Simon Smith

"Prostatitis has affected my life massively"

Simon Smith was diagnosed with prostatitis in 2011 at the age of 24. By sharing his story, he hopes to raise awareness of this common condition and let other men know they are not alone.

“My symptoms kicked in while I was having a drink in the pub. I suddenly felt a very sharp, painful sensation in my penis and needed to pee immediately. The pain and the urgency got progressively worse over the course of the evening. By the time I got home, I was peeing into a bottle every 30 seconds.

“I pretty much stayed in my room for the next four days, alternating between my bed and the bathroom. I was at university at the time, so while my friends were out drinking, I was at home in agony, sitting in a hot bath trying to relax my pelvic muscles. But nothing was working.”

Simon went to his GP, who did an STI test. Finally, on the advice of his dad, he went to see a urologist. After a number of tests and scans, Simon was diagnosed with chronic prostatitis.

I didn’t know anything about prostatitis, I hadn’t met anyone who’d had it and I didn’t know what to do.

“When I was diagnosed I didn’t know anything about prostatitis. I was expecting to see a urologist, get some medication and that would be it. It didn’t sink in until a few months later that it probably wasn’t going away anytime soon.

“My symptoms were getting worse – I couldn’t get an erection and had pain in my lower back. It felt like I had a vice around my waist. At that point I was hammering all the medication I could. I was on three different antibiotics, four different painkillers – the list was long.

“Unfortunately, I think that’s very common for a lot of men in the beginning. I didn’t know anything about prostatitis, I hadn’t met anyone who’d had it and I didn’t know what to do.”

After he was diagnosed, Simon discovered both his brother and dad had prostatitis too. While his brother’s condition got better after a couple of months, Simon and his dad still have it.

“Prostatitis has affected my life massively – everything from sex, travel, work, eating. It’s your urinary system – it covers the whole gamut of life.

“I’m still dealing with the symptoms. But I’m no longer taking any antibiotics or painkillers – they just don’t work for me.

“I know stress makes it worse and I’ve tried meditation. Apart from that, I haven’t really tried anything too holistic – but I think that’s the way to go. I’ve spoken to men who’ve seen their biggest improvements through CBT (cognitive behavioural therapy).”

I think it’s important to keep talking about prostatitis. It’s a condition that can have a devastating effect on quality of life, but isn’t given the attention it deserves.

What has helped Simon is sharing his experiences with other men through his Facebook page, Confessions of a Prostatitis Sufferer.

“I wrote an article about prostatitis for The Spectator in 2016, and the blog and podcast came off the back of that. I was getting an email almost every week from men saying they could identify with what I’d written, and wishing there was more information out there. Since I started the blog, I’ve been getting more and more emails from men around the world.

“I think it’s important to keep talking about prostatitis. It’s a condition that can have a devastating effect on quality of life, but isn’t given the attention it deserves. After seeing a urologist, there’s not really a defined route to go down in terms of treatment. It means a lot of men are left to their own devices.

“Sharing my story has been a cathartic experience. I think the more open you are about prostatitis, the less likely you are to catastrophise or to avoid certain situations because you’re worried about what might happen. Talking about how you feel can help address some of that subconscious anxiety that comes with the condition. When people know what you’re going through, and why you’re feeling what you’re feeling, it takes a weight off your mind.”

If you have any concerns or questions about prostatitis you can contact Prostate Cancer UK’s Specialist Nurses on 0800 074 8383 or read our prostatitis health information here.