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One wife's story of ED

User
Posted 12 Apr 2015 at 20:22
Congratulations Paul - 40 years is quite an achievement.

Sending best wishes.

Enjoyed the Superman story Dave.

User
Posted 13 Apr 2015 at 07:55

Originally Posted by: Online Community Member

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

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Did you Pinny/Paul ?

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

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

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

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

Edited by member 13 Apr 2015 at 12:39  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 13 Apr 2015 at 20:22

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 12:04

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 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 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 30 Mar 2017 at 23:36

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

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

User
Posted 31 Mar 2017 at 05:36

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

If life gives you lemons , then make lemonade

User
Posted 31 Mar 2017 at 07:07

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

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

User
Posted 23 May 2017 at 12:54
Hello Lyn,

Thanks a lot for sharing.

May I ask about the urine leakage, is it resolved?

I am scared to even try (had RP 2 months ago now) because of this.

Thanks

Ayman

User
Posted 26 May 2017 at 11:22

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

User
Posted 19 Jul 2017 at 19:22
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 05:53

Keep fighting Misty, and never give up hope

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

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

We can't control the winds - but we can adjust our sails
User
Posted 20 Jul 2017 at 07:51

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

User
Posted 20 Jul 2017 at 11:43
Misty here again. Thanks Johan! Lynda your OH's progress sounds amazing. Did he have both nerves spared? Mine only had one saved but one is better than none! Can I ask how much is 3 Viagras? On Chris and Lyns advice I got hubby's prescription changed to Viagra this month to give it a go as 20mg Cialis hasn't been working at all and We are almost a year out.

Lyn kindly promised to send us her pump as they cost at least €450 here on top of the €250 I'm now paying for family meds (€150 for my auto immune condition plus another €100 for the not working Cialis monthly). However viagra is covered but 4 x100mg for the whole month is all they would give us! (I assume I can buy more privately). Anyway haven't quite got the nerve or the opportunity to try it yet...too many kids in the house!!

Was your doctor suggesting up to 300mg? Or did you get a lower dose tablet?

Keep up the good work...sounds like you are progressing really Well!!

User
Posted 20 Jul 2017 at 15:58

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

User
Posted 20 Jul 2017 at 17:57

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 07:08

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

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

User
Posted 26 Jul 2017 at 07:11

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 07:14  | Reason: Not specified

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

User
Posted 26 Jul 2017 at 08:41
Hi Lyn

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

Cheers

Misty

 
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