Interstitial cystitis in the UK: results of a questionnaire survey of members of the Interstitial Cystitis Support Group

Purpose: To examine the site, severity, and duration, of symptoms in patients with interstitial cystitis. To examine the treatments offered. Materials and methods: Postal questionnaire administered to members of the Interstitial Cystitis Support Group, based in the United Kingdom. Results: 736 of 1148 (64%) questionnaires were returned. 696 (94.6%) patients were women. 471 patients (64%) described daily pain when symptoms were at their worst, and 273 (37%) described daily pain at the time of survey. Most patients reported frequency, urgency and nocturia. A wide range of treatments had been offered, but drugs of proven efficacy were offered to less than a third of patients: cimetidine (36%); antihistamines (5%); pentosan polysulphate (12%); DMSO (33%); and anticonvulsants (2%). 495 patients (67%) reported “considerable impact” or more on their lifestyle and 346 (46%) reported moderate depression or worse. 364 (49%) reported at least considerable difficulties with sexual intercourse. Conclusions: This survey supports the work of others about the nature of symptoms and their impact upon quality of life. The data highlight the continuing difficulty in making a prompt diagnosis. We recommend that a European survey or registry of interstitial cystitis patients would help to establish a minimum standard of care. A suggested treatment algorithm is provided.