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One wife's story of ED

User
Posted 12 Sep 2018 at 00:39

Originally Posted by: Online Community Member
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.


 


Misty, I missed this - did you get it resolved? 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 16 Jun 2014 at 23:58

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.

Edited by member 27 Feb 2016 at 17:35  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 Jun 2014 at 00:10
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
User
Posted 16 Jun 2014 at 23:33

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
User
Posted 14 Jan 2017 at 12:04

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
User
Posted 06 Feb 2020 at 21:57
Anyone that says PCa is the best cancer to get needs a smack in the eye, don't they?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 14 Jan 2017 at 15:51

There's one thing you have to say for Prostate Cancer - it enables conversations that under any other circumstances would not be taking place. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

User
Posted 17 Jun 2014 at 03:04
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 )
User
Posted 12 Apr 2015 at 07:42

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


 

User
Posted 22 Dec 2018 at 01:09
There is no easy way of checking as this forum lacks a 'Poll' facility but I believe the majority of men have a Prostatectomy rather than RT as older guys like me had. This might go some way to explain why there is more comment about ED by men /partners who had surgery. Also, ED is more likely to be experienced soon after surgery whereas it can be delayed for quite some months or even a year or more with RT.
Barry
User
Posted 24 Dec 2018 at 00:09
Bobk, I think I made the point in one of the earliest posts that there is a lack of understanding or emphasis from medical professionals regarding the effect of ED and loss of libido on men with RT / HT, and the over-focus on it from men having (or considering) RP can be very hurtful or frustrating for this group.

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
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 18 Mar 2019 at 16:56
I think the point I'm getting here is it's important to talk. I separated from my wife of 20 years about 15 months ago although we remain on great terms and she's being very supportive as my "best friend" I recently started a new relationship with a friend I've known for many years (in the purely platonic sense) which has developed into something amazing and which I hope(d) has potential for the future and may well do.

She's been great through my recent diagnosis and we've talked a bit about the potential follow on issues after treatment in particular as the medical team are tending towards a RP. We do skirt around the point a bit sometimes though and she's very much lets cure then deal with the future later. I kind of agree with this but that's easy to say now but I am conscious she's a good deal younger than me and life can be long if you have something missing. Certainly it was an issue in my marriage and definitely not talking about things and dealing with them contributed to the issues in my marriage.

I'm hoping I've learned enough to have the brave conversations and do what's necessary to make things good once things are sorted out for my treatment.

Hearing other peoples points and brilliantly open and truthful experiences is proving an invaluable resource here. It's the emotional stuff which is going to be difficult for me/us I think.
User
Posted 17 Jun 2014 at 20:38
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 04 Nov 2014 at 18:59

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.

User
Posted 12 Apr 2015 at 13:15

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..

User
Posted 12 Apr 2015 at 18:33

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     http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif   ) 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 !!

Edited by member 12 Apr 2015 at 18:34  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 12 Apr 2015 at 21:09

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

User
Posted 13 Apr 2015 at 21:22

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. 

User
Posted 14 Jan 2017 at 12:38

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
User
Posted 19 Jul 2017 at 20:22
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!!
User
Posted 20 Jul 2017 at 18:57

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
User
Posted 26 Jul 2017 at 08:11

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

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 Jul 2017 at 10:41

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 11 Sep 2018 at 19:55

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.

User
Posted 12 Sep 2018 at 00:41

Originally Posted by: Online Community Member


Lyn an any others,


Thank you for your valuable information in this email thread :-)


Just a question, when can/should one start using the pump?


Paulo



 


Paulo, how are you getting on with the pump? 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 13 Sep 2018 at 14:42
Paulo I mostly used my pump for rehab and still do although I am now functioning ok with cialis 3 1/2 yrs on. It sounds like your ring size isn’t right and you need a tighter one. Worth researching. Yes it’s a passion killer , but with the right ring on it can be fun and you can use it for up to 30 mins at a time if you both like

If life gives you lemons , then make lemonade
User
Posted 13 Sep 2018 at 16:38
I could only crack pump "erections" with 2 rings 😂 Also make sure you have a porn star trim, the hairs ruin the seal and make it tricky to get the rings off!

User
Posted 21 Dec 2018 at 20:58

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

User
Posted 21 Dec 2018 at 21:34
A lovely post. !! As long as love and communication are key , where can you go wrong ?? Congrats foremost on 40 yrs and enjoy each cuddle - they mean way more !!

If life gives you lemons , then make lemonade
User
Posted 23 Mar 2019 at 00:55
Darkrainbow I think we had worked that one out!! Get yourself some Caverject you will be able to go all night!!!
User
Posted 25 Oct 2019 at 20:51
No pain, no itching, no problem so far :-)
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 07 Feb 2020 at 11:05

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.  

Show Most Thanked Posts
User
Posted 12 Sep 2018 at 00:41

Originally Posted by: Online Community Member


Lyn an any others,


Thank you for your valuable information in this email thread :-)


Just a question, when can/should one start using the pump?


Paulo



 


Paulo, how are you getting on with the pump? 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Sep 2018 at 00:50

Originally Posted by: Online Community Member


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.



 


If you are taking daily dose Cialis, try 2 or 3 extra tablets (but only for that one day) next time you think you are likely to be 'in the mood' later that day. If large dose Cialis isn't working, try Levitra or Viagra before you move on to Muse, Vitaros cream or one of the injections. John found a combination of Cialis 5mg and Levitra or Cialis 5mg and Viagra successful. 


The trick is understanding how and when to take it, although tablets don't work for everyone. Viagra must be taken on an empty stomach and in our house, it works a few hours later. Levitra can be taken without an empty stomach and works slightly quicker but neither are immediate. 


Is there any particular reason why you see the pump as only for penile rehab? Which pump do you have? 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Sep 2018 at 19:46

I have a SOMACorrect Xtra pump recommended by the ED nurse and was lucky enough to get it on prescription from my GP.  I was originally very keen to try the pump, but after following all the instructions, i.e. 7 to 10 days of daily use to get familiar and used to the various combinations of constriction rings, when it actually came to trying it out for real it proved to be a real passion killer in the bedroom.  Tried 3 or 4 times but it just resulted in frustration for both of us.  So, it's now purely used as a medical aid to help with recovery.


Will see how the tablets go and try the combinations you've suggested, thanks Lyn.

User
Posted 12 Sep 2018 at 20:08

I’m using mine to suck up spiders and bugs and safely deposit them outside. I think that’s all it’s useful for. I have a Soma Touch II which is electric so it’s quick to trap the creepy buggers.


Fresh

Edited by member 12 Sep 2018 at 20:09  | Reason: Not specified

Base jumping without a parachute should be frowned at, never criticised. Fresh

User
Posted 13 Sep 2018 at 11:49

More or less one month after surgery I started using the pump. I must say it has more rehabilitation purposes than anything else. Either I did not get a proper one or I can't use it at its best or last it is not the ideal toy for me (us).


Well, it really does its purpose to make me get it harder but I can't keep it hard after I take it out. It was good at first as I was experiencing the improvements - Now I am keeping using it but needed to stop for a few weeks in August because I had a bacteria infection in my hand joints and I culdn't really make my hands helping using the pump.


I am noticing good improvements though on the erection from cialis (5 mg daily dose) plus 20 mgs once a week. I don't have any side effects, no headaches and it works well after I take the bigger dose. I am trusting this to heal me here along with the nerve healing by its own. Getting happier with this part too.


Now I am just hoping PSA stays low. 


 

User
Posted 13 Sep 2018 at 14:42
Paulo I mostly used my pump for rehab and still do although I am now functioning ok with cialis 3 1/2 yrs on. It sounds like your ring size isn’t right and you need a tighter one. Worth researching. Yes it’s a passion killer , but with the right ring on it can be fun and you can use it for up to 30 mins at a time if you both like

If life gives you lemons , then make lemonade
User
Posted 13 Sep 2018 at 15:02

Chris, thanks,


I will follow your advise and search for a tighter ring. We don't have a problem with the pump :-) so I will continue giving it a try.


 

User
Posted 13 Sep 2018 at 16:38
I could only crack pump "erections" with 2 rings 😂 Also make sure you have a porn star trim, the hairs ruin the seal and make it tricky to get the rings off!

User
Posted 13 Sep 2018 at 21:35
Tips for eff3ctive pump use:
- trim the public hair close to the skin
- use lube on the inside of the tube and where the tube will meet your pubic area
- go a size smaller on the rings than you believed possible
- try different combinations of rings - we ended up with rings from a different manufacturer which was fiddly but more effective

When the pump is successful for engorgement but doesn’t stay erect when the rings are used, it is down to technique - a little hesitation or a shaky hand can break the seal and the vacuum is lost.

There are some men who cannot get engorged with a pump; this is usually down to atrophy which is irreversible.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 13 Sep 2018 at 21:36
Paulo, what make and model of pump are you using?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 24 Sep 2018 at 15:53

Hi Lyn and all,


Sorry about late reply. I need to change my alert signs...


I don't know what type of pump I use. It is a manual vacum pump. Not a very expensive one I am afraid. We don't get any money for pumps here and I didn't buy the most expensive "toy" because I was not sure if it would work.


Well, the pump is doing its job I guess. It seems I wasn't doing the right thing with the ring. I was using the pump and just removing it :-) I bought new rings as the older ones didn't do the job well. I am trying. I need though some more time.


The thing is anyway when I am getting enough stimulation the penis gets hard and I am happy. Of course with the pump, I remove, it gets lost and I need the stimulation. I am trying to use the rings now. Keep you posted.


Thank you for your support,


Paulo


 

User
Posted 21 Dec 2018 at 01:06

My husband is distraught over his prostate cancer.  No sexual feelings at all.  


He was diagnosed with Advanced Prostate Cancer just over 2 years ago, PSA 478, inoperable.  Has had chemo and RT and HT.  It has been awful to say the least.  He has tried viagra - really bad headaches and blood pressure, bloodshot eyes.   Cialis - severe leg pains and has now been given a pump which to cut a long story short, he is distraught with.  We have no sex life at all.  He is 64, I am 57.  Sex isn't the thing for me but I can't do without love and affection which is so upsetting. 


Each time the subject is mentioned he breaks down.  There is no support in this area for discussion, councelling or of other experiences.  


 

User
Posted 21 Dec 2018 at 16:37
Bee,

You and your husband have to adjust to a new "normal" in which there is plenty of room for love and affection, but sex is over. I assume he is still on HT. Viagra can't compete with that! I'm guessing that he is angry with the world and that has squeezed out his loving impulses. He needs to adjust and think of you rather than himself. HT often brings out the softer side in men, it has in me, but men have to make room for it. Easier said than done, but do you have any friends who could help?

AC
User
Posted 21 Dec 2018 at 20:58

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

User
Posted 21 Dec 2018 at 21:34
A lovely post. !! As long as love and communication are key , where can you go wrong ?? Congrats foremost on 40 yrs and enjoy each cuddle - they mean way more !!

If life gives you lemons , then make lemonade
User
Posted 22 Dec 2018 at 01:09
There is no easy way of checking as this forum lacks a 'Poll' facility but I believe the majority of men have a Prostatectomy rather than RT as older guys like me had. This might go some way to explain why there is more comment about ED by men /partners who had surgery. Also, ED is more likely to be experienced soon after surgery whereas it can be delayed for quite some months or even a year or more with RT.
Barry
User
Posted 24 Dec 2018 at 00:09
Bobk, I think I made the point in one of the earliest posts that there is a lack of understanding or emphasis from medical professionals regarding the effect of ED and loss of libido on men with RT / HT, and the over-focus on it from men having (or considering) RP can be very hurtful or frustrating for this group.

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
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 18 Feb 2019 at 15:22

Dear all


I read this thread for the first time today - it's brilliant and very useful.  I really admire the frank talking and kindnesses in the posts and replies. @Lyn: I know you have been thanked many times already - but thanks, and thanks and ever thanks.


This post is to ask for suggestions and advice re my / our situation.  It's also partly a response to BobK's nice post as we seem to be in a similarish situation.  Here goes ... (deep breath)


It's almost 40 years since our first date and sex has been, up and down [so to speak] over the years.  Inexperienced to begin with and with all the normal worries and fumblings.  Once we worked out how "what went where" we had an active and happy sex life in our youth.   Parenthood was probably the first big change and then various things in life had effects. But generally we have been lucky in having had a fair amount of sex without any insurmountable issues.   But we have never stopped until now.


The diagnosis / treatment btw is Stage 4 PCa (T4N0M0, Gleason 9, PSA 141) being treated by RT and HT (so no RP).  HT started last June and is ongoing, RT finished in Nov last year, PSA now <0.5.


So, the awareness of the cancer hits last June and at that point sex is off the menu by mutual consent.  At the same time HT begins, and the HT - I think it's the HT - has removed the "Phwoar" factor from my brain.  The level of advice and support at hospital has been pretty low regarding keeping sex going.  This issue has been mentioned by us at consultations / Nurse Specialist meetings but I'm struggling to recall any response other than "use it or lose it".  Certainly I'm not aware of what changes the different treatments might and might not be making to my willy / balls / etc. And generally I feel that I might be missing a trick.


We're lucky in that it still works.  Libido might not be there but I can get an erection: very occasional nocturnal ones, otherwise a lot of hand work before.  We started to get back to it in autumn and are managing once or twice a month at the moment and it's sort of OK (post-diagnosis we might have had 5 or 6 occasions in all).  Its not particularly comfortable on the willy side of things (it feels smaller, less strong, and sore after a bit, if there is an orgasm it is dry and achy).  But we get across the line, which reduces my guilt a bit and I hope is nice for my partner.  We cuddle, we do foot massages on each other etc. etc. but sex aint something we want to give up just yet.


I think I have heard that penis atrophy is a potential issue (so perhaps "use it or lose it" is spot on): if the willy doesn't get regular (how regular is "regular") erections then the willy gets smaller / less strong ????  And we probably have many other similar technical questions about PCa and sex.


So, it feels like time to take things in hand (funny how any metaphor on this topic feels like I'm in a Carry-On movie) and get doing something about it before it may be too late.  So, I'm thinking some level of external support from someone with knowledge of PCa and its different treatments - and where might be the best place to get this support.    So any suggestions for this or any other suggestions and comments are gratefully received.


[Our support group had a sex speaker last month but this was a missed opportunity for us - perhaps because they didn't to know anything about PCa.  This person was a psycho-sexual counsellor, partly at support group at a nearby hospital and partly at another voluntary sector organisation - so we were a bit disappointed and a bit put-off ("how was if for you?" ..."mmm, felt like my first boyfriend - lots of footling about but getting nowhere").   But in any case that might not be the right route for us.]


 

User
Posted 18 Mar 2019 at 16:56
I think the point I'm getting here is it's important to talk. I separated from my wife of 20 years about 15 months ago although we remain on great terms and she's being very supportive as my "best friend" I recently started a new relationship with a friend I've known for many years (in the purely platonic sense) which has developed into something amazing and which I hope(d) has potential for the future and may well do.

She's been great through my recent diagnosis and we've talked a bit about the potential follow on issues after treatment in particular as the medical team are tending towards a RP. We do skirt around the point a bit sometimes though and she's very much lets cure then deal with the future later. I kind of agree with this but that's easy to say now but I am conscious she's a good deal younger than me and life can be long if you have something missing. Certainly it was an issue in my marriage and definitely not talking about things and dealing with them contributed to the issues in my marriage.

I'm hoping I've learned enough to have the brave conversations and do what's necessary to make things good once things are sorted out for my treatment.

Hearing other peoples points and brilliantly open and truthful experiences is proving an invaluable resource here. It's the emotional stuff which is going to be difficult for me/us I think.
User
Posted 22 Mar 2019 at 09:30
I hope things work our for you Ezza.

In my few years on the site I have gone on and on about the importance of talking so that misunderstandings don't happen.

If we care about each other then we want the best for our other half, and that won't happen unless we, as partners, know exactly what fears and hopes we both have.

Keep going, keep talking.

Good luck for your future together
We can't control the winds - but we can adjust our sails
User
Posted 22 Mar 2019 at 10:22

I do not want cuddle


I do not want emotional support 


I do not want holding each other's hands


I do not want nice cheesy words 


All I want is ...........


 


S.E.X.!!! KAMA -SUTRA!!!!!

User
Posted 23 Mar 2019 at 00:55
Darkrainbow I think we had worked that one out!! Get yourself some Caverject you will be able to go all night!!!
User
Posted 24 Mar 2019 at 11:20
I don’t suggest the Brazilian Wandering Spider bite alternative 😱👹😂
User
Posted 24 Mar 2019 at 13:08

Franchj1


Thanks for your kind recommendation but Lynn had mentioned that (or somebody )


After the injection they had to go to A&E? 4 am in the morning. 


Is it risky and injection sound painful?


Thanks 


D.R

User
Posted 24 Mar 2019 at 13:10

Lol I never fancy Brazilian flat chested girls never mind the spider's:)

User
Posted 21 Jun 2019 at 18:56
The lovely Zoe has apparently left her post as ED nurse so J was referred to the new ED doctor at the hospital. Waited a while for his name to be called and eventually got into the consulting room.

Doctor - “why are you here?”
John explains history - RP, RT, HT - after good recovery, it is getting more difficult to maintain erections for more than a few minutes.
Doctor - “so what do you want?”
John - “Caverject didn’t work very well after the priapism, was hoping to try Muse”
Doctor - “won’t work”
John - “erm, what about the cream?”
Doctor - “won’t work”
John - “I thought it worked for some men?”
Doctor - “No. You can try Caverject again but you probably need to accept the situation.”
John - “okay, I will try the Caverject again”
Doctor - “you will need a referral to the nurses to be shown how to do it.”

J said the doctor was disinterested and negative - what a waste of time 😡
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 21 Jun 2019 at 19:01

That's sad. They can be really good people. You have to wonder if there's any justification behind the "won't work" responses. I wonder what job satisfaction he gets from that?


Might be worth asking GP or a urology consultant if there's someone/somewhere else you can be referred.

User
Posted 21 Jun 2019 at 19:02
Stevie, I am so sorry I missed your post in February. How are things going? Did you find an ED service in your area?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 21 Jun 2019 at 21:12
My ED nurse was crap. To be honest I learnt more off this forum and self healed. If J is at the stage where he is needing Caverject then I guess you could sample some Invicorp privately. And the instructions for injection are better read than being shown sometimes. Contact me if you need details

If life gives you lemons , then make lemonade
User
Posted 21 Jun 2019 at 22:52
No, I am quite sure he doesn’t need injections yet - we would spend half our life at A&E!!! And anyway, as he pointed out to the doctor, he doesn’t need to be shown how to do it because he had plenty of practice already. It’s procedure to have to see the nurse after you have been referred to the doctor, apparently ... just a way of delaying him, in my opinion.

Doctor gave an example of dosage for comparison. Say Caverject delivers 20mg dose to the cavernosa. Muse is a 1000mg dose but less than 10mg actually reaches the cavernosa .... that might have been just right for the extra boost needed. But no, we will not be getting the chance to try :-/
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 Jun 2019 at 08:36
Why don’t you use the Online Clinic that I do and fill out the online consultation where you can explain the circumstances and that you are not getting satisfactory results from the NHS. There is no ED medicine I’m not allowed to buy from this UK certified clinic. Not cheap but neither overly expensive. At least you could try MUSE privately and if it works go to the GP and give it the full Lyn Eyre hair-dryer Alex Ferguson style. I’d be scared ....

If life gives you lemons , then make lemonade
User
Posted 22 Jun 2019 at 08:39
It says MUSE is currently unavailable due to manufacturers

If life gives you lemons , then make lemonade
User
Posted 25 Oct 2019 at 14:11
So after the appointment with Dr Doom in June, we finally saw the new ED nurse today to be shown how to use Viridal - OMG!!! The list of dos and don'ts and potential side effects would make anyone consider giving up sex :-/ She and I did not hit it off, partly because she spoke to us like we were idiots and when I asked about possible national shortages she nearly bit my head off.

The ED nurse was adamant that J must not take any Viagra or Levitra in the next 12 weeks and that it is not permitted under NICE guidelines to have prescriptions for more than one ED treatment (yeah, right). She also said that once you have had a priapism, you are not normally allowed to have any kind of alprostadil, etc, ever again so I suggested she read John's notes which clearly show Mr P's risk assessment & rationale for allowing him to continue. I don't think she knew there was an antidote either.

Anyway, first dose implanted and 12 doses collected from the hospital pharmacy - John could feel some reaction although it took us 90 minutes to get home so not much usable erection.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 25 Oct 2019 at 20:19
I’m afraid Alprostadil never did it for me in either the Caverject or Viridal injection. Maybe I just wasn’t recovered enough but was only ever a part useable erection and shocking after-pain. The Invicorp was a totally different animal. Rock hard and zero effects other than an initial hot flush. Luckily all I need now is my daily Tadalafil which it seems lucky I’m still being prescribed reading others stories.
I really hope it works for you both x

If life gives you lemons , then make lemonade
User
Posted 25 Oct 2019 at 20:29
Caverject was always rock hard for me, it was the 2 hours waiting to make sure it went away that was the problem. Convinced to this day that it helps "clear out the cavities" though.

I found I had to get up and walk around as the only way to get rid of it,
User
Posted 25 Oct 2019 at 20:51
No pain, no itching, no problem so far :-)
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 Oct 2019 at 09:08

 Thank you Lyn and other contributors for this thread, useful background info for someone like me who is just beginning out to seek treatment for ED.


I am trying to hijack this thread with some questions, hope is okay ? I tried to start a new thread, but wasn't allowed?!


I am 12 weeks post op bilateral nerve sparing. Have been on Cialis 2.5 mg and have tried 20 mg extra on 2 occasions recently, sadly little response only, just about useful for masturbation, self/OH. (There was some activity within a few days post op and was very hopeful, but sadly nothing after and was told that catheter can sometimes give that sensation(


I am worried about atrophy mainly.


Penile pump seem to be the best option and scared to use injections etc.


My questions


1. Where can I buy medical grade pumps and approx costs? For various reasons I dont want to go to my own hospital ED clinic.


2. If Cialis doesn't work now, it should later? Or does that mean, tablets will never work for me ever? I was hoping this will be a simple treatment for ED. The urologist said tablets would work even if nerves are removed, but I had it spared and still doesn't work


3. How long will it take for penis to atrophy? Will masturbation stop penile atrophy (embarrassed to ask this)


4.  Any other suggestions.


Thank you in anticipation


Thala

User
Posted 26 Oct 2019 at 09:39
Firstly you need to look at the bigger picture ok. Even with sparing like myself it can take 2yrs before you are anything like normal spontaneous sex. And even then with tablets etc. Your Cialis dose would be better at 5 mg which is the gold standard. At first I didn’t notice size reduction on full erection , but in time it has settled to maybe 1 1/2 inches smaller , although the pump seems to have made it thicker on full erection. Please please please buy a pump and make it part of your every day for the next few years. It will be your saviour and maintain size and health. With the rings it can be used for penetration but without rings it should be used to achieve full size then hold for at least 10 mins. I used the website imedicare.com and bought a soma erect response 2 which has been awesome. You need to buy the jelly rings also. All in you are looking at £200 delivered , but like I say it is imperative for rehab. I still use mine 3 times a week while shaving and I’m 4 1/2 yrs on. With tablets it’s essential for stimulation whether visual or physical to get good erections , so it really is a partner success story. I still find it hard to masturbate but with my wife it is instant now. I did try injections in my early recovery and loved the invicorp which you can buy privately for a real treat on a date night. Be careful of mixing treatments though. Anyway good luck. There is a thread called “ erecting the erection - medication “ which has loads of info from many men and women so try search fir it

If life gives you lemons , then make lemonade
User
Posted 26 Oct 2019 at 11:47
thank you Chris
I have now found several threads on ED, I didnt search the forum well until now and are very informative.
BW
Thala
User
Posted 26 Oct 2019 at 12:00

I was offered a penis pump on the NHS, but couldn’t be bothered. I think Her Loveliness is quite pleased!


However, we did enjoy a bit of ‘tweakies’ on our Caribbean cruise last weak - must have been the weather or the rum punches.


Cheers, John.

Edited by member 26 Oct 2019 at 12:01  | Reason: Not specified

User
Posted 26 Nov 2019 at 00:54

Lyn,


thank you.........I said on other message board I should have taken more time prior to surgery but on reflection I have to say ....I did not know what I did not know.


Your honesty and humour are fantastic.


Good luck to you and other half

User
Posted 26 Nov 2019 at 01:12
None of us know what we don't know; but some think they do :-/

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 Nov 2019 at 05:11

Originally Posted by: Online Community Member
1. Where can I buy medical grade pumps and approx costs? For various reasons I dont want to go to my own hospital ED clinic.


Chris answered this.


imedicare will come and demonstrate the pump on you at home for free (even if you bought it yourself), or you could ask to go to a pump clinic (where it's the same person demonstrating it on you). The pump success rates are doubled for people who have been shown how to use it by a professional.


Originally Posted by: Online Community Member
2. If Cialis doesn't work now, it should later? Or does that mean, tablets will never work for me ever? I was hoping this will be a simple treatment for ED. The urologist said tablets would work even if nerves are removed, but I had it spared and still doesn't work


You should be on 5mg/day, providing you don't have angina. The 2.5mg dose is for people who get unpleasant side effects on 5mg/day. This daily low dose works in 2 ways. First, it improves the blood flow in the flaccid penis and this may help prevent atrophy even if there are no erections. (Normally, the flaccid penis is ischemic, and relies on periodic erections to get a good blood supply to the tissues.) So even if you aren't yet getting erections, it probably is working on you. Secondly, it may help you get erections sooner, and make those erections more powerful.


Full erections achieved naturally or using Cialis (or other PDE5 inhibitors) are more effective in protecting the penis than those achieved with a pump, which only stretches the external part of the penis, and not the internal part (which is a similar size). However, use a pump until you can get full erections, as it will improve blood flow to whole penis, even though it's only stretching the external part of the penis.


Tablets absolutely won't generate erections without working nerves. The tablets amplify the arousal signal carried by the nerves from the brain to the penis, but if that signal doesn't reach the penis, there's nothing to amplify. Tablets will improve flaccid blood flow in this case though.


Originally Posted by: Online Community Member
3. How long will it take for penis to atrophy? Will masturbation stop penile atrophy (embarrassed to ask this)


I heard a figure a couple of weeks ago that only 1% of men on hormone therapy (which also limits, and in some men stops erections) don't have some atrophy after a year, although I don't know if there's any scientific basis for that figure. Anything that generates erections, including masturbation will help prevent this. Aim for 15 mins erection every 2 days (imedicare suggestion). Reaching orgasm is not necessary.


And don't be embarrassed to ask. When you can achieve good erections via masturbation, that will be more protective than a pump, due to the pump only stretching the visible part of the penis.



12 weeks is probably a bit soon to expect anything. 6 months is more typical, but keep up the exercises.

User
Posted 26 Nov 2019 at 08:06
Thank you Andy.

Update:

I bought soma erect 2, that set me back approx £200 and have learned the technique easily and works well. Tip: shaving cream and hand wash soap works as well as the lubricant that comes with it and less messy to clean.

Cialis at 20 mg has helped but only partially, there is an erection, but not hard to penetrate. But I am relieved, it means that even if I dont get spontaneous erections , tablets should help

Thanks for the tip , needing erection 15 minutes every 2 days
User
Posted 26 Nov 2019 at 09:01

Originally Posted by: Online Community Member
Cialis at 20 mg has helped but only partially, there is an erection, but not hard to penetrate. But I am relieved, it means that even if I dont get spontaneous erections , tablets should help


That's a good result at just 12 weeks out. Although one can never be sure in advance, it suggests you are likely to make a good long term recovery.

User
Posted 26 Nov 2019 at 10:07

Last week, on the past recommendation of Chris J, I went on Love Honey and bought a £30 pump.  The quality of it seems very good. 


It's 3 years since my op and after constant improvement it recently seemed to be getting worse.  Although I think some of it is mental, perhaps Autumn blues. 


I looked up how to use it on YouTube.  As long as you pump slowly and not too much it works well.


I'm really impressed with the pump and using it only a few times has made an improvement.  It came in an unmarked quite large box only 2 days after ordering.  I suspected it would go to a neighbour and thought what if the package bursts they'll wonder what we get up to.

Edited by member 26 Nov 2019 at 10:10  | Reason: Not specified

User
Posted 03 Feb 2020 at 18:28

I have just sat and read this thread all the way from the beginning and thank everyone, especially Lynn for sharing so much.  My husband was diagnosed with advanced PC last summer, Gleason 8 with tumours on about 6 vertebrae,  he started on 12 weekly injections of HT Decapeptyl, we live in France so treatment is possibly different here.   In Nov/Dec  he had 10 sessions of RT, not on the prostate, but on one of the spinal tumours that was threatening spinal compression.  The docs here prefer to use Abiraterone as a first line defence, so he was given the decision between chemo or Abiraterone and has now been on Zytiga for 2 months.  Prior to any of this, even after 40 years of marriage we had an active, and very good sex life.  We have been very lucky in that it has always been an important part of our marriage for both of us, so never any problems before.  The effects of all the treatment has therefore been sudden and brutal for us both.  The oncologist prescribed Vitarol cream which has only ever worked once, and even then it didn't do exactly what it had promised.  As my husband has had a triple bypass some years ago, he has to take heart medication, so this rules out any viagra type tablets.


We are considering a pump, but the one suggested by the oncologist is not covered by health insurance here and costs nearly 400 euros - apart from the fact that we would find that quite a lot of money to find, it is a concern that we may shell out that much money and then find it doesn't work.  So I'm wondering if it's just best to buy a cheaper one over the internet and give that a try first.


I am pretty sure that my OH's libido has diminished considerably, he says not, but I suspect he's just being kind and doesn't want to upset me but we both feel a real sense of grief for the loss of the intimacy we previously shared.  He's loving and still very affectionate, but sometimes that can make it worse,  I am finding it really hard (or not, actually!) to accept that we may never make love again.  There aren't the support groups over here that I know are in the UK, the oncologist will talk quite freely about sexual matters but obviously his time is limited and there isn't anyone else to talk to.  


His PC was found 6 months ago after a routine blood test, he had no symptoms at all, so that fact alone was a shock, to discover it was already in his bones completely floored us both - we are finding it very difficult to get back to the busy upbeat sort of people we were not very long ago!  


Thanks for listening - I'd be interested to hear about the efficiency, or not, of any of the cheaper pumps available.


 


 

User
Posted 03 Feb 2020 at 18:59
Pumps definitely work, the fact you want it to work will be a big help especially if you can make its use all part of the fun.

User
Posted 03 Feb 2020 at 19:07
Even a cheap pump can create a full erection. They can’t really fail as it is basic physics. The problem is getting the proper size rings that will hold all the blood in and keep it hard. It’s never the same and the penis can have a floppy hinge and feel cold , but it does the trick. The rings supplied with my proper pump are about the size of a polo mint and super stretchy. Maybe try an adjustable sliding ring from a cheap website

If life gives you lemons , then make lemonade
 
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