Status of international consensus on interstitial cystitis/bladder pain syndrome/painful bladder syndrome: 2008 snapshot

Over the last 6 years there have been ongoing efforts around the world to standardize nomenclature, definition, and evaluation of interstitial cystitis/bladder pain syndrome/painful bladder syndrome. The convergence this year of several new projects stimulated an effort to bring together thought leaders from around the world to give a snapshot of current thinking with regard to this disorder. The Society for Urodynamics and Female Urology brought together thought leaders from Europe, Asia, and the United States to Miami, and a broad, structured discussion ensued which is the subject of this report. The most appropriate name of the disease remains an area of contention. A final “definition” of BPS/IC did garner substantial agreement among participants: An unpleasant sensation (pain, pressure, discomfort) perceived to be related to the urinary bladder, associated with lower urinary tract symptoms of more than 6 weeks duration, in the absence of infection or other identifiable causes. It seems that the world is moving to a presumptive diagnosis based on history and physical examination, and relying on invasive procedures for more complex cases, although this is by no means a universal opinion, being more prevalent in the United States and Asia than in Europe. It is hoped that the conference proceedings can serve as a basis for future efforts to develop formal definitions, guidelines, and best practice policies to further advancement of the field. Neurourol. Urodynam. 28:274–286, 2009. © 2009 Wiley‐Liss, Inc.     

Clinical guidelines for interstitial cystitis/bladder pain syndrome

The clinical guidelines for interstitial cystitis and related symptomatic conditions were revised by updating our previous guidelines. The current guidelines define interstitial cystitis/bladder pain syndrome as a condition with chronic pelvic pain, pressure or discomfort perceived to be related to the urinary bladder accompanied by other urinary symptoms, such as persistent urge to void or urinary frequency in the absence of confusable diseases. The characteristic symptom complex is collectively referred as hypersensitive bladder symptoms. Interstitial cystitis/bladder pain syndrome is divided into Hunner-type interstitial cystitis and bladder pain syndrome; Hunner-type interstitial cystitis and bladder pain syndrome represent interstitial cystitis/bladder pain syndrome with Hunner lesions and interstitial cystitis/bladder pain syndrome without Hunner lesions, respectively. So-called non-Hunner-type interstitial cystitis featured by glomerulations or bladder bleeding after distension is included in bladder pain syndrome. The symptoms are virtually indistinguishable between Hunner-type interstitial cystitis and bladder pain syndrome; however, Hunner-type interstitial cystitis and bladder pain syndrome should be considered as a separate entity of disorder. Histopathology totally differs between Hunner-type interstitial cystitis and bladder pain syndrome; Hunner-type interstitial cystitis is associated with severe inflammation of the urinary bladder accompanied by lymphoplasmacytic infiltration and urothelial denudation, whereas bladder pain syndrome shows little pathological changes in the bladder. Pathophysiology would also differ between Hunner-type interstitial cystitis and bladder pain syndrome, involving interaction of multiple factors, such as inflammation, autoimmunity, infection, exogenous substances, urothelial dysfunction, neural hyperactivity and extrabladder disorders. The patients should be treated differently based on the diagnosis of Hunner-type interstitial cystitis or bladder pain syndrome, which requires cystoscopy to determine the presence or absence Hunner lesions. Clinical studies are to be designed to analyze outcomes separately for Hunner-type interstitial cystitis and bladder pain syndrome.     

Voiding urges perceived by patients with interstitial cystitis/painful bladder syndrome

AIMS: Interstitial cystitis/painful bladder syndrome (IC/PBS) is a symptom-based diagnosis. We studied the IC/PBS symptom commonly referred to as "urgency" and its relationship to IC/PBS pain in a group of women with recent onset of the disease. METHODS: As part of a case control study to identify risk factors for IC, cases completed a questionnaire including two statements regarding the perceived cause of their urge to void. One was related to fear of incontinence and the other was linked with relief of pain. A Likert scale indicating level of agreement/disagreement comprised the response options. RESULTS: Most respondents (65%) agreed with the statement linking urge with pain relief. A minority (21%) concurred with the fear of incontinence statement. Disagreement for both was found in 19%. A substantial proportion (46%) agreed with pain relief but also disagreed that urge is related to fear of incontinence. Those who reported urge to relieve pain were significantly more likely to report worsened pain with bladder filling and/or improved pain with voiding. There were no such associations with urge to prevent incontinence. Overactive bladder or diabetes prior to IC onset did not confound these results. CONCLUSIONS: At least two distinct experiences of urge to urinate are evident in this population. For most, urge is linked with pain relief and is associated with bladder filling/emptying. About 1/5 reported urge to prevent incontinence. A similar portion did not agree with either urge, indicating that they may experience something altogether different, which requires further inquiry.     

Interstitial cystitis and painful bladder syndrome

PURPOSE: We quantified the burden of interstitial cystitis/painful bladder syndrome on the health care system in the United States. MATERIALS AND METHODS: The analytical methods used to generate these results were described previously. Interstitial cystitis was defined based on International Classification of Diseases, 9th revision code 595.1 (interstitial cystitis). For painful bladder syndrome we used the definition International Classification of Diseases, 9th revision code 788.41 (urinary frequency) with code 625.8 (other specified symptoms associated with female genital organs) or 625.9 (unspecified symptoms associated with female genital organs). RESULTS: Between 1992 and 2001 there was a 2-fold increase in the rate of hospital outpatient visits and a 3-fold increase in the rate of physician office visits related to interstitial cystitis. The annualized rate was 102 office visits per 100,000 population. Ambulatory surgery for interstitial cystitis decreased. A diagnosis of interstitial cystitis was associated with a 2-fold increase in direct medical costs. Between 1994 and 2000 annual national expenditures for interstitial cystitis were stable at $37 million but annual costs for painful bladder syndrome increased from $481 million to $750 million. CONCLUSIONS: Although interstitial cystitis accounts for a small percent of health care visits, its economic burden is substantial. Because of misdiagnosis, the true burden of interstitial cystitis/painful bladder syndrome on the health care system in the United States is probably underestimated in administrative data that rely only on physician coding to identify the disorder. The greatest part of the disease burden is likely not captured in this economic analysis.     

Prevalence of clinically confirmed interstitial cystitis in women: a population based study in Finland

PURPOSE: Interstitial cystitis (IC) is a clinical condition occurring predominantly in women that is characterized by irritative voiding symptoms, including urinary frequency, urgency and pain. To our knowledge its etiology is unknown and little is known about its occurrence. We evaluated the prevalence of IC in women in Finland. MATERIALS AND METHODS: A total of 2,000 participants were randomly selected from the Finnish population register. Urinary symptoms were evaluated using the validated O'Leary-Sant IC symptom and problem index questionnaire. Women with moderate or severe symptom scores (7 or higher) without any urinary tract infection during the last month were invited to undergo clinical examination. RESULTS: Of the 1,331 respondents 32 had moderate or severe symptoms involving a suspicion of IC, of whom 21 underwent clinical evaluation. Three women were found to have probable IC and 4 had possible IC. Thus, the prevalence of clinically confirmed probable IC in women was 230/100.000 (95% CI 100 to 360) and that of possible/probable IC was 530/100.000 (95% CI 140 to 910). Considering the lack of information on 8 patients with urinary symptoms the corrected estimates were 300/100,000 (95% CI 120 to 770) and 680/100,000 women (95% CI 360 to 1,300), respectively. CONCLUSIONS: Our results based on a large and representative population, and clinically confirmed diagnoses indicate that IC is substantially more common than previously thought.     

Dyspareunia and chronic pelvic pain in patients with interstitial cystitis/bladder pain syndrome

ObjectiveA previous study established that interstitial cystitis/bladder pain syndrome (IC/BPS) patients had significantly more dyspareunia and fear of pain than healthy controls. We evaluated the relationships between lower urinary tract symptoms and dyspareunia in IC/BPS patients.Materials and methodsA total of 156 IC/BPS female patients were included in this study. The diagnosis was made on the consensus of IC/PBS proposed by the Society for Urodynamics and Female Urology criteria in 2008. All women completed measures of pain severity (visual analog scale) and bladder symptom severity [IC Symptom Index, IC Problem Index, and the Pelvic Pain and Urinary/Frequency (PUF) scale]. Respondents were asked to recall if they experienced any sexual pain during or after sexual intercourse in the past 1 year. Cystoscopic hydrodistension during general anesthesia was performed for 5 minutes and maximal bladder capacity was also measured. Bivariate analyses were performed using chi-square and independent Student t tests.ResultsOf the women with a current sexual partner, 61% (96/156) reported dyspareunia during or after sexual intercourse. Of the 96 dyspareunia respondents, 46% (44/96) reported pain in the bladder only, 43% (41/96) in the vagina only, and 11% (11/96) in both the bladder and the vagina. Patients with dyspareunia complained of more severe urological pain (p = 0.02), a higher PUF scale score (p < 0.01), and larger anesthetic maximal bladder capacity (p = 0.04) than patients without dyspareunia. However, patients with dyspareunia at the bladder only had more severe urgency sensation (p < 0.01) but no differences in pain, PUF scale, severity of glomerulation, and maximal bladder capacity than those with dyspareunia at the vagina only.ConclusionIC/BPS women with dyspareunia have significantly more severe urological pain and a higher PUF scale score than women without dyspareunia. Physicians should consider sexual pain disorder in the management of patients with IC/BPS and use the PUF scale to evaluate not only IC-specific lower urinary tract symptoms, but also sexual pain disorder.     

Clinical guidelines for interstitial cystitis and hypersensitive bladder syndrome

A clinical guideline and algorism for interstitial cystitis and hypersensitive bladder syndrome has been developed by a group of East Asian urologists as a revised form of the Japanese guideline for interstitial cystitis. The guideline defines interstitial cystitis (IC) as a disease of the urinary bladder diagnosed by 3 requirements; 1) a characteristic complex of lower urinary tract symptoms, 2) bladder pathology such as Hunner's ulcer and bladder bleeding after overdistension, and 3) exclusions of confusable diseases. The characteristic symptom complex is termed as hypersensitive bladder syndrome (HBS), which is defined as bladder hypersensitivity, usually associated with urinary frequency, with or without bladder pain. For the definite diagnosis of IC, cytoscopy or hydrodistension is crutial; HBS is the diagnosis when IC is suspected but not confirmed by the 3 requirements. Numerous therapeutic options are available; however, most of them lack in high level of evidence, leaving a few as recommended therapies. Etiology of IC are multifactorial; the interaction among nervous, immune and endocrine factors forms a vicious cycle, provocating and maintaining inflammatory reactions in the bladder. The inclusion and efficacy criteria for clinical trials should be standardized to enhance the clinical research for this disabling disease, which has proved to be more prevalent than previously believed.     

Phenotyping of interstitial cystitis/bladder pain syndrome

Interstitial cystitis/bladder pain syndrome is a chronic, potentially debilitating condition characterized by pain perceived to be related to the bladder in conjunction with lower urinary tract symptoms, and includes a wide variety of clinical phenotypes with diverse etiologies. Currently the only clinically relevant proven phenotype of interstitial cystitis/bladder pain syndrome is the Hunner lesion. Whether the presence of Hunner lesions is a hallmark of a distinct disease cohort or a potentially transient feature of non‐Hunner lesion phenotype has been debated but remains controversial. There are few documented examples of a patient converting between the two forms. Growing clinical and basic evidence supports eliminating the Hunner lesion phenotype from the bladder pain syndrome umbrella and considering it a distinct disease. The Hunner lesion phenotype is characterized by distinct bladder histology, including subepithelial chronic inflammatory changes and epithelial denudation, and specific clinical characteristics (older onset age, severe bladder‐centric symptoms, reduced bladder capacity, and favorable response to the lesion‐targeted therapies). To define the Hunner lesion phenotype, it is necessary to develop an atlas of standardized images of cystoscopic (and, if possible, pathological) appearances of Hunner lesions. A true potential and clinically relevant phenotype of interstitial cystitis/bladder pain syndrome may be patients with non‐bladder‐centric symptoms, characterized by the affect dysregulation and somatic symptoms, and a greater bladder capacity in absence of Hunner lesions. In the present workshop, we concluded that the Hunner lesion is a valid phenotype and can reasonably be considered a disease in its own right. Assessment of bladder capacity and the extent of symptoms (bladder beyond or bladder centric) may help phenotyping of interstitial cystitis/bladder pain syndrome. Proper phenotyping is essential for the diagnosis and treatment of interstitial cystitis/bladder pain syndrome, and for facilitating research.     

间质性膀胱炎/膀胱疼痛综合征尿动力学检查价值分析

目的:探讨间质性膀胱炎/膀胱疼痛综合征(interstitial cystitis/bladder pain syndrome,IC/BPS)尿动力学特征及鉴别诊断价值.方法:回顾性分析2019年06月-2019年12月就诊于我院40例女性IC/BPS患者与40例女性单纯压力性尿失禁(stress urinary in...     

Relationship among symptoms,mood, and personality traits in patients with interstitial cystitis/bladder pain syndrome

ObjectiveWe have proposed an analysis of personality traits to classify patients with interstitial cystitis/bladder pain syndrome (IC/BPS) to determine the association between symptoms, mood, and personality traits in IC/BPS patients.Materials and methodsA total of 57 patients (7 males and 50 females) diagnosed according to the National Institute of Diabetes and Digestive and Kidney Diseases criteria were recruited from December 2005 to June 2006. All of these patients were newly diagnosed cases of IC/BPS, and the evaluation was made during the admission after hydrodistension. This study used the O'Leary–Sant Symptom Index and Problem Index (interstitial cystitis system index and interstitial cystitis problem index) to record the clinical symptoms of all IC/BPS patients. Basic Personality Inventory and Back Anxiety Inventory were used to analyze personality traits and mood status.ResultsIC/BPS patients have personality traits of depression and hypochondriasis, and show moderate anxiety mood. The duration of the symptoms is longer in depressive IC/BPS patients. Significant positive correlations were found among pain and anxiety mood, symptoms and interpersonal problems, and problem index and depression, respectively. Patients with severe anxiety mood status have abnormal personality traits such as depression, anxiety, self-depreciation, and others.ConclusionsIC/BPS patients frequently exhibit several mental health disorders and negative personality traits. Therefore, in addition to targeting the bladder pathological condition, psychological intervention focusing on personality traits and anxiety mood status should be provided to improve quality of life of IC/BPS patients.     

New cystoscopic diagnosis for interstitial cystitis/painful bladder syndrome using narrow‐band imaging system

Objectives: Diagnosing the bladder lesions associated with interstitial cystitis/painful bladder syndrome (IC/PBS) is sometimes difficult for general urologists. We therefore aimed to develop an IC/PBS diagnosis method using a cystoscope with a narrow‐band imaging (NBI) system that can detect mucosal angiogenic lesions. Methods: Fifty‐two subjects suspected of having IC between October 2006 and June 2007 were included in this study. There were 49 women and three men, ranging in age from 19 through 85 with an average age of 59. First, conventional cystoscopy under spinal anesthesia was performed to examine the ulcerative lesions by a urological specialist. Then, other health care professionals made a separate observation of capillary‐rich areas of the superficial layer of the bladder mucosa by cystoscopy with the NBI system. Results: Among the 52 patients, 37 cases were found to have ulcers by conventional cystoscopy, which were also recognized as capillary‐rich brownish areas using the NBI system (100% accuracy); 13 cases were found to have NBI‐positive areas without ulcer, which were coincided with those with petechial hemorrhages and glomerulations following subsequent hydrodistention; and two cases of normal mucosa were detected. Furthermore, six cases of bladder cancer (carcinoma in situ) were detected by biopsies that were obtained from the ulcerative lesions positively identified by NBI cystoscopy. Conclusions: Examining the urinary bladder mucosa with a flexible cystoscope with the NBI system makes it possible to easily detect ulcers of bladder mucosa and areas with angiogenesis. Therefore, it is considered that the use of a flexible cystoscope with the NBI system is highly practical for the IC/PBS diagnosis.     

Sensory mapping of pelvic dermatomes in women with interstitial cystitis/bladder pain syndrome

Aim

To describe a sensory map of pelvic dermatomes in women with Interstitial Cystitis/Bladder Pain Syndrome (IC/BPS). We hypothesized that if IC/BPS involves changes in central processing, then women with IC/BPS will exhibit sensory abnormalities in neurologic pelvic dermatomes.

Methods

Women with IC/BPS and healthy controls underwent neurologic examination that included evaluation of sharp pain sensitivity and vibration in dermatomes T12, L1, L2, S1‐5. Peripheral nervous system sensitivity to pressure, vibration, and pinprick were scored using numeric rating scales (NRS). Bilateral comparisons were made with Wilcoxon signed‐rank test and comparisons between groups were made by the Mann‐Whitney U‐test.

Results

Total of 74 women with IC/BPS and 36 healthy counterparts were included. IC/BPS and control groups had similar age (43.0 ± 14.1 and 38.6 ± 15.3 years, P = 0.14) and BMI (28.9 ± 8.0 kg/m² and 26.9 ± 8.4 kg/m², P = 0.24), respectively. Women with IC/BPS reported hyperalgesia (elevated bilateral NRS pain intensity) in all pelvic dermatomes compared to healthy controls. S4‐S5 region had the highest pain intensity in all participants. All IC/BPS participants exhibited vibration sensation hypoesthesia, at least unilaterally, in all of the pelvic dermatomes except L1 compared to healthy controls.

Conclusion

This detailed map of neurologic pelvic dermatomes in women with IC/BPS found hyperalgesia in all pelvic dermatomes, and some evidence of vibration sensation hypoesthesia, compared to healthy controls. These findings support the hypothesis that IC/BPS may involve changes in central signal processing biased towards nociception.