Husband who won't talk about ED

User

Posted 30 May 2015 at 01:21

I am feeling awful tonight. For the first time since OH was diagnosed, I feel really down and in despair for the future. Tomorrow it is six months since RRP. OH is still on 2-3 pads a day, and there is little improvement. Hehas been on cialis daily, but has no movement on the erection front. He is starting to become despondent.

He won't discuss anything. It crucifies him to talk about ED. he won't let me near him. Tonight for the first time, I got a glimpse into his head. He said he was terrified he would leak, nothing works, feels absolutely useless and doesn't want to try anything at all because it just makes him feel worse.

I have no idea what to do. I can (and do) tell him it doesn't matter to me, but it makes no difference.

Please give me some pointers.

User

Posted 31 May 2015 at 18:34

I'm not sure about all this. Without a doubt Louise's OH needs support with how he is or isn't coping with the SE's of having treatment for cancer. This is extremely difficult for Louise also.

Sorry Mo I think you always offer helpful advice but regarding your point 2 in your last post i really dont think that is helpful. There will be many men who may read that and worry if that is the case. I've always advocated how the emotional/psychological impact of our condition is too often overlooked. I would hate to think men may have the additional worry that their partners may look elsewhere as they have lost their sexual function.

There needs to be more support for men regarding this issue prior to and after treatment.

I can't imagine how i would feel if my wife had a sexual relationship outside our marriage. I have supported a friend who went through this and I couldn't start to explain the enormity of the devastation. I know it comes down to.personal values but in my opinion that option would be very wrong.

Bri

Edited by member 31 May 2015 at 18:36 | Reason: Not specified

User

Posted 31 May 2015 at 20:26

Hi Louise,

I am one of the ladies whose late partner also wouldn't discuss anything and because of his advanced disease and the side effects of treatment, our once lovely sex life ended very quickly. I remember feeling terribly frustrated, lonely and most certainly did contemplate an affair or leaving and I also felt he was not prepared to try any form of help that might have made things better.

From the little things he did say over the months, like your husband ' you shouldn't have to put up with this' and the eventual comments about how he saw his body, it's uselessness and the embarrassment he felt over having an urethral then supra pubic catheter, the occasional leakages and the implications of the genital lymphoedema he developed, I came to resentfully understand the emotional impact the disease had on him and why he acted as he did. All the energy he had was caught up in managing some aspect or complication of the Pca.

It didn't necessarily make things easier for me, the utter sense of loss and abandonment was still there. Of course, I see it now as the effect of the disease but it was hard not to take it personally, believe me !

Other posters are right, there isn't enough awareness or support over this aspect of illness and treatment and it can be devastating.

I think that trying to persuade someone who isn't right now persuadable is unlikely to work, you can only express your honest and loving feelings and hope that your husband will maybe start to open up, it is all uncharted territory, that is the difficult thing about this illness but that is also why this forum exists, to listen and support !

Many regards, Fiona.

User

Posted 27 Jun 2015 at 09:54

Oh I'm sorry, I didn't mean to suggest such a thing,, I was merely throwing some levity into the mix or thought I was.

User

Posted 30 May 2015 at 12:54

Originally Posted by: Online Community Member

I think Luther is correct- the incontinence is the real issue. He always said he didn't want to try anything until that was sorted, but it's taking longer than he expected, and I'm trying to make him understand that in the meantime he needs to 'use it or lose it'

I don't know how to move him on to the next stage. It's a mental thing, like you say- he's got to feel randy. And he doesn't. The incontinence is completely masking it

Louise,

I know how difficult it is to feel randy when you are squirting urine every time you move about....
His continence will improve over time I'm sure

......Meantime it may help if he worked on things in the shower ( with or without you ) as he will be less conscious of leakage there?

User

Posted 30 May 2015 at 20:59

Noooooo. I wouldn't let him go to an appointment on his own until he starts being truthful. The nurse will at the moment be believing that all is well, because he has said it is fine. In turn, she will be telling the GP that all is well and before you know it, they will stop the prescriptions because his medical notes say he doesn't need them.

I know marriages that have ended; I also know of women who have affairs because their husband will not admit the problem of ED. He might be sick of talking about private stuff but I wonder if he understands the impact on you?

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

User

Posted 30 May 2015 at 23:01

How about relate?

You can go alone and talk to them. He can go alone, or with you. I am not sure if he is aware of how seriously this is impacting on you, and your relationship, if he is made aware maybe he will change? Maybe not, but worth a try?

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 30 May 2015 at 23:03

Louise

I see you are mid 40s so I presume your hubby is not much different. I am 62, and the age difference may account in part for the different attitudes.

I have always been fairly easy going, and try to get positives out of the worst of situations. For me, it is a coping strategy that works.

I hope for both your sakes, you are able to resolve the impasse soon - you both clearly cannot carry on indefinitely like this.

Paul

Stay Calm And Carry On.

User

Posted 31 May 2015 at 10:40

That sounds like a sensible plan Louise. His stubbornness may cost him dearly and if you are not able to get through to him then help is needed. If that doesn't happen I can only see three outcomes 1. I doubt from what you are saying that your husband would be content to just give you sexual pleasure in any way possible. So you would have to accept a platonic marriage they can and do work.

2. You will seek a sexual relationship elsewhere and who could blame you or say that would be wrong, but could he cope with that and what happens if in the fullness of time he regains EF and the desire.?

3. This stubborn refusal to talk with you and face up to what could destroy your marriage becomes a self fulfilling prophecy.

I suspect you understand and know this but getting the importance of it across to your OH is going to be a challenge. If you can just get him to start then all of this will spill out.

Going to see relate on your own is not you taking ownership of the issue at all but the counsellor there will be able to give you some really good advice on how to get this conversation with your OH started so you can move forwards.

I really feel for you as your OH is actually in a much better place than he realises. Many men here who have advanced disease where continuous HT has chemically castrated them destroying their Libido will never get the chances to try that your OH has. Some try to still give pleasure to their partners even though there is nothing there for them because they can and they know how important that can be.

Best wishes

User

Posted 31 May 2015 at 15:12

Hello Louise.
I do understand what you are saying, I also understand why your other half feels like he does and I do also understand that he hates talking about it.

As others have said perhaps he doesn't realise just how much it means to you, not just the sex or lack of, but also the fact that he won't discuss it with you.

Many years ago, we went through a difficult patch, well I did - he was perfectly happy!
I couldn't make him understand what the problem was.
They weren't, if truth be told, really major things but it was the fact that he wouldn't discuss them that was causing the problem. My argument being that if these matters are trivial to you but not to me and you say you love me, why can't you address them.

It became a major thing because nothing was resolved. In the end, I sat and wrote a long letter to him, explaining how his lack of understanding was making me feel, how undervalued I felt because I wasn't important enough to him for him to sit and discuss the problems with me. It was a very honest letter and I told him exactly how I felt and exactly how he made me feel.
I left it on his pillow one morning when I went off to work.
I came home to a man who was very apologetic and had obviously had time to think in the five hours I was out.
Life got a lot better after that. Mainly because there was give and take on both sides.

Now I realise that there is a different between my then silly problems and your major ones but would it be worth it to write him a letter, expressing how much you love him and how much this lack of communication is putting a strain on that love.
There's a lot that can be written down because there is no interruption by another angry or distressed partner.
I should warn you that writing it down can be quite emotive for you, but maybe it would be therapeutic for you in any case.

There comes a time when we all have to weigh up the pros and cons of a relationship. I think the couple that manages to avoid that has been very lucky. They are probably the ones who go through a whole marriage without cross word.

I wish you both well. Your man feels he is no longer a man, certainly not the man you married. He feels less than a man and because of the strength of that feeling he cannot get his head around the fact that you will happily accept him as he is.
The sexual future to him is a long way away and might never materialise.

I know from my own man that incontinence was a bigger issue than sex but then that was because he is a lot older than yours. I'm sure he would have coped with leakage if he'd had to but it was a massive issue for him leading up to his procedure.

All the best
Sandra

We can't control the winds - but we can adjust our sails

User

Posted 31 May 2015 at 19:13

The difference Bri is that you have faced the issue together and not excluded your other half. I have referred many times to John's fears about me doing such a thing, particularly because it happened to our lovely friend. On the wives' group (the American one not the FB one linked to this forum) there is a whole section for the wives who cope by having extramarital affairs ... generally, these are the wives of men who refuse to discuss, seek help or try to get proper treatment.

We keep saying this is a couples' disease - communication is a gift and a necessity.

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

User

Posted 31 May 2015 at 19:43

I agree that this is a coupes disease but at the point an extra-marital affair takes place as a result of the disease I think that link is severed.
Yes discuss with each other and point out the impact this is having. But be open about it. Resorting to secret liaisons is wrong.

Bri

User

Posted 31 May 2015 at 23:21

No, you haven't upset me, I didn't read it like that.

I understand some women might find someone else to have sex with, but I'm not one of them. But as you say, it's an option some take

I just appreciate any comments from anyone. It means there's people out there listening to me rant

L xx

User

Posted 01 Jun 2015 at 07:59

Originally Posted by: Online Community Member

I don't want to sabotage Louise's thread with my thoughts. But if the man has lost his libido for whatever reason ie treatment or the psychological impact of treatment I think it would be difficult to engage in love making of any kind. So I'm not sure it's about the man not wanting to or not willing to give pleasure if he wanted to, its more about being unable to in the way he would want to or used to.

Bri

Yup, you're right. And it's about the fear too.

User

Posted 01 Jun 2015 at 20:43

Hi Louise,

You have been given some really good and helpful advice both from the Guys and the Girls my take on this is coming from a different perspective . Remember the old saying Men are from Mars and Women are from Venus, us girls we like to chat don't we , we like to hash over emotions , what he said, what she said, does he still love me, why did he say that you know the kind of thing . That is the way our brains work, we are complicated if there is a problem we like to talk about it and find solutions and then talk about it some more because just maybe we can find a better solution . (A bit like dress shopping , we never buy in the first shop but always end up back in the first shop after checking out every other option)http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

This is going to be a bit long winded but bear with me.

And then there are the Guys , first shop , first rail yep that will do home now to watch the football.

I am not really sure about the advice to TALK because in my experience this always ends in disaster quite simply Guys don't like talking . They don't get it , us Ladies always want to make them like us , we want them to open up , and share, a problem halved and all that.

ED and Men well it is not a combination that goes together, we can make all of the right noises and tell them how much we understand when the truth is we don't understand, how could we ever understand. Men are connected to there Willy's , there whole life revolves around it , it is what defines them as men. Go right back to cave paintings and yes they all have erections. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

No wonder your OH doesn't want to TALK about it his sense of failure must be immense. Sometimes we want our men to talk because that is how we deal with things , we force them to be more in tune with there feminine side and then we moan because they are not manly enough. (I don't know how you guys put up with us )http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

Any way after my long winded natter http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif . It is self confidence that your OH needs way before jumping him in the shower, sometimes taking a back seat and not confronting things will give better results than trying to force an issue. Then of course if that doesn't work then there is always the (make him think it was his idea first routine )http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

I really hope that you can find a solution , extra advice would be to just let nature take it's course. Life has a funny old way of working out .

BFN

Julie X

Edited by member 01 Jun 2015 at 22:49 | Reason: Not specified

NEVER LAUGH AT A LIVE DRAGON

User

Posted 02 Jun 2015 at 18:12

I know several cases where having married a guy women have said on reflection they expected the men would change (more to their way of thinking) after marriage. Rarely will men change inbuilt attitude though of course marriage does sometimes call for compromises. But some ladies have subtle and persistent ways of getting their way - ask me how I know!

Barry

User

Posted 18 Jun 2015 at 13:41

Louise,

the best point in your post is that there was a result, so it can be done, he can have an erection, and if he can do it once, he can do it again, you and he can do it again. Really glad to read this for you both.

It may help when you next "firtle" about if he stays on his back? That way at least gravity affecting the bladder may help prevent any leakage? Put a towel down JIC.

As Lynne says Cialis is for aiding circulation to repair the damaged areas and tissues, although I have heard mention that Cialis is an event drug if taken in sufficient large quantity. Viagra is meant to be the "event" drug. Like the reaction of men to the operation, continence recovery, EF recovery and all so, so individual despite us all having the same basic ingredients interfered with in the same basic way.

Have a great weekend firstling! ;-)

atb

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 18 Jun 2015 at 21:15

Louise

sounds like that was a major milestone and how lovely of you to make sure it was used wisely so as to avoid any potential malfunction. It sounds to me like your patience will be greatly rewarded.

I think it is still really early days for the whole continence thing, reading on here as a relative newbie there seems to be a huge difference man to man, procedure to procedure. The good thing is you are relaxed about any leakage or spurtlings that must put your OH in a much better place than some.

6F2 wow ... retirement is working out well I guess? I think sometimes a warm flow of water is a relaxing and comfortable environment so maybe it just puts you in that "nice place"

Hope everyone has a terrific weekend, I know all of us at Leicester MOS will be having a grand old party

Best wishes

Show Most Thanked Posts

User

Posted 30 May 2015 at 09:49

I think your post highlights the impact these side effects can have on men both from a physical and emotional perspective.

It is still early days for full rehabilitation. Has he been referred to the ED nurse for support. Has he been prescribed with a pump to aid rehabilitation. There is a mantra on here that says "use it or lose it". If your OH is struggling with all this, which is understandable, he should at the very least be trying masturbation if only to stimulate it.
It can take a few years to gain function and it's only been 6 months. Likewise with the continence.

If your OH wishes to virtually chat to me about my experience he is more than welcome to message me

Take care

Bri

Edited by member 30 May 2015 at 09:51 | Reason: Not specified

User

Posted 30 May 2015 at 09:53

Louise

We are all different. I was probably slightly better than your OH on 2 pads per day at 6 months, and have found that Sildenafil helps, but nowhere near enough for penetration. I exercise regularly with a pump, but hate the rings for a maintained erection, so I have not now had intercourse since the day before my op 13.5 months ago.

Yet, and still on one pad per day, at 62, I am enjoying life more than ever. I feel blessed that I am in the cure camp and can potentially look forward to so much I might have missed out on. I think a lot of that is down to being retired - if I was working, I don't know that I would feel so positive.

Without the op and diagnosis, what would the outlook have been? Reading stories on here is heartbreaking at times - is your OH aware of what this disease can do to people not in the cure camp?

Encourage him to look at the positives - holidays, grandchildren, enjoying whatever hobbies he has, and focus less on the negatives. - they will look after themselves. It seems it's just an attitude of mind.

We help each other climax, but in all honesty my OH is not a minx, and she is happy with that - I wish she were more adventurous, but there we are.

Be patient, look for the positives in your lives, and things will happen. Unfortunately, the more you push it the more difficult it will be for him.

Sorry I can't be more helpful.

Paul

Edited by member 30 May 2015 at 10:19 | Reason: Not specified

Stay Calm And Carry On.

User

Posted 30 May 2015 at 10:40

Hi Louise

Im due to have this operation on the 15th June . Im only 48 and terrified of the aftermath . But I think the key is being able to talk to your partner and reassure him , although you say this is difficult . But keep trying . I can 100% empathise with what he is going through , as it must be horrendous losing such a "major" part of your manliness . Im yet to find out , but El and I have promised we will get through this rain or shine by communication .

Keep trying and then there is always councelling which can be very effective.
Best wishes

User

Posted 30 May 2015 at 10:48

Louise, have you read this - particularly my second post? Will he read it if you ask him to?

http://community.prostatecanceruk.org/posts/t9839-One-wife-s-story-of-ED#post119001

Edited by member 30 May 2015 at 11:46 | Reason: Not specified

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

User

Posted 30 May 2015 at 11:08

Originally Posted by: Online Community Member

He has been on cialis daily, but has no movement on the erection front. He is starting to become despondent.

Please give me some pointers.

I don't think he understands how his body or the meds work. Cialis daily will not cause any 'movement on the erection front'. Feeling sexy causes movement, not tablets. The daily Cialis is drawing extra blood to his pelvic region, carrying oxygen to help with healing any bruising. That's all. If he wanted an erection, he would need to take maybe 4 tablets together (I am assuming he is on 2.5 or 5mg here otherwise it would be dangerous) or get a prescription for Viagra or Levitra and take that a couple of hours before (and not take his Cialis) BUT HE WOULD STILL NEED TO FEEL RANDY for it to work. If he is leaking and frightened and worried, no tablet is going to give him any movement.

I don't know how you get him on to the next stage, but he needs to learn how to orgasm without an erection. I did that with John the day his catheter was removed; took him by surprise so he didn't have any choice but go along with it. Lots of lube (perhaps buy one of the Durex lubricants next time you are at the supermarket, they are nice & slippery and you will need lots of slippery). He isn't just going to wake up one morning with an erection - his body doesn't work like that any more.

The referral to an ED nurse or andrology clinic is pretty crucial. Tell him to get an appointment with the GP and then go with him to make sure the conversation happens. If there is no ED service in your area, then ask the GP to prescribe an Osbon Erecaid vacuum pump - they are approved by NICE as a treatment for men post-RP.

Time for some direct action on your part, methinks!

Edited by member 30 May 2015 at 11:10 | Reason: Not specified

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

User

Posted 30 May 2015 at 11:09

Hello Louise,

Like others, I can relate to how your husband is feeling at the moment.
For me my ongoing incontinence issues were the main worry regarding ED rehabilitation also.

I was probably still using approx 4 pads daily at 6 months post op, but am now thankfully down to 1 or maybe 2 on a bad day at 11 months post op.

It's all rather clinical I know, but I found that using a vacuum pump with or without Cialis produced a usable erection. To help allay my worries of leakage I also use a condom, and although not ideal, it works for me and my wife at the moment.

Slowly my continence and ED is improving, so meantime I've found this method is helping us with our sexual relationship..... but I have to admit that sometimes we both burst out laughing and we have to abandon 'operations' http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

Maybe I'm fortunate in the fact that my wife ( and I ) can see the funny side of things at times and this in turn does help ease any anxiety that may be in the background.

Not sure if your husband has had nerve sparing surgery, but if he has I was told that it could take 2 or even 3 years to regain full erections in some cases, so very early days yet.

Best Wishes

Luther

User

Posted 30 May 2015 at 11:19

Ah, I just rechecked your profile and see that the ED nurse and pump are already sorted.

So, how often is he using the pump? Do you know? In the early days, John was using it exactly as instructed by our nurse, 5 reps three times a day. When he woke up, after his shower and then before bed. Is he getting fully engorged in the tube and if so, has he tried using the constriction rings yet? He won't leak while the ring is on (well, he might but lie to him).

If he has nailed using the rings, it is time to try doing it with you!!! If he is worried about leaking, he could use a condom but honestly, trying to aim a pump-induced erection at the right hole is so funny he will forget about his bladder for a few minutes.

When is his next ED appointment? I would go with him, and ask about Muse pellets or Caverject injections. She might give him an injection there and then to see whether it works and give him a bit of an emotional boost so don't make the appointment for a time when you need to rush straight off somewhere else.

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

User

Posted 30 May 2015 at 12:39

Thanks for the replies. i have read lots of literature, but he doesn't tick like that. He just shuts it all up. I keep telling him it's not his problem it's ours, he says I dont understand. I say I know I don't, tell me how it is. He says he doesn't want to talk about it. We go to ed nurse. She asks his he is, he says fine...

We have a Ved. I read on here he needs to use it daily. He did this at first, but hasn't taken it out if the box in two months. The one time he tried it with the rings and me wasn't a success, and he won't try again. I have lube. He won't let me near him.

I have tried to make him understand that it's a joint problem, and that it's a long term thing, but he's so very down at the moment. He's normally the most positive person I know, so it's a bit of s shock.

I don't know how to move him on to the next stage. It's a mental thing, like you say- he's got to feel randy. And he doesn't. The incontinence is completely masking it

User

Posted 30 May 2015 at 12:54

Originally Posted by: Online Community Member

Louise,

User

Posted 30 May 2015 at 14:12

Louise

I am really sorry your OH is going through all of this anguish and equally sorry about how this affecting you. The inability to discuss sexual matters is such a common and understandable problem, there really should be much more accessible help. Please don't give up in trying all you can think of. I know some will say a marriage can survive without sex and it can, but it really should not have to. Once your OH realises that he is going to have to think differently and that things he may have thought distasteful out of respect for you become totally acceptable if you are ok with them. Getting continence back can take time so not even attempting to get erectile function back as quickly as possible could introduce worse problems mentally as time progresses.

He is so lucky that you care so much that you would ask for help and be willing to try anything to make things better.

Lyn is a really open and plain talking Woman Trust what she says I am sure many people of both sexes have benefited from her wisdom.

There are others who are also very good at sharing some very personal and intimate things here. Does your OH ever read the posts or would he if you asked him to?

Talking about things that may be stimulating for him might help if you can get him to open up. Pillow talk where you just drop the odd suggestion in or surprise action to try and get close enough to him to try something.

I really do hope you can work through this together or get some professional help to get things moving.

Best wishes

User

Posted 30 May 2015 at 14:22

Originally Posted by: Online Community Member

Without the op and diagnosis, what would the outlook have been? Reading stories on here is heartbreaking at times - is your OH aware of what this disease can do to people not in the cure camp?

We help each other climax, but in all honesty my OH is not a minx, and she is happy with that - I wish she were more adventurous, but there we are.

Be patient, look for the positives in your lives, and things will happen. Unfortunately, the more you push it the more difficult it will be for him.

Sorry I can't be more helpful.

Paul

Paul whilst I understand you are being helpful i have to say if only it were that easy.

It frustrates me that not everyone, and I don't mean you, understands the devastating impact these side effects can have on men.

I don't really believe a lot of the medics understand this either which is why the support is so inconsistent and lacking in some areas.

I've suggested some of the physical stuff he can do but it's the psychological and emotional side that isn't such a quick fix. If only it were.

Bri

User

Posted 30 May 2015 at 17:52

Louise, the ED nurse is for you as well as him. I wouldn't have survived without our Zoe. Why not give her a ring and tell her that things are really, really not fine - hopefully, she will be a bit more probing the next time he sees her.

Our urologist says it is a common issue - he asks his patient how erections are recovering, they say "fine" .... but he (the uro) looks at the wife rather than the husband because her face gives a truer answer! He once told us that 80% of his patients claim to have recovered erectile function when they see him but he believes at least half are lying.

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

User

Posted 30 May 2015 at 18:06

Hi Louise1969,

Would it help if he spoke with someone who has been in his position?

Regarding dealing with any leaking, have you both considered get together in the shower or a bath or outdoors, anywhere where it will not matter. Maybe telling him it does not matter to you could be rephrased, it matters to him. The head, HIS head needs to be able to come to terms with what is happening or not happening to the body to start to face up to and then deal with any issues.

As Lyn points out the meds do different things, and, if he and you have not had their use and potential effects explained to you, then you may have unrealistic expectations of what can or could be achieved and also may not be using them in the way to achieve optimum results.

It is still early days for him. As in line 1, happy to chat about this to either or both of you, if it may help?

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 30 May 2015 at 19:12

Brian

I thoroughly understand what you say. I was only trying to explain how it's been for me and how I've coped. Finding myself in the cure camp has made me determined to get the most out of my life, and deal positively with the negatives. It could have been a lot, lot worse, and it breaks my heart seeing the suffering this disease brings to those who are diagnosed too late.

We are all different, and deal with difficulties in our own ways. I try to be open and honest, hoping it helps others. That so many men find difficulty in opening up is very sad as I'm sure it would help to cope with their predicaments.

Paul

Stay Calm And Carry On.

User

Posted 30 May 2015 at 19:23

Thank you lyn. I am going to call the ED nurse next week and let her know what's going on. I've always gone with him for these appointments, but I'm thinking of not going to the next one to give him chance to talk. What do you guys think?

Cb99- I would love him to talk to ANYONE. But he won't. He says he's sick of discussing private things and isn't going to do it anymore. I get it about the meds, but if he isn't feeling sexy, is he best to stay on the cialis for the time being? There seems no point in upping the medication if he's not wanting to do anything

SF2- I think the fact that he has (touch wood) been cured is part of the problem in a weird way. He had no symptoms so went from being completely well to incontinent and impotent. And because it was caught early and he was cured, everyone keeps telling him he's been very lucky. And he doesn't feel it

User

Posted 30 May 2015 at 20:59

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

User

Posted 30 May 2015 at 22:11

Ok Lyn. I just thought he would maybe find it easier if I wasn't there.

I have tried to explain that it's not him with a problem it's us, but he says I don't understand. And I dont, because he won't talk to me. It's just the type of animal he is- he's never been any different where sex is concerned. A traditional sort of man. And a very sexual one. He is also a very stubborn one, and will not be pushed in a direction he doesn't want to go.

Today has not been a good day.

User

Posted 30 May 2015 at 23:01

How about relate?

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 30 May 2015 at 23:03

Louise

I see you are mid 40s so I presume your hubby is not much different. I am 62, and the age difference may account in part for the different attitudes.

I have always been fairly easy going, and try to get positives out of the worst of situations. For me, it is a coping strategy that works.

I hope for both your sakes, you are able to resolve the impasse soon - you both clearly cannot carry on indefinitely like this.

Paul

Stay Calm And Carry On.

User

Posted 31 May 2015 at 09:55

Thanks guys.

My husband is 58. He is normally an incredibly positive person, which is why it's such a shocker. I really think he thought he would be dry immediately and after a couple of months rest, he'd be jumping off the wardrobe again. (That IS a metaphor btw)

I don't see the point in going alone to relate - the problem is ours not mine. I think he thinks the problem is his. He keeps saying 'you shouldnt be having to put up with this'. I keep trying to tell him that, to me, sex isn't important, it's sex with him that's important. If, a million miles down the road, we can't do it, then we can't. But we still need to be intimate. I don't think he gets it.

I'm going to leave it now until we next see the ED nurse 17th june. There's no mileage in keep pushing without any idea how to break through. I think I'll phone and speak to her a few days before, and give her advance warning!

User

Posted 31 May 2015 at 10:40

3. This stubborn refusal to talk with you and face up to what could destroy your marriage becomes a self fulfilling prophecy.

I suspect you understand and know this but getting the importance of it across to your OH is going to be a challenge. If you can just get him to start then all of this will spill out.

Best wishes

User

Posted 31 May 2015 at 15:12

Hello Louise.
I do understand what you are saying, I also understand why your other half feels like he does and I do also understand that he hates talking about it.

As others have said perhaps he doesn't realise just how much it means to you, not just the sex or lack of, but also the fact that he won't discuss it with you.

All the best
Sandra

We can't control the winds - but we can adjust our sails

User

Posted 31 May 2015 at 18:34

I'm not sure about all this. Without a doubt Louise's OH needs support with how he is or isn't coping with the SE's of having treatment for cancer. This is extremely difficult for Louise also.

There needs to be more support for men regarding this issue prior to and after treatment.

Bri

Edited by member 31 May 2015 at 18:36 | Reason: Not specified

User

Posted 31 May 2015 at 19:13

We keep saying this is a couples' disease - communication is a gift and a necessity.

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

User

Posted 31 May 2015 at 19:43

Bri

User

Posted 31 May 2015 at 20:26

Hi Louise,

Other posters are right, there isn't enough awareness or support over this aspect of illness and treatment and it can be devastating.

Many regards, Fiona.

User

Posted 31 May 2015 at 21:58

Thank you all. Everything you are saying makes me feel less alone.

I know why he is acting the way he is. I understand it too. It's the type of man he is. The problem really is that he can't see past his own problem.

Mo- thank you for your post. As I said in my previous post, I don't miss sex, I miss sex with him. So I won't be looking elsewhere for it. And should I have to manage with a non- penetrative sex marriage I will, although I don't agree this means platonic. My husband has always been stubborn (you should see his school reports from the teachers he didn't like!), so I guess it's not going to change! And I know we've been really lucky. And maybe in time he will realise this too. But he had no symptoms (went to gp to have his ears syringed, and doc offered well man check) and has gone from completely well to incontinent and impotent in six months. He doesn't feel lucky.

What is frightening me at the moment is that he isn't doing the exercises with the ved - (although he did say - in a very roundabout way- that it's getting plenty of exercise) - which might cause him to lose ability in the future. This is very in character with him. He avoids things he doesn't want to do, choosing to do them when they become imperative. This is frustrating for me as I'm the opposite! The other thing that is concerning is that he won't let me try. I really think it's the continence that's the main issue at present. I hope that as that improves (please God make it improve quicker!) there may be other improvements.

Sandra- I love your idea of a letter, and can't understand why I didn't think of it. I'm a good letter writer, and I will certainly think about this. The difficulty is getting him to read it when we both work at home and the kids are there in the evening, but it's worth a go. And you are absolutely right- it's not the lack of sex that concerns me, it's the lack of discussion.

Bri- I agree with you, it is wrong, and I wouldn't do it. Don't even want to. This is the 'for worse' bit of the marriage vows, right?

Lyn - I'm interested In your facebook group - what is it called please?

Fiona- thank you for your post - I think you are right - it's a long haul!

Today, it's as if the last two days didn't happen. He's given no indication of any problem at all. But nothing has been solved. This is also typical of him. I'm just a little scared that by the time he realises I was right (as, of course I always am!) it will be too late to repair the physical damage caused by not doing the exercises.

User

Posted 31 May 2015 at 22:43

I have been almost exactly where you are - and now I am in a very different place. You will get there, somehow and at some point in time.

Put the 'by the time he realises it will be too late' idea out of your mind. Failing to use the VED now will not prevent him from ever recovering - if his nerve bundles repair then he will regain erections. Not using the pump just means that it will be smaller in girth & length when it does happen - not the end of the world when set against other problems people face.

I am not a member of the FB group but there are other wives here that are - someone will no doubt pm the link to you.

I still have all the letters I sent John - he never gave any indication that he read any of them but I know he did. It meant that I at least felt I had expressed my feelings. Sometimes I re-read them just so that I never forget how far we have come :-)

Edited by member 31 May 2015 at 23:03 | Reason: Not specified

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

User

Posted 31 May 2015 at 22:57

Thanks Lyn,

That's good to know.

I'll keep my fingers crossed for his remaining nerve bundle.

User

Posted 31 May 2015 at 23:01

Bri

I think you have slightly misunderstood my point. I would never promote an affair as a solution and I know how many men are frightened and concerned that their wives or partners might do this. However the fact remains that if you cannot discuss things and cannot express the way things make you feel then that becomes an escape that some will seek. I am also accutely aware that some Men who have completely lost interest in sex or have become impotent following treatment think that that is perfectly OK and their wives or partners should just accept that and get on with life. There is no attempt to give any pleasure of any description that they still could if they wanted to. Some women will (and do) go many years with no sexual contact at all and be happy, some may take care of that by DIY others just spend years agonising over what they have lost and that can be harmful.

The mental anguish and anxiety of impotence is a shared thing however it comes about. I have frequently said on here that far more help should be available and easiy accessible to anyone affected by this.

The point I was trying to make and I apologise if it was poorly worded is a stubborn refusal to discuss, talk, acknowledge,share etc. because "that is just the way he is" makes sad but all too frequent reading.

I hope that those very Men who would fear their wives going and having an affair will read this and know that the majority of wives never would but the chances of that happening are massively reduced if they can do the talking and discussing and sharing things that Louise's OH is unable to at the moment.

Louise I apologise profusely to you if my words were upsetting.

User

Posted 31 May 2015 at 23:21

No, you haven't upset me, I didn't read it like that.

I understand some women might find someone else to have sex with, but I'm not one of them. But as you say, it's an option some take

I just appreciate any comments from anyone. It means there's people out there listening to me rant

L xx

User

Posted 01 Jun 2015 at 01:24

Sometimes I tell John that I might ... but he points out that I haven't actually had any offers in recent years :-)

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

User

Posted 01 Jun 2015 at 06:15

Originally Posted by: Online Community Member

Sometimes I tell John that I might ... but he points out that I haven't actually had any offers in recent years :-)

That brought back memories!

Years ago I (before PCa or anything like that) I would (half??) jokingly say I'd go on the streets but he used to tell me (half??) jokingly I'd get change out of sixpence and that was old money!

I know he didn't mean it (I hope he didn't mean it)

Good luck Louise. It's a long old road you'll be following but you will both get there in the end.

He'll come to to realise at some point just what he stands to lose if he can't open up.

We can't control the winds - but we can adjust our sails

User

Posted 01 Jun 2015 at 07:26

Bri

User

Posted 01 Jun 2015 at 07:59

Originally Posted by: Online Community Member

Bri

Yup, you're right. And it's about the fear too.

User

Posted 01 Jun 2015 at 20:43

Hi Louise,

This is going to be a bit long winded but bear with me.

And then there are the Guys , first shop , first rail yep that will do home now to watch the football.

I really hope that you can find a solution , extra advice would be to just let nature take it's course. Life has a funny old way of working out .

BFN

Julie X

Edited by member 01 Jun 2015 at 22:49 | Reason: Not specified

NEVER LAUGH AT A LIVE DRAGON

User

Posted 01 Jun 2015 at 21:14

"Men are connected to their willies; their whole life revolves around it"

I splurted my tea .... white linen trousers ruined ☕️

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

User

Posted 01 Jun 2015 at 22:13

Julie

You are so right. And I am so grateful to you for writing this. It is him down to a T.

I am frightened we are not talking about it because I feel I need to. I don't seem to be appreciating that he is maybe just as frightened about talking.

I have decided to let it alone until we see the ED nurse on 17th June. He's had a good day today- has spent the day mainly driving, so hardly any leakage at all- so he's in a good mood tonight.

thank you for your input. It has made so much sense

Louise

User

Posted 02 Jun 2015 at 00:12

Sorry Lyn, another outfit ruined if you pm me I will send you my bank details and I will pay your dry cleaning bill's for the last 2 years.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

Many of my girlfriends , scratch that ALL of my girl friends ring and say we need your help (I should have been an agony Aunt) the calls generally go something like this.

Anyway I said to him , I need to talk. His reply OK what do you want to talk about, her reply what does he mean by that

Anyway We should talk, his reply OK what do you want to talk about, her reply what does he mean by that

What we need to do is talk about this, his reply OK what do you want to talk about, her reply what does he mean by that

If we could just talk about this, his reply OK what do you want to talk about, her reply what does he mean by that

There is no point ignoring me, we need to talk about this. his reply OK what do you want to talk about, her reply what does he mean by that

Are you listening to me , We need to talk , his reply OK what do you want to talk about, her reply forget it I knew you weren't listening.

And so it goes on, then they say anyway we talked (and then he fell asleep what do you think he meant by that) ?

I hope you are smiling at this point guys.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif Because you are all thinking sorry my Willy was talking to me and I didn't hear a word you said .http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif.

Sorry to hijack your post Louise , be patient if he can't , won't or is unable to Talk at this moment , he will do just let him do it in his own time. Men and there Willies have a life of there own.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif all will be OK .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 02 Jun 2015 at 01:33

Talking can get you into trouble, and not always understood, best not to.

Steve

User

Posted 02 Jun 2015 at 07:26

read this with a lot of intrest some of my views

wife may say we need to talk

hubby knows this will upset the wife talking about

answer is for him not to talk about it then it doesnt upset the person he loves more than life

hubby finds it difficult to put into words how he feels and what he fears as men are not supposed to be afraid arent they

the shame of what is happening to him gets overwhelming

I am still doing my best to make a fuss over rlass, but I dont know what the future holds, and I have always felt that I have had some control but it feels like that has gone

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 02 Jun 2015 at 18:12

Barry

User

Posted 18 Jun 2015 at 13:23

SO.... Last weekend was interesting. A real up and down weekend.

Literally.

We went away with work, staying in a caravan. Not ideal, but it's what we had. On the first night away, I decided to use the change in circumstance and the alcohol consumption level to have a quick firckle around. Twenty minutes later, there was a distinct boner! Around 60%, maybe even more. It may even have been a useable one had I tried, but I thought best to concentrate on making him feel good. Any early disaster wouldn't have helped! In any event, it was a milestone, and gives us hope.

The following night was a nightmare! Because he has been working so hard, and drinking more coffee and alcohol than was wise, his bladder control was terrible, and he got very upset.

We went to see the ED nurse yesterday. She has booked him in for a course of stimulation (!!!!) which I think involves a slender tone style workout (OH- I'm SO FED UP of people putting things up my arse!!).

I have two questions for you knowledgeable people:

The nurse appears to be getting more concerned that things are not improving on the continence front, and is muttering about the 12 month mark and other options. Should we be concerned at seven months on somewhere between 2-3 pads a day? Dry at night and if he does nothing, but not so good otherwise.

With regard to the cialis - he is on 5mg daily. He asked whether this should now be upped or changed. The nurse said no- this was a maximum daily dose. She says that as the cialis takes 36 hours to leave the blood stream, the levels are topped up to more than the 5mg taken every day. This makes sense, but some on the forum have suggested this is just a medicinal dose. In our position, should we be changing drugs or staying with cialis?

Thank you

User

Posted 18 Jun 2015 at 13:41

Louise,

It may help when you next "firtle" about if he stays on his back? That way at least gravity affecting the bladder may help prevent any leakage? Put a towel down JIC.

Have a great weekend firstling! ;-)

atb

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 18 Jun 2015 at 17:53

I had another 50%er in the shower this morning with my OH with no medication, whrereas there was nothing happening the other evening in bed. (No meds)

So what makes the difference? The water and lather, the time, standing up. I shall try a sildenafil in the next few days before breakfast and see what results from that.

Continence wise, I am still on one pad per day, which I have been now for 7 months. (op was April last year). It is improving, but very slowly. I am sure your OH will keep improving too. It just needs patience and he'll get there!

Stay Calm And Carry On.

User

Posted 18 Jun 2015 at 18:46

Originally Posted by: Online Community Member

Sometimes I tell John that I might ... but he points out that I haven't actually had any offers in recent years :-)

There must be someone out there?

Failing any other better offers, they would ALL be better, I would offer!

;-0

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 18 Jun 2015 at 21:15

Louise

sounds like that was a major milestone and how lovely of you to make sure it was used wisely so as to avoid any potential malfunction. It sounds to me like your patience will be greatly rewarded.

6F2 wow ... retirement is working out well I guess? I think sometimes a warm flow of water is a relaxing and comfortable environment so maybe it just puts you in that "nice place"

Hope everyone has a terrific weekend, I know all of us at Leicester MOS will be having a grand old party

Best wishes

User

Posted 19 Jun 2015 at 03:12

CB, are you drinking?

Louise, be very careful about asking to change from 5mg. Men all over the nation fight because they can't get access to the daily dose. What you are actually entitled to on the NHS is 1 x 20mg tablet per week so if you press for the higher dose you will go from 35mg per week (7 x 5mg) to 20mg per week. Because Cialis stays in the body for longer than Viagra, the small dose has a greater cumulative effect.

It seems to me that you risk running before you can walk, having had one half-success that most here can only dream of at 7 months post-op. But if he is that impatient, he can miss his Cialis for a couple of days and then take 3 or 4 at once to get the 'event' dose. You could also ask at the next appointment whether they would be willing to prescribe daily Cialis AND Viagra at the same time (but I only know of a couple of men that have been able to get this)

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

User

Posted 19 Jun 2015 at 10:10

Hi Louise ,

I did post about this before , and I don't really want any backlash. But as long as u ask ure doctor what is safe for u , you can easily purchase generic Viagra , cialis , and Levitra off the internet at londonkamagra.com. It is safe and effective and cheap. I had ED probs for a while due to testosterone replacement. And it all worked perfectly. Just check with Doc. My fave was 20mg Levitra for an event

Regards Chris

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