For almost two years, I experienced pains I did not tell friends about. Burning and stinging in your genital area don’t make for good dinner-party conversation.
But I’m now writing about it precisely because, as I found out, many men like me needlessly suffer in silence.
At the onset in mid-2016, urologists tested me for prostate cancer, an obvious concern for a male in his 50s. When this was ruled out, they sent me away.
Although no longer a matter of medical concern, my symptoms were very much still there. An aching penis, a sore rectum and an inflamed perineum were taking turns as affliction of the day.
It was overshadowing my life. Sitting was difficult. I could walk only slowly. Running, my exercise of choice, was out of the question. And sex loses its appeal when your nether regions are a source of suffering rather than fun.
Looking online for clues, I realised that I was not alone. “Chronic nonbacterial prostatitis” is by far the most common type of prostatitis (inflammation of the prostate). Also known as “chronic pelvic pain syndrome” (CPPS), it is estimated to affect about 8% of men at any one time.
Doctors don’t know what causes CPPS. I kept a diary to track the ups and downs of my pains and found no correlations with what I did, ate or drank. Treatment is equally elusive: antibiotics and inflammation drugs don’t work.
The NHS website offers scant hope: “The aim is to reduce symptoms to a level where they interfere less with day-to-day activities, rather than getting rid of the pain completely.”
I tried various tricks. I found hot baths soothing. Soft cushions made sitting bearable: I brought one to work, telling colleagues it was more comfortable.
But the prospect of spending the rest of my life managing pain was dispiriting. I got my first hopeful insight that autumn by reading a book by Tim Parks, a British writer living in Italy. Teach Us To Sit Still describes how Parks overcame an acute version of the syndrome through Vipassana meditation, or “mindfulness”.
This sounded kooky, but I was ready to listen to anyone who said CPPS was not a life sentence.
It helped that I identified with Parks. Like me, he’d settled in a foreign country that had given him a foreign culture and a wife to love; he lived largely through words; he was anxious and intense, prone to overreacting and internalising emotion; he did not believe in New Age healing, or any form of spirituality.
Thinking too much
Parks, after reading about a therapy for CPPS devised by US medics at Stanford University, had concluded that the pain was produced by tension: anxiety is often stored in muscles and pelvic musculature is particularly vulnerable as it is intertwined with nerves. The solution lay in calming a restless mind.
I decided to give meditation a go. Every morning I sat focusing on my breath for up to an hour. I did it both at home and on public transport. When you meditate you don’t care what people think.
Not caring is what meditation is about. Sounds, sensations, and ultimately your own thoughts, come to you free of judgement or context, like the helicopter noises and snatches of conversations that come and go in Pink Floyd tracks.
The same goes for pain. Instead of experiencing it directly, I observed the fact that I was someone who was hurting. The pain had become an object of compassion rather than raw distress. Over time, I noticed a reduction in its intensity and frequency.
The improvement was all the more remarkable because I remained concerned for some time that I might have cancer. Three months after a urologist gave me a clean bill of health, I went to see another one about my continuing symptoms.
When I told him about meditating, he was quick to reclaim my body for science. “Just because you and I have nervous personalities, it doesn’t mean there’s nothing wrong with us,” he said.
He pointed out that my Prostate Specific Antigen (PSA) count, a possible indicator of cancer, was high and rising. I had to undergo a biopsy, which involves inserting needles through your backside to collect cells from your prostate.
The procedure feels as barbaric as it sounds. The “discomfort” that doctors breezily warn you about can only be lessened with strong opiates. You urinate blood for weeks.
Then there was the wait for the results. Prostate cancer is often treatable, and online calculators put my chances of having it at only 15%. But being an unlucky roll of the dice away from any form of cancer was unnerving. I had visions of being made permanently impotent and incontinent by surgery.
But mindfulness helped me keep those fears in perspective. My pelvic pains continued to lessen both before and after I got the final all-clear.
Physical exercise was as important as the meditation. Swimming twice a week palpably relaxed my pelvic muscles. So did daily stretches – those that brought me the most relief more or less replicated Monty Python’s Ministry of Silly Walks sketch (John Cleese, a one-time prostatitis sufferer, may have got useful practice in advance).
Every patient, however, is different. CPPS does not lend itself to traditional, off-the-shelf medical treatment. Urologists can save your life if you have cancer, but are largely helpless when it comes to a little-understood, multifactor condition like CPPS.
“Many of them don’t like treating it,” says Jonathan Rees, a North Somerset-based GP who co-wrote the prostatitis guidelines for Prostate Cancer UK. “Urologists tend to dispense antibiotics and when people don’t get better they can run out of options.”
The best hope for patients, Dr Rees says, is finding a person, whether a GP or a pain specialist, with a special interest in the condition.
For me, that person was Karl, a sports massage therapist and former CPPS sufferer who runs a pelvic pain clinic in London. I sought him out because after 10 months, I felt my progress was too slow.
Mindfulness and medicine
It is not all “in the mind” – you cannot meditate away diabetes or kidney stones. But clinical trials have suggested that mindfulness has health benefits, including:
Over a year, Karl listened to me, devised specific stretches and, most importantly, changed the way I approached my symptoms. “The idea that you can control your pain makes some people freak out,” he told me. “But I find it liberating.”
He taught me to stop dwelling on what was wrong. Early on, he got me to ditch the cushion, which he said was focusing my mind back on the condition.
When I told Karl that my diary confirmed his method was working, he suggested that the pain chart was another security blanket to discard. My improvement continued, no less tangible for remaining unrecorded.
Last December, I had my first pain-free days in 18 months. Soon they became the norm.
Admittedly, there is no proof that a switch in mindset cured me. No-one has done a rigorous study on meditation as a treatment for CPPS. It is possible that I would have got better anyway. And it might not work for others.
But my path to healing is consistent with an emerging medical consensus about the link between mental stress and pain. Any form of chronic pain, Dr Rees points out, involves “central sensitisation”, where the brain becomes overly receptive to signals sent by nerves. The more you fear pain, the more you feel it.
Conversely, he says, being relaxed makes you less responsive to pain signals: “The mind is such a big factor in the way we respond to pain.”
Dr Rees finds it entirely possible that my mind went into overdrive following a prostate inflammation – as suggested by my PSA count – and that meditation slowly broke that vicious circle.
Leaving aside any therapeutic effects from meditation, I found it to be its own reward. Whenever a twinge comes, in the pelvic area or elsewhere, I now take a deep breath and regard it as something else to rise above.
The condition, in a strange way, has been a blessing. As I approach my 60s I feel better prepared for the inevitable bodily challenges of the years ahead.