15 August 2021: 18 months after surgery, my prostate cancer ED recovery is like our late winter weather: unsettled, hopeful, up and down. For the last month or two I thought my erectile dysfunction was over but it’s not so solid after all. Here are some notes from the wobbly zone in my recovery roadmap. First the hopes from a month ago, then the wobbles, and finally where I turn to for emotional and spiritual resilience.
Maybe my ED is over?
My journal entry for 16 July 2021 was as follows:
I don’t really have serious ED any more. I get rock hard nocturnal erections again and in that half-awake state it felt like they “locked in” effortlessly. Something I haven’t had for 17 months. Recently I could stay hard for nearly ten minutes of penetrative sex. Self pleasuring has been feeling easy.
I had to write all this down because I still don’t feel over the ED. It is all so uncertain and unreliable. The journal helps me be a bit more honest with myself.
Recovery: my sketch graph up to mid-July
That’s how I felt a month ago. And I want to celebrate some of my past milestones:
- Recognising my masculine identity is more than libido, and libido is more than sex
- Grateful for my partner
- Getting so much help from penile rehabilitation
- Recovering sexual inventiveness
- Re-losing my virginity aged 62
Also my gratitude for some amazing and deeply moving family connections and transformations over the last month. These have spanned generations, family lines and continents. They have taken up far more attention than my prostate cancer recovery, and are likely more important.
Fading, fluctuating, a bit more rubbery
After all that optimism about my prostate cancer ED recovery a month ago I’ve run the gamut of possible outcomes. From feeling old-style horny like a young man, to feeling distinctly droopy and withdrawn. Sometimes my old friend is making my underwear feel tight. And other times he feels rubbery and impervious to attention. It’s a lot like our southern hemisphere August highveld weather: late winter, blustery winds, icy cold one day and warm and promising the next.
Ringing in my ears are the angry voices of so many men I meet on prostate cancer support groups. “I was butchered” screams one. “I’ve lost my manhood – and my wife – forever” moans another. “My man no longer even looks at me with love, let alone touching me” weeps an abandoned partner.
The fear sometimes rises in me. Maybe I won’t get any better than this. For the last month I have actually gotten worse.
Although even at the worst times, I am pretty confident my wife and I can continue loving each other as our bodies change. Nonetheless, it’s 18 months since my radical prostatectomy and that 2-year recovery limit feels scarily close. Maybe the experts are a bit glib when they say “nearly all men … will see a substantial improvement”
Perhaps these are the hardest yards – being a year and a half into “recovery” but still being deeply uncertain about what kind of life and body I am recovering into.
Friends and nature give wisdom and support
Yesterday my mood sank after my lovely weekly pottery class. What seemed to help is to acknowledge the power of that low mood, and stay with it till it is over. I am planning a dinner with friends this weekend and preparing for that gives me a lift. Spending time outdoors helps me feel the support and resilience of the trees and the sky.
Photo by Isaac Chou on Unsplash
Wild geese fly across the page of my journal as I write these words. And I am grateful for the energy that springs up in me after I acknowledge my despair.
I read your comments and genuinely feel pleased that your life is returning to some sort of normality.
You don’t say your age, this would be helpful to people like me, hanging on and praying my situation will improve.
I’m 69, and nearly a year on from my radical nerve sparing prostatectomy. Still no erections.
Still changing incontinence pads four or five times a day. Sort of given up any hope of life returning to normal now. Oh well I say to myself, I’m alive and have to see that as a positive. Just hope and pray my wife sees it this way. Getting very depressed these days about it all.
So sorry to hear your story Mike and thank you so much Mish for your wonderful diary and your extremely candid and helpful insights into your own journey.
I’m now 18 months post RARP – so lucky to be C free (so far!). Aged 62 at time of surgery – very fit and healthy and never any ED issue whatsoever pre surgery
Had bilateral nerve sparing with inter operative histology and negative margins. I’ve had absolutely no incontinence from day one but recovery from ED has been much more frustrating – it’s slow and often feels like two steps forward, one (or two) steps back.
I haven’t been quite as fortunate as Mish in getting rigid enough for extended penetration yet, but I remain optimistic I’m not far away. My “performance issues” are likely now much more psychological in fact.
I do think Mike, that after less than a year you are still pretty early in the journey, and shouldn’t be overly discouraged. Latest research I believe suggests improvement in continence as ED for up to four years post surgery.
I would strongly recommend kegels and to find someone who can give you real time ultrasound feedback so you know you are doing them correctly.
I’m also having some improvement with shock wave therapy. In my early recovery PDE5’s had no effect but I’m now back trying challenge doses of Tadalafil alongside daily 5mg cialis with some better results now after 18 months.
I’m in U.K. and post surgery follow up is woefully inadequate.
Resources like Mish’s have been a game changer for me in encouraging me to pursue recovery strategies aggressively and push for help.
The recovery period can be 3-4 years and thank you for your words. Very helpful for others to read. Let’s hope it continues to be onwards and upwards both physically and mentally. Penile injections work a dream in 95% of people. They are not as bad as they sound ????❤️????