Why many men suffer with my condition in silence

    21 October 2020

    I was 24 and, during a few pints at my local, the sensation of a nail being hammered through the tip of my penis came on very suddenly. By the time I’d made it home to bed, I was passing water into an empty bottle every three seconds.

    Prostatitis affects men of any age but it’s most common in younger and middle-aged men, typically between 30 and 50. Up to half of all men may be affected by it at some stage in their lives. Though prostatitis accounts for a quarter of all urology consultations in Britain, it is a complicated and thus poorly understood disease. Because it has a range of common urological symptoms each person can be affected completely differently.

    It is an inflammation of the prostate gland and comes in a variety of forms from bacterial, asymptomatic, acute and chronic. The most common is chronic non-bacterial prostatitis often referred to as chronic pelvic pain syndrome (CPPS). The array of unpredictable symptoms are both extremely common and extremely debilitating.

    Though infection, stress and/or strain are often blamed, nobody really knows the cause.

    But what has changed since I first wrote here about my condition in 2016? The approach then was one of antibiotics, anti-inflammatories and alpha-blockers. The three As.

    Professor Richard Hindley is a consultant urologist at Hampshire Hospitals. He said: ‘I give a six-week course of antibiotics now whereas I used to give four. A newer option compared with five years ago might be to look at drugs like cialis. Drugs normally given to improve erections. The theory is that they improve drug flow to the penis but they may actually improve blood flow to the prostate as well.

    ‘It’s not in the British National Formulary that we would give cialis to men with prostatitis but an increasing number of urologists faced with someone who is just looking for solutions are desperate to try and give them something.

    ‘I think there is more awareness, because I think we’ve also found phones and social media, and it’s so easy to Google everything. There aren’t any major breakthroughs.’

    Joshua Jernigan, 40, from Chicago, is a member of one of the many prostatitis Facebook groups. This private group has more than 3,000 members and is growing daily. Many of the posts are personal updates and sufferers venting frustration at having to search alone for treatment.

    Joshua said: ‘I first noticed pain and then erectile dysfunction around September 2016. I’d just gotten home from working in the Rocky Mountains and I was very stressed. It was basically urethra burning and painful ejaculation. I thought I was allergic to a new soap or something. But then I was seeing a new girl and had erection problems also. I was just all around freaked out.

    ‘Most doctors – at least in the US – are clueless as to non-bacterial prostatitis. I went to four different urologists. You Google “it hurts when I pee” and freak out then go get tested. Of course, nothing was found after STI and bacterial tests so then of course [the approach was] let’s cure this nothing with antibiotics. For eight months I was on different antibiotics – ciprofloxacin, doxycycline, levofloxacin, bactrim – and ended up with C. diff because all my good bacteria were killed.

    ‘I spent years trying different things and buying this or that supplement. I’ve been to a few different types of physical therapists but none really helped. My doctor recommended I see a sex therapist since “nothing medically was wrong with me”.

    ‘In the end it was muscle tension. Figuring that it was probably muscles was lots of reading online. Lots of Facebook and Reddit forums. Then I went and saw a physical therapist and it all sounded really familiar. Awareness does seem a little more widespread now. The whole thing with a lot of doctors being clueless is really frustrating. If I can research I’m sure they can.’

    In 2011, when my symptoms first arrived, prostatitis was the main word used to describe the condition. Nowadays, many sufferers online insist the condition isn’t always related to the prostate, and that CPPS – even ‘male pelvic pain syndrome’ – is a far more accurate and thus less misleading name.

    Teresa Lynch, a specialist nurse at Prostate Cancer UK, said:

    ‘We receive a fairly stable number of calls about prostatitis yearly – approximately 250. The latest approach appears to be a move away from treating with ciprofloxacin for the long term, due to its side effects.

    ‘“Unknotting” pelvic muscles by regular pelvic floor exercises can be helpful for pelvic muscle discomfort. We know that – rather than anti-inflammatories – the use of other drugs, e.g. anti-epilepsy drugs can be helpful for the particular pain of prostatitis. Paracetamol remains useful.

    ‘Prostate massage does seem to be less employed these days. Some men find their symptoms can worsen following this intervention. We know that antibiotics can be useful even though no bacteria can be found. Longer courses of these drugs seem to be now more commonly understood and prescribed. The additional anti-inflammatory effect within antibiotics is recognised.

    ‘We still don’t know about causative factors. Unrelieved stress will exacerbate symptoms. Sometimes our callers ring with terrible upsurge in symptoms but while talking to them, often they will note that the symptoms, i.e. stinging, dragging pain, can suddenly disappear by the diversion.

    ‘Support networks (peer support) and talking to health professionals with time to give can be so helpful.’

    What works for me? Relief from being candid. Which is why I’ve started writing about the reality of living with prostatitis. To acknowledge the humour, the humiliation and the embarrassment of this absurd situation most men will find themselves in at some stage of their lives.