One wife's story of ED

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  | Reason: Not specified

I have copied below a post that I made about a year ago although things have moved on a bit since then. 
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'Many may feel a sense of loss of masculinity and sadness around the inability to sustain an erection and will be reluctant to seek support. This can often cause them to emotionally isolate themselves from their partners and could make the issues worse.' 

I was particularly pleased to see this comment in the Macmillan report – thanks Jill for posting the link. We see common themes weaving through the posts of new members in the dx stage, especially the almost evangelical beliefs around whether open or robotic surgery will be better for nerve recovery, 2nd & 3rd opinions in an attempt to find the surgeon who can guarantee future erections, entitlement to cialis and so on. It is also noticeable how many men at the start of this journey feel the need to say how great their sex lives have been up to the point of diagnosis. It sometimes seems here that ED is purely about getting an erection. 

Wake up call .... ED / impaired sexual function and loss of intimacy can be a sadness for men and their partners at every stage of this disease. Impotence as a result of RT can take months if not years to show itself and just because it happens incrementally does not make it easier to bear than for the man who has lost his ability to get an erection overnight. With the exception of Allister (our very own enigma) HT can devastate our intimate lives through impotence and through loss of libido. I think it was Chris who wrote so emotively about looking at his wife’s behind and feeling nothing – yet perhaps the cruellest blow for men on HT would be to be impotent but still have desire? Mark posted that advanced disease and decreasing libido had at least brought him a sense of calm and acceptance. What of those men who don’t have a regular partner and cannot imagine how they would ever meet and have a sexual relationship with someone new? And for any couple where disease is ravaging a body, sex probably drops off the agenda fairly quietly but that doesn't prevent either person from craving the love, comfort and passion they once shared or from grieving that part of their shared history. 

We are now 3 year post-op and nearly 4 months past HT/RT. It has in some ways been the saddest and loneliest time of our lives. Technically, J is one of those fortunate few who have recovered natural sexual function post-RP; it is too soon for RT-induced ED to be an issue and any ED as a result of the HT is wearing off. I am sure that part of his physical recovery has been down to the pump, ED nurse Zoe’s support and the once-a-day Cialis. Sadly, our intimate life is in tatters. He is so anxious, so lacking in confidence or belief and any failure can set him back by weeks. Consequently, attempts are becoming less frequent and of course, more and more pressurised which leads to even more chance of it all going Pete Tong and then an even longer gap before the next attempt … a vicious cycle. Don't get me wrong - sometimes it is wonderful so if we could link together a few 'wonderfuls' you would expect it to get better but just one little problem sets him right back again. 

I think any increase in psychological support for men and their partners will be welcomed. My fear is that, in areas where support for the physical side of ED isn't seen as a right, the emotional support will be light years away. 

It has been a while since I updated this thread. Over the last year or so, we have settled into a 'normal' - John can get spontaneous erections, including during the night and on waking, but continues to worry that he may not maintain them and so relies on tablets instead. We have just come back from the trip of a life time (yes, another one) and beforehand I asked if we could, just once perhaps, have a holiday morning s**g - I am sure many of you remember those heady days of our youth when waking up with sunshine and sounds of waves crashing could almost guarantee a quickie before breakfast? I REALLY miss that closeness. Anyway, it never happened ... he simply does not have the confidence and self-belief to try it.

So he has fully recovered mechanically but still has ED. Viagra and Levitra both work, albeit in different ways, and the GP is still happy to prescribe both. Erections are not so long-lasting so sex tends to be a bit more rushed these days. Length and girth seem to be diminishing further, which we hadn't expected at this late stage but may be a late side effect of RT and/or simply long term impact of 'use it or lose it'; even with the odd night or morning erection, drug induced erections etc you cannot replicate the average 20 or so erections that a healthy man will have daily (who is that average man?)

We have talked about whether to go back to see wonderful Zoe (the ED guru) to ask about going back to the injections. My instinct though is that if there is no physiological reason to have ED then Zoe will say the risk of prolonged erection is too high.

Life is for living

Barry (alias Barrington )

I hope Pinny/Paul does not feel at all chided by Johsan?

Mo's response from a female perspective, a view I have heard expressed before, reminded me of a Vicar of Dibley end of episode moment, copied below:

Superman's feeling a bit bored because Batman and Spiderman are on a scuba diving course, so he doesn't have anyone to play with.

So he's flying around. Suddenly he sees Wonder Woman spreadeagled naked on top of a tall building.

He's always fancied Wonder Woman so he thinks now's my chance and he swoops down and faster than a speeding bullet does the business and then he flies off again.

A moment later Wonder Woman says "what was that?"

Then the Invisible Man climbs off her and says "I don't know but it hurt a lot".

Alice's response is splendid.

Anyway, someone was talking about a spontaneous event,

dave

Very few men have RT alone. While HT doesn't necessarily cause ED it almost always results in a total loss of libido which has the same effect on a relationship but perhaps without so much angst from the man (but a lot more hurt and sadness from the partner as demonstrated by Bee's post). I suspect that the reason posts on here are mostly from men that have had surgery is that many of the men on HT aren't stressing about it so much because either they a) have no libido so can't remember how they used to feel or b) are too ill for sexual intercourse.

Men who have ED as a result of the RT tend to develop this some years later, by which time it may be too late for the penile rehab approach. The size / girth / ability has often already been decimated by the HT, Cialis & Viagra may work but can't put right the damage done and some CCGs will not approve a pump or caverject for men that haven't had surgery.

IMO, it is an absolute scandal that 1) not all CCGs provide an ED / andrology clinic 2) in some areas, men have to ask about a referral when it should be offered automatically to all men diagnosed with PCa and 3) in too many areas, ED services are only available to men that have had RP and medics don't even think to discuss penile health and erectile function with men who are embarking on HT

Thanks Lynn for writing such personal and informative posts they have helped us a lot.

Meg

Hey, Pinny congrats....40 years , or (double life sentence +10) for some of us !

and your discription of a romantic encounter with the dreadred pump....oh WoW that really sent shivers down my spine...

have a good one and all the best..

No I posted my thoughts I was no upset by anyone's reaction just trying to find out how other survivors cope.

If I never have intercourse again it has to be lived with, there is one thing that is certain if I had not had surgery I would never have sex again.

It is better than pushing up daisies. 

However reading posts here, especially Lynn's, I feel more hopeful and also very angry that 1 year on we have had no ED referral, Just 20mg Cialis, 8 times a month for which we have to fork out €100 on top of the €150 I already pay for my own medication due to a long tern auto immune condition. No free pumps here either.

I am making a list and am going to start stirring things up with the doctors....if only my husband would let me!!

Best of luck with your progress in all departments!!

Lynda, I would get some more advice about the level of sildenafil your OH is taking. That much drug this soon after the op is an awful lot of chemicals and probably far too soon. Perhaps check with your local pharmacy? The NHS usually only allows 4 or 8 tablets per month.

Also, is he taking it on an empty stomach and leaving a long enough wait? If John took a viagra, it would work best about 3-4 hours later.

Edited by member 26 Jul 2017 at 08:14  | Reason: Not specified

Thank you to everyone on this post, I'm nearly 10 months post op and I've just read this with my wife. 

I'm on daily Cialis and have been using a pump for the last 4 months, although the pump is only good for keeping the penile tissue healthy.  Going to try larger doses of Cialis and if that doesn't work then we're onto Muse, (Alprostadil pellets).

Your post has really given us hope.

I have just read this thread from start to finish and as a newbie to to this club found it both informative and amusing in some parts.

The one thing that stands out is that nearly all of the posts are from men or the wives of those that have had RP and not much from those that have gone down the HT RT road as I am. Is it that ther is less chance of having ED after RT?? I know that it is a side effect as I read it on the main site.

Although I never had any symptoms of PCa before I was diagnosed I did occasionally suffer from problems getting an erection and I now wonder if that may have been an early indication of what was to come.

I am not overly worried about ED as after nearly 40 years marriage we have had a good sex life and we are both happy to just have the closeness of each other at night now and I am happy just to give my wife pleasure by caressing her body which I believe is enough for her (we very rarely talk about sex)

I would be interested to hear some feed back from anyone that has had HT/RT.

Edited by member 21 Dec 2018 at 21:11  | Reason: Not specified

Totally agree and if one more person tells me to keep my chin up and stay positive, they're going to get a smack in the eye as well.  We are doing the best we can considering that our life has been turned upside down in a just a few months, and we know for sure that it will never be the same as it was.  

Hi Steve

I've just read your post to Lyn, and tbh whether you had nerve sparing surgery or not, give yourself a break. You are 4 weeks post op which is nothing. We all hope that we’re going to be the one that’s different and that we’ll be able to perform like we used to but that’s just not realistic and probably after 12 months, let alone one! Mine wasn’t nerve sparing and it took at least a year to get any twinges and although I could tell that there was some improvement with regards to my erection it was never going to be enough and actually life is too short. Injections, painful and unpleasant and usually didn’t work for me. Oral drugs completely useless and although the pump gave a physically better result, it was uncomfortable and less than satisfying. I could have waited to see if things got better but as I said life is just too short which is why I’ve gone down the implant route. I’m less than 4 weeks post op and as yet it is ‘untried and untested’ as I’m waiting for my follow up appointment but I know for me this is the best chance I have of getting in some way back to normal. Don’t try to run before you can walk. Expect disappointment along the way but keep talking with your wife. Don’t delay using the various options available. If one doesn’t work well, move on. I consider myself very fortunate to have had implant surgery only 17 months post RP, with Covid delaying things, but I know that I would have waited far longer had I not been proactive and pushed for it.

All the best for the future. If you’d like to DM me feel free.

Rgds

Rich

Steve, the 5mg daily Cialis is unlikely to be enough to help you get an erection at this stage. Its purpose is to improve blood flow around the nerves to speed up their recovery and to improve blood flow in the flaccid penis to reduce chance of damage caused by lack of erections. The pump is good to use too for this, but usual advice is no pump for first 8 weeks - check with your clinicians. This would suggest you had nerve sparing surgery.

You might also want to ask for some event doses of PDE5 inhibitors to try for erections, such as 100mg Sildenafil (Viagra) or 20mg Tadalafil (Cialis). These won't speed up recovery, but may alert you earlier that recovery is happening which is a big psychological boost and may enable you to have sex more easily.

I don't think John is feeling that positive towards me at the minute 😬

We have a refugee staying with us which means no privacy and certainly no injections / rumpy-pumpy on an afternoon (and as some of you will have read above, J absolutely will not inject after about 6pm in case of A&E trip for priapism). So we booked a hotel last weekend as it was our wedding anniversary. He packed an injection, toys & lube. Unfortunately, we failed to communicate ... there I was laid on the bed naked wondering whether he was ever going to make a move, while he watched the rugby. When the rugby finished, I apparently didn't give any clear signals (🤷‍♀️ I was thinking that if he wanted sex, he would make an effort - silly me) so nothing happened. During the evening, I pointed out that he seems to have completely forgotten how to do foreplay or romance; leaving the Invicorp box on the counter is not quite the same as a massage or whispered love notes. We agreed that morning sex the next day would be fun instead but again, it didn't get going. Discussing in the car on the way home (him gripping the steering wheel with white knuckles and me looking anywhere but at him - there's no escape when you start a difficult conversation on a 2 hour car journey and I should have waited until we were nearly home) he said that he wasn't sure what we had agreed the previous evening.

And they say romance is dead. Hoping the refugee goes out tomorrow - I have given him a car!

Edited by member 21 May 2022 at 00:23  | Reason: typo