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Is there still hope?

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User
Posted 26 Oct 2014 at 18:23

It is now almost 23 months since I had op to remove prostate.  So far my PSA tests have come back as virtually undetectable so obviously I am pleased about that.  My next PSA test is due in early December and I would be lying to say I am not nervous but I live in hope that a low PSA result will continue (I will post results in due course).


I do not regret my treatment and of course I am glad to be alive.  On the whole life is good and I know I have much to be thankful for.  It was always my wish to do whatever I could to simply get rid of the cancer but this has come at a price – the dreaded ED!


I do get periods of depression about this.  My wife is as always simply wonderful.  Her view is that I am alive and that is all that matters.  Of course she is right but I am having great difficulty mentally accepting this.  The loss of manhood has really affected my self esteem as a man.


I have tried Viagra etc and they leave me feeling quite rough with gastric reflux.  Somehow I would accept this side effect if the tablets worked where they are supposed to.


I have mastered the use of MUSE but even the maximum dose only produces a partial erection, which is not hard enough for penetrative sex.  There is some discomfort for a while afterwards but I have coped with this.


I use the pump for penile rehabilitation.  However, I do find the rings quite uncomfortable.  I have managed to consummate my marriage post surgery but I have not been able to finish (if you get my drift).  The rings seem to de-sensitise the area and then I either run out of energy or things begin to deflate!


My ED nurse has been great but regular consultations have now ended.  However, I do have one more open appointment left but this will only be to receive instructions regarding injections – he has left the onus on me to pursue this.  I am still not mentally prepared to go down that route but I have not ruled it out yet.


On a positive note, for about 3 months or so I have been getting what seems to be the beginnings of a nocturnal erection.  Sometimes if I wake up in the night I notice there is definitely a thickening although nothing useable.  This is getting more regular.  However, as soon as I have spent a penny it goes back down again.  I have also tried to give it a little helping hand but once again my friend goes down.


My worry is that the position at 24 months is likely how things are going to remain.  Can anyone reassure me there is still some hope please?


My libido is fine and whilst I am very pleased about this it only increases my frustration.  The thought of never being able to do what comes naturally again bothers me.  My wife teases me and suggests I see my GP to get something to curtail my desire but I am not ready for that yet!


Please forgive me for painting a gloomy picture.  I know I am otherwise greatly blessed.  I also know that sex is not everything but I do so much miss how things used to be.  I sometimes feel guilty but I reason within myself that I am only human with natural human needs.


Is there anyone out there in a similar position to me (around the 2 year mark)?  How have you coped mentally?  For those who have passed the 2 year mark, do things get better?


As always your support is very much appreciated.

User
Posted 26 Oct 2014 at 19:23

PS when you get some swelling, use lots of lube on your hands and persist even when it deflates .... you may find that it becomes more erect again just before you climax and this improves with time and practice. For quite some time, this was how we had sex - using penetration only in the last few moments. Seems a little strange perhaps to others but I think getting his confidence was the biggest barrier and doing it this way meant he didn't have time to panic.

Edited by member 26 Oct 2014 at 19:23  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 30 Oct 2014 at 15:59
Hi RT,

I haven't been on here since the forum changed, I just couldn't get used to it. I'm trying again now!

Anyhow I just wanted to say that my hubby Keith had his RP (open) done in April 2012 so about 28months ago. His ED was not helped in any way by muse (any strength) or the cialis 20mg twice weekly and he had very little 'signs of life' in his little fella for all this time but guess what?? This last month or so things are changing!! He started taking the cialis (after insisting) 5mg a day about 6 months ago and for the last month I've seen a huge :) change. Steadily getting better, not enough for the full job but certainly almost there!

He too has felt his manhood questioned which in my eyes (just like your better halfs) is ridiculous! We love you more than anything in the world and as you say are so grateful to have you alive! No matter how many times I say this to Keith it just doesn't go in, he too gets very down about it which is understandable. Please please take encouragement from our situation. I will keep you up to date on how things improve (as I'm convinced they will).

Good luck, keep trying and if you are not on the 5mg cialis daily please keep on insisting!

Nessy x
User
Posted 26 Oct 2014 at 19:17

RT, generally they say that wherever you are at two years post-op is likely to be the long-term situation. However, John's biggest progress was between months 20 and 36 so there is still some hope. It seems that you have not tried Levitra yet which John found to be effective and with less side effects than the Viagra. I seem to recall that you struggled to get Cialis one-a-day but will they give you a prescription for the higher dose version?

Caverject is difficult to get at the present time so would possibly be a waste of that precious ED appointment - if you phoned the ED nurse, would he write a prescription for Levitra or Cialis for you to try?

I can't give you any comforting words about the emotional impact of all this - you already know that John really struggled and for a long time even regretted having treatment. My dad, on the other hand, overcame his reluctance to inject and has never looked back. He was happy that he had chosen treatment knowing what the side effects might be and has had 13 very healthy years to enjoy life.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 Oct 2014 at 21:50

Hi RT,

Short answer is "Yes".

Longer answer is keep hoping and keep playing. And when you least expect it, something will come up, a bit. That is how it's worked for me anyway.

Dave

User
Posted 30 Oct 2014 at 20:48

Can not over emphasise how helpful a supportive participating and enthusiastic partner will be in your recovery.


It's a two handed job, recovery, or four! I wish you both well.


Dave

Edited by member 30 Oct 2014 at 20:48  | Reason: Not specified

User
Posted 13 Nov 2014 at 20:52
This is the first time that I have posted on this new format. I am over 9 years since my op, and still much the same as RT.

Lynn and others will know that I mastered the pump and the rings after considerable experimentation and that sex is not only ok, but amazingly good. It wasn't easy in the beginning, the rings were uncomfortable, even painful, but that was worth suffering.

Adrian

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User
Posted 26 Oct 2014 at 19:17

RT, generally they say that wherever you are at two years post-op is likely to be the long-term situation. However, John's biggest progress was between months 20 and 36 so there is still some hope. It seems that you have not tried Levitra yet which John found to be effective and with less side effects than the Viagra. I seem to recall that you struggled to get Cialis one-a-day but will they give you a prescription for the higher dose version?

Caverject is difficult to get at the present time so would possibly be a waste of that precious ED appointment - if you phoned the ED nurse, would he write a prescription for Levitra or Cialis for you to try?

I can't give you any comforting words about the emotional impact of all this - you already know that John really struggled and for a long time even regretted having treatment. My dad, on the other hand, overcame his reluctance to inject and has never looked back. He was happy that he had chosen treatment knowing what the side effects might be and has had 13 very healthy years to enjoy life.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 Oct 2014 at 19:23

PS when you get some swelling, use lots of lube on your hands and persist even when it deflates .... you may find that it becomes more erect again just before you climax and this improves with time and practice. For quite some time, this was how we had sex - using penetration only in the last few moments. Seems a little strange perhaps to others but I think getting his confidence was the biggest barrier and doing it this way meant he didn't have time to panic.

Edited by member 26 Oct 2014 at 19:23  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 Oct 2014 at 21:50

Hi RT,

Short answer is "Yes".

Longer answer is keep hoping and keep playing. And when you least expect it, something will come up, a bit. That is how it's worked for me anyway.

Dave

User
Posted 30 Oct 2014 at 09:59

Many men seem to be offered 3 monthly for the first year, then 6 monthly until the five year point, and then annually (assuming the PSA remains undetectable during this time). In John's case, he is still on 3 month checks nearly 5 years after the op but this is because his PSA did not behave and he had to have salvage HT/RT two years ago.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 30 Oct 2014 at 14:16
Sean had his 1st 6 weeks after op and then its every 3 months for a yr, then if all ok 6 monthly.
I bet it all comes down to cost.Your results will have been looked at and the decision has been made verses cost!! Grrrrr
User
Posted 30 Oct 2014 at 15:59
Hi RT,

I haven't been on here since the forum changed, I just couldn't get used to it. I'm trying again now!

Anyhow I just wanted to say that my hubby Keith had his RP (open) done in April 2012 so about 28months ago. His ED was not helped in any way by muse (any strength) or the cialis 20mg twice weekly and he had very little 'signs of life' in his little fella for all this time but guess what?? This last month or so things are changing!! He started taking the cialis (after insisting) 5mg a day about 6 months ago and for the last month I've seen a huge :) change. Steadily getting better, not enough for the full job but certainly almost there!

He too has felt his manhood questioned which in my eyes (just like your better halfs) is ridiculous! We love you more than anything in the world and as you say are so grateful to have you alive! No matter how many times I say this to Keith it just doesn't go in, he too gets very down about it which is understandable. Please please take encouragement from our situation. I will keep you up to date on how things improve (as I'm convinced they will).

Good luck, keep trying and if you are not on the 5mg cialis daily please keep on insisting!

Nessy x
User
Posted 30 Oct 2014 at 20:48

Can not over emphasise how helpful a supportive participating and enthusiastic partner will be in your recovery.


It's a two handed job, recovery, or four! I wish you both well.


Dave

Edited by member 30 Oct 2014 at 20:48  | Reason: Not specified

User
Posted 13 Nov 2014 at 20:52
This is the first time that I have posted on this new format. I am over 9 years since my op, and still much the same as RT.

Lynn and others will know that I mastered the pump and the rings after considerable experimentation and that sex is not only ok, but amazingly good. It wasn't easy in the beginning, the rings were uncomfortable, even painful, but that was worth suffering.

Adrian

 
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