Flares and their impact among male urologic chronic pelvic pain syndrome patients: An in‐depth qualitative analysis in the Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network

Abstract

Introduction 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. Methods 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. Results 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. Conclusions 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.

Urologic Chronic Pelvic Pain Syndrome Flares: A Comprehensive, Systematic Review and Meta-Analysis of the Peer-Reviewed Flare Literature

“…These studies included an older mixedmethods study of IC/BPS participants, 8 as well as several more recent qualitative and mixed-methods studies of mainly IC/BPS participants. [9][10][11][12][13][14][15][16] The most commonly used term by participants in the older study was "attack," 8 whereas the most commonly used term in more recent studies was "flare" or derivations thereof. [9][10][11][12][13][14][15][16] Additional terms mentioned were "bad," "bad bladder," or "stay-in-bed" days; "episodes," "pelvic floor episodes," "incidents," "exacerbation," and "inflammation."…”

“…[9][10][11][12][13][14][15][16] The most commonly used term by participants in the older study was "attack," 8 whereas the most commonly used term in more recent studies was "flare" or derivations thereof. [9][10][11][12][13][14][15][16] Additional terms mentioned were "bad," "bad bladder," or "stay-in-bed" days; "episodes," "pelvic floor episodes," "incidents," "exacerbation," and "inflammation." 9,[11][12][13] Participants also subdivided their flares into "minor" or "moderate" flares vs "major" flares and other similar terms.…”

“…[9][10][11][12][13][14][15][16] Additional terms mentioned were "bad," "bad bladder," or "stay-in-bed" days; "episodes," "pelvic floor episodes," "incidents," "exacerbation," and "inflammation." 9,[11][12][13] Participants also subdivided their flares into "minor" or "moderate" flares vs "major" flares and other similar terms. 9,13,15 Manifestation Twenty-one articles provided information on flare manifestation, 8,9,12,13,[17][18][19][20][21][22][23][24][25][26][27][28][29][30][31][32][33] although only 6 documented participants' experiences prospectively over time.…”

“…9,[11][12][13] Participants also subdivided their flares into "minor" or "moderate" flares vs "major" flares and other similar terms. 9,13,15 Manifestation Twenty-one articles provided information on flare manifestation, 8,9,12,13,[17][18][19][20][21][22][23][24][25][26][27][28][29][30][31][32][33] although only 6 documented participants' experiences prospectively over time. [21][22][23]25,28,29 Most participants reported at least 1 flare during their lifetime and/or symptom fluctuations (57%-100%; Supplementary Appendix Tables 1 and 2, https://www.jurology.com).…”

Impact of ejaculation upon effect of acupuncture on chronic prostatitis/chronic pelvic pain syndrome: Secondary analysis of a randomized controlled trial

“…Chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS), classified as type-III prostatitis according to the National Institutes of Health (NIH) consensus, 1 features urinary tract symptoms, sexual dysfunction, and local pain or discomfort in the perineum, suprapubic area, penis, or testicles, which is usually aggravated by ejaculation. 2 , 3 Regular ejaculation performs the function of cleaning stagnant secretions, 4 although no consensus has been reached in terms of ideal ejaculation frequency. Frequently-occurred erectile dysfunction and pain before and after intercourse deprive CP/CPPS patients of their sexual pleasure, reduce their sexual desire, and make them reluctant to perform sexual behavior in the relationship.…”