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Anxiety issue?

User
Posted 11 Oct 2015 at 18:27
Next month it will be 3 years that I had my op to remove prostate.

So far I have achieved my first goal which was to be alive and generally quite well. However, I know there are no guarantees but I still live in hope. My 2nd goal was to be continent - I am about 95%, which I can live with.

This just leaves ED, which is now my major challenge that needs to be overcome.

For well over a year I have been getting quite regular nocturnal thickenings. I would modestly say 40% but could be slightly more. Nothing useable but definitely some movement in the right direction.

I have reported before that if I wake up in the night I have tried to give things a helping hand but as soon as I have passed water the old todger goes down and no amount of play gets him back up. Likewise no amount of play in daylight hours works.

I have been doing some thinking. As there is some nocturnal activity the nerves must be repairing to some degree. I then ask myself why doesn't it work when I am awake. I have come to the conclusion that it could be my anxiety that is the problem.

Things happen in the night because I am not consciously thinking of it but as soon as I become aware then, well nothing! Pre-surgery there were some situations that would trigger an erection - eg a kiss and a cuddle with my wife. Since surgery this hasn't worked. On an odd occasion when I have not otherwise expected anything there has been some minor twitching. Then if I try to do anything, nothing again!

Just for the record I will say I have had regular use of a vacuum erection device and other play to try my best to keep atrophy to a minimum. My libido is also fine and equals pre-surgery days, if not more.

I admit the ED has affected me mentally and my self esteem as a man is low. I suppose there is always the feeling I am going to fail so it all becomes a viscous circle that is difficult for me to get out of.

The question is how do I get out of it and break the cycle?

Can anyone else on the forum relate to my situation? How have you handled this?

I was wondering if counselling might help. Has anyone else on the forum gone down that route? Did it help?

As I am getting near to the 3 year mark I am worried that I am now too late and I will have to accept the days of a spontaneous erection are over. That thought fills me with horror and at the moment I just cannot accept that, which increases my anxiety and the cycle begins again.

Any comments good, bad and however frank would be appreciated.

I am due to see my ED nurse later this month so I will need to make the best of this and be prepared.

Thank you for the help you all give. Apart from my wife and you I have nowhere else to turn. I will see my ED nurse again but my GP and consultant just give me the impression they are not interested in this side of my recovery.
User
Posted 11 Oct 2015 at 18:44
I think councilling sounds a good idea.☺
User
Posted 11 Oct 2015 at 20:11

Hello Rivertweed
Thanks for all the help you have given me . I really don't know what to say , and after all im only 4 months down the road , but I do know just how much it has affected me as a man. It does hit at your core doesn't it ? For some men anxiety can become a real problem and self-perpetuating , but in your case it may only be a small part of the problem ( albeit still a part of the problem ) . The truth is we have all been seriously damaged down there and " natural " recovery can take ages or never return . I haven't had the slightest amount of blood in there naturally but its early days . The experts on here who are much further down the road may say that your chances of natural recovery are slim now at 3 yrs post-op , but NOT impossible , especially if you are seeing gradual improvement. I went through a stage in my life where I would wake up fully wooded everyday for ages in the morning , and had no problems whatsoever with my wife with sex , but try masturbating ??? Not a hope in hell !! Its at times like these that you realise what a truly remarkable amazing device the human body is , and how much you take things for granted.
Sorry rambling !
If I was you I think I would be really looking into trying all the tablets again ( with or without the pump ) , checking that the pump rings you have are the right size etc . Also have you tried MUSE or Vitaros . Ask for Caverject and grit your teeth man . If I can get 80% then you might be able to get 100% maybe . And with one or two successes under your belt sometimes the confidence comes back . DO have a ruddy good talk with ED nurse , DEMAND access to treatments and state your case . Ive been lucky on that path .
Thinking of you
Chris

User
Posted 11 Oct 2015 at 20:26

GP and consultant are glad you've got life so probably think they've done their bit.


Life isn't just about the ability to see, hear, think etc it's also about quality of life .
If when you had your op you had been told there was absolutely no way you could ever again experience an erection but you would live then you would have accepted that as the penalty you had to pay.


However, you have the beginnings of stirrings and a good libido. I'm not an expert obviously, but I can fully appreciate that failure, even the thought of failure, would act like a bucket of cold water to any fledgling erection you might get and your theory of spontaneous arousal during sleep makes sense to me.


If you are forever telling yourself this isn't going to work then it won't because the mental block is there. Likewise, the previous situation where a kiss and cuddle would give arousal is perhaps not happening because subconsciously you're telling yourself there's no point if I can't follow through and therefore my lovely wife will be disappointed and I'll look even less of a man in her eyes. It's a very hard thing to convince our other halves that isn't so, especially because he has already decided that he isn't the man he was.


Apart from the pump and exercise, what other things are you/have you tried. Lyn sometimes mentions caverjet and muse etc. Have they all been tried?



You know from other men's posts that you are all different in your recovery rates. A few seem to be able to get sexually active pretty quickly, some don't manage at all. You get a conservative 40% which is at least something to build on. There has got to be hope that will definitely improve with patience.


I'm sure the experts will come bearing useful, practical advice but me, I echo Hilary. Get some form of counselling to get you over this hurdle.


Best Wishes for a successful outcome


 

Edited by member 11 Oct 2015 at 20:27  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 11 Oct 2015 at 21:25

RT, it depends a bit on your ED nurse I think. Do you go together to the appointments? One of the things Zoe did for us was to ban any attempt at penetration, with the instruction that from one appointment to the next our only sexual activity should be focused on my pleasure rather than J's .... the idea being to change his thought processes away from the fear of it going wrong and towards how nice it all feels. Wasn't hugely successful for us at the time but might work better for you?

Aside of Zoe's support, we waited over a year for counselling via the GP but it never materialised. In hindsight, I wish that I had thought of hypnotherapy instead - I suspect that as a quick way to short-circuiting unhelpful thoughts, it would be much more successful than counselling. Worth a try?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Oct 2015 at 07:40

Riverweed,


I'm some 18 months post PR, I do understand and appreciate your genuine concerns more so than any doctor, nurse or counsellor unless they've had there prostates removed.


I find the the recovery process is often a lonely path, never knowing if I will ever get back to where I was before this all began, we are in the grey zone, a no mans land, maybe this is the price we pay for survival,


from the pelvic exercises to using the damn pump I don't know if any of it makes a damn difference at all,  I say to myself this is how it is and I have to accept the situation I find myself in , ( easier said than done )


I'm not in full control, maybe this is as good as it gets, I hope not but its a possibility, no one has given me a 100 % guarantee, I have to accept my limitations,  I not in the driving seat....  I'm a passenger for now.


 


 

User
Posted 12 Oct 2015 at 08:35
I don't think the pelvic exercises do any good either . Sean's physio said there was no research that proved it one way or the other.
He doesn't do them now.☺
User
Posted 13 Oct 2015 at 03:51
Interesting comments.
Personally I am 14 months post op and been on Cialis for 6 months.
It helped because I can "feel" it, and now about 40% thickening on stimulation.
My Ed nurse gave me a pump recently, which has brought humour to the situation but not much else.
So I decided to think about what really stimulated me pre op and concentrate on that.
I realised it was all about giving pleasure, the realisation that my (female) partner(s) enjoyment was the greatest stimulant to me.
Having accepted my condition and concentrated my sexual desire and satisfaction on this "fact" life has become fun, and often funny.
Has anyone tried meeting someone new, telling her the facts of the "condition"?
Its very interesting. The reaction......and very female......and slightly erotic.
Who needs a pump in that situation!!!!
User
Posted 24 Oct 2015 at 20:30

Don't think you are whinging mate -- that's officially my job. My feelings on all this completely reflect yours and I just feel rotten for any one person afflicted with this disease. And as you say there are many on this forum in far worse circumstances , whereby I don't even feel qualified to reply to their posts.
Anyway Rivertweed on a brighter note , at least you got 15 extra years nooky in than some of us on here. So stop whinging :--)))
Take care
Chris

Show Most Thanked Posts
User
Posted 11 Oct 2015 at 18:44
I think councilling sounds a good idea.☺
User
Posted 11 Oct 2015 at 20:11

Hello Rivertweed
Thanks for all the help you have given me . I really don't know what to say , and after all im only 4 months down the road , but I do know just how much it has affected me as a man. It does hit at your core doesn't it ? For some men anxiety can become a real problem and self-perpetuating , but in your case it may only be a small part of the problem ( albeit still a part of the problem ) . The truth is we have all been seriously damaged down there and " natural " recovery can take ages or never return . I haven't had the slightest amount of blood in there naturally but its early days . The experts on here who are much further down the road may say that your chances of natural recovery are slim now at 3 yrs post-op , but NOT impossible , especially if you are seeing gradual improvement. I went through a stage in my life where I would wake up fully wooded everyday for ages in the morning , and had no problems whatsoever with my wife with sex , but try masturbating ??? Not a hope in hell !! Its at times like these that you realise what a truly remarkable amazing device the human body is , and how much you take things for granted.
Sorry rambling !
If I was you I think I would be really looking into trying all the tablets again ( with or without the pump ) , checking that the pump rings you have are the right size etc . Also have you tried MUSE or Vitaros . Ask for Caverject and grit your teeth man . If I can get 80% then you might be able to get 100% maybe . And with one or two successes under your belt sometimes the confidence comes back . DO have a ruddy good talk with ED nurse , DEMAND access to treatments and state your case . Ive been lucky on that path .
Thinking of you
Chris

User
Posted 11 Oct 2015 at 20:26

GP and consultant are glad you've got life so probably think they've done their bit.


Life isn't just about the ability to see, hear, think etc it's also about quality of life .
If when you had your op you had been told there was absolutely no way you could ever again experience an erection but you would live then you would have accepted that as the penalty you had to pay.


However, you have the beginnings of stirrings and a good libido. I'm not an expert obviously, but I can fully appreciate that failure, even the thought of failure, would act like a bucket of cold water to any fledgling erection you might get and your theory of spontaneous arousal during sleep makes sense to me.


If you are forever telling yourself this isn't going to work then it won't because the mental block is there. Likewise, the previous situation where a kiss and cuddle would give arousal is perhaps not happening because subconsciously you're telling yourself there's no point if I can't follow through and therefore my lovely wife will be disappointed and I'll look even less of a man in her eyes. It's a very hard thing to convince our other halves that isn't so, especially because he has already decided that he isn't the man he was.


Apart from the pump and exercise, what other things are you/have you tried. Lyn sometimes mentions caverjet and muse etc. Have they all been tried?



You know from other men's posts that you are all different in your recovery rates. A few seem to be able to get sexually active pretty quickly, some don't manage at all. You get a conservative 40% which is at least something to build on. There has got to be hope that will definitely improve with patience.


I'm sure the experts will come bearing useful, practical advice but me, I echo Hilary. Get some form of counselling to get you over this hurdle.


Best Wishes for a successful outcome


 

Edited by member 11 Oct 2015 at 20:27  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 11 Oct 2015 at 21:25

RT, it depends a bit on your ED nurse I think. Do you go together to the appointments? One of the things Zoe did for us was to ban any attempt at penetration, with the instruction that from one appointment to the next our only sexual activity should be focused on my pleasure rather than J's .... the idea being to change his thought processes away from the fear of it going wrong and towards how nice it all feels. Wasn't hugely successful for us at the time but might work better for you?

Aside of Zoe's support, we waited over a year for counselling via the GP but it never materialised. In hindsight, I wish that I had thought of hypnotherapy instead - I suspect that as a quick way to short-circuiting unhelpful thoughts, it would be much more successful than counselling. Worth a try?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Oct 2015 at 07:40

Riverweed,


I'm some 18 months post PR, I do understand and appreciate your genuine concerns more so than any doctor, nurse or counsellor unless they've had there prostates removed.


I find the the recovery process is often a lonely path, never knowing if I will ever get back to where I was before this all began, we are in the grey zone, a no mans land, maybe this is the price we pay for survival,


from the pelvic exercises to using the damn pump I don't know if any of it makes a damn difference at all,  I say to myself this is how it is and I have to accept the situation I find myself in , ( easier said than done )


I'm not in full control, maybe this is as good as it gets, I hope not but its a possibility, no one has given me a 100 % guarantee, I have to accept my limitations,  I not in the driving seat....  I'm a passenger for now.


 


 

User
Posted 12 Oct 2015 at 08:35
I don't think the pelvic exercises do any good either . Sean's physio said there was no research that proved it one way or the other.
He doesn't do them now.☺
User
Posted 13 Oct 2015 at 03:51
Interesting comments.
Personally I am 14 months post op and been on Cialis for 6 months.
It helped because I can "feel" it, and now about 40% thickening on stimulation.
My Ed nurse gave me a pump recently, which has brought humour to the situation but not much else.
So I decided to think about what really stimulated me pre op and concentrate on that.
I realised it was all about giving pleasure, the realisation that my (female) partner(s) enjoyment was the greatest stimulant to me.
Having accepted my condition and concentrated my sexual desire and satisfaction on this "fact" life has become fun, and often funny.
Has anyone tried meeting someone new, telling her the facts of the "condition"?
Its very interesting. The reaction......and very female......and slightly erotic.
Who needs a pump in that situation!!!!
User
Posted 18 Oct 2015 at 17:00
My OH is having problems along these lines now. He's ten months post RRP. At about six months RRP he had a couple of semis, which looked promising. Since then, he has had very little and is getting despairing. I'm sure a lot of it is psychological.

I have no idea how to break this cycle. I think he probably would have some function if he wasn't so het up about it all.
User
Posted 18 Oct 2015 at 17:38
I think you are right,but how to stop it I have no idea.
We have been totally honest with each other,with no blame,and lots of encouragement. It paid off as most of the time it's 100%.😊
User
Posted 24 Oct 2015 at 19:39
Thank you for your responses to my posting of 11 October.

At the time I made the posting I was feeling rather low but as Chris says it does hit you to the core as a man. However, when I think of the many challenges others on the forum are facing, much worse than me, it helps me realise how fortunate I am in comparison. So if I have come over as whinging I do apologise!

When I accepted the treatment offered to me (op) I obviously accepted that there would be after effects. However, I had to choose life first. I owed it to myself, wife and family. I do not regret the treatment but the ED after effect is difficult to come to terms with.

I realise that the time may come when I will have to accept a natural erection is not going to happen but until then I intend to give it a good fight. Statistics might be against me but I am not giving up yet!

I am seeing my ED nurse next week and I am looking forward to that. I will see what he has to say and take it from there.

I very much appreciate the support forum members have given me since I joined in March 2013. Sending best wishes to all.
User
Posted 24 Oct 2015 at 20:30

Don't think you are whinging mate -- that's officially my job. My feelings on all this completely reflect yours and I just feel rotten for any one person afflicted with this disease. And as you say there are many on this forum in far worse circumstances , whereby I don't even feel qualified to reply to their posts.
Anyway Rivertweed on a brighter note , at least you got 15 extra years nooky in than some of us on here. So stop whinging :--)))
Take care
Chris

 
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