Purpose: To examine the site, severity, and duration, of symptoms in patients with interstitial cystitis. To examine the treatments offered. Materials and met hods: Postal questionnaire administered to members of the Interstitial Cystitis Support Group, based in the United Kingdom. Results: 736 of 1148 (64%) question naires were returned. 696 (94.6%)-patients were women. 471 patients (64%) des cribed daily pain when symptoms were at their worst, and 273 (37%)-described d aily pain at the time of survey. Most patients reported frequency, urgency and n octuria. A wide range of treatments had been offered, but drugs of proven effica cy were offered to less than a third of patients: cimetidine (36%)-; antihista mines (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 l east 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 highligh t the continuing difficulty in making a prompt diagnosis. We recommend that a Eu ropean survey or registry of interstitial cystitis patients would help to establ ish a minimum standard of care. A suggested treatment algorithm is provided.
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