23 July 2020: Pelvic floor physiotherapy was the missing piece in my recovery puzzle after prostate cancer surgery. Because of systemic weaknesses in post-operative care, I got minimal practical guidance from my medical team. But now I am on track. Here’s what I have found so far, nearly 5 months after radical prostatectomy, and some of the milestones on my journey of discovery.

Distinguishing back, middle and front

It’s not enough to say “do your Kegels.” Our pelvic floor muscle system is rich and complex and until we have problems with it, it functions completely automatically and unconsciously. It includes at least three separate but interlinked muscle groups.

What matters most to prostate cancer survivors is to distinguish between, strengthen and gain control over these three:

  • At the front, there are muscles that support erections. You can partly access them by telling your brain to retract your penis, or by trying to twitch your penis upward in the shower without touching it. These muscles are the least obvious before surgery, because erectile function is mostly governed by complex parts of our non-conscious nervous system. Look out for a future post about the leading edge in physiotherapy for this area.
  • In the middle, there are muscles that support bladder control. You can become aware of them by stopping the flow of urine while peeing, but this is not enough for your rehab programme. More on this below.
  • At the back, the pelvic floor muscles surround the anus. You contract them when you try to stop a fart, and they move in remarkably complex ways during both defecation and anal sexual activity.

Why these pelvic floor muscles are important after prostate cancer

Your treatment for prostate cancer almost certainly damaged both urine control and erectile function. If you had radical prostatectomy surgery, you will have lost key valves (sphincters) that used to collaborate to keep your urine in your bladder until you consciously chose to release it. Now you have to retrain the one remaining sphincter to do the work alone: see here for diagram and details.

It’s not just that the nerves that control erectile function are likely damaged and in a condition called neuropraxia – a kind of nerve bruising that can take years to recover. There has also been quite a fundamental rewiring of the control system.

Comparing your nervous system and brain to an old-fashioned telephone exchange, it’s as if somebody ripped out a whole chunk of the connecting wires and threw away the original wiring diagram. Now some of the wires have been replaced but not in exactly the same way. And some loose connections are left dangling.

Building pelvic floor strength and muscle definition helps your brain make sense of this chaos. It takes weeks and months for the brain to relearn how to control your new body and its new wiring. It takes even longer to really automate the processes the way it was before the disruption. I’ve been told to expect at least a year. I’ve learned how pelvic floor physiotherapy helps my brain reassert control. And I know I need to keep up the exercises for the rest of my life.

What I got from my pelvic floor specialist physiotherapist

Today was my first visit to Hester van Aswegen, a Johannesburg specialist pelvic floor physiotherapist trained by (amongst others) the world-leading Dr Jo Milios. She explained what I have summarised above, with useful 3-D models to help me understand. Then she got me on her table and had me practice contracting, holding and relaxing each muscle group in turn, while she monitored and gave me feedback on my strength, precision and endurance. I was shocked how bad I was at these exercises! Particularly given that I am very fit overall.

I was a bit embarrassed about having a woman poking about in my groin area. The good news is that (a) Hester was wonderfully direct, matter of fact and no-nonsense while still being discreet about avoiding my most sensitive bits. And (b) it’s time to engage my courage for the sake of good health. I remind myself that the average woman has male gynaecologists probing much more intimately into their bodiesĀ  than this, and they are tough enough to handle it.

I couldn’t really learn this stuff alone (I tried). Today’s visit showed that I need expert feedback as I tense, hold and release each muscle group in turn. She pointed out where I unnecessarily tensed up thighs and belly. She helped me disentangle and feel the difference between the back, middle and front muscle groups in my pelvic floor. And she noticed where and when my muscle endurance was not up to scratch in these specialised areas.

Top resources for rehab and pelvic floor physiotherapy understanding

It’s hard to recover without understanding these parts of my body I didn’t even know existed before. My urologist and surgeon were unable to help me with practical rehab beyond the obligatory daily Cialis. So I kissed a lot of frogs while searching the internet for the princes and princesses who eventually helped me. It has been a 5 month journey – to find what should be offered to every prostate cancer survivor as routine post-operative information and care.

Here are the resources that turned out most helpful to me. Remember, they are good preparation and ongoing support, but not really a substitute for hands-on treatment by a good pelvic floor physiotherapist (physical therapist) in your area.

  • Jo Milios, PhD – probably the world’s leading physiotherapist in this field. Distinguished by her powerful research combined with extraordinary patient rapport. She really listens to the many prostate cancer survivors she has treated! I recommend you read, watch and listen to anything and everything you can find featuring her. Here’s a quick 2-minute video to start with, including her famous “nuts to guts” tip. And here’s a half-hour summary: outcomes of 6 years of very practical research into speeding up prostate surgery recovery. I just watched it and I am inspired.
  • Stuart Doorbar-Baptist – excellent video entitled Men’s Continence and Erectile Function After Prostate Cancer Surgery. Thanks to Greg in Australia for pointing me to this crucial milestone in my understanding. It’s a one-hour video packed with practical information.
  • Jeff Gibson – a pioneer in this field in the USA, and the first specialist in this field with whom I managed to get an (online) consultation.
  • Leslie Howard Pelvic floor yoga for men – a light and gentle foundation for this work, and you can download a good training video. Helps with underlying tension that otherwise works against your best rehab efforts.

Outlook and treatment plan

Coming back from my first physio session with Hester, I am singing in my car.

It’s beginning to feel as if I have a viable treatment plan: regular penile rehab and daily targeted pelvic floor exercises. There’s more, but this is a start. I am no longer feeling completely stymied by the doctor’s cryptic warning “use it or lose it.”