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New Guide Helps Establish Common Language on IC and Other Pelvic Pain Syndromes

Doggweiler R, Whitmore KE, Meijlink JM, Drake MJ, Frawley H, Nordling J, Hanno P, Fraser MO, Homma Y, Garrido G, Gomes MJ, Elneil S, van de Merwe JP, Lin AT, Tomoe H. A standard for terminology in chronic pelvic pain syndromes: A report from the chronic pelvic pain working group of the international continence society. Neurourol Urodyn. 2016 Aug 26. doi: 10.1002/nau.23072. [Epub ahead of print]

Experts from around the world have collaborated to produce a first-of-its-kind guide that will help everyone speak the same language when diagnosing, treating, and studying pelvic pain syndromes. The first-ever International Continence Society (ICS) Standard for Terminology in Chronic Pelvic Pain Syndromes will likely not only improve understanding of these diseases, but also help clinicians and researchers alike as they provide patient care and conduct studies of promising new therapies. The guide covers many aspects of pelvic pain syndromes and makes specific reference to interstitial cystitis/bladder pain syndrome (IC/BPS). Of note, the experts are careful to explain the difference between conditions, diseases, and syndromes. They note that IC/BPS is a “syndrome,” defined as a situation where a group of symptoms and signs that occur together, collectively indicating a disease despite no obvious disease pathology (i.e. no clear causes of disease identified in bodily fluids, tissues, or organs). They specifically define IC/BPS as “persistent or recurrent chronic pelvic pain, pressure or discomfort perceived to be related to the urinary bladder accompanied by at least one other urinary symptom such as an urgent need to void or urinary frequency.” The authors hope their guide will help advance the field through better classification of patients, better clinical trials, and more effective drugs. However, they caution that having clear definitions of these diseases and syndromes is just a starting point for evaluation of specific patients, which needs to be individualized based on the patient’s unique perception of pain, social issues, and other factors.

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