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Mental impact

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User
Posted 26 Jul 2020 at 16:19

Hi - I am struggling with the mental side of ED and the impact on a relatively new relationship (diagnosis 6 months after meeting) - any similar experiences or advice on coping? Seems churlish to ask given success of op, but side effects have had a negative impact on quality of life Thanks

User
Posted 26 Jul 2020 at 23:26

Peter has some wise words. I had RP 22 months ago (T3B). Some nerve sparing but not a lot. I have a wife who has been engaged all through the process. I have virtually no leakage so all good on that front but did have ED. Before touching on ED the other issue I had was prior to surgery I a good size penis that performed well. After surgery I was a lot lot smaller, something I was self conscious about and absolutely no life at all. My GP has been a star and he got me onto Ciallis and then a vacuum pump. Still after 12 months some stirrings but no erection of any substance. Everyone kept saying be patient keep with the program. At 18 months I had a 60% erection. At 20 months post surgery I had my first penetrative sex. The first 12 months were hard - I worried a lot about It and doc said that was part of the problem. Wife had thought that was the end of our sex life but being pragmatic at least I am cancer free (PSA undetectable). I asked her to read some PCUK docs to help her understand. She understood and we learnt new tricks to keep life interesting. I hope this is not too detailed but I have great orgasims now and no mess (not wet patch on the sheets!!) So what did I learn from this: try and not worry about it if doc says you have some nerves left be patient its a very very slow process, I think ciallis helped the natural process of nerve recovery by feeding blood but into the nether regions, the vacuum pump was sort of ok as it was part of retraining but it did hurt and I felt silly using it. I found regular masturbating was good training and it helped mentally as it gave me hope. Still have a general problem with size but nothing I can do about it, doc says this is a by product of surgery and shortening of the urethra. Btw I am 63 and i think at 24 months I’ll being having regular sex. 

User
Posted 27 Jul 2020 at 13:14
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User
Posted 26 Jul 2020 at 21:43

Hi,


You're worrying about your ED but you haven't mentioned if your partner is worried.  Presumably you think they are worried and that you're going to be a disappointment or is it that you won't get fulfilment for yourself or from the new relationship.


Six months isn't that long to wait for function to return.  I'd give it a lot more time and try a lot of things.


I cope with it because my wife gives me no concern about it and we're both very glad my psa remains low.  Everything else is a luxury.


I tried to put myself in your situation of having a new partner and would she or I be worried if I lost function.  To be honest it was a failure as we're all different.  I'd no doubt think the new woman might walk away as soon as they found out but you don't know.  It depends what they want out of a relationship.


It sounds like a case perhaps for a counseller or perhaps to ask a PCUK Nurse.  Perhaps you could open up about your concerns a bit more on here.  No-one knows your real name.   Others will add more no doubt.


Regards Peter


    


 

User
Posted 26 Jul 2020 at 23:03

Hi, 


I struggled with the mental side of ED too. It was my biggest fear at diagnosis, and although I wasn't expecting miracles, the psychological impact was huge and all consuming. The time between 2-8 months post op were the worst downward spiral for me. Physically I felt great but thoroughly miserable. 
I had a few counselling sessions through work which helped me (to open up to my partner too). Also, I learned that no matter how difficult, it's important to maintain intimacy. 
I'm now 8 months post op and despite my ED appointment being cancelled, I'm seeing some improvement, which in turn has boosted my state of mind. 


Not sure if you feel counselling or talking to someone is your thing, but it's worth trying in my opinion.


Good luck. 


Kev. 

Edited by member 26 Jul 2020 at 23:06  | Reason: Not specified

User
Posted 26 Jul 2020 at 23:25

Thanks Peter - we went from a totally fulfilling active sex life that we both enjoyed to something  that - even though we have tried various other activities - is not quite the same. I feel I have lost something as a man, and while I can live with that as a consequence of the surgery (which is life saving!) - it feels like I am inflicting that on someone else who doesn't deserve it. It is all very confusing, to be honest, more so than I expected. She tells me she is happy to wait until I recover fully, but the bit I don't like is that because it has undermined my confidence I have become a tad needy - and that is not an attractive quality. Thanks for your reply - all helps me get my head round something I now feel I was under prepared to deal with. I am going to seek expert counselling advice too, which I think will help get the right perspective.


Thanks again for your time and trouble.

User
Posted 26 Jul 2020 at 23:26

Peter has some wise words. I had RP 22 months ago (T3B). Some nerve sparing but not a lot. I have a wife who has been engaged all through the process. I have virtually no leakage so all good on that front but did have ED. Before touching on ED the other issue I had was prior to surgery I a good size penis that performed well. After surgery I was a lot lot smaller, something I was self conscious about and absolutely no life at all. My GP has been a star and he got me onto Ciallis and then a vacuum pump. Still after 12 months some stirrings but no erection of any substance. Everyone kept saying be patient keep with the program. At 18 months I had a 60% erection. At 20 months post surgery I had my first penetrative sex. The first 12 months were hard - I worried a lot about It and doc said that was part of the problem. Wife had thought that was the end of our sex life but being pragmatic at least I am cancer free (PSA undetectable). I asked her to read some PCUK docs to help her understand. She understood and we learnt new tricks to keep life interesting. I hope this is not too detailed but I have great orgasims now and no mess (not wet patch on the sheets!!) So what did I learn from this: try and not worry about it if doc says you have some nerves left be patient its a very very slow process, I think ciallis helped the natural process of nerve recovery by feeding blood but into the nether regions, the vacuum pump was sort of ok as it was part of retraining but it did hurt and I felt silly using it. I found regular masturbating was good training and it helped mentally as it gave me hope. Still have a general problem with size but nothing I can do about it, doc says this is a by product of surgery and shortening of the urethra. Btw I am 63 and i think at 24 months I’ll being having regular sex. 

User
Posted 26 Jul 2020 at 23:30

Thank you for your reply Kevin - that totally resonates with me.


Think I was just expecting everything to return to normal over the course of a few months and it hasn't.


It has totally undermined my confidence, I have become needy in the relationship and that in itself is a turn off to my partner, who is doing her best to be supportive.


If I am honest, I feel anxious and depressed but do not want to come over as weak to my partner - and I vowed immediately after diagnosis that I was not going to let the cancer define me.... yet in a way that is exactly what I have done.


I am going to seek professional advice, but I totally appreciate you taking the time and trouble to share. I hope you are okay as I can understand exactly where your mind has been over these past months.

User
Posted 26 Jul 2020 at 23:43

Thanks for this - and not too detailed at all! A quick question, which particular documents did you and your wife read to help - I would like to follow up on this. I am still leaking a little - most noticeably during foreplay - and this is not helping either at the moment as it is a turn off for us both - and I am thinking more about that than the erection. I was always complemented on my size and girth (not boasting!) - but feel that I am shorter, which is another concern. I think worrying and being anxious does not help either. One of the things I find difficult is that if asked 50 men on here what their treatment for ED was it would be different in each case - which makes it feel like pot luck and also casts doubts on my doctor's suggestions (eg she says there is no point changing medication as they all do the same thing - therefore I am on 100g sildenafil every day - I might as well be eating a smartie!). Very confusing times ... sometimes I am not sure what the best course of action is, but will find a way! Thanks for the time and trouble in replying - and hope all goes well for you both.

User
Posted 27 Jul 2020 at 08:08

Have you read this thread?


https://community.prostatecanceruk.org/posts/t9839-One-wife-s-story-of-ED


 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 27 Jul 2020 at 13:09

Will


One thing I didn’t mention was leakage at orgasm. In the very early days I attempted to ‘stoke the fire’ and give my little friend a trial run and I orgasmed - The first time post RP, having not experienced leakage even stress leakage after I exercised but when I orgasmed it was like Victoria Falls in flood. This threw me as it horrified me and I researched the subject and found it was not unusual - but never spoken of which was a pity. So going forward I started training my self to do kegel exercises as I orgasmed. The issue is now under control and my body automatically controls itself - magic - I occasionally have a slight/ very minor leakage but not really much different to life before RP except it was semen then.

User
Posted 27 Jul 2020 at 13:14
User
Posted 27 Jul 2020 at 19:09

Hi, You've cleared up a few points in the replies.  As I wrote above it took me nearly 3yrs to buy a pump.  After only a few uses it seemed like it had kick started certain things.    One was that my erection was only the bottom half of my penis.  The pump seemed to waken up the upper the half after just a few uses.   The other was it seemed longer when not erected after I used the pump.  I'm sure it's no different now to what it was before although it was around half inch less initially, one prostate smaller.  There is no reason an erect penis should be smaller except for the strength of the nerves, I don't think.


When I stand up I can get a full erection without the pump but if I lie on my back I don't get a peep without the pump although it feels like it's trying to.    I've found as I get older, now 71,  my peaks are no-where near as high.  In fact it's like it no longer wants to peak and the effect is in my brain rather than physical.  That might be wrong though.


Also I found, and still do, that if I get aroused I leak at the initial stimulus.  It doesn't happen after that.  Not too much but it's there.  Just after the op it happened in he street a couple of times when I saw an attractive lady.  It doesn't happen in the street any more.  Also it's never happened at the climax like you reported.


As a last point I've been very poor at doing Kegels or any kind of exercise for leaking or ED.  I only took 2 Cialis and decided I didn't like little pains it gave.  I haven't tried very hard and always thought it would get better in its own time.   After 3.5yrs I'm thinking it isn't going to get much better but I lasted that long without a problem so I'll just carry on.

User
Posted 30 Aug 2020 at 13:06

Originally Posted by: Online Community Member


Thanks Peter - we went from a totally fulfilling active sex life that we both enjoyed to something  that - even though we have tried various other activities - is not quite the same. I feel I have lost something as a man, and while I can live with that as a consequence of the surgery (which is life saving!) - it feels like I am inflicting that on someone else who doesn't deserve it. It is all very confusing, to be honest, more so than I expected. She tells me she is happy to wait until I recover fully, but the bit I don't like is that because it has undermined my confidence I have become a tad needy - and that is not an attractive quality. Thanks for your reply - all helps me get my head round something I now feel I was under prepared to deal with. I am going to seek expert counselling advice too, which I think will help get the right perspective.


Thanks again for your time and trouble.



Thanks for being so open about the real feelings that go on for us men when our erections don't appear the way they used to. My partner is like yours - very willing to wait till I fully recover - but it is hard for me and for her to relax into sexual enjoyment without the trusty old erection. What another RP survivor said to me helped a lot "be less goal oriented in your sex than you used to be" - in other words, let go a bit of our biological programming to penetrate and orgasm. I have found it really hard to do that, but every step I take helps us have more satisfying sensual, sexual connection that is not defined by erection or penetration. My wife and I laugh a lot more, joke about what is and isn't possible, and it gets easier. Also after some months, I am getting over my hangups about using a pump - at first it just seemed too unnatural, but now I have got over myself, she is fine with the outcomes of a pump-induced erection.

User
Posted 29 Jan 2022 at 22:23
Reported 🙄
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 30 Jan 2022 at 06:59

Originally Posted by: Online Community Member
Reported 🙄


Lyn, that single word "reported" sounds ominous. What happened that needed to be reported - and to whom?

User
Posted 30 Jan 2022 at 14:48

Nothing to worry about - a spam post trying to sell us all a solution to the world's problems! \looks like the moderators have deleted it. 

Edited by member 30 Jan 2022 at 20:22  | Reason: Not specified

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