In this guest blog, Jim Peters, a veteran prostate cancer blogger we’ve met before, talks openly about his first experience of using injections to help him get an erection after prostate cancer surgery. Be prepared for graphic detail.
JIM: “Prostate cancer is nothing if not full of new experiences. In the last year I've had robot-assisted radical prostatectomy (surgery), radiotherapy and recently I've started hormone therapy. I'm currently awaiting more new and unwanted experiences – all possible side effects of hormone therapy, including my first hot flush and bigger boobs.
“But on the subject of making things bigger, since my prostate was removed, I've been taking tablets called Cialis to help keep my penis healthy – the doctors call it "penile rehabilitation". Prostate cancer surgery often causes nerve damage that can make it very difficult to get an erection and it turns out recovery from this is something you have to work at. In other words, if I don't use it, I'll lose it.
“I wish I'd known in my teens that it was essential for the health of my penis that it fill up with oxygenated blood as often as possible because I wouldn't have felt so sinful playing with it 24/7. Those were the days! Since my surgery no amount of playing has achieved an erection sufficient for sex, even with the help of the drugs and, to put it mildly, I'm gagging for it.
“So now I’m having yet another new experience. In an effort to get what I used to get naturally, I’ve been prescribed another treatment called Caverject. For the uninitiated, this is something you inject directly into your penis to get an erection. I went to the hospital for my first 20 microgram dose to be administered by a doctor and to be shown how to inject myself. Apparently the NHS won't provide someone to follow me around day and night on the off chance I'll get the urge.
I wouldn't call it pain, it was a sharp prick – no pun intended.
“I had been warned by a guy at my local support group, that there would be a very long needle, but that this one is not used to inject – so I didn't pass out when I saw it. Thankfully, the one that actually pierces the penis is much smaller.
The doctor explained everything to me and how to do it, but wouldn't let me inject myself first time. (I’d asked if I could because I thought it would be useful.) I'd read that it wouldn't hurt, but I suppose that depends on your pain threshold. I watched and felt it enter the flesh but I wouldn't call it pain. It was a sharp prick – no pun intended.
“I was told it would take 5-10 minutes for the erection to happen and that it'd last about an hour. The doctor was right about the first bit. Within 10 minutes my penis was back to its former glory, poised for action – something I hadn't seen for 14 months. I was feeling very pleased and couldn't wait to get home to make the most of it.
“Unfortunately the doctor got the second part a bit wrong. Far from lasting about an hour I still had a raging stiffy four hours later despite having taken full advantage of it.
“I phoned a mate who I got no sympathy from at all. He said I was never satisfied and that all I ever did was moan – moan when I couldn't get it up and moan when I couldn't get it down. Then I phoned my friend from the support group, who said he thought 20 micrograms was a lot – he’d been given a four microgram dose. He advised I get myself straight down to the hospital.
If ever the motto 'no pain, no gain' was applicable it must be when it's applied to the sex drive – certainly to mine
“That was when I called my Macmillan nurse as I'd also heard that an erection which lasted four hours could cause permanent damage. I told her there was a lot of pain in my privates and I was convinced the whole lot was about to explode and drop off. I also said that, at that point, I wouldn't have cared if they had, providing it stopped the pain. To give the nurse her due she remained professional and covered the mouthpiece while she laughed her head off. As painful as it was, I couldn't help but see the funny side. Neither could my partner.
“While it's true that the general advice is to go to A&E if you've had an erection that has lasted four hours or more, the nurse said that since my penis looked normal (whatever that is these days) and was not cold to the touch, I should first try a very brisk walk. If it was still erect after the walk and had been so for over five-and-a-half hours she said I should indeed get myself to A&E.
“At the five-and a-quarter hour mark, with 15 minutes to spare, I felt a distinct change down below. By five-and-a-half hours I could see and feel a big change. It seemed I would not have to endure another new experience this time.
“I have three Caverject doses left and while things are fresh in my mind, I'm wondering if I really want to chance using it again, but in my heart of hearts I'm pretty sure I will. If ever the motto 'no pain, no gain' was applicable it must be when it's applied to the sex drive – certainly to mine. A year ago I remember saying I'd never stick needles into my pride and joy. Now that I feel like I've taken a vow of celibacy for the last year my view has changed. Bring 'em on!”
We asked our Specialist Nurses how common this side effect is and what men can do about it. They said: “Although rare, all treatments for erection problems can cause a persistent and often painful erection. If this happens, try having sex or masturbating. Squatting, walking up and down the stairs or urinating may also help.
“Go to your local hospital accident and emergency (A&E) department if you have an erection that lasts more than four hours. Also make an appointment to see the doctor or nurse who prescribed you the treatment. They may suggest changing the dose or offer an alternative treatment for you to try.”
There are lots of treatments available for erection problems after prostate cancer surgery, as well as Caverject and Cialis. To find out more, read our toolkit fact sheet, Sex and prostate cancer.
You can also read more about Jim's prostate cancer experiences on his blog, Rant from the suburbs.
This guest blog comes from Change Delivery Manager, Steven Rowntree. He’s leading a project to make sure that men who have problems getting or keeping an erection after prostate cancer treatment – and by the way, that’s 76 per cent of men who experience treatment side effects - get the support they need to deal with it.