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.

[1]  G. Sant,et al.  Hydroxyzine therapy for interstitial cystitis. , 1998, Urology.

[2]  B. von Garrelts,et al.  Interstitial cystitis: thirteen patients treated operatively with intestinal bladder substitutes. , 1966, Acta chirurgica Scandinavica.

[3]  R. Witherow,et al.  Oral cimetidine gives effective symptom relief in painful bladder disease: a prospective, randomized, double‐blind placebo‐controlled trial , 2001, BJU international.

[4]  T. Stamey,et al.  The surgical treatment of intractable interstitial cystitis. , 1980, The Journal of urology.

[5]  K. Whitmore.  Self-care regimens for patients with interstitial cystitis. , 1994, The Urologic clinics of North America.

[6]  K J Oravisto,et al.  Epidemiology of interstitial cystitis. , 1975, Annales chirurgiae et gynaecologiae Fenniae.

[7]  D J Hunter,et al.  Epidemiology of interstitial cystitis: a population based study. , 1999, The Journal of urology.

[8]  Norval J. C. Strachan,et al.  Modelling magnetic carrier particle targeting in the tumor microvasculature for cancer treatment , 2005 .

[9]  A. Wein,et al.  Associations among cystoscopic and urodynamic findings for women enrolled in the Interstitial Cystitis Data Base (ICDB) Study. , 1997, Urology.

[10]  J. Landis,et al.  The Interstitial Cystitis Data Base Study: concepts and preliminary baseline descriptive statistics. , 1997, Urology.

[11]  C. Parsons.  Epithelial coating techniques in the treatment of interstitial cystitis. , 1997, Urology.

[12]  H. Hansen,et al.  Interstitial cystitis and the potential role of gabapentin. , 2000, Southern medical journal.

[13]  J. Koziol.  Epidemiology of interstitial cystitis. , 1994, The Urologic clinics of North America.

[14]  N. Rothrock,et al.  Stress and symptoms in patients with interstitial cystitis: a life stress model. , 2001, Urology.

[15]  M. Pontari,et al.  Logical and systematic approach to the evaluation and management of patients suspected of having interstitial cystitis. , 1997, Urology.

[16]  D. Tincello,et al.  Leukocyte populations in interstitial cystitis and idiopathic reduced bladder storage. , 2002, Urology.

[17]  M. Frazer.  Idiopathic sensory urgency and early interstitial cystitis , 1993, International Urogynecology Journal.

[18]  P. Hanno,et al.  Amitriptyline in the treatment of interstitial cystitis. , 1994, The Urologic clinics of North America.

[19]  G. Sant,et al.  Hydroxyzine inhibits neurogenic bladder mast cell activation. , 1998, International journal of immunopharmacology.

[20]  G. Sant,et al.  Intravesical dimethyl sulfoxide (DMSO) for interstitial cystitis--a practical approach. , 1998, Urology.

[21]  M. Pauly,et al.  Epidemiology of Interstitial Cystitis: 2 , 1990 .

[22]  R. Gupta,et al.  Idiopathic reduced bladder storage versus interstitial cystitis. , 1992, The Journal of urology.

[23]  H. Mensink,et al.  Interstitial cystitis in The Netherlands: prevalence, diagnostic criteria and therapeutic preferences. , 1995, The Journal of urology.

[24]  T. Theoharides.  Hydroxyzine in the treatment of interstitial cystitis. , 1994, The Urologic clinics of North America.

[25]  James A Koziol,et al.  Increased prevalence of interstitial cystitis: previously unrecognized urologic and gynecologic cases identified using a new symptom questionnaire and intravesical potassium sensitivity. , 2002, Urology.

[26]  G. Sant,et al.  Pentosan polysulfate sodium for therapy of interstitial cystitis. A double-blind placebo-controlled clinical study. , 1990, Urology.

[27]  A. Wein,et al.  Summary of the National Institute of Arthritis, Diabetes, Digestive and Kidney Diseases Workshop on Interstitial Cystitis, National Institutes of Health, Bethesda, Maryland, August 28-29, 1987. , 1988, The Journal of urology.