11 May 2020: I need more resources to support recovery from erectile dysfunction (ED) after my prostate cancer treatment. My surgeon told me “use it or lose it” but I don’t know how to find this erection to use!

I’ve been taking Cialis every day for months, and whatever it does in the background it has no impact on my erectile function. I asked my surgeon for help but (perhaps appropriately) his diamond focus is on the surgery. He seems less well informed about empowering patients to help with their own recovery.

I feel all scrunched up and need to find new inspiration.

Scrunched up: how it feels searching for resources supporting recovery from ED

All scrunched up: VW Beetle in Beijing shopping mall

After my passionate request for help last week, my surgeon came back saying “keep taking Cialis and contact the Prostate Cancer Foundation.” But when I go to their website, I find a few random articles and lots of marketing events. It doesn’t look like it is designed for me as a patient.

No help from urologist, no help from local prostate cancer foundation. Time for Google.

Yoga for the penis

By far the most helpful website I find is Victoria Cullen’s A Touchy Subject. She speaks in simple, direct language, telling it like it is. There are short, matter-of-fact videos and FAQs that are truly informative. I  burn the midnight oil and learn a lot about how my penis and erections work.

She also answers my question about “use it or lose it – how do I find my erection to use?”

It’s simple: buy a Vacuum Erection Device (VED) and use it to literally pump up an erection. This stretches and brings blood to the erectile tissue which otherwise atrophies after surgically-induced erectile dysfunction. I order her recommendation (Vacurect) immediately. For more about my experiences please see Penile rehabilitation part 1.

Widen your sexual imagination

Google also throws up a gazillion scholarly articles on resources supporting recovery from ED. I realise that a lot of the issue is adaptation: my body has changed, and it is up to me to adapt to my new normal.

My wife is fully on board. She reminds me that worries about ED are mainly a guy thing – she wants love and physical connection with me but it doesn’t have to involve erections.

One open-access scholarly article that really expands my brain is Richard Wassersug’s Men’s Sexual and Relational Adaptations to Erectile Dysfunction After Prostate Cancer Treatment(International Journal of Sexual Health, 2016). He and his colleagues write up scholarly research detailing what helps with

(a) recovery of erectile function;

(b) reframing sexual practices;

(c) the importance of partners;

(d) exploring anal sex;

(e) the use of masturbation.

The findings suggest that men should explore varied sexual options. Partners are also important in the overall recovery of men’s sexual lives.

The bottom line is – for me to get over this and for my marriage to get over this, we need to “reframe sexual practices” – get over mourning what has been lost, and rather find ways to be intimate and loving with the new body that I have now.

Talking to friends supports recovery from ED

I wish there was a local support group I can join. My first line was calling our local cancer association but my local nurse said all their support programmes are in disarray due to Covid-19 and she will call me back. I haven’t heard from her.

As I become more open about my condition, so I find out friends, neighbours and relatives who have been through the same thing. It is so common! Prostate cancer affects about one in seven men worldwide. I have been truly humbled by men who overcome the awkwardness to tell their stories.

Of all the men who so generously share their experiences, one stands out: my friend Andrew, who was one of the first to have robotic-assisted radical prostatectomy in Australia more than ten years ago. He offers deep empathy, unfailing positivity, and unflinching honesty about what is difficult. In many ways, he inspired this blog.

Andrew’s bottom line about adapting:

You will recover urinary continence – and actually recover ability to pee like a horse. You will also recover sexual function. The key difference will be that you are less goal oriented about sex.

I didn’t really know what he meant, but the signpost was clear. From now on, sex is about the whole experience of lovemaking, not the narrow pursuit of erections and orgasm. Maybe that’s not such a bad thing.

[Editor’s note1: Three months later, Andrew’s tip about giving up goal orientation began to make more sense. See the August 2020 post on erectionless sex for an emerging way forward]

{Editor’s note 2 (why penile rehab is important): Just found this article which states categorically that “2 months after RP, elastic fibers and smooth muscle cells were already significantly decreased whereas collagen content was significantly increased. These tissue alterations cause subsequent veno-occlusive dysfunction and consequently reduce the chance of long-term recovery of erectile function.” See here for more]