Don’t move without planning toilet stops all along the way
For that first year life was extremely tricky. Why? Whenever I left the house it was necessary to plot my route from public toilet to public toilet. With the benefit of hindsight, I should have done more research on the internet and been more forceful with finding treatment. I mostly felt isolated and just got on with my life and eventually went back to work in Angola.
Eventually the leaks reduced but never stopped completely. The risk of leaking was always in the back of my mind. I mostly wear jeans, so any leaks showed up easily. Also, there was this endless cycle of never trusting. So I’d go to empty far too often and prior to ever leaving home, always with the next toilet location in mind. I used pads and clamps whenever it seemed appropriate.
By about two or three years ago, I was good in the mornings at least. But most days I had leaks in the afternoons and evenings.
Global links open new options
Things began to change in 2021 when I restarted researching options. I came across Victoria Cullen’s website in Australia and had numerous discussions with her, following her advice on pelvic floor exercises. While doing these, I had the sense that these exercises, developed for women, were not wholly appropriate for men. We discussed this a lot. Victoria then pointed me in the direction of Mish and this Recovering Man blog and monthly support group.
And I got into action.
Tests showed my bladder working well, but I still had leaks after 7 years
About ten months ago I got fed up of waiting for the NHS and booked a urologist privately. He listened to my story, then suggested a uroflow test. This was carried out by a gaggle of young nurses (should I have been that lucky?) and the urologist. Very much to my surprise, the results showed my bladder working perfectly. No leaks, able to hold the full standard capacity 500ml, though with some discomfort. And no leaks when under strain, i.e. pushing down while being monitored on the computer screen. Perhaps I had been doing my Kegels wrong. The urologist then suggested that I see a pelvic floor physiotherapist.
In many ways this was a relief. It showed that not all was lost. I realised it came down to me to help myself. Nobody else was going to do this for me. The physiotherapist clearly demonstrated to me that it is not always wise to go your own way.
Pelvic floor physiotherapy taught me the correct way to do my Kegels
I had four appointments with the physiotherapist, spread over 6 week intervals. It clearly showed the difference of “doing the pelvic floor exercises” and doing them correctly. That is, squeezing the right muscles. She monitored this while holding her fingers in my anus. I had to learn to squeeze the front/middle part of the pelvic floor muscles, not the back. In my experience, the mental focus should be on “shortening the penis”. Not a comfortable thought for most men. But this is what worked for me so this is where my focus is. Also, the physiotherapist helped me to get a sense of the specific muscles being used when doing the exercise correctly. It’s not just about squeezing your butthole.
We could easily see the progress made with doing the pelvic floor exercises correctly, as I could hold the squeeze much stronger and for longer. The aim was to hold for 10 seconds and I could eventually hold the squeeze for 20 seconds.
My new dry life: finding the balance
How long to hold on before voiding the bladder? I think the issue is to find a balance. Experiencing leaks may well develop into voiding too frequently, “just in case.” This then may well weaken the remaining sphincter, so the leaks continue. So what I do, or try to do, when I feel the need to void is to wait a little longer. The interesting thing here is that I may feel the need, then get distracted and then realise an hour to two later that I had wanted to go.
I go to the gym 5 times a week and also had problems there with leaks. This has now mostly been resolved by squeezing before straining, i.e. lifting or putting pressure on the bladder.
I have also come across a video from an Australian physiotherapist who recommends sit-ups. I found that this is also very helpful for strengthening the pelvic floor.
About those rare leaks that still persist: I have the sense that this comes down to inadequate “mechanics”. What do I mean by this? When voiding and I come to the end, it is not really the end. There is always a residual volume in the urinary tract. Post-op I was told to press on the perineum several times to “shake out” any remaining fluid. I now understand that this is largely the key to avoid any leaks. This may also be referred to as double voiding? So, taking my time that all is “shaken out” or rather squeezed out avoids any dribbling.
Looking back eight years after prostate cancer treatment
Now, overall, I am good to go. I can look back on those years of isolation and putting up with ongoing leaks, thinking that I was the only one. Now I realise that prostate cancer is one of the most common cancers – and I can get help worldwide. Coming across Victoria Cullen was a huge relief. And the Recovering Men group is immensely helpful and supportive. A sense of humour helps.
Because, all being said and done, whatever shows up in life is just what it is. It’s down to us how we deal with adversities, though seeking help can be very useful.