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One wife's story of ED

User
Posted 16 June 2014 22:33:07(UTC)

I have copied below a post that I made about a year ago although things have moved on a bit since then. 
****************************************************************** 

'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. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


Thanked 4 times
User
Posted 16 June 2014 23:10:20(UTC)
Finally to bring the story bang up to date - hopefully, it will reassure some of the newer members who worry about what might be in store.

June 2014 - John has gained in confidence; he stopped taking the daily Cialis about 4 months ago and it seems to have made very little negative impact. Although erections are still short-lived, often lasting only a few minutes, as long as we don’t panic it returns. Levitra seems to work better than Viagra in our house, and side effects are slightly less. Both leave him with a pretty horrible headache but the achey legs & other pains have gone which sort of confirms our suspicion that these were caused by the Cialis. If he is in the right mood at the right time, he can manage perfectly well without any meds at all but the result is smaller and less firm.

The pump is relegated to the back of the cupboard with the out-of-date caverject injections (which ED nurse Zoe will be really happy to receive as she uses them for letting men practice shaking & twisting the chambers). If there is to be any ED as a result of the salvage RT, that will likely only develop over the next few years so I will guard the pump like a rottweiler just in case (unless someone makes me a good offer, of course :-0 )

So one in the eye for those doom-mongers that say if it isn’t sorted by the 2 year mark that’s it. It took John a full 4 years post-op but finally we got there and I am convinced that it is all thanks to the early use of the pump, Cialis daily dose and the emotional support of a fantastic ED nurse. A huge lot of love and some dogged persistence probably helped as well!!!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


Thanked 8 times
User
Posted 16 June 2014 22:33:07(UTC)

I have copied below a post that I made about a year ago although things have moved on a bit since then. 
****************************************************************** 

'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. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


Thanked 4 times
User
Posted 16 June 2014 22:58:58(UTC)

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!

***********************************************************************************************************************************************************

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.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


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Posted 16 June 2014 22:58:58(UTC)

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!

***********************************************************************************************************************************************************

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.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


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Posted 16 June 2014 23:10:20(UTC)
Finally to bring the story bang up to date - hopefully, it will reassure some of the newer members who worry about what might be in store.

June 2014 - John has gained in confidence; he stopped taking the daily Cialis about 4 months ago and it seems to have made very little negative impact. Although erections are still short-lived, often lasting only a few minutes, as long as we don’t panic it returns. Levitra seems to work better than Viagra in our house, and side effects are slightly less. Both leave him with a pretty horrible headache but the achey legs & other pains have gone which sort of confirms our suspicion that these were caused by the Cialis. If he is in the right mood at the right time, he can manage perfectly well without any meds at all but the result is smaller and less firm.

The pump is relegated to the back of the cupboard with the out-of-date caverject injections (which ED nurse Zoe will be really happy to receive as she uses them for letting men practice shaking & twisting the chambers). If there is to be any ED as a result of the salvage RT, that will likely only develop over the next few years so I will guard the pump like a rottweiler just in case (unless someone makes me a good offer, of course :-0 )

So one in the eye for those doom-mongers that say if it isn’t sorted by the 2 year mark that’s it. It took John a full 4 years post-op but finally we got there and I am convinced that it is all thanks to the early use of the pump, Cialis daily dose and the emotional support of a fantastic ED nurse. A huge lot of love and some dogged persistence probably helped as well!!!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


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Posted 17 June 2014 02:04:39(UTC)
Well done Lyn for bringing this to fore. It is very brave of you to open up yours and John's sex life but it will give a lot of hope to others.
Life is for living
Barry (alias Barrington )
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Posted 17 June 2014 06:33:49(UTC)

Achy legs!  I wondered what it was caused by - I had not made the connection.  It's my left thigh in particular, a very strange sensation.  Thanks, Lyn - you are such a wonderful source of information.

Stay Calm And Carry On.
User
Posted 17 June 2014 06:43:49(UTC)
Thank you for your honesty and humour. It really does help.
We can't control the winds - but we can adjust our sails
User
Posted 17 June 2014 07:58:10(UTC)

Achy legs! I've only been taking Cialis for a week and I'm hobbling around too. I never connected it with the Cialis either. Thank you Lynn for that insight I wondered what it was.

 

Edit: I have also been having back pain that I put down to swimming. Could this be the Cialis too?

User
Posted 17 June 2014 09:14:44(UTC)
Lyn, an excellent posting.

In my RT/HT times the tone has given to others at the same time was ‘dead men don’t get erections’ effectively meaning tough luck get over it – next patient. From reading posts and articles over the years I’ve seen improvements in attitude towards ED. But certainly a long way from it being at the level it should be. Posts as yours will hopefully help improve natters further.

Ray
User
Posted 17 June 2014 19:38:33(UTC)
My husband also has had leg and back pain which started 2 days after taking first Cialis. I assumed it was because he was on 20mg tablets. If I remember right Martenstoves and Sf2 are on the lower dose but daily. The back pain kept him awake and he had to take the painkillers hospital gave him after op, which he stopped taking 2 days after op.
Thanks Lynn for writing such personal and informative posts they have helped us a lot.
Meg
User
Posted 18 June 2014 05:49:17(UTC)

Well that's it - the leg ache has become so discomforting, (is that a word?), that the cialis will have to stop. Up and awake now because I have been tossing and turning in bed, unable to sleep.

This was the first time the pain, for that is what it has become, is in both legs. In the end, a good night's sleep is more important. I'll fight harder for my pump when I next see my GP, which I'll arrange when I return from my mini break in Worcester.

EDIT

Just had a thought - could alcohol be playing a part here?  I'm not a big drinker, but had a pint on Monday, and a large glass of wine last night.  

Stay Calm And Carry On.
User
Posted 18 June 2014 08:55:42(UTC)

If it was the alcohol causing it I'd be writhing in agony by now....

User
Posted 18 June 2014 15:41:34(UTC)
A heartening and honest post. Thank you for sharing.

Best wishes & thank you.


Life's a Marathon. Run in peace.
User
Posted 04 November 2014 18:59:00(UTC)

Thanks for all the helpful information. 

My husband had a radical robotic prostatectomy on August 26th and has made an amazing recovery, he's got his energy back and is 100% continent. 

However there's not much else going on downstairs. At the follow up appointment after surgery the consultant prescribed Cialis, 20mg to be taken twice weekly and sent a letter to the GP a month ago. The letter was "mislaid" and had to be resent. My husband picked up the prescription today, the GP didn't want to see him, there were no instructions other than the leaflet in the box, no follow up letter from the consultant. Just a pack of 8 tablets. It's the first time since all this happened that I feel completely at a loss due to a total lack of information apart from what I've been reading on the internet. The consultant thinks everything will get back to normal in time and that the Cialis will act as a kick starter but it's a big unknown quantity. 

Would be grateful to get some feedback as to other peoples' experiences.

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Posted 04 November 2014 23:38:03(UTC)

Judith

I had the same op in April, and now have a pump and am being prescribed sidenafil. There is no real sign of progress, maybe some initial stirrings, but I am not over concerned as Lyn says, it can take 2 or more years. I have just turned 62.

I was initially given a daily 20mg cialis dosage, but given at least 2 months supply, but was then told at Christie's 3 months ago to use the pump without any rings for exercise, and the sidenafil when needed. The pump brought erections to about 70%, but I had to have 3 or 4 attempts to get that much. I also had bad leg aches taking cialis tablets at night which was quite uncomfortable. My advice would be to take the cialis in the morning if hubby suffers at night.

2 weeks ago, I was told to use the pump, with a ring and a tablet, but due to a heavy programme of family birthdays, not had a chance to try things out. Thursday, I might have a chance, but not holding out too much hope of any penetration. It certainly isn't romantic!!!!

Treatment has seemed a bit haphazard - referral to an ED specialist would seem better to me than going back to your centre and also having to deal with the GP.

Hope you get some satisfaction (!) in treatment and results soon.

Paul

Stay Calm And Carry On.
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Posted 12 April 2015 06:42:43(UTC)

I know this  is a little later with the rest I am just coming to terms with how surgery has effected our lifes in relationship to sex.

 

Today I celebrate 40 years of a good marriage , a reasonable and satisfying sex life and are sure if all was ok we would have made love today.

 

However that is not possible from and having been to see the specialist nurse on Wednesday she refered to ED and I am going to see a male nurse to discuss.

But when I hear some off the treatment I think there not for me. How romantic can it be hang on for 5 miuntes while I pump up the volume , or needles.

 

I hear you mention about oral sex , this is something my wife has never shown intrested in giving so would not push her. However she always used to enjoy me performing it on her. (so maybe an option)

 

I know history has always shown that it is the female who is responsible for satisfying a mans needs but for me it has always been about both of us.

If not I might as well had bought one of those dolls they had  on fools and horses .

 

Like most men with an ego we think that any woman would fall over to have the night of their lifes with a supper stud like us but reality is that I was never god give to women and only ever had sex with 3 women in my life .

 

But I know today I am still in love with the woman who said I do 40 years ago today and has shown through her eyes and actions over the last 4 months she loves me.

And I know  when we do it is making love not as the pattern appears to be today an act of personal satisfaction.

 

Perhaps I will have to go down the local sex shop and buy a lesbian strap on(LOL) but will find an answer.

 

Paul or pinny

 

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Posted 12 April 2015 12:15:39(UTC)

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..

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Posted 12 April 2015 17:33:40(UTC)

Hello Pinny and congratulations on your 40th Wedding Anniversary.

You have a "good marriage and a reasonable and satisfying sex life"

Is there a difference between "making love" and having sex?
I think a lot of women would say there was.
Any man can have sex, not all can have it in a loving relationship so you are blessed.

We have found Viagra helpful.

Yes it does mean there is no longer any spontaneity and more planning is necessary, but I'd rather have that than my other half thinking it wasn't worth the effort (not that I'm saying that's what you meant        ) because if he did feel like that then I'd feel devalued, if that makes sense.

After 45 years together, sharing many horrible times in our lives, we still have each other and for that I am truly grateful. Sex is a bonus, which at the moment we are very happy to have as part of our lives.

When it becomes no longer possible - well, we'll still have each other, the same as you and your wife will.

Enjoy your Anniversary and the many more to come !!

We can't control the winds - but we can adjust our sails
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Posted 12 April 2015 17:50:01(UTC)

Hi Paul (and Mrs. Paul),

Just wanted to congratulate you on your 40th. Wedding Anniversary.  I hope you have a very happy day.

The most important thing is you have each other.

Cherish these times.

Steve

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Posted 12 April 2015 18:33:51(UTC)
Paul,Pinny I was moved by your post almost as much as I am in awe of Lyn and her original thread.

What a lovely tribute to your wife on your Anniversary, 40 years is such a big achievement today.

Sandra says is there a difference between sex and making love I think there is and that there is room for both in a relationship. Times of deep loving, tender and almost planned romantic trysts and then those spontaneous "OMG what happened then" occasions.

Whatever it is and whatever you do just enjoy each other for many more years to come.
xx
Mo
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Posted 12 April 2015 20:09:50(UTC)

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

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Posted 12 April 2015 20:22:16(UTC)
Congratulations Paul - 40 years is quite an achievement.

Sending best wishes.

Enjoyed the Superman story Dave.
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Posted 13 April 2015 07:55:13(UTC)

Originally Posted by: Online Community Member

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

-----------------------------------------------------------------------------------------------------------------------------------------

 

Did you Pinny/Paul ?

Apologies if so, that wasn't the intention, in fact that's what the emoticon was for.

I was just trying to say that women, in general, see sex differently from men and it isn't always about the physical act, nice as that is.

You can have a wonderful meaningful relationship without sex if you love each other and have patience

Soooooo, if you did feel chided, please accept my apology

We can't control the winds - but we can adjust our sails
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Posted 13 April 2015 20:22:06(UTC)

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. 

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Posted 14 January 2017 12:04:08(UTC)

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 can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


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Posted 14 January 2017 12:38:06(UTC)

Hi Lyn
Lack of confidence is a known killer as we all know , yet a couple of successes can lead to vast improvements. I know that you know virtually everything about ED as do I now !! All of the tablets require physical and mental -buy-in to work as you are aware. I would have thought the trip of a life-time should trigger that. Is John actually frustrated too or do you think deep down he is happy with the way things are. ? Spontanaeity was a big hurdle for us and excitement is key. The daily 5mg Cialis is working a treat for us. Night time erections daily , morning erections daily , and I can easily masturbate solo now which was a big problem for a while. With the edition of a cheapy cock ring ( which we both carry on us ) we can get it on in all sorts of places which just helps even more getting the blood flowing. I have to say if I was undetectable psa then I'd be in a very happy place now :-(
I urge you to try Invicorp25. It may be that injectables are your way forward now. Any way forward is a good way. You have read my reports. Very easy to use , one dose for all , less chance of priapism , a good hours erection and zero pain. I love it for an event which we plan every month now. Contact me if you want more details. You are an incredibly clever person and I guess you already know the answers to your own questions. I guess psychological stuff and stress are more at play , and it's easy to give in sometimes.
All wishes xx




If life gives you lemons , then make lemonade
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Posted 14 January 2017 15:51:19(UTC)

There's one thing you have to say for Prostate Cancer - it enables conversations that under any other circumstances would not be taking place. 

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Posted 30 March 2017 23:36:13(UTC)

RT induced ED is just starting to show itself - we need to see the ED nurse and I think we will ask about the invicorp, CJ

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


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Posted 31 March 2017 05:36:00(UTC)

Hi Lyn
Yes you are old hands with injections. All though it is one dose for all , the last one I had quite raised my heartbeat and mega flushing but it did the trick perfectly. You might want to try two thirds first.
Another member with non-nerve sparing tried it and I had great hopes but sadly it didn't work , but no pain. It seems part of the injection works like PDE5 , so if you have no nerves ........
Very difficult to obtain NHS although he did. I did it privately. Very sorry to hear all this Lyn. Your great news followed by bad news. If anyone can suss it you can. X




If life gives you lemons , then make lemonade
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Posted 31 March 2017 07:07:29(UTC)

We are not seeing it as particularly bad news - it is just that the erection isn't quite as firm and it doesn't last very long rather than nothing is happening. Not a huge problem yet but we will speak to Zoe anyway

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


User
Posted 23 May 2017 12:54:05(UTC)
Hello Lyn,
Thanks a lot for sharing.
May I ask about the urine leakage, is it resolved?
I am scared to even try (had RP 2 months ago now) because of this.
Thanks
Ayman
User
Posted 26 May 2017 11:22:38(UTC)

hi Ayman,
my husband also had RP and the urine leakage has now stopped. It was bad for the first month I would say and then was only occasional for another month and I don't think he has had it since. RP in Feb.

User
Posted 19 July 2017 19:22:55(UTC)
How lovely your post is. Your love for your wife shines through, I really hope things have improved since you wrote it. I am a wife who was married 25 years last week. I am only 49 and sometimes feel I will never make love with my husband again. (When we do get amorous nothing happens for him and I feel guilty and he feels hopeless so we try less and less)
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!!
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Posted 20 July 2017 05:53:11(UTC)

Keep fighting Misty, and never give up hope

You are both young enough to want the future to contain a loving physical relationship.

Easy for me, or anyone else to say, but try and hang onto the closeness even if at the moment full intercourse is a nono.

We can't control the winds - but we can adjust our sails
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Posted 20 July 2017 07:51:23(UTC)

Its been 7 weeks since OH has surgery and ED is a work in progress, I don't think you are fully prepared when they say to you that ED will be a problem after surgery. we are very lucky that we can speak about anything and have ordered a few things online to help us along the way, we have been having a laugh experimenting and just seeing where it goes without trying to put any pressure on one another. We have both managed to have an orgasm OH with penetration sex with a little bit of work and a helping hand and to be honest not really working for me, but as they say there is more than one way to skin a cat and we have found that way for us. We have been lucky that we have Sildenafil on repeat prescription and have been told that we can up the dose from 2 to 3 and see if this helps with the firmness, will just have to take things slowly and not try to run before we can walk. We are just away to book a holiday so looking forward to sun, sea and hopefully the other

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Posted 20 July 2017 11:43:24(UTC)
Misty here again. Thanks Johan! Lynda your OH's progress sounds amazing. Did he have both nerves spared? Mine only had one saved but one is better than none! Can I ask how much is 3 Viagras? On Chris and Lyns advice I got hubby's prescription changed to Viagra this month to give it a go as 20mg Cialis hasn't been working at all and We are almost a year out.
Lyn kindly promised to send us her pump as they cost at least €450 here on top of the €250 I'm now paying for family meds (€150 for my auto immune condition plus another €100 for the not working Cialis monthly). However viagra is covered but 4 x100mg for the whole month is all they would give us! (I assume I can buy more privately). Anyway haven't quite got the nerve or the opportunity to try it yet...too many kids in the house!!
Was your doctor suggesting up to 300mg? Or did you get a lower dose tablet?
Keep up the good work...sounds like you are progressing really Well!!
User
Posted 20 July 2017 15:58:41(UTC)

Hi Misty, OH had both nerves spared, OH took 1 Sildenafil 25mg for 30 day as he was told that this was to help with blood supply, he increased it to 2x25mg which he takes this gives hims semi, we are now going to try 3x25mg to see if that makes a difference if not we will try 4x25mg. As I said we have a very good relationship and speak about everything but I really to miss that early morning erection, fingers crossed that we will get there but as I have said we are trying other things, never thought I would own such a thing as a vibrator which seem to work for us both. Wish you well on this journey

User
Posted 20 July 2017 17:57:46(UTC)

I'm pretty sure that 100mg is the max at any one time and only once in the day (or night!)

We too started off with 25mg because we had some success without anything but that gradually changed and it has crept up to the full 100mg. On the other hand my husband is 76 so we are fortunate that we led a much fuller life when we were younger.

Good luck the pair of you

PS Lynda. I'm sure you've already had it said to you before but apparently 25mg of Sildenafil is not much good for increasing blood supply. That should be 25 mg of Cialis and a larger amount for an event

We can't control the winds - but we can adjust our sails
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Posted 26 July 2017 07:08:19(UTC)

Hi Misty, just back from my holiday. Will get the pump in the post to you today and fingers crossed you will have it by the weekend.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


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Posted 26 July 2017 07:11:24(UTC)

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.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


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Posted 26 July 2017 08:41:48(UTC)
Hi Lyn

Great to have you back. Hope you had a great holiday and best of luck with results. That's fantastic 're the pump. OH will be delighted.

Cheers
Misty
User
Posted 26 July 2017 08:49:52(UTC)
Lynda it's 5mg Cialis daily or 20mg for an event. Johsan probably confused the Viagra dose.
We have had 20mg Cialis every 4 days (2 a week) which arent covered in Ireland except at 4 a month for 1st 6 months.
We did this from a month out but now will ask for 5mg a day and Viagra for an event, when we go back to our urologist as that seems to be the accepted best practice on this site.....generally. Of course there are people that do better on other plans I'm sure, but our plan is not working!

Also 11 months out going to start using a pump.

Good luck with your experimentation!

Misty
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Posted 26 July 2017 09:41:28(UTC)

Actually, starting point for rehabilitative Cialis is 2.5mg - some specialists will go straight to 5mg daily but because the side effects are quite uncomfortable for some men, better to stick with the lower dose if possible.

You might be better getting a pill cutter from the chemist and taking half a 20mg every 2 days, or a quarter of a tablet every day (but they are quite hard to cut into quarters)

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


User
Posted 26 July 2017 10:06:51(UTC)
Wow Lyn and to think my poor OH started on 20mg every 4 days. He had very bad side effects. I really do feel we have had bad advice. Do you think it would be good for us to go to 5mg daily now and Viagra for an event? Seeing urologist next week so hopefully he will have tried out the pump then too! I will ask for prescription change based on your recommendation.
 
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