Hello! I’m Victoria Cullen. I’m doing PhD research on how to get information about sexual rehab after prostate cancer treatment out of the literature and into helpful conversations.
I started ‘A Touchy Subject’ as a place to plonk videos, products and ponderings that I found on my journey.
That beast has evolved into a monthly webinar series where we pick expert brains in 30 minutes - it’s very good fun!
Why am I so interested in sex and prostate cancer?
Well, it all started in 2014 with a penis pump.
I was working one day a week at a sensuality boutique in Melbourne (think: classy sex shop). This gave me the privileged opportunity to have conversations with people about what they wanted their sex lives to be, and understand the barriers to this better.
It was sort of an undercover gig, by day I was working with corporate companies as a human-centred design consultant. I helped companies learn how to ask their customers better questions for deeper understanding of their real hopes, fears and struggles so they could improve their offerings quicker.
I love the process of getting to the heart of a problem. But I had also discovered after a stint of giving ‘3D printing sex toy’ workshops in Copenhagen that I loved learning about problems about sexual health in particular. Simply because there are so darn many! I found after my design workshops that a good non-judgemental conversation about sexuality can be healing in itself. And on a deeper level, I think we are only skimming the surface of understanding how important reducing stress, stigma and shame surrounding sexuality is for societal health and well-being
.. but I digress..
Back to the penis pump.
One day, a gentleman walked into store…
He was clutching the store’s business card in hand and had an ‘Alice through the looking glass’ expression on his face. He approached me and kindly requested advice on purchasing something for his difficulties after prostate cancer surgery. He had been sent by his urologist.
Honestly, I was slightly flummoxed. I had not considered the idea that prostate cancer surgery affected sexuality, but of course, it made sense that it would... why had I not read about this before? I apologised that I was not informed about the precise side effects of this treatment but if he was comfortable explaining his concerns and how they were affecting his life, I might be able to offer solutions.
His story almost left me in tears.
He explained how he no longer knew who he was. He had not been aware before surgery there would be such significant changes to his sex life, or how much these would affect him. They’d mentioned erectile dysfunction but he was just concerned with getting the cancer out, and he did not realise it would mean still feeling arousal but with zero physical response. He told me how the actual shape and size of his penis had changed. He was so nervous about not being able to ‘perform’ that he was avoiding holding hands or kissing his partner in case it led to more.
What struck me the most was he confided that I was the first person he had felt able to talk openly about all of this with. He had told his urologist about the ED only at his follow-up appointment and he’d given him a prescription for Viagra and the shop’s card. He’d tried the Viagra first, and it hadn’t worked. He was clearly anxious and putting a lot of hope in there being a solution here, whatever that might be.
My sex product design knowledge went as far as suggesting a ‘penis pump’ (the colloquial name for vacuum-operated devices, the medical version is ‘a vacuum erection device’). But even as I suggested it I felt it wasn’t enough or didn’t quite get the core of the problem. Commercial penis pumps are designed for men looking for temporary ‘enlargement’ rather than creating an erection in the case of chronic ED. I explained the option and again apologised for my current lack of understanding. I needed to research further to give him answers.
And research I did!
Over the next few weeks I read all the clinical literature I could get my hands. This was clearly a huge unmet problem. I used my human centred design process to interview men and their partners plus urology professionals to understand the role that sex products played in this space. I began to realise that while options existed, they were lacking in depth, understanding and acceptance within the medical community.
Sure, a pump can help, but not just any pump. It needs a tight enough ring, and the opening needs to be the right size, it should be easy to use for dexterity issues, easy to clean, no attachments so easy to travel with and use daily for rehabilitation. And less, well, ‘Austin Powers’ looking.
I started to give talks to healthcare professionals on the role of sexuality products in sexual recovery, on how to have conversations full of compassion to counteract the shame and stigma surrounding this important part of life. And I begin my PhD research in 2015 to discover better ways of delivering answers to the kind of questions and medical outcomes that can cause people to feel ‘no longer myself… no longer a good partner… no longer a man’.
My learning in this space has unfolded over the years into :
Consulting with people seeking sexuality solutions beyond pills and injections at Cancer Specialists in Richmond, Melbourne.
Professional speaking on sex products and prostate cancer at world renowned medical conferences such as the Asia Pacific Prostate Cancer Conference (2015, 2017, 2018).
A/Prof Declan Murphy includes my ‘post prostate surgery ED options’ consultation as a complementary service for all his private robotic prostatectomy patients.
The sexuality product referral pathway for Movember’s True North project in Australia.
Bio: Victoria Cullen
Victoria Cullen is a Sexual Function Specialist and PhD candidate. 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, A/Prof Declan Murphy, to deliver a complementary consultation to 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 speaks about how to improve sexual health delivery in a clinical setting. 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.