Interstitial cystitis in the UK: results of a questionnaire survey of members of the Interstitial Cystitis Support Group Douglas G. Tincello a, * , Anthony C.H. Walker b a Department of Obstetrics and Gynaecology, University of Leicester, Robert Kilpatrick Clinical Sciences Building, Leicester Royal Infirmary, P.O. Box 65, Leicester LE27LX, UK b Cystitis Overactive Bladder Foundation (Interstitial Cystitis Support Group), 76 High Street, Stony Stratford, Buckinghamshire MK11 1AH, UK. Received 16 March 2004; received in revised form 29 April 2004; accepted 13 June 2004 Abstract 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. # 2004 Elsevier Ireland Ltd. All rights reserved. Keywords: Bladder; Symptoms; Interstitial cystitis; Quality of life; Treatment 1. Introduction Interstitial cystitis (IC) is a term given to a chronic, relapsing syndrome of bladder pain associated with urgency, frequency and nocturia. It remains a diagnosis of exclusion and for research studies the National Institute of Arthritis, Diabetes, Digestive and Kidney Diseases have published criteria for diagnosis [1]. However, many clinicians adopt a looser definition for the clinical care of these patients, which includes frequency, nocturia, pain on bladder filling and urodynamic evidence of reduced bladder capacity (first desire <150 ml, and capacity <350 ml). There is evidence that these patients do indeed have IC [2–4]. The disease is poorly understood and several different theories of pathogenesis are in vogue. Treatments for the disease are only moderately effective and reflect the lack of knowledge about causality. In the USA the disease prevalence is estimated to be between 30 and 67 per 100,000 population [5,6] and a large nationwide database study was established in 1993 to obtain reliable and accurate data about the symptoms, natural history and progress of the disease [7]. In contrast to the situation in the USA, the prevalence, epidemiology and clinical course of the disease in other countries is less well studied. Early estimates from Scandinavia were from 0.5 to 4%, but were based upon small studies [8,9]. Two large studies calculated the prevalence in Finland at 18.1 per 100,000 [10], and in the Netherlands at between 8 and 16 per 100,000 [11]. To our knowledge there have been no attempts at collecting epidemiological data from patients with IC in the United Kingdom. www.elsevier.com/locate/ejogrb European Journal of Obstetrics & Gynecology and Reproductive Biology 118 (2005) 91–95 * Corresponding author. Tel.: +44 116 258 8391; fax: +44 116 273 1620. E-mail address: dgt4@le.ac.uk (D.G. Tincello). 0301-2115/$ – see front matter # 2004 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.ejogrb.2004.06.012