I am delighted to Welcome Sally Farrar, trainee clinical Psychologist at The University of East London. In this guest blog Sally outlines the psychological impact that Chronic Pelvic Pain Syndrome and Chronic Prostatitis (CPPS and CP) has on patients. Sally will be holding a series of in-depth interviews with men diagnosed with CPPS/CP for an upcoming research paper. For more details click here
Towards an Understanding of Men’s Experience of Chronic Pelvic Pain Syndrome/Chronic Prostatitis (CPPS/CP)
Towards an Understanding of Men’s Experience of Chronic Pelvic Pain Syndrome/Chronic Prostatitis (CPPS/CP)
My name is Sally and I am a Trainee Clinical Psychologist with the School of Psychology at the University of East London. I am studying for a doctorate in clinical psychology and as part of my studies I am conducting research into men’s experiences of chronic prostatitis, also known as chronic pelvic pain syndrome (CP/CPPS).
My interest in this area began when I met with a man who had been referred to me for psychological support. He had a diagnosis of CP/CPPS and in our only session together told me a little about how his life had changed since he had started experiencing this. I remember feeling struck by the challenges and distress that he spoke of in relation to his CP/CPPS symptoms, and in the process of getting help. I also felt shocked that I had never heard of this illness before given that research suggests it can affect men of all ages and is estimated to be prevalent in up to 16% of the adult male population (Krieger et al., 2008).
Since then I’ve had taken opportunities to look further into CP/CPPS and to hear from more people who have had experiences of CP/CPPS. My research is also being supervised by Dr Nick Wood (Clinical Psychologist and Senior Lecturer at the University of East London) who has conducted research into this area as well as spoken about his own experience of living with CP/CPPS (Wood, 2015; Wood, Qureshi & Mughal, 2017).
In this blog I will provide an overview of some of the current psychological research available.
Overview of Current Psychological Research on the impact Chronic Pelvic Pain Syndrome and Chronic Prostatitis has on sufferers
Chronic illnesses are documented to impose persistent interruption and interference into people’s life, forcing a disruption of assumptions and behaviours, and causing a re-evaluation of a person’s biography, self-concept and position within society (Bury, 1982; Morley, 2008). Chronic illness is therefore typically associated with considerable psychological and social change.
A number of studies have reported that men with CP/CPPS experience an impaired quality of life comparable to that of people with diabetes mellitus and congestive heart failure. It has also been reported that higher symptom severity, pain intensity and depressive symptoms are associated with a worse quality of life (McNaughton et al., 2001; Tripp et al, 2004).
An association with anxiety is also documented (Chung & Lin, 2013). Some studies report this is associated with ‘catastrophising’ which refers to negative and exaggerated anticipatory thoughts relating to symptoms and pain. Catastrophising has been linked to quality of life and pain intensity, with catastrophising (as well as depression and urinary symptoms) contributing towards overall level of pain (Riegel et al., 2014; Tripp et al. 2006).
In one study, with a large number of participants, men with CP/CPPS were found to be at a higher risk of developing depressive disorders, with the difference most pronounced in the younger group (those under 30 years old) (Chung, Huang & Lin, 2011). Similarly, a study by Ginting, Tripp and Nickel (2012) measured levels of depression and anxiety over a two-year period and found that this was increased in men with CP/CPPS and was stable over time. Some research has found that in particular men with CP/CPPS are likely to have experienced feelings of helplessness, which may suggest beliefs relating to low self-efficacy (Riegel et al., 2014; Tripp et al., 2006).
Research in this area has predominantly utilised questionnaires across a large number of men with CP/CPPS to provide quantifiable data, however this fails to provide more detailed accounts, from men, describing their experiences of CP/CPPS and what this has meant to them.
In my search to better understand men’s experiences I found only three pieces of qualitative research available (one of which included women’s experience of pelvic pain). This shows some overlap with the reports of impaired quality of life, anxiety and depression. It also indicates that men’s experiences were linked closely to social context for example taking efforts to conceal symptoms, feeling unable to talk about it, and self-isolating. Findings also suggest that distress was often exacerbated by the lack of clear cause or treatment as well as unsatisfying exchanges with medical professionals.
Jonsson and Hedelin (2008) carried out interviews with 10 men, and found 5 main themes:
- Men expressed a need for confirmation from healthcare contact, in particular wanting to be taken seriously and to have confirmation that the illness was not live threatening. Information was found to have a reassuring effect and make it easier to accept the illness.
- There was a common complaint of disturbed sleep and disabling fatigue. This was described as negatively impacting functioning, and when paired with any additional problems the burden felt almost intolerable.
- Many of the participants reported that they took steps to conceal pain and symptoms. It was reported that this helped to maintain self-esteem but often led also to a more solitary and routine life.
- Pain was felt to give rise to abrupt mood swings and depression which impacted their social life with men often remaining isolated which can then impact self-confidence.
- Pain was described as interfering and making day-to-day tasks difficult. In particular pain was reported to be felt more intensely in boring tasks. Similarly, it was found, for some participants, performing different tasks and being active helped to reduce the intensity of pain.
Wood, Qureshi & Mughal (2017) conducted interviews/ written exchanges with 12 participants and found three major themes:
- Many men spoke of experiencing a lack of medical understanding and support, with a perception that the medical field was dismissing of the condition resulting in an unsatisfying treatment experience
- That the erratic nature of CP/CPPS can make it hard to grasp and manage the illness process, resulting in uncertainty and fear of relapse.
- There can be an ongoing struggle to cope due to a variety of factors including being overwhelmed, feeling unable to talk about it because of ‘being a man,’ and the constant search for a cure. Strategies that helped were continuing to be active, utilizing support, keeping some positive thinking about the future. Finding a meaning for the illness was also critical to make sense and provide purpose.
Hatchett et al. (2009) asked 47 participants to complete journals describing symptoms and how this impacted their home life, work life, and social life. This included men with CP/CPPS (49%) alongside women with bladder syndrome/interstitial cystitis (51%).
- They found that about half the participants described mood changes including irritability, frustration, anger and depression, and that this linked with a decreased enjoyment of their lives, limiting desire to be with others or enjoy activities that they had in the past, and impacting their sexual lives.
- Many patients write about limitations associated with symptoms that disrupted work and home life, leading to withdrawal and isolation from family, co-workers and friends. They also spoke more about the impact on intimate relationships due to pain associated with sex, and avoidance of sex. Feelings of sadness and guilt were described in relation to perceived limitations on their social life.
My Research Aims
Looking into the literature has highlighted a lack of research which documents and explores men’s accounts of living with CP/CPPS and what this has meant to them. In particular I noticed a gap in terms of thinking more about how men’s experiences may influence and be influenced by their relationships and social contexts.
Based on this my research aims to explore men’s experiences of living with CP/CPPS which I hope will be relevant in terms of raising awareness of men’s experiences, informing further research, and guiding more effective treatment and support for men with CP/CPPS.
At this point in time, questions guiding my research are:
- How has life changed for men with since having CP/CPPS?
- How has their experience of CP/CPPS influenced and been influenced by social contexts and relationships?
I will be joining the online CPPS/CP support group on Thursday 18th July for further discussion, and I am already recruiting participants for my research so if you are interested in participating or if you have any questions or feedback please contact me on U1725763@uel.ac.uk for further information.
Bury, M. (1982). Chronic illness as biographical disruption. Sociology of Health & Illness, 4(2), 167–182. https://doi.org/10.1111/1467-9566.ep11339939
Chung, S. D., Huang, C. C., & Lin, H. C. (2011). Chronic prostatitis and depressive disorder: A three year population-based study. Journal of Affective Disorders, 134(1–3), 404–409. https://doi.org/10.1016/j.jad.2011.05.046
Ginting, J. V, Tripp, D. A., & Nickel, C. J. (2011). Self-reported Spousal Support Modifies the Negative Impact of Pain on Disability in Men with Chronic Prostatitis/Chronic Pelvic Pain Syndrome. Urology, 78(5), 1136–1141. https://doi.org/10.1016/j.urology.2011.03.073
Hatchett, L., Pat Fitzgerald, M., Potts, J., Winder, A., Mickelberg, K., Barrell, T., & Kusek, J. W. (2009). Life impact of urologic pain syndromes. Journal of Health Psychology, 14(6), 741–750. https://doi.org/10.1177/1359105309338973
Jonsson, K., & Hedelin, H. (2008). Chronic abacterial prostatitis : Living with a troublesome disease affecting many aspects of life, (November 2007). https://doi.org/10.1080/00365590802223585
Krieger, J. N., Lee, S. W. H., Jeon, J., Cheah, P. Y., Liong, M. L., & Riley, D. E. (2008). Epidemiology of prostatitis. International Journal of Antimicrobial Agents, 31(SUPPL. 1), 85–90. https://doi.org/10.1016/j.ijantimicag.2007.08.028
McNaughton Collins, M., Pontari, M. A., O’Leary, M. P., Calhoun, E. A., Santanna, J., Landis, J. R., … Litwin, M. S. (2001). Quality of life is impaired in men with chronic prostatitis: The chronic prostatitis collaborative research network. Journal of General Internal Medicine, 16(10), 656–662. https://doi.org/10.1046/j.1525-1497.2001.01223.x
Morley, S. (2008). Psychology of pain. British Journal of Anaesthesia, 101(1), 25–31. https://doi.org/10.1093/bja/aen123
Tripp, D. A., Nickel, J. C., Landis, J. R., Yan, L. W., & Knauss, J. S. (2004). Predictors of quality of life and pain in chronic prostatitis/chronic pelvic pain syndrome: Findings from the National Institutes of Health Chronic Prostatitis Cohort Study. BJU International, 94(9), 1279–1282. https://doi.org/10.1111/j.1464-410X.2004.05157.x
Tripp, D. A., Nickel, J. C., Wang, Y., Litwin, M. S., McNaughton-Collins, M., Landis, J. R., … Kusek, J. W. (2006). Catastrophizing and Pain-Contingent Rest Predict Patient Adjustment in Men With Chronic Prostatitis/Chronic Pelvic Pain Syndrome. Journal of Pain, 7(10), 697–708. https://doi.org/10.1016/j.jpain.2006.03.006
Wood, N., Qureshi, A., & Mughal, F. (2017). Positioning, telling, and performing a male illness: Chronic prostatitis/chronic pelvic pain syndrome. British Journal of Health Psychology, 22(4), 904–919. https://doi.org/10.1111/bjhp.12261
Wood, N. (2015). How to talk to someone with an “untreatable” lifelong Condition. BMJ (Online), 351(November), 1–2. https://doi.org/10.1136/bmj.h5037