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Objective: To quantify the variation, triggers and impact on quality of life of symptom flares in women with chronic pelvic pain (CPP). Design: Cross‐sectional questionnaire within the Translational Research in Pelvic Pain clinical cohort study. Setting: Women with CPP, with subgroups of women with endometriosis (EAP), interstitial cystitis/bladder pain syndrome (BPS), comorbid endometriosis and interstitial cystitis/bladder pain syndrome (EABP), and those with pelvic pain without endometriosis or interstitial cystitis/bladder pain syndrome (PP). Population or Sample: A total of 100 participants. Methods: Descriptive and comparative analysis from flares questionnaire. Main Outcome Measures: The prevalence, characteristics and triggers of short, medium and long symptom flares in CPP. Results: We received 100 responses of 104 questionnaires sent. Seventy‐six per cent of women with CPP have ever experienced symptom flares of at least one length (short, medium and/or long). Flares are associated with painful and non‐painful symptoms. There is large variation for the frequency, duration, symptoms and triggers for flares. Over 60% of participants reported flares as stopping them from doing things they would usually do, >80% reported thinking about symptoms of flares and >80% reported flares being bothersome. Conclusions: Flares are prevalent and clinically very important in CPP. More research is needed to elucidate the mechanisms and characteristics underlying flares. Clinical practice should include an enquiry into flares with the aim of finding strategies to lessen their burden. [ABSTRACT FROM AUTHOR]

Introduction: Chronic pelvic pain (CPP) is a common condition affecting up to 26.6% of women, with many suffering for several years before diagnosis and/or treatment. Its clinical presentation is varied and there are frequently comorbid conditions both within and outside the pelvis. We aim to explore whether specific subgroups of women with CPP report different clinical symptoms and differing impact of pain on their quality of life (QoL). Methods: The study is part of the Translational Research in Pelvic Pain (TRiPP) project which is a cross-sectional observational cohort study. The study includes 769 female participants of reproductive age who completed an extensive set of questions derived from standardised WERF EPHect questionnaires. Within this population we defined a control group (reporting no pelvic pain, no bladder pain syndrome, and no endometriosis diagnosis, N = 230) and four pain groups: endometriosis-associated pain (EAP, N = 237), interstitial cystitis/bladder pain syndrome (BPS, N = 72), comorbid endometriosis-associated pain and BPS (EABP, N = 120), and pelvic pain only (PP, N = 127). Results: Clinical profiles of women with CPP (13-50 years old) show variability of clinical symptoms. The EAP and EABP groups scored higher than the PP group (p < 0.001) on the pain intensity scales for non-cyclical pelvic pain and higher than both the BPS and PP groups (p < 0.001) on the dysmenorrhoea scale. The EABP group also had significantly higher scores for dyspareunia (p < 0.001), even though more than 50% of sexually active participants in each pain group reported interrupting and/or avoiding sexual intercourse due to pain in the last 12 months. Scores for the QoL questionnaire (SF-36) reveal that CPP patients had significantly lower QoL across all SF-36 subscales (p < 0.001). Significant effects were also observed between the pain groups for pain interference with their work (p < 0.001) and daily lives (p < 0.001), with the EABP suffering more compared to the EAP and PP groups (p < 0.001). Discussion: Our results demonstrate the negative impact that chronic pain has on CPP patients' QoL and reveal an increased negative impact of pain on the comorbid EABP group. Furthermore, it demonstrates the importance of dyspareunia in women with CPP. Overall, our results demonstrate the need for further exploration of interventions targeting QoL more broadly and suggest that novel approaches to classifying women with CPP are needed. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Objectives: There is confusion about the terms of bladder pain syndrome (BPS) and Interstitial Cystitis (IC). The European Society for the Study of IC (ESSIC) classified these according to objective findings [9]. One phenotype, Hunner lesion disease (HLD or ESSIC 3C) differs markedly from other presentations. Therefore, the question was raised as to whether this is a separate condition or BPS subtype. Methods: An evaluation was made to explore if HLD differs from other BPS presentations regarding symptomatology, physical examination findings, laboratory tests, endoscopy, histopathology, natural history, epidemiology, prognosis and treatment outcomes. Results: Cystoscopy is the method of choice to identify Hunner lesions, histopathology the method to confirm it. You cannot distinguish between main forms of BPS by means of symptoms, physical examination or laboratory tests. Epidemiologic data are incomplete. HLD seems relatively uncommon, although more frequent in older patients than non-HLD. No indication has been presented of BPS and HLD as a continuum of conditions, one developing into the other. Conclusions: A paradigm shift in the understanding of BPS/IC is urgent. A highly topical issue is to separate HLD and BPS: treatment results and prognoses differ substantially. Since historically, IC was tantamount to Hunner lesions and interstitial inflammation in the bladder wall, still, a valid definition, the term IC should preferably be reserved for HLD patients. BPS is a symptom syndrome without specific objective findings and should be used for other patients fulfilling the ESSIC definitions. [ABSTRACT FROM AUTHOR]

The international interstitial cystitis, bladder pain syndrome and hypersensitive bladder world is facing major problems. While healthcare is ultimately about making sick people feel better, this is still not happening for our patients who are not receiving the individually tailored treatment that they need. So, what has gone wrong, and why is there so much confusion everywhere? Since the first NIDDK research criteria were published over 30 years ago, there has been no major breakthrough either in treating the patients or even in truly understanding what bladder condition(s) we are dealing with. For the sake of the patients, it is imperative to take action now and make a fresh, determined start with meaningful, international, multi‐stakeholder collaboration to determine how to proceed further to take the necessary decisions, solve the problems and achieve real global consensus and real progress to help the real patients with their real symptoms. [ABSTRACT FROM AUTHOR]

Interstitial cystitis/bladder pain syndrome (IC/BPS) patients around the world are all too familiar with the immense stress and anxiety caused by an urgent and frequent need to void, leading to many patients with IC/BPS staying at home in social isolation since they are afraid that they will not find a public toilet when they urgently need it. It is therefore of great concern that for almost two decades the "sensory" type of urgency due to intolerable pain or unpleasant sensation as typically experienced by this group of patients has no longer been officially recognized, researched or treated as a symptom of IC/BPS. This official misrepresentation of IC/BPS symptoms needs to be addressed and rectified for the sake of patients and to ensure medical accuracy in research. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

'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. [ABSTRACT FROM AUTHOR]

Focuses on issues concerning interstitial cystitis. Need to define the disease and redefine the criteria.