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Keeping it together for more than 2 years of ED

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User
Posted 30 Aug 2022 at 14:20

Dear fellow survivors who are more than one year post prostate cancer treatment (self or partner),

What helps you keep it together through all the losses and changes? Over the last two and a half years I've had ED most of the time and still not out of the woods. I have found it challenging to keep my own good spirits up, to stay on track with penile rehab, and most importantly to stay in good relationship with my partner. Similar and often bigger challenges apply if you are single and/or dating. It is so weird having the most basic of sexual function just stop working the way it used to. It challenged my own sense of self as well as how I relate to my partner. I also turned inward more as I tried to "get things working again."

What has worked for you, and what hasn't worked?

User
Posted 30 Aug 2022 at 14:20

Dear fellow survivors who are more than one year post prostate cancer treatment (self or partner),

What helps you keep it together through all the losses and changes? Over the last two and a half years I've had ED most of the time and still not out of the woods. I have found it challenging to keep my own good spirits up, to stay on track with penile rehab, and most importantly to stay in good relationship with my partner. Similar and often bigger challenges apply if you are single and/or dating. It is so weird having the most basic of sexual function just stop working the way it used to. It challenged my own sense of self as well as how I relate to my partner. I also turned inward more as I tried to "get things working again."

What has worked for you, and what hasn't worked?

User
Posted 30 Aug 2022 at 17:25

Penile injections and alcohol worked for me. The jabs got it up and the booze removed my hangups and worries..

Edited by member 02 Sep 2022 at 06:55  | Reason: Not specified

User
Posted 01 Sep 2022 at 23:26

From surgery to radiation to hormone therapy, and ultimately to chemo it's been 12 years.  I have been mostly impotent except for using penile injections which gave me only partial erections of my now small penis. It was enough for penetrative sex and since my wife can orgasm almost on command during sex, it worked.  But I'm sure the sex wasn't great for her.  I have told her I could handle it if she wanted to have sex with someone else with a "normal" penis - a "don't ask, don't tell" arrangement.  I don't want to be responsible for reducing her quality of life.  I feel guilty about it.  I have seen a psychologist a few times to try to put all this in perspective and it did really help.  It might be worth a try.  My wife has been so open and supportive, she has been my biggest help.

Edited by member 01 Sep 2022 at 23:27  | Reason: Not specified

User
Posted 02 Sep 2022 at 21:04
Hi Mish

2 years post op for me. Partial nerve sparing ( although, to be truthful, I have seen no evidence of that to date) Unfortunately I had to have SRT after 15 months so straight onto bicalutamide/Zoladex which has certainly not helped in the "trouser" department.

My wife has been an absolute star in all this and has been totally supportive. I'm not sure if my post is helpful but there you go.

User
Posted 07 Sep 2022 at 05:59

Originally Posted by: Online Community Member
4Mths post surgery, still mourning my loss of erection, got a stash of cialis and viagra, pick them up monthly from the pharmacy, tried them a few times, nothing.. So stopped using them. I also forked out on a vacurect pump, tried a few times and minute pump comes off, erection is lost! So that is also locked away now, my wife has been highly supportive, also going through peri-menopause, so sex is the last thing on her mind!

You should take the Cialis (tadadafil) in 5mm daily dose. It has a long half life so stays in you system longer and constantly increases blood flow to the damaged nerves which aids healing.

 

Cheers

BILL

User
Posted 12 Sep 2022 at 23:12

Three and a half years post op. Tried viagra and it didn’t touch the sides. GP never offered anything else, “the wife’s probably relieved” was his response. Went to ED clinic and got a pump which did work but then got hit by lymphoedema and regular two-weekly cellulitis attacks so pump has had to stop. Had another appointment at clinic last Xmas but that was just when lymphoedema/cellulitis erupted so had to cancel. Have just got another appointment in January for injections! Hoping not to jinx it but lymphoedema appears to be in check and cellulitis halted by permanent antibiotics.

so here’s hoping that the new year brings us both a little pressie!

wife has been an absolute star with no pressure at all, so feel a bit guilty.

 

Rob

Edited by member 12 Sep 2022 at 23:15  | Reason: Not specified

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User
Posted 30 Aug 2022 at 17:25

Penile injections and alcohol worked for me. The jabs got it up and the booze removed my hangups and worries..

Edited by member 02 Sep 2022 at 06:55  | Reason: Not specified

User
Posted 01 Sep 2022 at 23:26

From surgery to radiation to hormone therapy, and ultimately to chemo it's been 12 years.  I have been mostly impotent except for using penile injections which gave me only partial erections of my now small penis. It was enough for penetrative sex and since my wife can orgasm almost on command during sex, it worked.  But I'm sure the sex wasn't great for her.  I have told her I could handle it if she wanted to have sex with someone else with a "normal" penis - a "don't ask, don't tell" arrangement.  I don't want to be responsible for reducing her quality of life.  I feel guilty about it.  I have seen a psychologist a few times to try to put all this in perspective and it did really help.  It might be worth a try.  My wife has been so open and supportive, she has been my biggest help.

Edited by member 01 Sep 2022 at 23:27  | Reason: Not specified

User
Posted 02 Sep 2022 at 09:25

Hi Mish,

I'm coming up to three years post op.

Injections work for me and give the best results by far. 

Tadalafil definitely works to a degree. 

Sildenafil doesn't seem to do much for me at all. 

Apart from that, having an understanding partner makes all the difference. 

Kev.

User
Posted 02 Sep 2022 at 21:04
Hi Mish

2 years post op for me. Partial nerve sparing ( although, to be truthful, I have seen no evidence of that to date) Unfortunately I had to have SRT after 15 months so straight onto bicalutamide/Zoladex which has certainly not helped in the "trouser" department.

My wife has been an absolute star in all this and has been totally supportive. I'm not sure if my post is helpful but there you go.

User
Posted 04 Sep 2022 at 08:57

Originally Posted by: Online Community Member

Penile injections and alcohol worked for me. The jabs got it up and the booze removed my hangups and worries..

In essence I think you have summarised the challenges: find a way to live with our new bodies, and find a way to get over our hangups. In terms of the details I have followed a different route (vacuum pump to get it up and laughter/play to get over the hangups) but similar outcomes. Like many of those posting, I am grateful for my wife's huge support, good humour, and adaptability.

User
Posted 06 Sep 2022 at 22:35
4Mths post surgery, still mourning my loss of erection, got a stash of cialis and viagra, pick them up monthly from the pharmacy, tried them a few times, nothing.. So stopped using them. I also forked out on a vacurect pump, tried a few times and minute pump comes off, erection is lost! So that is also locked away now, my wife has been highly supportive, also going through peri-menopause, so sex is the last thing on her mind!
User
Posted 07 Sep 2022 at 00:51

The pump is still useful to keep blood flowing in the penis. It may yet recover and it is too early to rule that out. You might need ED clinic injections etc. But for the time being give the penis it's best chance.

Dave

User
Posted 07 Sep 2022 at 03:52

Originally Posted by: Online Community Member
4Mths post surgery, still mourning my loss of erection, got a stash of cialis and viagra, pick them up monthly from the pharmacy, tried them a few times, nothing.. So stopped using them. I also forked out on a vacurect pump, tried a few times and minute pump comes off, erection is lost! So that is also locked away now, my wife has been highly supportive, also going through peri-menopause, so sex is the last thing on her mind!

Far too early to panic Gee - it is sometimes said that wherever you are at the 2 year mark is as good as it's going to get but my husband saw the biggest improvement between months 24 - 36. If you haven't read this thread already, there is lots of hope in it for you https://community.prostatecanceruk.org/posts/t9839-One-wife-s-story-of-ED

Sounds like you haven't got the technique right for the vacuum pump yet. 

Edited by member 07 Sep 2022 at 03:53  | Reason: to activate hyperlink

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

User
Posted 07 Sep 2022 at 05:59

Originally Posted by: Online Community Member
4Mths post surgery, still mourning my loss of erection, got a stash of cialis and viagra, pick them up monthly from the pharmacy, tried them a few times, nothing.. So stopped using them. I also forked out on a vacurect pump, tried a few times and minute pump comes off, erection is lost! So that is also locked away now, my wife has been highly supportive, also going through peri-menopause, so sex is the last thing on her mind!

You should take the Cialis (tadadafil) in 5mm daily dose. It has a long half life so stays in you system longer and constantly increases blood flow to the damaged nerves which aids healing.

 

Cheers

BILL

User
Posted 12 Sep 2022 at 23:12

Three and a half years post op. Tried viagra and it didn’t touch the sides. GP never offered anything else, “the wife’s probably relieved” was his response. Went to ED clinic and got a pump which did work but then got hit by lymphoedema and regular two-weekly cellulitis attacks so pump has had to stop. Had another appointment at clinic last Xmas but that was just when lymphoedema/cellulitis erupted so had to cancel. Have just got another appointment in January for injections! Hoping not to jinx it but lymphoedema appears to be in check and cellulitis halted by permanent antibiotics.

so here’s hoping that the new year brings us both a little pressie!

wife has been an absolute star with no pressure at all, so feel a bit guilty.

 

Rob

Edited by member 12 Sep 2022 at 23:15  | Reason: Not specified

User
Posted 13 Sep 2022 at 13:44

Holding thumbs for you Rob! If this experience teaches us anything it must be about the powers of adaptability, resilience and the importance of relationships.

 
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