CPPS: Positioning, telling, and performing a male illness

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CPPS: Positioning, telling, and performing a male illness

Post by webslave »

Interesting new paper. I have a copy of the full paper, will share with members soon

Positioning, telling, and performing a male illness: Chronic prostatitis/chronic pelvic pain syndrome
Nicholas Wood Annum Qureshi and Fahim Mughal
University of East London, UK
University of Hertfordshire, Hatfield, UK


Objectives.
There is a paucity of illness accounts of men with chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS), despite a significant level of prevalence and burden of disease. This qualitative study thus elicited twelve accounts from men suffering with CP/CPPS.

Methods.
Narrative analysis was employed, focusing primarily on narrative content.

Results. Three major narrative themes were identified: (1) Medical stories: Blame and shame; (2) The Erratic nature of CP/CPPS; and (3) Ongoing struggles for coping and cures and the Search for meaning.

Conclusions. Recommendations were made for health care providers and increasing the internal agency, support and activism of men with this debilitating condition.
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Re: CPPS: Positioning, telling, and performing a male illness

Post by webslave »

The introduction, a good (if medicalized) summary:
Chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS) is a chronic health condition affecting men of all ages with an estimated worldwide prevalence of between 2.7 and up to 16% (Krieger, Ross, 81 Riley, 2002; Marszalek et al., 2008). CP/CPPS is a debilitating syndrome characterized by persistent discomfort in the lower pelvic area including the bladder area, testicles, and penis. Symptoms can be severe and include painful and frequent urination as well as diffcult or painful ejaculation. The cause of the condition is unknown (Nickel, Berger, & Pontari, 2006).

Despite the significant prevalence of CP/CPPS, until relatively recently, there was a concerning lack of research. With current uncertainty around the aetiology of CP/CPPS, definitive effective treatment of the condition has yet to be determined (Dimitrakov, Kaplan, Kroenke, Jackson, & Freeman, 2006; Engeler et al., 2017).

One of the difficulties with CP/CPPS is that it is a diagnosis by exclusion; that is, there is an initial search for other medical possibilities that generate huge anxieties, such as (prostate) cancer. Although the past 10 years have seen a relative increase in the research into CP/CPPS (Nickel, Mullins, & Tripp, 2008; Nickel et al. , 2006), there is still a relative shortage of resources for men suffering from CP/CPPS, with the former British charity, Prostate Action (2010), referring to it as ‘the forgotten prostate disease’. As mentioned, CP/CPPS has a high prevalence rate, with a recent European study suggesting that it accounts for a quarter of all male urology consultations in the United Kingdom (Marszalek et a]. , 2008). Given treatment limitations, the first port of call is usually an antibiotic, even if there is no clear indication of a bacterial infection (Nickel et al., 2008).

One of the characteristics of CP/CPPS is that it appears to be a ‘heterogeneous’ condition; that is, it has unique and individual variations, even if there is some core degree of overlap which taps into the overall syndrome of CP/CPPS. The National Institutes of Health in the United States have classified CP/CPPS in the four categories below, with a ‘Chronic Prostatitis Symptom Index’ to assess severity and impact on functioning (Vasan, 2012):
I Acute Prostatitis <3 months
II Chronic bacterial prostatitis >3 months; infection identified
III CP/CPPS — no identified infection
IV Asymptomatic inflammatory prostatitis

Category III (CP/CPPS), with no identified infection, constitutes approximately 95% of all cases and is thus by far the most common ‘type’ of this syndrome and — given lack of certainty about an aetiological agent — appears to be similarly intractable to a variety of proposed therapeutic measures (Engeler et 511., 2017; Nickel et “1., 2008). The most current debate focuses on whether chronic prostatic inflammation is involved at all — or whether chronic muscular contractions in the pelvic region are the primary feature (Cohen, Gonzalez, & Goldstein, 2016).

Aetiological uncertainty, as well as limited effective therapeutic options, can have significant mental health sequelae as a result. There have been a considerable number of studies emerging which reveal a relationship between pain severity and depression in men with CP/CPPS (Clemens, Brown, Kozloff, 8; Calhoun, 2006; Krsmanovic et a1. , 20 14; Nickel et a]. , 2008; Tripp, Nickel Curtis, Landis, Wang, & Knauss, 2004). It has also been found that CP/CPPS can have a significant negative impact on the quality of life of patients; comparable to myocardial infarction, angina, Crohn’s disease, and diabetes mellitus (Wenninger, Heiman, Rothman, Berghuis, & Berger, 1996).

Regarding mental health corollaries, many men report feelings of depression, decreased social functioning and increased anxiety (Collins, 2003). Kwon and Chang (2013) have reviewed the literature linking depression with CP/CPPS, suggesting that depression can increase the severity of pain perceived by CP/CPPS sufferers. This point is further developed with reference to Tripp et all. (in Kwon & Chang, 201 3), who found that depressive symptoms can act as predictors of pain severity. It is concluded that depression may have a ‘profound long-term influence on the shaping of pain responses and pain outcomes [in CP/CPPS]’ (Kwon 81 Chang, 2013, p. 55; Harvard Medical School, 2014; Vasan, 2012). Krsmanovic et at. (2014) also argue that ‘catastrophizing’ or ‘expecting the worst’ impacts significantly on quality of life in men with CP/CPPS too, and managing anxiety can help significantly.

Nickel and Shoskes (20 10) explore the feasibility of a multimodal therapeutic approach to treatment of CP/CPPS. In their review, they report promising results from a treatment approach which assesses each patient on an individual basis and tailors treatment accordingly — the ‘UPOINT’ strategy — on the basis of identifying more specific clinical phenotypes amongst heterogeneous presentations, to allow more specific targeting of tailored treatments (UPOINT — Urinary, Psychosocial, Organ Specific, Infection, Neurologic/Systemic, Tenderness of Skeletal Muscles). This model is still in its infancy, however, and awaits ongoing studies to evaluate its construct and premises (Engeler et all. , 2017).

Minimal research has directly addressed the experiential impact of having this illness. Chronic prostatitis often involves an additional sexual dysfunction component beyond chronic pain, potentially exacerbating any concomitant relationship difficulties (Ginting, Tripp, & Curtis Nickel, 201 1). Furthermore, there may be accompanying (and potentially embarrassing) urinary symptoms, such as frequency and incontinence, which may fuel further sleep difficulties. These symptoms are loaded with potential masculine signifiers, raising the issue of how men manage chronic illness (Charmaz, 1994, 1995). The issue of ‘performed masculinities’ and the availability of alternative ways of ‘being a man’ are thus of direct relevance, as to how men experience illness — and associated disability (Gough 8: Robertson, 2010; Smith, 2013).

However, to date there has been one qualitative study of note into CP/CPPS — an interpretative phenomenological analysis of the experiences of chronic prostatitis sufferers (Ionsson & Hedelin, 2008). The five prominent experiential themes identified under the banner ‘living with a troublesome disease’ were as follows: (1) Need for repeated confirmation — disease not life-threatening nor leading inexorably towards cancer; (2) Disturbed sleep and fatigue; (3) Concealing pain and problems — ‘normalizing’; (4) Enduring pain by performing activities; and (5) Abrupt mood swings and limited sociality. However, this account covers current experiences and not meaning-making nor coping strategies over time.

The approach best suited to capture these critical features — which has importance for the development of coping ‘stories’ for clinician and sufferer alike — is a narrative one. This project thus aimed to pursue a narrative understanding of ‘survivors’ of chronic prostatitis — that is, people who are currently experiencing or have experienced significant symptomatology, looking at strategies they have employed to optimally manage their illness over time.
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Re: CPPS: Positioning, telling, and performing a male illness

Post by webslave »

I'll leave out the bulk of the text (contact me for a copy of the paper, or wait until it gets included at prostatitis-forum.com) and give the Recommendations:
Recommendations
Recommendations include the following:
  1. Educating medical doctors of the importance of the ‘illness story’, rather than the disease per se (Kleinman, 1988; Wood, 2015), as well as supporting the move towards ‘narrative medicine’, which involves attempts to harmonize medical and experiential accounts (King, 2014). This is similar to the call to understand varied cultural beliefs and experiences around illness, rather than just imposing a Western diagnostic medical framework, which may be incompatible and jarring to recipients — and end up unwittingly decreasing their access and engagement with services (Nwoye, 201 5). Narrative medicine is about understanding the illness story and the meaning of this for the patient, seeking to integrate this within a medical perspective (Charon, 2005).
  2. Given the difficulty around ‘understanding and controlling’ CP/CPPS, mindfulness approaches (and potentially acupuncture) in treatment may be particularly helpful (Qin, Wu, Zhou, & Liu, 2016). Men have spoken of the need to keep hope and to persevere with their lives as much as possible, making adjustments as needed that are helpful, such as keeping active and avoiding prolonged sitting (Khoury et al., 20 1 3). Furthermore, specifically tailored cognitive-behavioural therapy approaches may assist with the emotional difficulties, including depression and suicidal ideation, often concomitant with CP/CPPS (Nickel et al., 2008), and ‘acceptance’ approaches may also decrease the struggles with pain, illness, and ‘catastrophizing’ (Krsmanovic et a]. , 2014; Owen, 2013). Given the paucity of qualitative and psychological research into CP/CPPS, further research is obviously strongly encouraged.
  3. The use of male online support forums for CP/CPPS appears to be potentially helpful (e.g., Hanna 8; Gough, 2016; on ‘male infertility’), and contesting conventional masculine gender constraints and identifications may aid men in expressing the emotional burdens of their illness. Further detailed Internet-based research (e. g. , supportive online forums) may be useful, to help uncover the variety of stories and ‘positions’ that men with CP/CPPS (and varying sexual orientations) may both tell and adopt. With regard to the Internet, there also needs to be more research carried out into suitable sites for both support and reliable evidence, given poor-quality sites can exacerbate problematic ‘catastrophizing’ around this illness (Showghi & Williams, 2012).
  4. In future research, it may be helpful to seek out more extensive accounts from men who do indeed consider themselves to be ‘healed’, to further compare and contrast these findings.
  5. In the meantime however, we would argue that most crucially these stories need public space to be heard, given the fact that so little is known about this condition — and that what little is known is mired in shame and stigma. There needs to be a dissemination of these stories into the public as well as the private sphere — these voices need to be both heard and ‘legitimized’. It is only by providing a context in which these stories are felt safer to share that sharing will indeed take place. We are only at the beginning of what needs to become a ‘community of stories’ about the masculine experiences of CP/CPPS — and how both medicine and society need to shift to become a receptive ground for these stories, to validate private and often isolated suffering.
  6. For this to happen, perhaps a more ‘activist’ stance towards this ongoing research needs to be adopted (Murray & Poland, 2006), perhaps promoting positive media dissemination and developing policies. The Wider ‘ideological’ level of the context for these stories thus also needs to be both researched and addressed (Murray, 2000).
Regarding the 'poor quality sites' referenced above, I can think of several. :facepalm:
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Re: CPPS: Positioning, telling, and performing a male illness

Post by dshoskes »

Note that the description of the NIH classification is completely incorrect. If recommendation number 1 is the future of medicine, I'm taking early retirement.
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Re: CPPS: Positioning, telling, and performing a male illness

Post by webslave »

dshoskes wrote: Mon Aug 28, 2017 10:13 amNote that the description of the NIH classification is completely incorrect.

Lol, yes, I noticed, but I think it's a case of "near enough is good enough", for their purposes.
If recommendation number 1 is the future of medicine, I'm taking early retirement.
They're psychologists, which explains the recommendation. I think they are simply asking urologists to listen more. Uros will ignore the request, of course .. they don't have the time or interest.

Regarding the quote "given poor-quality sites can exacerbate problematic ‘catastrophizing’ around this illness (Showghi & Williams, 2012)", I looked up the paper referenced (Information about male chronic pelvic and urogenital pain on the internet: An evaluation of internet resources. Pain Medicine, 2012) and after reading it, wrote to one of the authors, Amanda Williams (Ph.D. Psychology), because this paragraph in her paper caught my attention:
It is somewhat concerning that Websites present out-of-date evidence, nor was it the case that those that declared medical authorship were also the most consistent with current pain science. The most widely described model of pain was that of stress/anxiety and pelvic floor muscle tension, both of which are more likely to be contributory, or consequential, than causal. There was considerably less on changes in the central nervous system [7,9]. Processes of central and peripheral sensitization affecting the urogenital and pelvic areas appear to be difficult concepts to convey, despite the possibilities for animated explanations. There was undue reliance on the more easily described phenomena of hyperalgesia and allodynia, although these are far from universal in pelvic and urogenital pain in men [9], and so can leave men feeling that their problem does not “match” that described.
While not necessarily agreeing with some of the assertions, I wanted to know, from her POV:
  • How can I update my site with what she sees as the most current pain science as regards UCPPS causality?
  • Where can I find the 'animated explanations' to which she refers?
She replied
Dear Mark

It's very good to hear from you, as your website is clearly much accessed.

The material explaining chronic pelvic pain is often written more for clinicians than for the public, so is not necessarily very helpful, and general explanations of chronic pain, which apply to some extent, tend sooner or later to refer to the back, or joints, etc. and then feel wrong to the person with pelvic pain. I've attached a good paper by Tracey & Bushnell that explains chronic pain anywhere in the body, and a couple of other papers that might be of interest if you haven't seen them. Ultimately, only writing several versions of explanations and then trying them out on men with chronic pelvic pain, and those close to them, will tell us what is helpful.

As for the animation, that was and still is a wish! Far too many websites (and I'm thinking mainly of musculoskeletal pain here) show anatomical diagrams and damage that only convey an unhelpful and inaccurate impression of what is wrong in chronic pain, or use red and visual effects to convey the experience of pain but without showing what's actually happening in the body. I still await a good and accurate explanation, aimed at the general public, and using animation such as is available on any smartphone or website.

Kind regards
Amanda
She attached papers:
  1. How to talk to someone with an “untreatable” lifelong condition, Nick Wood (suggests ways to help people with conditions that have no obvious treatment), BMJ Nov 2015 — same author as the paper cited at top of this thread, a CPPS patient himself
  2. Pelvic pain: a pathway for care developed for both men and women by the British Pain Society, British Journal of Anaesthesia 112 (3): 452–9 (2014)
  3. How Neuroimaging Studies Have Challenged Us to Rethink: Is Chronic Pain a Disease? Irene Tracey and M. Catherine Bushnell, The Journal of Pain, Vol 10, No 11 (November), 2009: pp 1113-1120

    I'll read, digest, and report back.
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Re: CPPS: Positioning, telling, and performing a male illness

Post by webslave »

BTW, I'll send you those papers just in case you have an interest ....
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