A prospective early history of incident interstitial cystitis/painful bladder syndrome

The longitudinal history of interstitial cystitis/painful bladder syndrome has been studied infrequently. In a national sample of incident cases we assessed changes in symptoms during the first several years of interstitial cystitis/painful bladder syndrome.

We recruited 312 women with a history of interstitial cystitis/painful bladder syndrome symptoms of 12 months or less and interviewed them by telephone at baseline, and 6, 12, 18, 24, 36 and 48 months later. We queried symptoms in the last week and interval medication use. Individual and composite symptom categories were constructed.

The median history of symptoms at study enrollment was 9 months. Median followup was 33 months after onset. The 57 study withdrawals (18%) were not substantively different than those remaining in followup. Many cases of severe and moderate interstitial cystitis/painful bladder syndrome at enrollment improved with time. As followup progressed, increasing proportions reported improvement while decreasing proportions reported symptom worsening. Of the women 27 (9%) reported at least temporary symptom remission.

Of 304 women with incident interstitial cystitis/painful bladder syndrome 35% reported improvement from baseline in symptoms at last followup a median of 33 months after onset. However, the disappearance of all symptoms at any followup was uncommon.