Pelvic Pain Q&A Series
In this Pelvic Pain Q&A I welcome Dr Nicholas Wood. Nick is a clinical psychologist and senior lecturer at the University of East London. Nick is the author of a number of key research papers on the psychological impact of health and illness. And 2 in particular that heavily influence my practice – “Positioning, telling, and performing a male illness: Chronic prostatitis/chronic pelvic pain syndrome” and “How to talk to someone with an “untreatable” lifelong condition”
Nick is someone who knows pelvic pain both professionally and personally having first suffered with Prostatitis 24 years ago. This is Nicks open and honest Q&A:
Can you outline your interest in male pelvic pain?
My interest has a long personal history from July 1995, 24 years ago, when I had 6 weeks of acute but very painful prostatitis. I had to spend time off work and, after I returned, I mentioned to my boss what illness I had. A fellow employee overheard and whispered, ‘Don’t you get that illness from contact with prostitutes?’
I felt ashamed, and wanted to say: ‘obviously not, given my circumstances (happily married).’ But I did not speak up, as I was both irrationally ashamed AND confused, as to where my illness had come from – seemingly out of the blue, at the age of 34.
Investigations had revealed little, apart from some ‘calcification’ in the prostate gland, but this was common, I gathered, and not necessarily indicative of prostate disease.
Never mind, the doctor reassured me, that’s probably the last of it.
Hah! That was the last time I trusted the word of a medic!
In March 2009, the prostatitis returned, but this time in grinding, chronic form, which has continued almost unrelentingly across 10 years. (Apart from an 18-month bliss free period, half-way through, when I mistakenly thought I was ‘cured’.)
This time, though, I was determined not to be ashamed of it AND to try and get a proper ‘handle’ on it. That meant both talking about it – and studying it!
(At the time of the return of CP/CPPS I was Director of Research on the Doctoral Programme in Clinical Psychology at the University of Hertfordshire, and so pursued research into psychological factors in CP/CPPS, both on my own and with a number of Masters and eventually a Doctoral student (currently) at the University of East London.)
What psychological impact can pelvic pain have on patients – confidence, distress, anxiety, panic, hope etc?
The psychological toll CP/CPPS exacts is huge and varied.
I worked as a pain consultant in a couple of pain clinics over several years when working as a clinical psychologist, but nothing properly prepared me for the reality of managing my own chronic pelvic pain.
Sleepless nights and constant urination were an additional burden on a chronically uncomfortable and stressed system. So, after a couple of years, I made a disclosure to work about my condition and had an occupational health evaluation, whereby I was officially classified as ‘disabled’. Amitriptyline helped settle my bladder and sleep, although I moved on to other pain killers to avoid dry mouth.
The work disclosure enabled me to pursue a flexible working (from home as needed) policy, as well as a standing desk that could adjust to different levels, depending on my state of fatigue.
I went through a Pain Clinic at University College London Hospital (UCLH) as a patient, after several years of struggling on my own, and, over the long run – and exploring various psychological theories of pain – I’ve found the most helpful psychological model Acceptance and Commitment Therapy (ACT).
I’d kept pain diaries for months, trying to identify triggers that either exacerbated or improved the pain, all to frustratingly little avail. I have interviewed other men with CP/CPPS and remember one young man telling me he was moving through his list of possible ‘cures’ very slowly, as he did not want to get to the end and lose hope, if nothing helped!
So, over the years and through meeting and talking with others – including a group run by the Pelvic Pain Clinic – I have eventually found ways of managing and minimising the impact of pain, and simultaneously reducing my use of painkillers.
I learned early on that exercise (and physiotherapy) is good – and restricting motion for fear of making the pain worse, is bad. I’ve learned ways of ‘damping down’ the arousal in my system, which often comes with chronic pain, via meditation, mindfulness and full-body relaxation. One key break-through was to stop fearing the pain and catastrophising about what if things got worse or ‘unbearable’ – you only have to manage what is in front of you right now – and to praise yourself, for all that you have managed to survive to this point!
As for ACT, it has taught me that we can all still live valid and meaningful lives, despite CP/CPPS, by continuing to do what is meaningful and valuable in our lives. Acceptance is accepting (not fighting) what pain there is right now – and facing it, without distraction or squirming away – and Commitment is continuing to live our lives by the values we are constantly recommitting to – for me, that means my relationships, at home, and work and within my community.
How does pelvic pain effects relationships (personal, professional, intimate)?
Chronic pelvic pain threatens to reduce and restrict our relationships – if one feels shame, it’s hard to talk about, and this leads to a shrinking of our interpersonal world. For a while I stopped going out, for fear of losing bladder control in public, but bladder retraining and making myself go out helped – sitting near exits initially, in case toilet called!
Pain on ejaculation threatened erectile dysfunction and my sex life for a while, until I learned to find pleasure and not fear the accompanying pain (Edwards et al., 2019). Support from my partner has been invaluable throughout – as has the help of online conversations with fellow sufferers.
What changes the medical world needs to make to address male pelvic pain with greater success?
The medical world tends to avoid or minimise what it can’t yet fully understand or treat – which is CP/CPPS right now. Doctors and urologists need to listen and support more, as well as educate themselves and others about CP/CPPS. They also need to admit and face up to their own limitations in managing this. Furthermore, they should drive forward a strong research agenda to tackle CP/CPPS, in a more robust and concerted fashion.
I think we also need to find ways to bring our stories into the light of public awareness. For too long men have been expected by some to ‘suffer in silence’ – it’s time to challenge those outdated gender stereotypes and discourses and to find ways of educating the public and the medical profession about our stories and experiences. It’s time to speak out – without shame or fear!
We need our own Charity – Prostate Cancer UK is a cancer charity, at the end of the day – and burying CP/CPPS within it, only continues to hide it from everyone – and does not provide any real support for CP/CPPS.
Do you have any take homes for patients/health care providers suffering with or working with pelvic pain?
- Keep making contact – you are not alone!
- Speak up – be heard – and do not waste energy being ashamed. We have nothing to be ashamed of – and we are all stronger together!
- Keep active – and stay committed and hopeful!
- To those who do not know our experiences from the inside – listen, learn, and respect us.
(Nick Wood, November 2019)
Some Pelvic Pain references and resources:
Sarah Edwards, Anna Mandeville, Katrine Petersen, Julia Cambitzi, Amanda C de C Williams and Katherine Herron, (2019) ‘ReConnect’: a model for working with persistent pain patients on improving sexual relationships, British Journal of Pain. (June 10).
Thank you so much for helping me with this project Nick. It is greatly appreciated. I know many readers will find your input priceless