And then I posted this a week or so later ... maybe answers some of the things people wonder about but don't like to ask!
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I will own up that John and I did not have a brilliant love-life before diagnosis – fantastic when it happened but always fraught with tensions and not often enough for my liking. Looking back, that was probably to do with 6 pregnancies in 7 years resulting in 4 children under the age of 6 – maybe he just worked out what was causing it!! Then a houseful of children became teenagers and all their friends, then young adults – we used to say “once they’ve all left home ...” Unfortunately, John’s dx came just as the 4th child was going off to uni – crap timing.
Right from the off, J knew about the risk of ED – my dad had been relying on caverject for 9 years at that point and John’s dad had just made the decision to retain his sex life by refusing any treatment. When we saw Mr P, he was optimistic about nerve-sparing and happy to share his own stats with us but suggested that we delay the op, go off and have a nice holiday, ‘do the things that couples do’ just in case. John was reluctant to wait – he had the op 3 weeks later. He tells me now that even knowing about impotence, he never thought for a moment that it would affect him – he was only 50 and it must be something about old men, mustn’t it? He also says that when he came round after the op and Mr P told him that he had managed to save all the nerves on one side, J’s first thought was ‘that’ll be fine then’.
Here are some of the things they don’t tell you about ED:
No erections really means ‘no erections’ – It is reasonable to imagine that ED somehow means not being able to get it hard enough for penetration. In reality, it means never waking up with an involuntary erection, no ‘lazy lob’ while lounging on the sofa watching TV, no night-time / sleepy hard-on or embarrassing lap-covering when you see an attractive woman. J feels that this and the ‘dry’ orgasms has redefined him as a man.
Size matters – Post-op, many men find they have lost around an inch in length (depending on the length of the prostate gland removed and therefore the length of urethra also lost) and men with impaired erections as a result of RT or HT also lose some length. Partners are usually telling the truth when they say that size doesn’t matter as much as what you do with it, but a smaller penis does make some positions almost impossible. If these were the previously favourite positions, the resulting frustration / panic when it keeps ‘slipping out’ can bring an abrupt end to a beautiful moment.
The vacuum pump – there is nothing sexy about sitting on the edge of the bed with your willy in a plastic tube. However, for the men that can get on with it, the pump is an effective non-chemical solution that can be used whenever and wherever you please. No having to wait until 4 hours after you’ve eaten, no hanging around wondering whether it is going to work. Zoe (our ED nurse) has always been very specific about the value of the pump in keeping penile tissue healthy, by replicating the natural multiple erections that an impotent man has lost. I can tell whether J is feeling up or down by the state of his pump – in good times, it is used frequently but when he is going through a bad phase, it lies forlornly on the bedroom floor for weeks at a time. John has packed our pump for every holiday – including Greece, France and Gambia – but it has never been taken out of the suitcase. Oh, and if you are wondering … no, it doesn’t seem to get picked up in the airport security scans.
Caverject – J said he would never resort to an injection to have sex but had backtracked spectacularly by about 6 months post-op. We thought it would be the solution to everything – especially as my dad had been using it for 9 years without any problems (to be honest, I was traumatised by the news that he shared a room with his new lady-friend so the idea of him injecting seemed almost a side-issue). The first couple of injections went fine but after a 4am dash to A&E with priapism, new rules were developed in our house … J wouldn’t use it after 7pm so that waiting the obligatory 4 hours for it to wear off did not keep him up past normal bed time. He was also incensed that the GP was following NICE guidelines and limiting him to 4 injections per month – Zoe had been quite confident that, J being a ‘young’ man, his GP would probably be more generous. So, I collected the prescription every month, and we also got a script from Zoe each time we saw her. And the boxes of injections began to gather on the bookshelf, more and more of them, as unused as the pump. To complicate matters further, after the priapism the caverject was only successful maybe once out of every 3 attempts. Once again, panic / frustration / anger would mar the moment so he became less and less inclined to try any kind of sexual contact in case it went wrong …. a self-fulfilling prophecy, of course. Meanwhile, the unused injections piled up and I began to stuff unclaimed prescriptions into a tin in the kitchen.
Viagra – a magical little blue tablet that cures all the ills of the world, or not as the case may be. If you take it too soon after eating, it doesn’t work. If you take it too early, it wears off before you have got going. If you are feeling anxious or desperate for it to work this time, that’s pretty much a guarantee of failure. In J’s case, no go after 7pm (a hangover from the trip to A&E). So we have developed a strategy – he phones me around 4pm and tells me he is going to take one on his way home from work. He then goes to the gym while I decide whether to cook the tea or put on some nice undies. I guess what time he might get home, how long sex might last and therefore what time we will finally get round to eating. On a happy day when it all goes well, the erection can last upwards of 15 minutes but if anything goes wrong at all (I make the wrong noise or the phone rings) that’s it, gone. Bizarrely, J is still really irritated by the once-per-week limit of NICE, so has persuaded the GP to prescribe 8 tablets per month rather than 4 – most of these are also now collecting on the bookshelf next to the caverject. I have stopped collecting the monthly prescriptions until we have got through some of the existing stock.
Oral sex – J had his first non-erect dry orgasm the day the catheter came out (it's never to soon to start the rehab) and oral sex has been pretty important in the 3 years since, simply because it can be used to salvage almost any situation. BUT … it can be a bit of a problem with caverject, especially if the needle hits the urethra – the first time I got a mouthful I panicked (if it can do that to a penis what could it do to my tongue???). I assume it is not recommended with muse, and even for a man almost entirely continent, J is likely to ‘leak’ slightly at the crucial moment (which I have never told him as I suspect he would be mortified).
Impact of HT – Zoe was fantastic (she really has been as much a support to me as to John) and when J was at his lowest, reminded him that we could both give and receive pleasure without penetration. J will tell you that he never experienced a reduction in libido while on HT. My view is that his libido was already wrecked. The noticeable impact in our house was that he just forgot what to do – completely forgot how to do foreplay or which things I liked or didn’t like. Nor did he have any idea what he liked. Having said that, he was happy to try if I prompted him – but regardless of what Zoe suggested, a woman knows if her man is going through the motions and to me it just felt unfair to ask him to do this thing if he wasn’t getting any pleasure from it himself.
Treatments can become a crutch – we chose the urologist well. John started to get natural erections at about the 24 month mark and is now sufficiently recovered to be able to wake in the middle of the night with an unexpected erection and with a little manual encouragement, can get an erection every morning when he wakes up. But it only lasts for 3 or 4 minutes so you have to be very, very on the ball. Also he just doesn’t believe in himself, doesn’t trust his body not to let him down, so would never dream of actually trying to have sex in the morning. We continue with chemicals and the 6pm – 7pm window of opportunity simply because he cannot envisage doing it any other way.
Our struggle to overcome these difficulties is made more problematic by the years of sexual tension before; I realise that couples who are able to laugh about it fare far better than us. I am also aware that the experiences of others play on J’s mind – especially our dear friend R whose wife had an affair while he was recovering from RP (she said later that the sight of him using the pump killed any feelings she had for him). Happily, he is now in a new relationship with a much kinder lady.
I have no idea what the solution is, apart from to keep holding onto each other and try to avoid ‘blaming’ – this is my issue to resolve because I do have a tendency to get cross occasionally and say ‘you’re not trying hard enough’. I was only 45 when J was diagnosed; I have now accepted that I will never know what a great sex life can be but as time goes on, I find that my libido has dropped in synch with John’s – which gives me some peace but causes John great sadness and hurt. His greatest fear is that I will leave him. Indeed, in the early days, he suggested a number of times that we should split up while I was young enough to ‘find a proper man’. He is the other half of me – we are incomplete when apart – so there is no danger of me going anywhere but that doesn’t mean it is always easy to bear.
Edited by member 27 Feb 2016 at 17:35
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