Sites of pain from interstitial cystitis/painful bladder syndrome

In interstitial cystitis/painful bladder syndrome multiple pain sites are common. We hypothesized that a careful and systematic description of the pain of interstitial cystitis/painful bladder syndrome might provide clues to its pathogenesis.

Women with 12 months or greater of interstitial cystitis/painful bladder syndrome symptoms underwent a medical record review and interview. Each completed a questionnaire that included views of the female body and described up to 5 interstitial cystitis/painful bladder syndrome pains, noting 40 descriptors for each.

Two-thirds of the 226 patients reported multiple pains. Pain could be consolidated at 4 sites, including suprapubic, urethral, genital and nongenitourinary. Most descriptors were similar and little evidence indicated that 1 pain influenced pain at another site. Another 3 patterns were evident, including 1) a suprapubic > urethral > genital > nongenitourinary ranking in site distribution and at each site proportions that were solitary, the worst and the most frequent pains, and pains that responded to bladder events, 2) site specific allodynia, and 3) for urethral and genital pains a wider spectrum of sensations, including burning, stinging and sharp. Patients with urethral (38%) or genital (27%) pain did not differ from those without such pain in 95% of 44 important characteristics.

Suprapubic prominence and changes in the voiding cycle are features consistent with but do not prove that the bladder is the pain generator in interstitial cystitis/painful bladder syndrome and the pain sites described by patients are referred from it. The patients with interstitial cystitis/painful bladder syndrome who might have been diagnosed with vulvodynia or urethral syndrome did not differ from others in important patient variables.