Interstitial cystitis in the UK: results of a questionnaire survey of members of the Interstitial Cystitis Support Group.
OBJECTIVE
To examine the site, severity, and duration, of symptoms in patients with interstitial cystitis. To examine the treatments offered.


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.
Tincello
Douglas G
DG
Department of Obstetrics and Gynaecology, University of Leicester, Robert Kilpatrick Clinical Sciences Building, Leicester Royal Infirmary, P.O. Box 65, Leicester LE27LX, UK. dgt4@le.ac.uk
Walker
Anthony C H
AC
D000927:Anticonvulsants / Q000627:therapeutic use; D002927:Cimetidine / Q000627:therapeutic use; D018856:Cystitis, Interstitial / Q000150:complications / Q000523:psychology* / Q000628:therapy*; D003863:Depression / Q000453:epidemiology; D004121:Dimethyl Sulfoxide / Q000627:therapeutic use; D005260:Female; D006634:Histamine H1 Antagonists / Q000627:therapeutic use; D006801:Humans; D008297:Male; D010146:Pain; D010426:Pentosan Sulfuric Polyester / Q000627:therapeutic use; D011788:Quality of Life; D012657:Self-Help Groups; D012735:Sexual Dysfunction, Physiological / Q000209:etiology; D011795:Surveys and Questionnaires; D006113:United Kingdom; D014555:Urination Disorders
D000927:Anticonvulsants; D006634:Histamine H1 Antagonists; D010426:Pentosan Sulfuric Polyester; D002927:Cimetidine; D004121:Dimethyl Sulfoxide