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You are not alone after prostate cancer surgery.
It can feel like it at times, whether you’re a man who’s gone through it, or a partner concerned about the future.
It’s especially difficult since people rarely talk openly about this topic. Unless they’ve been through it themselves people tend to just assume you’re either ‘back to normal’, or that your sex life has ended and that’s that.
It can also feel like your surgical team think the job is over once you’ve got the ‘all clear’ at follow up PSA tests. When it comes to erections and sex it’s common to get a response along the lines of ‘try viagra, see what happens, but don’t expect anything’ and then if that doesn’t work, you could try injections.
None of these responses reflect reality though. And it’s frustrating to feel like no one is taking it seriously.
An important part of your body (and for a lot of people, their identity and psyche) used to work in a specific and spontaneous way, and now it longer works at all. Like a tap that has suddenly been turned off, even though it feels like it should still work.
This will likely affect your world in ways you could not have possibly expected pre-surgery.
If you’re here you are likely finding ‘recovery’ beyond the continence and surgical side still quite elusive. If you tried viagra a few months after surgery and it didn’t do anything but give you a headache, it’s not surprising if you feel that erections are a thing of the past and that you’re just going to see if it comes back on it’s own but if it doesn’t then that’s that.
But the thing is, that’s not the whole story. There are more pieces to the puzzle that you deserve to know. There is a lot you can do to have a great sex life, possibly recover physical function, and feel confident in bed regardless of physical ‘performance’.
‘A Touchy Subject’ is here to say it like it is.
Frankly, erection recovery as a conversation topic feels elusive because it is.
This is a very young field of research. There isn’t a standardised protocol yet in the literature, and you’ll read a different stat for ‘time frame for erection recovery’ in every medical paper.
The more we study people who do and don’t get their erections back after surgery, the more we realise the recipe is complex and tricky to predict.
But, that doesn’t mean we don’t have some pretty good ideas about what can help.
In general, men who do something in terms of keeping erections going tend to do better than those who don’t. That’s why the catchphrase ‘if you don’t lose it, you use it’ gets bandied about.
There are many couple who have a sexual awakening after surgery, even without the physical function. Your sexual, sensual and intimate relationship does not have to depend on physical function.
Here’s the cherry on the cake you rarely hear… Sometimes men have better orgasms after prostate surgery. Yes, better. If the fact that you can have an orgasm without an erection or ejaculation has by itself just blown your mind, please read on.
Who runs ‘A Touchy Subject’?
I’m Victoria Cullen and I created A Touchy Subject in 2018.
I research sexual health products and practical lifestyle advice related to sudden sexual function changes. This is a fun topic that grants me quite the number of dinner party invitations, but I take it very seriously.
I co-founded the world’s first academic Design and Sexual Health course with Dr. Judith Glover at RMIT University in 2015. Featured on The BBC and The Age.
I am a PhD researcher at RMIT University focusing on how we can better deliver sexuality education related to life post-prostate to both patients and medical professionals.
I have an Undergraduate and Masters degree in Cognitive Psychology and Decision Making Sciences from University College London.
Professor Declan Murphy (Melbourne based urologist and director of Robotic Surgery at Peter MacCallum Center) includes an hour consultation with myself as a complementary part of his usual care treatment for all his private robotic Prostatectomy patients.
I am the sexuality device education and advisor pathway for Movember’s True North project.
I regularly give CPD accredited training on erection rehabilitation to GP practices in Melbourne (such as Doctors of Northcote, Prahran Market Clinic, and Deepdene Surgery).
How did you get involved in prostate cancer?
After running the course at RMIT it was clear that many people were seeking out design solutions to their sexual changes after medical interventions - but often their healthcare team and good old Google weren’t able to suggest products or interventions that would be effective for their exact situation, as well as fun and pleasurable. So, I set up a consultancy to match make sexuality solutions to specific health changes.
One of my first clients were a couple three months following a nerve sparring robotic radical prostatectomy (the surgical removal of the prostate using a robotic device intended to help preserve cavernous ‘erection’ nerve function).
They were distraught.
They hadn’t expected erectile dysfunction to mean there would be absolutely no physical response to arousal, or that nocturnal and morning erections would also be gone. They were saddened by other losses they weren’t expecting. The loss of spontaneity, the loss of penile length and girth. They were worried about whether incontinence might occur during sex. They were barely touching each other at all in case it led to more. They had been told nerve sparring meant the erections might return in a couple of years. But that was quite the long stretch of time, and what were they supposed to do if that didn’t happen?
I was also puzzled by the advice they’d received so far. They had been told to try Viagra and see what happened. But they tried it twice with no results (adding even more insult to injury). They had been told to try a ‘penis pump’ next. But the one they found at the local sex shop had caused more problems, specifically, an incident of 'testicle suck-up. A horrendous experience that I now know many more men with chronic ED experience with commercial pumps than anyone realises.
The Cancer Council estimates that over 100,000 men in Australia are currently suffering in silence with the unmet needs of sexual changes following prostate cancer treatment.
I simply could not get the confronting experience that so many couples and single men were going through out of my mind.
Since that consultation I have adapted my practice so that I now exclusively see people living in a post prostate world. I am conducting design-led PhD research to innovate how healthcare delivers sexual health information to prostatectomy patients. And it’s also led to A Touchy Subject. I wanted a place where continuous conversation and resources could live and grow.
Bio: Victoria Cullen
Victoria Cullen is a Sexual Function Specialist and PhD candidate at RMIT University. She obtained her Bachelors and Masters in Cognitive Psychology from University College London. She works with prostate cancer patients at a private oncology clinic, Cancer Specialists, in Melbourne Australia.
In 2015 she co-founded the world's first sex toy design course in an academic setting at RMIT University. This was featured in The Age and on The BBC.
In 2017, she partnered with Urology Surgeon, Professor Declan Murphy, to deliver a complementary consultation to all his private radical prostatectomy patients. This is the first time a surgeon in Australia has included sexology as part of usual care for his patients.
Victoria regularly speaks about sexual health delivery within healthcare. Her audiences include The Asia-Pacific Prostate Cancer Congress (2015, 2017, 2018), The Royal Melbourne, Peter Mac Cancer Center, The Urology Society of Australia and New Zealand Conference 2018, Independence Australia’s Education Day (2017, 2018). See her Twitter for recaps.