FLARES AND THEIR IMPACT AMONG MALE UROLOGIC CHRONIC PELVIC PAIN SYNDROME PATIENTS: AN IN-DEPTH QUALITATIVE ANALYSIS IN THE MAPP ^{RESEARCH NETWORK}

Abstract

Introduction:

There has been 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 mens’ lives.

Results:

Flare experiences were common and specific symptom components varied widely. Men reported non-pelvic 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. 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.

INTRODUCTION

Urologic chronic pelvic pain syndrome (UCPPS) encompasses interstitial cystitis/bladder pain syndrome (IC/BPS) and chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS). It is a chronic, idiopathic pain condition that affects approximately 2 to 4% of men^1,2, and is characterized by symptoms of at least 3 months’ duration, including pelvic or genital pain; urinary symptoms, such as urinary urgency and frequency; and sexual symptoms, such as painful ejaculation. UCPPS is difficult to diagnose and treat, and is rarely cured, although the symptoms can be managed in some patients³. Its chronic, painful nature contributes to decreased physical, mental, and sexual health, and high economic costs for patients and the health care system⁴.

The natural history of UCPPS is often described as being quite variable, with symptom exacerbations commonly referred to as “flares”. In our previous studies in the MAPP Network, we found that male UCPPS patients reported flares as often as several times per day to less than once per year, and that flares varied in terms of duration (minutes to days), type of symptom (pain or urologic symptom), and symptom intensity (mild to severe)^2,5. Longer-lasting and more painful flares tended to be associated with greater impact to patients, including disruptions to their thoughts and activities, and increased overall bother². We and others have also surveyed male UCPPS patients about a select number of factors they believe trigger flares^6–13 and ways in which they treat or manage their flares^6,11,13 A single qualitative study interviewed male patients about flares, but focused their analysis largely on the influence of cold temperature¹⁴.

Beyond this one small study, no other studies have explored flares in a qualitative manner in male UCPPS patients to document their full spectrum of manifestation, perceived triggers and treatment/management strategies, and immediate and longer-term impact on men’s lives. This type of in-depth, formative, qualitative information is critical to inform the development of patient-centered outcome measures for use in future studies of UCPPS flare etiology, treatment, and management. Therefore, we performed focus groups of male UCPPS participants in the Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network to better understand flare experiences in men and to complement our findings in female UCPPS participants¹⁵.

MATERIALS AND METHODS

Study design and population

The MAPP Epidemiology and Phenotyping (EP) Study¹⁶ was a longitudinal, observational study of the treated natural history of UCPPS, and developed a specific protocol for participant recruitment. Eligibility criteria for male MAPP participants included a diagnosis of IC/BPS and/or CP/CPS, age ≥18 years, and a non-zero score for bladder and/or pelvic pain, pressure, or discomfort in the preceding two weeks.

For the present study, we completed three focus groups with male UCPPS patients at two participating Discovery Sites of the MAPP Research Network (Washington University School of Medicine and the University of Iowa College of Medicine). These sites recruited male participants enrolled in the MAPP EP study (“MAPP”) and men who would otherwise qualify for the EP study but who were not participants in this protocol (“MAPP-naïve”). All participants provided informed consent and protocol was approved by the institutional review board at each participating site.

Study procedures

Each focus group consisted of a 90-minute discussion facilitated by the same male moderator. Following the discussion, participants were asked to complete 5 brief questionnaires similar to those used in the MAPP EP study: a demographics survey; a medical history survey; the IC Symptom Index and Problem Index¹⁷, the Male Genitourinary Pain Index¹⁸; and a general symptom survey that included questions on whether or not participants were currently experiencing a “flare”, defined by the protocol as urologic or pelvic pain symptoms that are “much worse than usual”, and the number of flares experienced in the past year¹⁷. All focus groups were recorded and transcribed verbatim by trained transcriptionists, and transcripts were checked for accuracy and de-identified.

Qualitative analysis

After review of all transcripts, we developed a comprehensive set of descriptive codes for qualitative analysis¹⁴. These codes were developed deductively from the moderator’s guide and inductively after transcript review. One primary rater coded all quotes and a second rater reviewed the coding; ATas-ti software (version 7) was used to facilitate qualitative analysis.

RESULTS

A total of 16 men participated in the three focus groups (13 MAPP and 3 MAPP-naïve). Participants ranged in age from 28 to 72 years old (mean = 51.1) and were primarily White (68.8%) (Appendix). Men experienced UCPPS for 1 to 25 years (mean = 10). Mean symptom ratings over the preceding two weeks were 3.7 (scale 0–10) for severity of pelvic or bladder pain; 3.4 for urgency and 4.1 for frequency. At the time of the focus group 30.8% of participants in the MAPP focus groups were experiencing a flare, whereas none of the MAPP-naïve participants were currently experiencing a flare.

Analysis of the transcripts yielded several thematic groupings.

Flare descriptors and associated symptoms

Men described symptom exacerbations variously: “flare,” “burning flare up,” “incident,” inflammation” and “bad day” (Table 1). Severe exacerbations were described as “big one,” “bad flare day,” “it’s just much more intense when they’re bad flares,” and “major.” Specific symptom descriptors ranged from “constant pain,” and “intense throbbing” during mild or moderate exacerbations to “substantially worse”, “extreme pain and you can’t sleep,” and “unrelenting” during severe exacerbations. Men localized during mild exacerbations at the tip of the penis or just above the penis, wheras during exacerbations the pain was perceived in the pelvis or anus. During significant exacerbations men described extra-pelvic locations of pain including headaches and low back pain.

Table 1:

Spectrum of symptom exacerbations reported by male urologic chronic pelvic pain syndrome (UCPPS) focus group participants, MAPP Research Network

	Symptom exacerbation: unspecified or mild/ moderate symptom exacerbation	Severe symptom exacerbation
Symptom exacerbation names	“Flare”, “flare up”, “burning flare up”, “bad day”, “inflammation”, “incident”, “episode” “Minor”, “mild”, “mini”, “small”	“Major”, “bad” flare or flare up; “bad pain day”, “big one”, “unrelenting”
Illustrative quotes	“The burning sensation that comes with the prostate doing whatever it does” “Temporary inflammation, not long term and sporadic here and there, not something that’s constant.” “The bad day is just what everybody considers flares. Now if you have constant pain.”	“Flare just means that you have a good day and then out of the clear blue, unrelated to you know a bad night’s sleep, you’re, you’ve been on your, whatever the current diet of the month is.” “Everything you know will hurt in the same areas; it’s just much more intense when they’re bad flares.” “Severe flare ups; I’m lucky if I can do anything” “Intensity of the pain”
Burning	“Low” to “a lot”	“A lot” “Extremely bad” “It feels like I’m burning up. I mean I’m on fire”
Pain	Not a lot “Cramping pain at times” 6,7, or 8 “Intense throbbing or intense pain” “Constant pain” “After you’ve had a scar or hurt yourself […] where it just swelled up or it’s throbbing; it goes along the same lines as that. It’s like not on and off, it’s just constant where it’s like once it’s no longer swelled, then it just goes down and everything goes back to normal.”	8; “Shoot up to a 10” “Pretty severe”; “substantially worse”; “more intense” “Extreme pain and you can’t sleep” “It almost hurts so bad that you can’t go to the bathroom [i.e., bowel movements or urination] because you can’t get past that pain threshold.” “Painful; so much so that sometimes you like almost curl your toes on your feet.” “Sharp sheering pain” “Unrelenting … every minute seems like it’s an hour” “The worst is just in the middle of those nights when you’re in extreme pain and you can’t sleep”
Location of pain
Genital/pelvic location of burning or pain	“Pelvic pain” “Middle of penile tract” “Testicle pain” “Tip of the penis. Just above the penis as well” “Along the sacs”; “Right side of the sac”	“A lot of burning at the tip” “Where the pubic hair is” “On the pelvic sites” “Concentrated pelvis” “Anal pain where it’s hard to sit”
Extra-pelvic location of pain	“General abdominal pain”	Headache Lower back pain “Weird rheumatoid kind of response where the joints, especially the upper body, seize. And then I will lock up for an hour or three.”
Pain descriptors	The bowling ball feeling of that just kind of inert heavy object... there’s kind of a persistent ache that just kind of radiates out from that” “Dull ache”	“I know what labor pain is to my wife but this was 1,000 times more than what labor pain was.”
Urinary symptoms
Hesitancy/difficulty to begin voiding	“It takes forever and it’s like hell to void.” “Taking forever to urinate is utterly annoying”	“Unable to urinate” “Peeing with much more problem” “Difficulty in getting the flow started”
Pain with urination		“Not much pain with urination” “I almost pass out on the toilet seat and it takes, it’s horrible,.”
Weak stream		“Slow and weak stream”
Frequency	Probably 10–12 times a day “An hour after or two hours after I pee, I have to go pee again.” “Increased frequency of urination” “About every hour, hour and a half depending on how much coffee and water I’ve drank”	“Every 5 minutes. I just couldn’t get out of the bathroom […] because every time I peed, there was a lot relief in my symptoms like momentarily. So and my brain would constantly say go, go, go, go to the bathroom, go to the bathroom.” Peeing “more and more”
Nocturia	“Getting up 2 or 3 times.” “The 3 times a night is good, it’s better than 4 or 5.” “I have to get up every 2 hours to urinate”	“Filling an 8 ounce cup every 15 minutes. And you can’t shut it off.” “Getting up 4 or 5 times a night”
Urgency	“Sense of urgency” “When I have to go, it’s that urgent and I have to there.”	“I have found myself trying to hold it as they say and I found myself almost leaking. And I find myself almost running.”
Sensation of incomplete voiding	“So after I peed, it would still feel like I need to go and pee.” “Which leaves you feeling you know that that sensation persists over time that you still have to go which you really don’t.” “The sensation you feel when you have to go pee, that’s always been there, that’s, I cannot escape that. That’s, even after I pee, it’s still there, even if I push down on my bladder and force it.”
Other symptoms
General symptoms	Minor bleeding with urination Bloody discharge “I’ll feel like I can’t breathe” Lethargic Feeling unwell	Fatigue “Feverish, couldn’t get out of bed… I thought I was going to die half the time” “I’ll just get like pneumonia.”
Bowel Movements	“Irritable bowel like symptoms”	“3 or 4 bowel movements during the day”
Flare descriptors
Flare duration	“It’s only when I urinate” “Never just hours” “On the order of months” 3–4 months “2 weeks” “3–4 days” “It’s not often strung together several days in a row.” “Usually a day or two. To you know a couple of weeks. I mean then it fluctuates within that.” “There are times that I can be in pain for like an hour. But it really lasts a day”	“Rest of the day” after eating One to three hours One week
Flare frequency	“Infrequent” “All of a sudden, you wake up one night, its back” “I’m seeing progress because it’ll be maybe 2 or 3 weeks that I’ll have very little pain. And then out of the blue it comes raging back.” “3–4 days every 3 weeks” “So frequency of those episodes; great question. In a month, scattered about and can be anywhere from 4–7 days I would say would be particularly hard and then within that, some of those days are going to be even more intense than others. It’s kind of the scale. But within, I would, yeah exactly, you get through the day and you can get some sleep and then the next day is usually better.” “They usually come and then they stop; they won’t come for another 2 or 3 years but then they start coming and they come a little bit more frequently, maybe 1 or 2.”	“Every week” “Once a month.” “4 or 5 days a month”
Timing of flare onset	“Very unpredictable” “Out of the blue” “They’re more predictable in the sense that they kind of bunch together “Very rapid” “All of a sudden the next day” “Gradual” Same day as dietary trigger	“Really quickly” “All of a sudden”
Timing of flare recession	“I’ll wait for a minute […] and then once it goes. I’m back off doing whatever I do.” “2 days I have relief” “So if you take a month, I’ll have 1 week that’s really, really good.” “It’s more of a gradual coming on and going away kind of thing” “There are definitely times when it’s, I’ll go a couple of weeks and not, you know nothing will be there.” “Slow to subside” “It takes a couple of weeks to get it going again.” “Gradual”	“Took me about a month to get that burning to subside.”

A significant number of urinary symptoms accompanied severe pain exacerbations: “unable to urinate,” “slow and weak stream,” and “almost leaking”. Non-genitourinary symptoms included rheumatologic complaints, pain with bowel movements, pelvic “heaviness”, fatigue, or lethargy. Flare duration was as short only during urination or could last for several weeks.

Flare triggers and treatment/management

When asked what triggered their flares, most participants could identify at least some triggers (e.g., carbonated beverages, caffeine, sitting for long periods of time; see Table 2). Dietary flare triggers varied, as triggers for some had no effect for others; trigger influence varied regarding portion, type, timing, and frequency of exposure: “if I eat certain food, I know it’s going to happen”, “Like me, I can eat tomatoes, but I know it has to be in moderation. I can’t…have 4 slices of pizza and expect nothing else to happen.” Significant effort was directed to identifying triggers by changing diets, seeking tests for allergies, researching common triggers online, and speaking with their providers. Triggers were commonly identified by an individual re-examining their pre-flare exposures: “if I’m constipated, if I’ve eaten something wrong, that can bring on the anal pain as well”. Participants expressed frustration, especially when unable to pinpoint triggers or the source of a flare: “the major ones, unfortunately I have no idea.”

Table 2:

Flare triggers reported by male urologic chronic pelvic pain syndrome (UCPPS) focus group participants, Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network

Reported flare triggers	Examples	Examples of variation by frequency, timing, type, and dose of trigger within and across participants	Preventive or therapeutic measures taken before or after triggers	Long-term flare coping strategies
Foods/diet	Tomatoes, pizza, chocolate, canned foods, spicy foods, yogurt	Processed, canned tomato sauce, but not organic, tomato sauce; many servings, but not a limited number of servings of trigger foods.	Washing down food with water	Moderation, avoidance
Beverages	Carbonated beverages (e.g., Sprite), caffeinated beverages, alcoholic beverages, acidic beverages (e.g., orange juice and Margaritas)	Some types of alcohol, but not lager beer or white wine; many, but not, fewer trigger drinks	Washing down beverage with water	Moderation, avoidance, avoidance near bedtime
Sexual activity	After sexual activity, after masturbating, after ejaculation	Multiple times per day but not every 2–3 days; greater intensity (e.g., “trying too hard”, “putting too much pressure”, being “strenuously active”) or duration of sexual activity, but not lesser intensities or durations of activity; pain with sexual activity for some but relief for others.		Limit intensity and/or duration of sexual activity; prolong time between activity; reduce frequency
Exhaustion/ fatigue	Being “worn down”	Being “worn down entirely” but not missing some sleep
Sitting	Driving, sitting on the toilet, sitting for long periods of time		Switching to a standing position
Bowel movements/ constipation	“Link between diet, constipation, and flares: And sometimes my bowels will be hard if I don’t eat right.” “if I’m constipated for a couple of days and when I finally have that bowel movement, you just feel generally unwell.” “Because that’s the time that I’m completely relieved of all the symptoms.”	Pain during bowel movements, but relief afterwards for some participants, pain following constipation and a bowel movement for some participants; relief during bowel movements for other participants.		Limiting bowel movements
Clothing	Tight pants/ jeans/ “gear”, workout shorts		Removal of clothing	Avoidance, losing weight
Standing	Standing for long periods of time
Exercise	Running, biking, lifting	Exercising too hard or for too long		Limiting duration, avoiding certain physical activities
Missing medications	Flomax
“Shrinkage” or spasm	“The erection isn’t the problem; it’s more so of like me, I’m a mailman so I walk all day so I can get my exercise in but it’s like when I’m walking, it’s like I experience like shrinkage where you know how you sit normally but all of a sudden it’s like everything just pulls in like.”	“So it’s never really been a penis issue of urinating or the tip of it hurting but it’s been a point of it’s always shrinkage when I know it’s going to come on or.”
Weather	Late fall, early winter

Sexual activity served as a trigger, depending on intensity and duration of activity. Most individuals found ways to counteract pain by limiting the intensity of the encounter with the rationale that intense activity “places a lot of pressure on the prostate.” Limiting the frequency of intercourse to once every 2–3 days avoided a flare for some men, while others reported improvements after sexual activity: “Sex does not aggravate my pain. It actually relaxes my pelvis”.

Most triggers appeared to cause an immediate to same-day onset of symptoms. The duration of the resulting flare appeared to be directly related to habits and the time required to implement therapeutic measures (e.g removing tight pants, washing down with water). Prolonged exposure or high consumption of a trigger food often resulted in a longer period of symptoms. Participants reported lifestyle modifications used to minimize flares after exposure to known triggers, starting with the least potent therapies (behavioral modification, heat-based therapies) and only progressing to more potent therapies (e.g., opiates/opioids, medications with greater side-effects, medical procedures) for more severe, recalcitrant flares (see Table 3). Beyond the immediate therapeutic effect of flare management strategies, a few participants reported that certain medications/therapies had reduced the overall severity and/or frequency of their flares (e.g., tamsulosin, hydrodistension).

Table 3:

Flare and general treatment and self-management strategies reported by male urologic chronic pelvic pain syndrome (UCPPS) focus group participants, Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network

	Examples of flare treatment or self-management strategies (used at the time of flares)	Examples of general treatment or self-management strategies (to reduce flare frequency or intensity, or symptoms in general)
Medications/supplements	Opiates/opioids, non-steroidal anti-inflammatory drugs, amitriptyline, antibiotics, antihistamines	Jalyn (combination of dutasteride and tamsulosin/alpha-adrenergic blockers), Flomax/tamsulosin, finasteride, amitriptyline, Elmiron, Cystoprotek, Coresatin, Nopal cactus juice, saw palmetto
Procedures	Hydrodistension	Bladder instillations, acupuncture, clinician- or self-administered prostate massage
Dietary modification	Increasing water intake, eating “the vegetables”, eating less to avoid feeling full	Avoiding or reducing dietary triggers, avoiding products with BPA, restricting water intake outside the home
Behavioral modification	Exercise, walking, standing, sitting down, removing tight pants, adjusting style of pants	Exercise; groin stretches; losing weight; avoiding tight pants; reducing sexual activity duration, frequency, and/or intensity; wearing continence pads; travelling with containers for urination, and an additional pair of underwear and pants
Thermal therapies	Heat, hot sitz baths
Changes to urinary/ bowel habits	Urinating, Sitting on the toilet, timed voiding
Relaxation techniques	Yoga, sitting and relaxing, lying down	Yoga, meditation
Other strategies	Distraction (continuing to work, staying busy)	Religion, absorbent pads, BPA free items

Immediate impact of flares

Most participants reported some immediate impact of flares including fatigue, irritability, anxiety, and reduced concentration (see Table 4). Frequent urination impacted the quality of sleep of several participants, resulting in fatigue and poor concentration the following day. Several participants avoided or cancelled social events due to urinary symptoms and the uncertainty of restroom availability. Some men were comfortable making plans and cancelling if their symptoms flared (“I have no problem pulling the trigger and coming up with some kind of excuse”) whereas others limited their activity in advance not knowing if they would have a flare (“would usually not be scheduling things too far in advance”). Many of the participants in the study reported that both pain and their urinary symptoms increased as daily activity slowed, especially at night.

Table 4:

Immediate impact of flares reported by male urologic chronic pelvic pain syndrome (UCPPS) focus group participants, Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network

Functional impact	Illustrative quotes
Distraction, reduced ability to concentrate	• “It makes it harder for me to focus on you know like if I have a big spreadsheet that I’m working on or you know something… it’s a lot harder. … My productivity.”  • “I’d go [to work]; I just wouldn’t be able to concentrate very well.”
Desire or need to be close to a bathroom	• “You know when it was bad, I would usually not be scheduling things too far in advance if I knew it’d be something where I’m going to have to go for a while where I wouldn’t be able to use the restroom, you know stuff like that.”  • M: “Now does it cause you to be more conscious of where the restrooms are?”  P2: “Oh yes.”  P1: “Yes.”
Canceling/avoiding social events or activities outside the home	• “You know on my bad days, it definitely, I’m not very social.”  • Love the ballgame; that’s great to be down at the ballpark but to sit in those things. Those hard plastic [chairs] for hours.”
Poor sleep/fatigue	• “Well it’s not just the pain but for example, if you have increased frequency let’s say of prostatitis 3–4 times a night. You’re not getting a decent night’s sleep […] and you just start taking naps in the middle of the afternoon or something you know.”  • “The worst is just in the middle of those nights when you’re in extreme pain and you can’t sleep.”
Reduced ability to carry out daily activities	• “It’s hard for me to exercise, which drives me crazy because I really like to exercise.”  • “Severe flare ups; I’m lucky if I can do anything.”  • “There was not much pain with urination and I would urinate every 5 minutes. I just couldn’t get out of the bathroom.”  • M: “Do you have to stay at home sometimes or stay in bed?” P: “Yes.”
Stopping or missing work	• “I just had one time at a meeting when I was in my 20’s, where I sat and I couldn’t sit. I just couldn’t and they told me I could go home.”
Going to the emergency room/hospital	• “I was rushed to the ER by my wife and they couldn’t, they gave me what, morphine? Sure, morphine. And let me out; 3 days back again came back. In a period of 1 month, I went to the ER like 5 times.”
Mental impact
Irritability	• “And so not only, you’re tired during the day, you’re probably irritable.”
Heightened emotion/ anger/ frustration	• “When everything’s working right, you can tolerate more a little bit but when it’s not working right […] you literally don’t care anymore or you care too much. And I think it becomes a tolerance level. In that situation, everything is bad and it’s no longer a matter of on a scale of 1 to 10 it’s a 2 and you’re going along. Pretty soon it’s a 6 or an 8, but it’s not really there, but that’s the way you feel about it. It takes over your life.”  • “So I try something thinking, hey maybe this is going to work. And then I’ll have a really bad 2 weeks. And I get angry and say, I’m not following that diet anymore.”  • “so the doctor has unfortunately given up on me… My last visit, they told me that they cannot do anything more”
Depression	• I lived through hell and I thought of suicide because there’s nothing that would stop the pain, nothing would stop the urination. I became mentally very upset.”  • “P1: But other days […] you just don’t want to put up with it anymore.  P2: Yeah, I wanted to die.”

The influence of flares was largely determined by symptom severity. For milder flares, participants were able to continue their regular activities and even explained that these activities provided distraction from their symptoms. With more severe flares, symptoms forced men to stay in the bathroom, or made it impossible to meet work duties, especially if medications to control flare symptoms contributed to the immediate impact by causing drowsiness.

Beyond the physical impact of severe flares, participants reported a mental and emotional impact on themselves and others: “if I eat…I know the rest of the day is going to be bad”. Participants clarified that their irritability and fatigue during a flare negatively affected those around them.

Long-term impact of flares and UCCPS

Many participants made lifestyle changes because of flares and the resulting limitations. Men altered their diets, exercise routines and travel to prevent or ameliorate flares (Table 5). A trend noted in the responses that men became increasingly aware of anything that might provoke or increase heightened awareness of genital and pelvic pain: “My whole life I’m waiting for the next one [flare]”. This creates decreased investment in social and sexual interactions, which in turn created stress on present relationships or any attempts to establish new intimate relationships. Men reported lost productivity, emergency room and medical clinic visits, and the cost to their social relationships or work and social roles.

Table 5:

Longer-term impact of flares and symptoms in general for male urologic chronic pelvic pain syndrome (UCPPS) focus group participants, Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network

Domains of impact	Examples of Long-term impact
Travel	• “I have a milk carton in my car.”  • “There are times I can drive 350–400 miles almost nonstop. And there are times, every stop.”  • “You get to where you take along an extra pair of underwear and an extra pair of pants”
Clothing	• “I wear very spandex, loose fitting pants now.”  • “I don’t like wearing tight pants.”
Diet	• “Avoiding caffeine helps a lot, avoid really spicy foods helps and certain kinds of alcohol.”  • “I just have to force myself not to consume many liquids of any kind after 6 o’clock.”  • “when I drink that soda, it’s my fault. But there have been times like I have felt good for 2 months so I thought, I’m going to try that pizza now and see if I could… you’ve gotta experiment a little bit because he says it will change.”
Voiding habits	• “I go to the toilet and take my time. Sit down and relax.”  • “And I quit standing up years ago. Well, about 3 years ago. I just sit down on the commode; I don’t, there’s not an issue at our house with leaving the lid up; that doesn’t happen.”
Physical activity	• “I don’t bike ride anymore because that aggravates it.”  • “I loved biking. That’s one of the things I had to give up.”  • “I would go walk 45 minutes you know a few days a week. Around the neighborhood. And I couldn’t get through 45 minutes without needing to urinate. And so I had to scope out places along the route; it turns out XX Golf Course is on the route and so I know where there are bushes on XX Golf Course.”  • “I ride a bike a lot and the first thing that goes through my brain is, you know where are the bathrooms going to be.”
Sexual activity	• “I think being less likely to initiate sex too. Not knowing whether it was going to work or not.”  • “I have no desire for sex anymore. It’s extremely unpleasant.”
Medication side effects	• “I found that when I first started taking Amitriptyline, man it would knock you out; I mean it would just really perfect sleep aid.”  • “I have a low tolerance to medicine. And so when I’ve tried them, all they do is make me sleepy, so the only ones I’ve stuck with is ibuprofen.”  • “Dealing with you know the weird side effects of some of these medications, so you end up having dry orgasms which are weird and incredibly unpleasant feeling.”
Reduced social plans	• “You know when it was bad, I would usually not be scheduling things too far in advance if I knew it’d be something where I’m going to have to go for a while where I wouldn’t be able to use the restroom, you know stuff like that.”
Avoiding new relationships, and marital and relationship strain	• “And we don’t [have sex] other than when she initiates and she even knows that I don’t like it. You know and that’s a constant bit of strain. And that causes stress. Among the other things, many things.”  • “Well I’m divorced now. And this has been a lot of stress. A lot of stress and while it wasn’t the, kind of the single factor, it was one of several that really kind of broke that relationship. It’s hard to be married to someone I think who’s in, and constantly managing chronic discomfort. It exhausted a certain amount of patience because they’re, you know every time we would think we would have something, you know okay, well we’re going to try this combination and it would be really promising for a couple of weeks.”
Reduced career and educational advancement, and loss of employment	• “I can no longer work. I was a software engineer. I was college educated; I was making 6 figures but I had to sit in a chair. For at least 14–16 hours a day. And drinking all that caffeine. I just had a doctor tell me, he goes, you know I’ve got a feeling that your occupation along with your caffeine intake and other bad foods. Probably caused the infection. And then it just never got treated properly right away.”  • “All of 2011 was just pretty, you know pretty bad for me. I was pretty useless you know at work. I just wasn’t nearly as productive as I normally would be.”
Anxiety/concern for the future	• “For me, I always find I’m waiting for the next [flare]. My whole life I’m waiting for the next one.”  • “And since January, it’s, the average has gone from a 5 to a 6.5. I don’t know if it’ll get ever worse than that. But that was no meds. But that’s the average so it’s overall getting worse. Which has me worried.”  • “And since I worked my way to prosperity in my life, if I crumble with my illness, all the prosperity that I gained in my life is going to break… So the fear of going back to poverty due to this illness all was in my brain.”
Mental health	• “It affects, you start thinking about that instead of the pleasure of going for a walk or going for a trip. Maybe going out and hitting a few golf balls or going and catching a fish or whatever you do. Or my son and I talked about that and he and I, he said, he’s grown now. Youngest son, he’s grown, he’s on his own but he still fishes a lot and I tell him the same one I used to give him about fishing out of a small boat. Sooner or later you hang over the rear of the boat to go pee and you’re going to go swimming and if it’s the wrong situation, you may be drowned.”  • “I was very slim throughout, weight, exercise, very built, never went to the hospital, never had any major illness. So this was a complete turning point and broke me completely. So I ended up finally in the mental illness, what do you call, psychiatric.”  • “I think the reason I had psychological issue is because, it was partially my age because I refused to accept the disease. I refused to take it into my heart and say that because when doctors said to me that there is no cure, I didn’t believe the medical world that there could be something that they cannot cure.”

Travel and social plans were changed, as was and frequency of sexual activity to accommodate their symptoms, to better manage and control their condition and prevent flares. Review of participants’ comments suggested a theme of adjustment to a routine: knowing where bathrooms are when running or cycling, accommodating frequent bathroom breaks and taking a longer time when urinating, adjusting their diets, and increased body awareness to accommodate their new normal: “when I exercise too hard, then kind of the capacity to keep it in the background is lost and it’s more pronounced”.

The emotional impact of flares on participants included anxiety in anticipation of future symptoms, and frustration or self-blame over current symptoms: “I feel like it’s something I could have prevented if I you know had been more diligent.”. For one participant, flare symptoms were so severe that he considered suicide, which necessitated hospitalization.

Despite the considerable negative impact of UCPPS symptoms reported by the focus group participants, there was evidence of considerable resilience: “I still do what I want to do. I still hike”; “I’ve done half marathons which are 2–2 ½ hours and that is rather uncomfortable when I’m done”; “once I start doing yoga…I become a transformed individual”. One participant decided to see the illness “as a gift that God gave me because he wants me to discover the inner strength that I have. I feel that today I can handle stress much, much better than anybody else”.

Interactions with the Healthcare System

Participants expressed frustration that the healthcare system as a whole had no definitive answers or definitive treatments that might address UCPPS at its cause, and there was a trend among some participants to feel they had been abandoned by their healthcare providers: “My last visit, they told me that they cannot do anything more” and “I mean it’s hard to believe that we would have … fast forwarded 10 years and not really have this figured out.” The perceived lack of support from medical professionals contributed to feeling dismissed. At least one participant was told his symptoms were psychosomatic, stating “until 7 years ago, I was told it was all in my head. I was way too young with these kinds of complaints and you know no doctor understood what to be looking” for.

Masculine Cost of UCPPS

Several comments were unique to the presentation of UCPPS in men: “…I have to keep wanting to adjust myself”, “I don’t use the urinal so much anymore”. There is evidence of the impact on their sense of self: “If that comes back when I’m in … a more high pressure kind of a situation, I do worry that that could be something that could affect…my performance” and “I was a very successful person in my life before this”.

Avoidance or limitation of sexual activity was reported to have cause strain in at least one participant’s intimate relationship: “It would be very difficult to have sex if you’re in that much pain. That is, it’s particularly hard to kind of try to initiate that too. Because it takes so much concentration to cancel out the pain”. The impact of medications on sexual activity could also act as a deterrent: “dealing with … the weird side effects of some of these medications, so you end up having dry orgasms which are weird and incredibly unpleasant feeling.”

UCCPS has contributed to a sense of powerlessness and limited the social role of many of these men, while leading to self-isolating behaviors that limits both social and sexual contacts, independent of age or time since diagnosis or symptom onset.

DISCUSSION

This discussion of flare triggers and related symptoms supports previous work that guides the contemporary evaluation and treatment of men with UCPPS^13,19–25. Participants in the MAPP focus groups described a wide range of symptom exacerbations, with a significant degree of distress expressed over urinary symptoms in addition to their pain. Flares were described as minor changes from their baseline with UCPPS to events that were debilitating and have resulted in cessation of activity and resulting bedrest.

The previous report from the MAPP data that focused on women³ provided insight to UCPPS flares as wide-ranging intensity and duration, and variability in symptom presentation and impact, despite the same UCPPS diagnosis. This created insidious impacts throughout their life, occupation and social sphere, stemming from the often-unpredictable nature of the flares, and influenced the choice of social activities and ability to travel.

This pattern of wide variability with UCPPS flares was also noted among men, and supports a similar wide-ranging and insidious flare impact as that seen with women. However, whereas women tended to talk about pelvic/bladder/urethral pain during flares, men talked more about genital pain and were specific about its location – penis, testicles, and anus. Individual flares among men were shorter-lived, with fewer distinct dietary triggers, in this particular population of men than has been previously documented with women¹⁹. Flares associated with sexual activity are consistent with the findings of previous studies^13,25. Similar to our findings, Hedelin and Jonsson⁶ found that ejaculation could be painful for some men, but could relieve symptoms for others. These ejaculatory pain differences may predict distinct phenotypes with different responses to therapy.

There are novel symptoms men reported during flares that deserve mention. Men described non-pelvic symptoms (gastrointestinal symptoms, migraines, rheumatological symptoms) that they felt were associated with their baseline pelvic symptoms or distinctly associated with flares. Skipping or missed medications contributed to flares, suggesting the need to seek treatment or contact a provider during flares, and a rationale for preemptively discussing flare management with UCPPS as a method to both decrease anxiety and improve quality of life. It also highlights the value of managing patient expectations for treatment success during flares, contributing to long-term success with UCPPS management. Many men drew an association between stress and/or anxiety and both flare and baseline pelvic pain symptoms, consistent with what previous others have called a “feedback loop of pelvic pain, anxiety and increased pelvic tone”²⁶ implying a role for multidisciplinary input into treatment plans.

In addition, given the overall small body of qualitative literature to date in men⁶ our report of these focus groups provides the opportunity to expand our understanding of the lived experience of men with UCPPS more broadly.

Limitations

This analysis is limited by the small sample size and limited geographic distribution of the participant sites. Therefore, it is possible that some flare aspects/ characteristics were missed but would be captured with the inclusion of a larger group of participants and saturation was not achieved with this sample. Qualitative differences in responses of men with IC or UCPPS could not be established due to the small sample size. Finally, participant responses may have been influenced by their participation in the EP study, as some EP questionnaires refer to the term “flare” and assess possible flare triggers.

Conclusions

UCPPS remains poorly understood and contemporary treatment continues to be predominantly symptom-based. These MAPP focus groups help to identify a wide spectrum of flare experiences, as well short-term and long-term impacts of these flares. Analysis of these focus groups also suggests symptoms beyond urinary symptoms that may benefit from treatment, such as addressing anxiety and stress components, and supporting a role for multidisciplinary treatment for men with UCPPS, parallel to recommendations for women with UCPPS.

Data Availability Statement:

Data for this project may be available for review. Each request will be individually reviewed by the corresponding author, due to the small sample size and sensitive nature of the data.