Prostate cancer left me incontinent – we need sanitary bins in men's loos
As I was standing on the golfing green, I suddenly felt myself start to leak.
I quickly checked to ensure my pad was in place and no one could tell, then I made my excuses and headed to the bathroom.
That’s when I was hit with a dilemma. How do I change it when there is no bin? Do I wrap it in paper and put it in my pocket? Or hide it in my golf bag? I can’t flush it, so I was holding it while it was wet and left worrying – what do I do?
Running out of options, I wrapped it up and hid it in my golf bag to dispose of it when I got home.
Incidents like these have become my new normal since my surgery for prostate cancer in June 2008 – especially on the odd occasion I play golf or go for a run.
It’s why I want to talk about it openly because I believe there’s a huge taboo around men and incontinence. More needs to be done to support us.
At 50 years old, my doctor called me for my annual routine health check. Even though I had no symptoms, he requested a Prostate Specific Antigen (PSA) blood test – which helps to detect prostate cancer – because my age made me at higher risk of the disease.
Five days later, the GP called me to come back into the surgery as my test result was high. After taking a second one to make sure, he referred me to the hospital. That’s where – following a consultation and a biopsy – it was confirmed I had early-stage cancer.
This was difficult to hear, and I was totally devastated – especially because I had no symptoms. I learned later that this is normal during the early stages of the disease, so men must not wait before talking to their GP.
At the time, I was also just so thankful my doctor carried out the PSA test because otherwise it may not have been caught early while the disease was still treatable, and I would not be here today.
After discussing treatment options, I chose a radical prostatectomy, which means a removal of the prostate. Even though I knew there could be side effects – including incontinence – I felt I was making the right decision for me.
Post-surgery, I gradually started my recovery and had a catheter in place for four weeks. When a nurse removed it, I immediately experienced incontinence for the first time.
The leak was strong and unrelenting, which was traumatic. I was not prepared for the reality of my new life.
In the early weeks and months, I had to wear pads – supplied by my Health Trust – that were like large nappies, which made me very self-conscious. The first time I put one on, I felt uncomfortable .
I worried people could smell the urine, or that I would leak through them and onto my trousers. When changing, I also always ensured there was no one about.
But the whole experience left me lacking self-confidence and made me extremely reluctant to leave home. I just could not see an end to it.
Thankfully, with help from my incontinence nurse, as well as recovery advice from Prostate Cancer UK – who I became aware of after my surgery – the symptoms did ease. I really had to work on my recovery though, which included getting into the gym, strengthening my core and doing the all-important pelvic floor exercises to help me regain some control.
Over time, it has become second nature and all part of me getting used to living my new daily life.
I still wear a pad now – albeit a much smaller and more discreet one – but it’s good to see how far I’ve come. At the start of my journey, I was having to change them four or five times a day, but I am now down to one or two.
I am also confident in leaving home now – having got back into running and playing the odd game of golf – but I still face the daily struggle of finding facilities out and about where I can dispose of my pads easily, discreetly and with dignity.
And I am not alone.
New research from Prostate Cancer UK and phs Group – the largest hygiene services provider in the UK – has shown that over half (51%) of the 2,000 men they spoke to had experienced incontinence symptoms.
When they spoke to men like me who have incontinence, they found that 78% feel anxious leaving home due to a lack of facilities, 28% feel depressed about the deterioration of their lives, and 34% have resorted to asking a partner to put their pads in their handbag to take and dispose of them at home.
I have experienced these issues first-hand myself, as I continue to have to ask my (very understanding!) wife to carry a contingency in her handbag. This is difficult and can feel degrading, but without any proper facilities in men’s toilets, there is very little else you can do.
We need change, and we need it fast.
That is why I am proud to support Prostate Cancer UK and phs Group as they launch a new male incontinence bin through their ‘Dispose with Dignity’ campaign. We are calling for a national conversation about the provision of facilities for men and pushing for legislative changes to ensure all public facilities have hygiene bins for both genders.
To get the issue on the political agenda across the UK, I want men to send a letter to their MP – it only takes a minute (details on how to do that are below).
I also want to encourage men to speak openly about what it is like living with incontinence, and to seek support from their GP rather than suffering in silence.
Thankfully, I am now clear of cancer.
As I felt lucky to have caught it early, I decided to give back by becoming a volunteer with Prostate Cancer UK in Northern Ireland.
So I help raise awareness of the most common cancer in men by delivering talks, raising funds, hosting information stands and supporting men and their families.
As it is treatable if caught early, it is vital men know their risk.
That’s why I always encourage men to use Prostate Cancer UK’s 30 second online risk checker because it could save your life.
Visit Prostate Cancer UK’s incontinence campaigns page to send a letter to your MP now, and tell them that Boys need Bins too.
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