Current Understanding and Future Perspectives of Interstitial Cystitis/Bladder Pain Syndrome.

Interstitial cystitis/bladder pain syndrome (IC/BPS) is a chronic disease characterized by suprapubic pain and lower urinary tract symptoms. Perhaps because of the heterogeneous nature of this disease and its multifactorial etiology, clinical trials in allinclusive populations of IC/BPS patients without phenotyping in the last decade have mainly failed to discover new therapeutic modalities of IC/BPS. Thus, phenotyping IC/BPS, aimed at identifying bladder-centric and/or bladder-beyond pathologies, including cystoscopic observation of Hunner or non-Hunner lesions of the bladder mucosa, is particularly important for the future of IC/BPS management. Based on recent discussions at international conferences, including the International Consultation on IC, Japan, it has been proposed that Hunner-lesion IC should be separated from other non-Hunner IC/BPS because of its distinct inflammatory profiles and epithelial denudation compared with non-Hunner IC/BPS. However, there are still no standard criteria for the diagnosis of Hunner lesions other than typical lesions, while conventional cystoscopic observations may miss atypical or small Hunner lesions. Furthermore, diagnosis of the bladder-centric phenotype of IC/BPS requires confirmation that identified mucosal lesions are truly a cause of bladder pain in IC/BPS patients. This review article discusses the current status of IC/BPS pathophysiology and diagnosis, as well as future directions of the proper diagnosis of bladder-centric IC/BPS, in which pathophysiological mechanisms other than those in inflammatory pathways, such as angiogenic and immunogenic abnormalities, could also be involved in both Hunner-lesion IC and non-Hunner IC/BPS. It is hoped that this new paradigm in the pathophysiological evaluation and diagnosis of IC/BPS could lead to pathology-based phenotyping and new treatments for this heterogeneous disease.

Bladder pain: the patient perspective.

Patients with chronic pain, discomfort and other urinary symptoms related to bladder pain syndrome or urinary tract infections may experience severely diminished quality of life and psychological and social problems, including depression, anxiety, and a sense of helplessness and hopelessness. These patients require empathy, understanding and practical support to allow them to cope with their chronic bladder disorder.

A standard for terminology in chronic pelvic pain syndromes: A report from the chronic pelvic pain working group of the international continence society.

AIMS: Terms used in the field of chronic pelvic pain (CPP) are poorly defined and often confusing. An International Continence Society (ICS) Standard for Terminology in chronic pelvic pain syndromes (CPPS) has been developed with the aim of improving diagnosis and treatment of patients affected by chronic pelvic pain syndromes. The standard aims to facilitate research, enhance therapy development and support healthcare delivery, for healthcare providers, and patients. This document looks at the whole person and all the domains (organ systems) in a systematic way. METHODS: A dedicated working group (WG) was instituted by the ICS Standardisation Steering Committee according to published procedures. The WG extracted information from existing relevant guidelines, consensus documents, and scientific publications. Medline and other databases were searched in relation to each chronic pelvic pain domain from 1980 to 2014. Existing ICS Standards for terminology were utilized where appropriate to ensure transparency, accessibility, flexibility, and evolution. Consensus was based on majority agreement. RESULTS: The multidisciplinary CPPS Standard reports updated consensus terminology in nine domains; lower urinary tract, female genital, male genital, gastrointestinal, musculoskeletal, neurological aspects, psychological aspects, sexual aspects, and comorbidities. Each is described in terms of symptoms, signs and further evaluation. CONCLUSION: The document presents preferred terms and definitions for symptoms, signs, and evaluation (diagnostic work-up) of female and male patients with chronic pelvic pain syndromes, serving as a platform for ongoing development in this field. Neurourol. Urodynam. 36:984-1008, 2017. © 2016 Wiley Periodicals, Inc.

The Role of Glomerulations in Bladder Pain Syndrome: A Review.

PURPOSE: As a diagnostic marker for bladder pain syndrome/interstitial cystitis, glomerulations were first popularized by Messing and Stamey in 1978. Later this was included in the National Institute of Diabetes and Digestive and Kidney Diseases criteria for research and consequently used by many urologists as a default diagnostic criterion. Today the connection between glomerulations and bladder pain syndrome/interstitial cystitis is much debated as research has found glomerulations in asymptomatic populations. In this review we systematically examine the available research to see if there are valid data to support the use of glomerulations as a marker for bladder pain syndrome/interstitial cystitis. MATERIALS AND METHODS: A systematic literature search of the PubMed® database in March 2014 using the search term "Cystitis, Interstitial/diagnosis" [MAJR] OR (glomerulations OR glomerulation OR bladder petechiae) was performed, yielding 463 hits. An Embase® search using the search term "glomerulations" yielded 110 references, of which 68 were duplicates. Relevant articles were reviewed and included in the study. Bibliographies of reviews, articles and status reports were examined to find studies not included in the search. A total of 29 publications were included in this review. RESULTS: There is no consistent relationship between glomerulations and the diagnosis of bladder pain syndrome/interstitial cystitis. In the reviewed studies we found evidence of the grade of glomerulations changing with time. Furthermore, many studies showed no link between the severity of symptoms and the number of glomerulations. There were studies that found glomerulations in healthy asymptomatic populations as well as in symptomatic populations with another primary diagnosis. One study showed no glomerulations in an asymptomatic population. CONCLUSIONS: We found no convincing evidence in the reviewed literature that glomerulations should be included in the diagnosis or phenotyping of bladder pain syndrome/interstitial cystitis. Glomerulations do not correlate with symptoms and are found in patients without bladder pain syndrome/interstitial cystitis.

Patient-centred standardization in interstitial cystitis/bladder pain syndrome-a PLEA.

Standardization has an impact on all links in the healthcare chain and directly affects patients with regard to diagnosis, treatment, eligibility for reimbursement, social benefits and care. Furthermore, patients are also affected if research goes down inappropriate pathways due to inaccurate terminology and definitions. Complex healthcare coding and electronic medical record systems and global reliance on the internet and search machines mean that new terminology or changes now need in some way to be designed to last or to be updated in a way that will cause least disruption, while still allowing for evolution, since changes have far more ramifications today than they ever did in the past. Official recognition of a condition is vital, so coding must be correct and uniform across all authorities. Potential problems must be anticipated at an early stage in the process. In order to achieve global consensus, stakeholders from all parts of the world need to communicate and collaborate with all viewpoints taken into consideration. Patients and their advocacy groups should be involved in standardization processes to ensure that all aspects of a condition are covered, that no patients or symptoms are excluded and that there is no adverse impact on the patient in practical terms following implementation. The trend today is for patients to be more involved in healthcare and decision-making. We must ensure that standardisation and guidelines do not get left behind in this process of development either now or in the future. However, it is necessary to find some way of training patient representatives to enable them to participate fully in standardization and guidelines and also to encourage them to do so.

Interstitial cystitis and the painful bladder: a brief history of nomenclature, definitions and criteria.

"Practically every author writing on this subject has suggested a new name which only adds to the confusion and multiplication" (Kretschmer H, 1922). Despite multiple names and many definitions and classifications over the past two centuries, the medical world is no closer to discovering the cause or causes of this enigmatic bladder disorder, currently known as interstitial cystitis, bladder pain syndrome or painful bladder syndrome and hypersensitive bladder. International consensus on nomenclature, definitions and diagnosis is now essential to ensure that studies are carried out on the same basis, thereby generating meaningful data that can be relied on for further use. In our electronic age, multiple names and definitions cause confusion for researchers, clinicians and patients, even leading to the patient's diagnosis being unrecognized by authorities, resulting in refusal to reimburse treatment or provide social benefits. As the key to the puzzle lies in the patients, with all their symptoms and comorbidities, and as patients are directly affected by changes in nomenclature and definitions, patient organization representatives should be given every opportunity to participate in discussions on guidelines, taxonomy, definitions and terminology.