An important feature in the informants’ overall experiences of confusion and frustration was interpreted as a theme. The struggle to grasp what the problem was, why it started and what could be done, was clear to the authors. This experience was reflected in the central theme Struggling to pin it down, with its four subthemes; Stressful events in life matter, The symptoms and their start, Is it over for me? - being worried & frustrated, and There’s a chance - about finding one’s own way.
Struggling to pin it down
Stressful events in life matter
Most informants experienced distress during the months prior to the start of symptoms, for some of them it was years of complicated personal history. These events were described as stressful times at work with highly stressful workload, worrisome health issues, pressing personal lives, or multiple stressful events both in professional and personal life colliding. One informant described a violent family background, which led to a situation marked by threats from his mother and stepfather the months leading up to his marriage, which is when the CPPS symptoms started.
“I grew up in a family where a lot of violence occurred between my parents. While talking to a Cognitive Behavioural Therapist during 4–5 months I remembered my mother used to hit me when I was little.” (Interview 6).
Stress at work was experienced by many informants, but also life-situations as a whole would cause stress;
“You know life. You have to perform, you have to do something with your life, your job /…/ we have to row the whole package together.” (Interview 7).
“I started a new job, worked far away, all week and slept there, and then had a long weekend at home. That job was pretty hectic, and it was a little hard at home. My partner and I both thought it was a little hard that we only met on the weekends, so I quit.” (Interview 8).
Experiences of several emotionally stressful events prior to the pelvic symptoms were described, for example, being in a bad relationship and simultaneously having a high load of stress, or the death of a parent, etc.;
“Both my parents passed away, I’m an only child. During this chaotic time and the fear of having Multiple Sclerosis I also had an incredibly high workload. My wife’s career took off, so it was a perfect storm, I had to take more responsibility at home.” (Interview 5).
“In my work as a journalist I’ve been exposed to threats, I’ve been persecuted and things like that, that was probably what caused post-traumatic stress during the Arab Spring.” (Interview 3).
One informant came to realise during the interview that around the same time as his CPPS symptoms started, his parents got divorced and he took on some extra responsibility for his teenaged little sister who was rebelling.
During these symptoms he thought he was just prone to being nervous. But the real disabling symptoms started at the age of 34 when there was increased stress at work, they had one small child and their second on the way;
“I think I felt a little abandoned then. Because when a woman is pregnant, she goes into her bubble. And it was different from the first time when it’s completely new and unexplored and so on, so that time it felt like I, as a man, got to participate in a different way. But I feel like it wasn’t like that the second time.” (Interview 10).
Despite the fact that two informants did not have a stressful life situation leading up to the start of pain, stress still affected their symptoms. One informant experienced more somatic symptoms, while the other informant noticed that now, being retired from work, other things would cause stress that didn’t affect him previously.
The symptoms and their start
The symptoms described by the informants included pain or tenderness in the pelvic region, most often in the perineum, sometimes in the groin, suprapubic and lower back, the penis and the testicles, under the scrotum, or cramp in the perineum. In some cases it was more of a tension in the lumbar region or lower stomach. Urgency, weak urine stream, pain while urinating or emptying the bowels, and difficulty emptying the bladder were associated symptoms. One informant reported bladder dysfunction;
“I can’t really feel; do I need to pee now or not, until it really feels like it is time, and I have to hurry to get to the toilet.” (Interview 5).
Intense urgency was the primary symptom in two cases, of which one had to take sleeping pills due to 24-hour symptoms. One informant reported that the symptoms mostly appeared at night, while during daytime he kept busy and didn’t really notice or think of it.
A few of the informants experienced pain during sexual orgasm or ejaculation, or pain after ejaculation when urinating, or discomfort during the erection. Other symptoms were pain while or after emptying the bowels, pain when emptying the bladder, or stiffness in the penis while flaccid.
A few of the informants could not recall exactly how the problems began as the symptoms started many years ago. For one informant, the symptoms slowly started during a vacation in London and for another informant, his previously mild symptoms got aggravated when his wife was pregnant with the second child. One informant suffered a trauma to the perineum;
“I was standing on a railing on my boat and lost my grip and slid down with one leg on each side and hit the railing hard. 80 cm down and stop against a hard railing.” (Interview 13).
And yet another informant’s symptoms of CPPS seemingly started due to a symptomatic stricture in the urethra and painful surgeries to remove it. The rest of the informants also had specific but different triggers that started the symptoms. The triggers all have the pelvic region in common. Three stories were related to exposure to cold, for example, biking 10–12 h per week in the garage at wintertime, wearing wet swim shorts and swimming after a run when it was cold in the lake. Another trigger was medication for ADHD, and yet a different trigger was sexual intercourse, at ejaculation,
“I collapsed from pain. My wife was completely terrified, and I was completely terrified. And then we were both terrified.” (Interview 6).
Another informant had a bad episode of lumbago, and his symptoms started after one month of being back at work sitting and driving a truck. Digestive issues were another trigger.
“It started very sudden. It was a normal day, I had some trouble with my stomach that day, I was a little constipated. So I was on the toilet several times during the day. Then in the evening I sat on the toilet and I really strained to empty. After that I had a weird feeling in my stomach, in the pelvic floor, almost out in the penis. And the feeling did not give.” (Interview 5).
Two of the informants experienced the start of pain after a Chlamydia infection, even though it was treated successfully.
Is it over for me? - being worried and frustrated
The informants described that their tendency to feel worried and stressed seemed connected with their personality traits. They mentioned frequent worry, anxiety, being hard on themselves, being an emotional or sensitive person, holding back emotions, perfectionism and having a very strong sense of duty. Most informants had to deal with a lot of negative emotions tied to the symptoms and the process of finding answers. Hopelessness, frustration, catastrophizing and helplessness were expressed, especially when not finding information about their symptoms or treatments that would help. They described that there was very little information and guidance, which made them feel lonely. A lot of worry and fear was triggered in this process;
“I thought it was cancer, something serious.” (Interview 6).
“Worry took over everyday life.” (Interview 3).
Fear of making it worse by eating strong food, drinking alcohol and feeling limited in general was mentioned. Frustration and hopelessness came across as an important part of their story and experience of CPPS. One informant mentioned;
“The thought: Is it over for me now? Am I an old man now? Is this the end? It’s a very difficult thought.” (Interview 4).
Discouragement when the medicine didn’t work or when they could not find a solution was described in different ways, for example;
“When you notice that time goes on and you try different medications and so on but it doesn’t help, then it feels kind of hopeless. What is happening? Am I supposed to be like this forever?” (Interview 10).
Frustration of the uncertainty of when, where and how the pain started and persisted was also conveyed. Two informants expressed having had suicidal thoughts. Loneliness and shame was expressed by several informants as most of them did not have anyone to share these problems with and finding it a difficult subject to talk about, being a bit taboo.
Difficulty to talk about the symptoms also stemmed from the societal environment. Withdrawing from social life was a consequence expressed, and planning a social life was very difficult.
“Didn’t want to do anything either. You couldn’t hang out with friends, just sat and thought about it all the time. This pain you have. Nothing would be fun to do anyway.” (Interview 11).
“It’s stressful, you have to be on guard and kind of tense all the time, and it can affect how you behave and what you can do simply. Can’t get into anything, when it starts. One must constantly think; well, now it’s time, I have to get hold of a doctor here now, damn it’s Friday night, it’s not going to happen.” (Interview 9).
There is a chance - about finding one’s own way
When experiencing some relief of symptoms, the informants expressed that they regained hope of the condition getting better. They felt stronger and more motivated when, for example, having a pain free week and experiencing a normal life. Time also rendered some self-reflection and insight, which helped to understand oneself and factors that aggravated or alleviated the pain:
“I will handle it if it gets very tense, because I know what to do to calm it down. I think that I might not ever completely get rid of it, but that I can live a normal life and maybe go months without pain, or years.” (Interview 1).
Having strategies for self-care and multiple tools to work with was mentioned. Strategies that gave a sense of control was important, and so was the understanding of connections;
“I do the things I enjoy, instead of feelings of shame and anxiety. I think it has contributed to fewer relapses, or think less about it when I have relapses.” (Interview 2).
“I have a wand (an S-shaped plastic wand used for internal trigger point treatments, authors remark) on the way, it’s easier to be dependent on myself. /…/ It’s almost like finding one’s own way and planning one’s own treatment. It’s so very individual how you react, what’s good for you and what isn’t.” (Interview 3).
Changes to behaviour and routines were made;
“I gave up on the sexual ejaculation bit, which became a positive development. I enjoyed sexual intercourse without the need for ejaculation, enjoyment became focus.” (Interview 6).
Self-care factors that increase circulation were mentioned, examples include walks, meditation, exercises, stretching, swimming and sauna, alternating heat and cold, taking hot baths and massage. Mindfulness, healthy diet, talking with one’s family and spouse, physical activity, ejaculation, TENS (Transcutaneous electrical nerve stimulation) around the pelvic area and Percutaneous Nerve Stimulation were mentioned as helpful self-care treatments.
The helpful and unhelpful healthcare
To not be taken seriously
Several informants had bad experiences with healthcare. They felt overlooked, or as wasting the doctor’s time. They narrated about very short meetings with the doctor, or being sent home from the emergency department without seeing a doctor, feeling worried of not being thoroughly examined;
“He didn’t do a cystoscopy even though he mentioned it could be good to do that. He said he didn’t have time and he had to see many more patients.” (Interview 2).
Not being listened to was mentioned by the informant with the stricture in the urethra, as discussions regarding his CPPS with a doctor was for many years difficult. Receiving scarce information was also mentioned, for example, being handed a leaflet with general information about the syndrome.
When it took long to receive a diagnosis, the informants felt misled. For example, one informant was given treatment for constipation. Being unsure of the diagnosis was common and mentioned in different ways. A man who has had symptoms from the age of 34 stated that he was close to 50 when he saw a diagnosis in the journal. Others never really received a diagnosis.
“Nobody said that it’s 100% this, the diagnosis was probably a combination of several people’s statements.” (Interview 5).
Some informants expressed that they only got short instructions and prescriptions of medications, and sometimes information that the condition was beyond hope of getting better;
“The urologist made it worse for me, he basically said that this can’t be solved.” (Interview 1).
“I went to the urologist and he just said; stress less, have lots of sex and do not eat strong food.” (Interview 7).
Yet another informant shared that the doctor had said, in a frustrated manner, that this comes and goes, and that he had to put up with it. Most of the informants were not informed about different professional perspectives and treatments, but had to find their own way in the system.
“There’s like bulletproof glass between the urologists and the therapists, nobody mentioned or said anything about it.” (Interview 4).
Being seen in the well-functioning healthcare
The informants also reported positive healthcare experiences after being seen and confirmed in their health issues and symptoms, or being thoroughly examined and suggested potential treatments. One informant described a visit to the physiotherapist;
“She examined from the feet upwards, she scanned my whole body. /…/ I am very stiff and tense, which I think has also affected me.” (Interview 1).
Some informants declared that they were notified of the diagnosis within a few days by their doctors, which they appreciated. Receiving confirmation about the condition was a relief; even though they knew that it was far from over, it felt calming to receive the diagnosis.
“I was a little bit worried, but after the first examinations I wasn’t as worried at all. The general practitioner who had been at the urology department instilled confidence.” (Interview 5).
Having received a diagnosis made work life and sickness absence easier for one informant, who could then explain for his employer the reason to go to the healthcare centre. Another was never worried about his pain once the diagnosis was given and explained;
“I got a clear picture, this is something with the musculature, so it’s not something to do with, for example, some type of cancer or something like that.” (Interview 13).
Being referred by the doctor to specialised healthcare personnel and treatments were expressed in positive terms;
“We have a good physiotherapist who works with this kind of problem.” (Interview 3).
“I get a lot of help when I go to the urotherapist. Then you can also ventilate your stuff. You could say they almost become psychologists. And sometimes I also get tips from them.” (Interview 10).
Informants expressed the importance of being thoroughly interviewed and treated with dignity, respect and empathy, and to have a good conversation with the urologist was very important;
“One may not say masculine and feminine, but on one hand [with one of the doctors] tough and macho, and on the other hand with the female doctor and sexologist who were humble, and expressed: maybe you should try this.” (Interview 4).
“The difference was partly that it was a conversation, that it was possible to actually have a conversation about all my symptoms and my history, /…/where the pelvic floor pain problem is part of the whole picture and that I had the opportunity to ask questions to the doctor. And also that she was so accommodating and responsive.” (Interview 14).