 per 100,000 for men when diagnosed using ICD-9 code.4

Risk Factors

The only definitive risk factor for IC/PBS is female gender: the female-to-male ratio is generally estimated to be 9:1.2 However, in the managed care study just mentioned, the ratio was only 5:1.4 Other risk factors that have been proposed include heredity and previous urinary tract infection. Recent research suggests that heredity might play a role in the pathogenesis of IC/PBS. As shown in Table 1, a 2004 study found that prevalence of IC/PBS in females who have a first-degree relative with confirmed IC/PBS is 1,431 per 100,000.5 In comparison, the prevalence rate in the general population is estimated to be about 60 per 100,000.3 The 2004 study also found that the prevalence of IC/PBS in first-degree female relatives of patients with IC/PBS confirmed by NIDDK diagnostic criteria was 17 times higher than the rate in the general population.5

Table 1: IC/PBS Risk Factors.5 Prevalence of IC symptoms and “confirmed” IC among first-degree relatives of 2,058 Fishbein/ICA survey respondents with complete family reports.
First-Degree Relatives (n)
Sex Individuals (n) Only IC Symptoms “Confirmed” IC Prevalence of “Confirmed” (per 100,000)
Female 5,802 678 83 1,431
Male 5,663 227 9 159
Female (31-73yr) 3,138 360 46 1,466

Previous urinary tract infection has been proposed as a possible risk factor for IC/PBS. Anecdotal reports suggest that some patients experience the onset of IC/PBS symptoms after an episode of acute bacterial cystitis. However, current research does not support bacterial infection as a risk factor for the condition, although it remains possible that infection serves as a trigger in some patients.2,6


IC/PBS has a tremendous impact on individual patients and their families. Patients with IC/PBS may experience unrelenting pain and urgency that require frequent trips to the bathroom because of the need to void. They may curtail activities due to pain or extreme urinary frequency. Because of the recurrent pain and frequency, many patients with IC/PBS are unable to fulfill work or family obligations. Many are unable to work. They may suffer from interrupted sleep, which can lead to fatigue and depression. In extreme cases, patients may take their own lives.7

IC/PBS may cause dyspareunia or other limitations to sexual intimacy. In fact, a recent comparison study of female patients with IC/PBS and women without the condition found that patients with IC/PBS were significantly more likely to have sexual dysfunction, including issues with arousal, lubrication, orgasm, and pain during intercourse and orgasm.8 Because of these factors, women with IC/PBS may avoid any type of sexual intimacy.

Over time, the impact of IC/PBS—the effects on patients’ sleep, career, family life, sexuality—can negatively affect their quality of life (Figure 2). In fact, patients with IC/PBS score lower on quality-of-life measures than patients with end-stage renal disease who are undergoing hemodialysis.9

IC/PBS is associated with significant economic costs in both direct medical costs and lost productivity. It has been estimated that $2 are spent for patients with IC/PBS in direct medical costs alone for every $1 spent for patients without IC/PBS.2 The NIDDK has calculated that IC/PBS was responsible for at least 4,137,000 outpatient physician or clinic visits in 2000 and an outlay of $65.9 million, excluding missed work and lost productivity.10 Estimates of medical costs plus lost productivity were $428 million in 1987.9 Presumably these costs are much higher two decades later.


  1. Hanno PM. Painful bladder syndrome/interstitial cystitis and related disorders. In: Wein AJ, editor. Campbell-Walsh Urology. 9th ed. Philadelphia: Saunders; 2007. pp. 330-70.
  2. 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. 07-5512:125-154.
  3. Curhan GC, Speizer FE, Hunter DJ, Curhan SG, Stampfer MJ. Epidemiology of interstitial cystitis: a population based study. J Urol. 1999;161:549-52.
  4. Clemens JQ, Meenan RT, Rosetti MC, Gao Sy, Calhoun EA. Prevalence and incidence of interstitial cystitis in a managed care population. J Urol. 2005;173(1):98-102.
  5. Warren JW, Jackson TL, Langenberg P, Meyers DJ, Xu J. Prevalence of interstitial cystitis in first-degree relatives of patients with interstitial cystitis. Urology. 2004;63(1):17-21.
  6. Moldwin RM, Sant GR. Interstitial cystitis: a pathophysiology and treatment update. Clin Obstet Gynecol. 2002;45:259-72.
  7. Rabin C, O’Leary A, Neighbors C, Whitmore KE. Pain and depression experienced by women with interstitial cystitis. Women & Health. 2000;31(4):67-81.
  8. Ottem DP, Carr LK, Perks AE, Lee P, Teichman JMH. Interstitial cystitis and female sexual dysfunction. Urology. 2007;69:608-10.
  9. Held PJ, Hanno PM, Wein AJ, Epidemiology of interstitial cystitis: 2. In: Hanno PM, Staskin DR, Krane RJ, et al., editors. Interstitial Cystitis. New York: Springer-Verlag; 1990. pp. 29-48.
  10. 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.