There has been a sparse exploration of the lived experience of men with urologic chronic pelvic pain syndrome (UCPPS), and none with the goal of Investigating the experience of "flares" as part of this chronic pain syndrome in men.
We conducted three focus groups of male UCPPS patients at two sites of the MAPP Research Network (n = 16 total participants) to explore the full spectrum of flares and their impact on men's lives.
Flare experiences were common and specific symptom components varied widely. Men reported nonpelvic symptoms (e.g., diarrhea), and variability in symptom intensity (mild to severe), duration (minutes to days), and frequency of flares. Flares episodes, and the threat of flares, were disruptive to their lives, social roles, and relationships. Distinct long-term impacts were reported, such as decreased sexual activity, decreased travel, and potential loss of employment or career. The themes included social isolation and the need for a sense of control and understanding over their unpredictable symptoms.
Given their negative impact, future research with men and UCPPS should focus on approaches to prevent flares, and should consider a multimodal approach to reducing the frequency, severity, and/or duration. Quality of life may be improved by providing men with a sense of control over their symptoms and offering them multimodal treatment options, consistent with the recommendations for further research for women with UCPPS.
Neurourology and urodynamics. 2022 Jun 10 [Epub ahead of print]
Susanne A Quallich, J Quentin Clemens, Carrie Ronstrom, Aimee S James, Karl J Kreder, H Henry Lai, Bruce D Naliboff, Larissa V Rodriguez, Sandra H Berry, Siobhan Sutcliffe
Department of Urology, Division of Andrology, General and Community Health, Michigan Medicine, University of Michigan, Ann Arbor, Michigan, USA., Department of Urology, Division of Neurology and Pelvic Reconstructive Surgery, Michigan Medicine, University of Michigan, Ann Arbor, Michigan, USA., Department of Surgery, Division of Urologic Surgery, Washington University School of Medicine, St. Louis, Missouri, USA., Department of Surgery, Division of Public Health Sciences and the Alvin J. Siteman Cancer Center, Washington University School of Medicine, St. Louis, Missouri, USA., Department of Urology, College of Medicine, University of Iowa, Iowa City, Iowa, USA., David Geffen School of Medicine, University of California Los Angeles, Los Angeles, California, USA., Departments of Urology and Obstetrics and Gynecology, University of Southern California, Los Angeles, California, USA., Rand Corporation, Santa Monica, California, USA.