Interstitial Cystitis Association Research Articles

MP21-02 EXPERIENCES OF MINORITIES WITH INTERSTITIAL CYSTITIS/BLADDER PAIN SYNDROME

You have accessJournal of UrologyCME1 Apr 2023MP21-02 EXPERIENCES OF MINORITIES WITH INTERSTITIAL CYSTITIS/BLADDER PAIN SYNDROME Catherine Brownstein, Leigh Garrett, Erika Kline, Judy Chandler, Nicki Mehall, Lee Lowery, Sonja Ziniel, and Pressley Smith Catherine BrownsteinCatherine Brownstein More articles by this author , Leigh GarrettLeigh Garrett More articles by this author , Erika KlineErika Kline More articles by this author , Judy ChandlerJudy Chandler More articles by this author , Nicki MehallNicki Mehall More articles by this author , Lee LoweryLee Lowery More articles by this author , Sonja ZinielSonja Ziniel More articles by this author , and Pressley SmithPressley Smith More articles by this author View All Author Informationhttps://doi.org/10.1097/JU.0000000000003246.02AboutPDF ToolsAdd to favoritesDownload CitationsTrack CitationsPermissionsReprints ShareFacebookLinked InTwitterEmail Abstract INTRODUCTION AND OBJECTIVE: Interstitial cystitis/bladder pain syndrome (IC/BPS) is a multifactorial, chronic syndrome involving urinary frequency, urinary urgency, and bladder discomfort that affects an estimated 10 million patients in the United States. Diagnosing IC/BPS focuses on the exclusion of other diseases and patients report that receiving a diagnosis involves multiple healthcare providers and usually takes several years. Therefore, this study focused on the comparing the experiences and diagnostic journeys between different races and ethnicities. METHODS: In collaboration with the Interstitial Cystitis Association and Inspire.com, we administered a web survey around IC/BPS symptomatology and pain experiences between June and August 2022. Ethnicity and racial identities were categorized into 5 groups: Hispanic (1), and the non-Hispanic groups Black/African American (B/AA) (2), Native American and Hawaiian (NAH) (3), Asian (4), and White/Caucasian (W/C) (5). We used Chi2-test to compare categorical variables and median tests to compare continuous variables across the 5 race/ethnicity groups. RESULTS: Overall, 1,631 respondents answered the survey (Table 1). B/AA and W/C perceive the strong need to urinate with little warning as well as having bladder pain to occur at a higher frequency compared to Hispanics (p=0.046; p<0.001). Urinating <2 hours after having urinated is reported to occur at a higher frequency in W/C and NAH (p<0.001). Hispanics are less likely to report bladder pain to be a big problem (p=0.001). Getting up at night to urinate is a big problem for B/AA (p=0.037). B/AA had the shortest median time (0.5 years) between start of symptoms and diagnosis while W/C had the longest (2 years) (p<0.001). CONCLUSIONS: Our survey of individuals with IC/BPS found differences in experiences between races and Hispanic ethnicity, including the impact of pain and time to diagnosis. However, only 16% of individuals responding were Minorities (vs. 58% of the US population) and 5% of individuals responding were AA (vs. 13% of the US population). This indicates that additional investigation is warranted to understand the experiences and needs of Minority individuals with IC/BPS. Source of Funding: U54DK104309-08 © 2023 by American Urological Association Education and Research, Inc.FiguresReferencesRelatedDetails Volume 209Issue Supplement 4April 2023Page: e284 Advertisement Copyright & Permissions© 2023 by American Urological Association Education and Research, Inc.MetricsAuthor Information Catherine Brownstein More articles by this author Leigh Garrett More articles by this author Erika Kline More articles by this author Judy Chandler More articles by this author Nicki Mehall More articles by this author Lee Lowery More articles by this author Sonja Ziniel More articles by this author Pressley Smith More articles by this author Expand All Advertisement PDF downloadLoading ...

A Cost, Time, and Demographic Analysis of Participant Recruitment and Urine Sample Collection Through Social Media Optimization.

Clinical research can be expensive and time consuming due to high associated costs and/or duration of the study. We hypothesized that urine sample collection using online recruitment and engagement of research participants via social medial has the potential to reach a large population in a small timeframe, at a reasonable cost. We performed a retrospective cost analysis of a cohort study comparing cost per sample and time per sample for both online and clinically recruited participants for urine sample collection. During this time, cost data were collected based on study associated costs from invoices and budget spreadsheets. The data were subsequently analyzed using descriptive statistics. Each sample collection kit contained 3 urine cups, 1 for the disease sample and 2 for control samples. Out of the 3,576 (1,192 disease + 2,384 control) total sample cups mailed, 1,254 (695 control) samples were returned. Comparatively, the 2 clinical sites collected 305 samples. Although the initial startup cost of online recruitment was higher, cost per sample for online recruited was found to be $81.45 compared to $398.14 for clinic sample. We conducted a nationwide, contactless, urine sample collection through online recruitment in the midst of the COVID-19 pandemic. Results were compared with the samples collected in the clinical setting. Online recruitment can be utilized to collect urine samples rapidly, efficiently, and at a cost per sample that was 20% of an in-person clinic, and without risk of COVID-19 exposure.

PD01-08 USE OF SUPPLEMENTS IN THE INTERSTITIAL CYSTITIS/BLADDER PAIN SYNDROME COMMUNITY: PATIENT-REPORTED UTILIZATION PATTERNS AND PERCEPTIONS

You have accessJournal of UrologyInfections/Inflammation/Cystic Disease of the Genitourinary Tract: Interstitial Cystitis (PD01)1 Sep 2021PD01-08 USE OF SUPPLEMENTS IN THE INTERSTITIAL CYSTITIS/BLADDER PAIN SYNDROME COMMUNITY: PATIENT-REPORTED UTILIZATION PATTERNS AND PERCEPTIONS Paige Kuhlmann, Andrew Chen, Kai Dallas, Peris Castaneda, Victoria Scott, Jennifer Anger, and Karyn Eilber Paige KuhlmannPaige Kuhlmann More articles by this author , Andrew ChenAndrew Chen More articles by this author , Kai DallasKai Dallas More articles by this author , Peris CastanedaPeris Castaneda More articles by this author , Victoria ScottVictoria Scott More articles by this author , Jennifer AngerJennifer Anger More articles by this author , and Karyn EilberKaryn Eilber More articles by this author View All Author Informationhttps://doi.org/10.1097/JU.0000000000001965.08AboutPDF ToolsAdd to favoritesDownload CitationsTrack CitationsPermissionsReprints ShareFacebookLinked InTwitterEmail Abstract INTRODUCTION AND OBJECTIVE: Interstitial cystitis/bladder pain syndrome (IC/BPS) management is multimodal, and often includes alternative therapies. Natural supplements are one such therapy that has yet to be studied adequately. We sought to better understand the IC/BPS community’s perception of supplement usage for symptom control. METHODS: A 40 question online survey was designed to elicit responses from people with the diagnosis IC/BPS, capturing demographics and perspectives on disease management strategies, including supplements. Multiple choice and free text answers were included. The survey was posted to the Interstitial Cystitis Association’s Facebook page to access applicable respondents. Survey responses were anonymous. RESULTS: 461 respondents completed the survey, 432 female and 29 male. >85% of respondents indicated they were “somewhat,” “very”, or “highly” likely to take a supplement for IC/BPS symptom relief or prevention, with 75% saying they would have no apprehension at all. Of the remaining 25%, over half cited side effects as their reason for apprehension. Other reasons included questionable efficacy, lack of regulation/evidence, price, medication interactions, and concern for triggering symptoms/allergies. Supplement recommendations from doctors were considered more trustworthy than peer or online reviews. 183 respondents (40%) were already taking supplements, 144 (31%) for chronic symptom management, and 158 (34%) for flare symptom control. The most commonly used supplements were aloe vera, Prelief, and d-mannose (Figure 1a&b). Supplement use did not vary with age. Supplements were the fourth most common management strategy after diet, medications, and reduction of sexual activity. Almost 60% of respondents taking supplements reported some degree of efficacy. 120 patients (26%) had taken supplement(s) in the past, but then stopped, most often due to lack of efficacy (72%) or side effects (19%). CONCLUSIONS: 40% of respondents with IC/BPS take supplements for symptom management. A much larger proportion of these patients are open to supplements, but perceive lack of efficacy and side effects as obstacles. Research on efficacy of supplements for IC/BPS is needed to help counsel patients about management options and provide them with more effective therapy. Source of Funding: LifeSeasons © 2021 by American Urological Association Education and Research, Inc.FiguresReferencesRelatedDetails Volume 206Issue Supplement 3September 2021Page: e33-e34 Advertisement Copyright & Permissions© 2021 by American Urological Association Education and Research, Inc.MetricsAuthor Information Paige Kuhlmann More articles by this author Andrew Chen More articles by this author Kai Dallas More articles by this author Peris Castaneda More articles by this author Victoria Scott More articles by this author Jennifer Anger More articles by this author Karyn Eilber More articles by this author Expand All Advertisement Loading ...

Forming a Non-Profit Organization for Patients with a Urological Disease in 1984: Does it relate to Clinical Microbiology Today?

Interstitial Cystitis (IC), also known as Painful Bladder Syndrome (PBS), was initially described in the mid 1800’s. It was not until 1984 that a patient non-profit organization, the Interstitial Cystitis Association (ICA), was formed in order to work with IC patients and the National Institutes of Health (NIH) to define and increase research on this enigmatic and debilitating condition. The media played an important role in bringing together patients and helping them understand that they were not alone in their suffering. Epidemiological studies legitimized the disease and research at the NIH and other academic institutions progressed enormously. However, despite over 30 years of hard work, urologists have been unable to determine a cause for IC or any truly effective treatments to help patients suffering from this condition. Collaboration with other specialties, in particular clinical microbiology, may prove fruitful in advancing research into the cause and potential treatments for IC.

An epigenetic switch on ARID1A chromatin remodeler by alpha‐oxoglutarate activates the antiproliferative axis in interstitial cystitis

Interstitial cystitis (IC) is a chronic urinary tract disease that is characterized by unpleasant sensations, such as chronic pelvic pain and various other symptoms, in the absence of infection or other identifiable causes. We previously performed comprehensive metabolomics profiling of urine in IC patients using nuclear magnetic resonance and gas-chromatography/mass spectrometry and found that urinary α-oxoglutarate was significantly elevated. α-oxoglutarate (α-OG), the tricarboxylic acid (TCA) cycle intermediate, reportedly functions to suppress the proliferation of normal human bladder epithelial cells. Here, we identified AT-rich interactive domain 1A (ARID1A), a key chromatin remodeler, as being hypomethylated and upregulated by 2-oxoglutarate treatment. This was done through EPIC DNA methylation profiling and subsequent biochemical approaches, including quantitative RT-PCR and western blot analyses. Furthermore, we found that α-oxoglutarate almost completely suppresses ten-eleven translation (TET) activity, but does not affect DNA methyltransferase (DNMT) activity. DNMT inhibition in our IC rat models did not limit IC-associated symptoms or cytokine production. Altogether, our studies reveal the potential role of α-OG in epigenetic remodeling through its effects on AR1DA and TET in the bladder, which could provide a promising therapeutic strategy for IC treatment. Support or Funding Information The authors acknowledge support from National Institutes of Health grants (1U01DK103260, 1R01DK100974, U24 DK097154, NIH NCATS UCLA CTSI UL1TR000124), Department of Defense grants (W81XWH-15-1-0415), Centers for Disease Controls and Prevention (1U01DP006079), IMAGINE NO IC Research Grant, the Steven Spielberg Discovery Fund in Prostate Cancer Research Career Development Award, the U.S.-Egypt Science and Technology Development Fund by the National Academies of Sciences, Engineering, and Medicine (to J.K.). J.K. is former recipient of Interstitial Cystitis Association Pilot Grant, a Fishbein Family IC Research Grant, New York Academy of Medicine, and Boston Children's Hospital Faculty Development. The funders had no role in the design, data collection and analysis, decision to publish or preparation of the manuscript. This abstract is from the Experimental Biology 2018 Meeting. There is no full text article associated with this abstract published in The FASEB Journal.

Crowdsourcing Disease Biomarker Discovery Research: The IP4IC Study

Biomarker discovery is limited by readily assessable, cost efficient human samples available in large numbers that represent the entire heterogeneity of the disease. We developed a novel, active participation crowdsourcing method to determine BP-RS (Bladder Permeability Defect Risk Score). It is based on noninvasive urinary cytokines to discriminate patients with interstitial cystitis/bladder pain syndrome who had Hunner lesions from controls and patients with interstitial cystitis/bladder pain syndrome but without Hunner lesions. We performed a national crowdsourcing study in cooperation with the Interstitial Cystitis Association. Patients answered demographic, symptom severity and urinary frequency questionnaires on a HIPAA (Health Insurance Portability and Accountability Act) compliant website. Urine samples were collected at home, stabilized with a preservative and sent to Beaumont Hospital for analysis. The expression of 3 urinary cytokines was used in a machine learning algorithm to develop BP-RS. The IP4IC study collected a total of 448 urine samples, representing 153 patients (147 females and 6 males) with interstitial cystitis/bladder pain syndrome, of whom 54 (50 females and 4 males) had Hunner lesions. A total of 159 female and 136 male controls also participated, who were age matched. A defined BP-RS was calculated to predict interstitial cystitis/bladder pain syndrome with Hunner lesions or a bladder permeability defect etiology with 89% validity. In this novel participation crowdsourcing study we obtained a large number of urine samples from 46 states, which were collected at home, shipped and stored at room temperature. Using a machine learning algorithm we developed BP-RS to quantify the risk of interstitial cystitis/bladder pain syndrome with Hunner lesions, which is indicative of a bladder permeability defect etiology. To our knowledge BP-RS is the first validated urine biomarker assay for interstitial cystitis/bladder pain syndrome and one of the first biomarker assays to be developed using crowdsourcing.

MP29-07 DEVELOPMENT OF THE ULCERATIVE INTERSTITIAL CYSTITIS RISK SCORE (ICUS): A URINE-BASED MULTIPLE PROTEIN ASSAY TO PREDICT ULCERATIVE INTERSTITIAL CYSTITIS

You have accessJournal of UrologyInfections/Inflammation/Cystic Disease of the Genitourinary Tract: Interstitial Cystitis II1 Apr 2017MP29-07 DEVELOPMENT OF THE ULCERATIVE INTERSTITIAL CYSTITIS RISK SCORE (ICUS): A URINE-BASED MULTIPLE PROTEIN ASSAY TO PREDICT ULCERATIVE INTERSTITIAL CYSTITIS Laura Lamb, Joseph Janicki, Sarah Bartolone, Interstitial Cystitis Association, Bernadette Zwaans, Kenneth Peters, and Michael Chancellor Laura LambLaura Lamb More articles by this author , Joseph JanickiJoseph Janicki More articles by this author , Sarah BartoloneSarah Bartolone More articles by this author , Interstitial Cystitis AssociationInterstitial Cystitis Association More articles by this author , Bernadette ZwaansBernadette Zwaans More articles by this author , Kenneth PetersKenneth Peters More articles by this author , and Michael ChancellorMichael Chancellor More articles by this author View All Author Informationhttps://doi.org/10.1016/j.juro.2017.02.919AboutPDF ToolsAdd to favoritesDownload CitationsTrack CitationsPermissionsReprints ShareFacebookTwitterLinked InEmail INTRODUCTION AND OBJECTIVES Interstitial cystitis/bladder pain syndrome (IC/BPS) is a multifactorial syndrome of severe pelvic and genitalia pain and compromised urinary function. A fraction of IC patients who are the most severe present with Hunner's ulcers or patches on their bladder walls, termed ulcerative IC (UIC). UIC is diagnosed by cystoscopy, however this is a painful and expensive procedure. The objective of this study was to determine if a calculated Interstitial Cystitis Ulcerative Risk Score (ICUS) based on non-invasive urinary cytokines could discriminate UIC patients from controls and non-ulcerative IC patients. METHODS A national crowdsourcing effort targeting IC/BPS patients resulted in 442 urine samples consisting of 153 IC patients (146 female, 7 male), 155 female controls, and 134 male controls were collected. Controls were age-matched. This consisted of 52 UIC patients (48 females, 4 male). Urinary cytokine levels were determined using Luminex assay. A predictive classification model was generated from this data using the scikit-learn machine learning library and the Python programming language. It provides a probability of ulcerative IC when the algorithm is supplied with the levels of three different proteins found in the urine. RESULTS A defined ICUS Score of 0 to 1 was calculated to predict UIC, or a bladder permeability defect etiology (Figure 1). If the ICUS is ≥ 0.5, then there is an 87% chance that the patient has ulcerative IC. If the ICUS is <0.5, there is an 87% chance that the patient does not have ulcerative IC. The three protein levels combined provide a much better prediction model versus any of the individual protein levels alone. CONCLUSIONS The ICUS Score quantifies UIC risk, indicative of a bladder permeability defect etiology, in a subset of IC patients. This provides a new clinical tool to improve diagnosing patients with suspected IC symptoms. © 2017FiguresReferencesRelatedDetails Volume 197Issue 4SApril 2017Page: e382 Advertisement Copyright & Permissions© 2017MetricsAuthor Information Laura Lamb More articles by this author Joseph Janicki More articles by this author Sarah Bartolone More articles by this author Interstitial Cystitis Association More articles by this author Bernadette Zwaans More articles by this author Kenneth Peters More articles by this author Michael Chancellor More articles by this author Expand All Advertisement Advertisement PDF downloadLoading ...

AB315. SPR-42 Cyclophosphamide-induced overactive bladder via downregulation of relaxation factors in detrusor PDGFRα+ cells

ObjectiveMorphology and functional role of PDGFRα+ cells have been recently characterized in the detrusor muscle layer. Detrusor relaxation is caused by activation of small conductance Ca2+ activated-K+ (SK) channels and purinergic inhibitory responses in detrusor PDGFRα+ cells. Loss of PDGFRα+ cells or alteration of P2Y receptors and SK channels will affect detrusor excitability. Cyclophosphamide (CYP)-treated animals exhibited overactive bladder (OAB). We hypothesized that the downregulation of P2Y receptors and/or SK channels in PDGFRα+ cells will display the phenotype of CYP-induced OAB.MethodsCYP was injected intraperitoneally in PDGFRα+/eGFP and SMC/eGFP mice. We harvested the detrusor muscle without urothelium and disperse the cells for the fluorescence activated cell sorting (FACS). Sorted PDGFRα+ cells and smooth muscle cells (SMCs) were used for molecular study to compare the changes in transcripts between CYP-injected and control group. Transcripts were examined included; Pdgfrα, P2ry1, P2ry2, P2ry4, Kcnn1, Kcnn2, Kcnn3 and inflammation marker (Il-6). Immunohistochemistry, mechanical contractility and ex vivo cystometry were also performed.ResultsQuantitative analysis of PCR revealed that CYP-injected detrusor muscle increased transcriptional expression of Il-6, but decreased the expression of Pdgfrα. Transcriptional changes in CYP-injected sorted PDGFRα+ cells from PDGFRα+/eGFP mice showed Pdgfα, Kccn3 (SK3), P2ry1, P2ry2 and P2ry4 genes were decreased compared with saline-injected control. Sorted SMCs from SMC/eGFP mice did not show significant expression of those genes and no detectable changes. Immunohistochemistry showed SK3 in PDGFRα immunoreactivity was downregulated in CYP-injected detrusor muscle. Apamin (a SK blocker) sensitivity on spontaneous contractile activity was decreased in CYP-injected mice compared to saline-injected mice. In ex vivo cystometry, increased spontaneous non-voiding contractions and less apamin sensitivity were observed in CYP-injected mice.ConclusionsThese findings are the first report to investigate the role of PDGFRα+ cells in relation to OAB mechanisms. In conclusion, we found that CYP-induced OAB is resulted from down regulation of PDGFRα, P2Y receptors and SK channels in CYP-injected bladder. These results provide novel mechanisms of functional role of PDGFRα+ cells on OAB.Funding Source(s)NIDDK, RO1 DK098388 and Urology Care Foundation Research Scholar Award (Interstitial Cystitis Association)

The Interstitial Cystitis Association of America: lessons learned over the past 30 years.

In 1984, interstitial cystitis (IC) was considered a rare psychosomatic disorder in post-menopausal women. In 2014, the Interstitial Cystitis Association of America (ICA) celebrated its 30th anniversary. We’ve come a long way since 1984 and great progress has been made. IC is now recognized as a condition that afflicts both men and women of all ages, including children and teenagers. It is not a psychiatric disorder. Though it was once thought to be an orphan disease (defined as affecting less than 200,000 people), we now know that there are millions of women and men who suffer from IC/BPS (bladder pain syndrome). In looking back over this period, there were seven key reasons why the ICA became so successful: an extremely dedicated ICA staff, Board of Directors and volunteers; a very strong Medical Advisory Board and participation of many other urologists from across the country and around the world; cooperation of the media; epidemiological studies; the ICA’s Pilot Research Program; our representation in Congress; and a strong working partnership with the National Institutes of Health (NIH). Our history may prove useful to other advocacy groups.

Mast cell activation syndrome.

It has been over 30 years since the Interstitial Cystitis Association of America (ICA) was established in 1984. Although a great deal more is understood about interstitial cystitis/bladder pain syndrome (IC/BPS), the cause and cure of this condition remains unknown. One hypothesis regarding etiology that appears to have been overlooked or dismissed is a theory that involves mast cells. It is worthwhile taking a second look.

IntheNews: A ROUNDUP OF NEWS AND INFORMATION FROM OUR COMMUNITY

In<i>the</i>News: A ROUNDUP OF NEWS AND INFORMATION FROM OUR COMMUNITY

Interstitial cystitis patients’ use and rating of complementary and alternative medicine therapies

The purpose of this study was to describe the use of complementary and alternative medicine (CAM) therapies among interstitial cystitis (IC) patients, patients' perception of CAM therapies' effectiveness, and the association of time since diagnosis with perceived effectiveness of these therapies. In April 2009, the Interstitial Cystitis Association (ICA) initiated an Internet-based survey on CAM. Respondents indicated whether they received an IC diagnosis and how long ago, whether they tried CAM, and who recommended it. On a 5-point scale, respondents rated 49 therapies. For respondents confirming a diagnosis, we used a chi-square goodness-of-fit test to assess which therapies were rated positively or negatively by a majority of patients who tried them. Using separate one-way analyses of variance, we assessed differences in mean perceived effectiveness among groups based on time since diagnosis and conducted post hoc tests, if necessary. Using chi-square tests, we explored the association of time since diagnosis with the use of CAM and the number of therapies tried. A total of 2,101 subjects responded to the survey; 1,982 confirmed an IC diagnosis. Most (84.2 %) had tried CAM, and 55 % said physicians had recommended CAM. Of those trying CAM, 82.8 % had tried diet or physical therapy and 69.2 % other therapies. Of the therapies, 22 were rated positively and 20 negatively; 7 were inconclusive. Therapies patients perceived to be helpful included dietary management and pain management adjuncts such as physical therapy, heat and cold, meditation and relaxation, acupuncture, stress reduction, exercise, and sleep hygiene. Many therapies worked better for those diagnosed recently than for those diagnosed long before. Randomized, placebo-controlled studies are needed to demonstrate which therapies may indeed control IC symptoms and help send research in new and productive directions.

Can Epidemiology Translate Into Understanding Major Depression With Borderline Personality Disorder?

Can Epidemiology Translate Into Understanding Major Depression With Borderline Personality Disorder?

Dietary Consumption Triggers in Interstitial Cystitis/Bladder Pain Syndrome Patients

: The aim of this study was to survey interstitial cystitis/bladder pain syndrome (IC/BPS) patients with a Web-based questionnaire to determine which consumables (foods, drinks, supplements/spices, and general food categories) truly exacerbate IC/BPS symptoms. : The Interstitial Cystitis Association posted a Web link on its Web site offering its members participation in the Web-based questionnaire from April 2009 to February 2010. Members were asked questions on the effect of 344 different foods, drinks, supplements, condiments/spices, and general food categories on urinary frequency, urgency, and/or pelvic pain symptoms. Members were asked to score symptoms related to consumables on a symptom Likert scale of 0 to 5. Questions on ethnicity, education, symptom duration, seasonal allergies, irritable bowel syndrome, and specific diets were included. : There were 598 complete responses to the questionnaire, and 95.8% of the participants answered that certain foods and beverages affected their IC/BPS symptoms. Most items had no effect on symptoms. Items that made symptoms worse were citrus fruits, tomatoes, coffee, tea, carbonated and alcoholic beverages, spicy foods, artificial sweeteners, and vitamin C. Only calcium glycerophosphate (Prelief; AK Pharma, Inc, Pleasantville, NJ) and sodium bicarbonate (baking soda) had a trend toward improvement in symptoms. : Interstitial cystitis diets do not have to be overly restrictive. It is recommended that patients with IC/BPS avoid citrus fruits, tomatoes, coffee, tea, carbonated and alcoholic beverages, spicy foods, artificial sweeteners, and vitamin C. The use of calcium glycerophosphate and/or sodium bicarbonate before consumption of these trigger consumables may also help reduce sensitivity.

Current Diagnosis of Interstitial Cystitis: An Evolving Paradigm

Our approaches to the diagnosis of interstitial cystitis (IC) are evolving as a result of recent advances in our knowledge of the disease. With increasing awareness of IC prevalence and presentation, clinicians are identifying cases of IC earlier in the disease process. A diagnosis of IC can now be established without applying each step of the traditional diagnostic paradigm, which was designed to identify "classic" cases of IC. In this article, we present an updated paradigm for the diagnosis of IC based on recent clinical data and consensus discussions conducted at the International Consultation on Interstitial Cystitis in Japan (ICICJ) and the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)/Interstitial Cystitis Association (ICA) research symposium in 2003. The diagnosis is established on the basis of a thorough physical examination and the patient's history of urgency/frequency and/or pain in the absence of bacterial infection or malignancy. Use of a symptom questionnaire to capture and record the presence of all IC symptoms is helpful in establishing the diagnosis. In this evolving paradigm, all other diagnostic measures are optional. Evidence-based medicine does not require the use of either cystoscopy or urodynamics in a workup for IC.

INTRODUCTION: Painful Bladder Syndrome/Interstitial Cystitis (PBS/IC)

As Urogynecology has moved increasingly away from its initial role as a ‘‘borderline’’ discipline, there has been a gradual increase in the attention given to problems in women which had been neglected by traditional gynecology, since these problems were previously considered to be an inevitable consequence of aging – urinary incontinence and pelvic organ prolapse, for example. Our understanding of sensory disturbances of the lower urinary tract is much less clear. A precise diagnosis is difficult to obtain and this condition has been recently more broadly classified as Painful Bladder Syndrome (PBS). A restricted portion of this syndrome is represented by interstitial cystitis (IC) which, while known to have a nonbacterial etiology, is far from being completely understood. Many different hypotheses attempt to explain the causes of this condition, which involve the entire pelvic floor. However, it seems that the bladder plays a central role even in patients who do not have predominantly urological symptoms. Symptoms of many patients with IC affect all the pelvic organs, superimposing other diagnoses such as irritable bowel syndrome, vulvodynia or endometriosis, but pain is the common element. For this reason, the International Continence Society (ICS) has included IC in the broader category of PBS. In order to emphasize the role of IC in the context of the varied panorama of PBS, some studies have used the double nomenclature of PBS/IC, which we encourage. Numerous definitions of IC can be found in the literature, but from all of the authors a common factor emerges: this is a disease of unknown etiological origin, chronic, as yet without effective pharmacological therapies, often ignored by doctors, and far from being resolved. The difficulty in obtaining a correct diagnosis within a short time, the psychologically traumatic process for the patient, and the lack of information from the scientific community, have brought groups of patients together to form national non-profit organizations in order to raise awareness about IC, provide funds for research, and support people who have an illness which is considered by many family doctors, gynecologists and urologists to be a problem ‘‘all in the head.’’ The scientific community’s interest in IC is increasing along with enthusiasm in the world of research. Due to the necessity for a means of comparison between countries throughout the world, MICA – Multinational Interstitial Cystitis Association – (www.multinationalica.org) was formed, founded by non-profit organizations from the United States, Germany, Austria and Italy. MICA provides a platform for exchange between the doctors who have been working in this field for some time. The goal of the first MICA Meeting was to encourage dialogue about the definition of IC within the international scientific community and to provide the most up-to-date information on all aspects of the disease. The meeting also served to incorporate the experiences of the various patient non-profit organizations, in order not to forget the disabling effect on the daily life of both those who suffer from the disease and their families and friends. The expert opinions of the researchers and representatives of non-profit IC organizations directly involved in this inaugural MICA meeting are brought together in this Supplement in order to stimulate doctors and researchers to resolve this enigma by continuing their efforts to obtain a better understanding of the definition of IC and its possible causes, and to search for more uniformly effective treatments. Int Urogynecol J (2005) 16: S1 DOI 10.1007/s00192-005-1287-4

Prevalence of interstitial cystitis in first-degree relatives of patients with interstitial cystitis

Objectives To compare, in a pilot study, the prevalence of interstitial cystitis (IC) among first-degree relatives of patients with IC with the prevalence of IC in the general population. Often the first evidence that a disease may have a genetic susceptibility is the demonstration of family aggregation of the disease. Methods Members of the Interstitial Cystitis Association (ICA) were mailed a survey inquiring about the prevalence of the disease or consistent symptoms in first-degree family members (parents, siblings, and/or children). The same survey instrument was used in telephone interviews of a randomly selected sample of nonrespondents to determine the degree of responder bias. Results Of 2581 respondents to the mail-in survey, 101 (3.9%) reported 107 first-degree relatives with IC. The subsequent telephone interviews with 346 randomly selected nonrespondents revealed little selection bias in the mail-in survey. These measurements, plus data-based assumptions of proportions of those self-reporting IC who actually met the hydrodistension requirements for the diagnosis of IC, suggest that women, 31 to 73 years old who were first-degree relatives of patients with IC, themselves had a prevalence of IC of 995/100,000. A comparison of this with the number approximating the prevalence in the general population of American women of this age (60/100,000) indicates a risk ratio for IC in adult female first-degree relatives of 17. Conclusions Adult female first-degree relatives of patients with IC may have a prevalence of IC 17 times that found in the general population. This, together with previously reported evidence showing a greater concordance of IC among monozygotic than dizygotic twins, suggests, but does not prove, a genetic susceptibility to IC.

The legendary beginning of the International Consultation on Interstitial Cystitis.

The legendary beginning of the International Consultation on Interstitial Cystitis.

Concordance of interstitial cystitis (IC) in identical twins: preliminary data

If a disease is genetic, the closer the biologic relationship to an index case, the higher the prevalence of the disease. This is because monozygotic twins share all their genes; first-degree relatives (parents, siblings [including dizygotic twins], children) share half; second-degree relatives (aunts, uncles, nephews, nieces) share one fourth; and third-degree relatives (first cousins) share one eighth of their genes. Funded by the Fishbein Foundation, we collaborated with the Interstitial Cystitis Association (ICA) in performing a family survey of ICA members in the summer of 1999. Of the 2581 ICA respondents, 50 noted they were one of a pair of twins. We reproduced the methodology of Curhan et al. (J Urol 1999; 161:549) to define IC (see Table 1).

Current controversies that adversely affect interstitial cystitis patients

Interstitial cystitis (IC) remains a diagnosis of exclusion, based on the symptoms of urinary urgency, frequency, and pelvic pain in the absence of other definable causes. Certain areas of controversy in the field of IC research have a significant adverse affect on patients. Many physicians still do not believe that IC exists, or else believe that it is a rare postmenopausal condition. This can cause significant delays in diagnosis and treatment. It is particularly problematic in children, whose symptoms are often diagnosed as “voiding dysfunction” and are thought to be self-limiting. It can also be problematic for men, who are often unsuccessfully treated for prostatitis over the course of many years, and for whom the diagnosis of IC is never entertained. In some cases, when no diagnosis is made, patients are left to live with severe, debilitating symptoms and have nowhere to turn for help. Resistance to treating severe nonmalignant pain with opioid medication further compounds this problem and has led to suicide in this patient population. The “gold standard” of cystoscopy with hydrodistention is now being questioned, and an overreliance on the potassium test, which has a high false-negative rate, may lead to significant underdiagnosis of IC. New urinary markers hold promise for both diagnostic as well as therapeutic potential, but are not yet commercially available. IC may be an organ-specific disease in some patients and a systemic condition in others. Many patients have multiple disorders and have no physician to manage their overall health. The Interstitial Cystitis Association believes that the best way to address these unresolved areas of knowledge is to: (1) educate patients on all available diagnostic and therapeutic options so that patients, with the help of their physicians, can make the best informed decisions possible, and (2) aggressively pursue all avenues of research, particularly epidemiology.