Screening, Treatment, and Management of IC/PBS – Background

(Published May 2008)

Working Toward a Better Understanding of Interstitial Cystitis/Painful Bladder Syndrome

Interstitial cystitis/painful bladder syndrome (IC/PBS) is a chronic debilitating condition characterized by pelvic pain, urinary urgency, and urinary frequency. It affects more than one million women and more than 80,000 men in the United States, although these figures may significantly underestimate the true prevalence of the condition. Patients with IC/PBS suffer from a “silent affliction,” often appearing healthy but experiencing unrelenting pain that requires frequent trips to the bathroom, both day and night. The condition exacts a significant toll on patients’ quality of life. However, therapy is available that can manage symptoms and improve quality of life. Access to such therapy can have a major impact on the life of a patient with IC/PBS. However, effective therapy relies on an accurate diagnosis, and accurate diagnosis ultimately depends on recognition of the disorder. For this reason, awareness of IC/PBS by both patients and providers is critical.

Many gaps exist in our understanding of IC/PBS. We lack a widely agreed upon definition. The etiology, pathophysiology, and risk factors are unclear. Ideal diagnosis and management are as yet uncertain. The exact relationship between IC/PBS and a host of associated conditions, such as irritable bowel syndrome and fibromyalgia, remains unclear. The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) recently launched research opportunities to better understand this relationship, suggesting that in the future, our understanding of IC/PBS and its treatment may be quite different. For the present, however, we are faced with tremendous gaps in our knowledge about IC/PBS and its optimal management.

To address these gaps in knowledge, the Association of Reproductive Health Professionals (ARHP) and the Interstitial Cystitis Association (ICA), a national education and patient advocacy group dedicated to IC/PBS, convened a multidisciplinary group of researchers, clinicians, and patients in Washington, DC, on February 10, 2007. The goal of the meeting was to exchange ideas and gauge majority opinion on several key and potentially controversial issues regarding IC/PBS.

The 23 participants of the Washington Consensus Meeting on Interstitial Cystitis/Painful Bladder Syndrome included researchers, urologists, obstetrician-gynecologists, pain specialists, nurse practitioners, a registered nurse, and a pharmacist. Three individuals with IC/PBS attended the meeting, offering a patient perspective. The group developed statements with which the majority agreed; these statements are included in this monograph. The group also identified areas requiring future research. ARHP and the ICA hope that these statements, along with the background material on IC/PBS and committee recommendations provided in this document, will help clinicians to better recognize, diagnose, and treat IC/PBS, thus limiting the suffering associated with this chronic condition.

We want to express our sincere thanks to the members of the expert advisory committee for investing their insights and valuable time to this project.