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User
Posted 13 Aug 2021 at 16:46

I had my prostate robotically removed at Cheltenham hospital August 26th 2020. I have a gorgeous Wife and two very self sufficient children. I am now cancer free and obviously feel very grateful to all who helped my recovery. I am 61 years old and before my operation, I had a very good sex life. For the 1st time in my life I wrote a diary about my prostate journey which I could share on here if asked. Obviously because of Covid, I was told I had cancer over the phone, and was allowed no visitors in hospital but that was life at that time.

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I'm grateful to have found this site as I am in need of communication about erectile dysfunction. I'm at this time on Sildenafil 100mg twice a week plus I've been on a vacuum pump now for about 6 months. I dont get much reaction from Sildenafil, but with the pump I'm getting erect but not enough to have intercourse. I'm using two rings but it's still not enough yet. I do climax though and it does feel the same without the mess. I think I just need advice and someone to talk to who can give me any knowledge

User
Posted 13 Aug 2021 at 22:07

Do you have an ED nurse or is the GP trying to manage it?

Have you tried different tablets; daily Cialis might be better, or if they won't prescribe that in your area, try levitra. 

Do you take the tablet on an empty stomach? Do you feel randy or just anxious? The tablets don't work unless you are feeling up for it. Do you leave enough time between taking the tablet and trying to have sex? In our house, J would take the tablet in the afternoon to have sex in the evening. 

With the pump- if you are getting fully erect in the tube but can't maintain it, you are either not using tight enough rings or your technique for removing the pump needs some work. If you get some engorgement in the tube but not a firm erection, either the vacuum seal against your skin isn't good or the pumping style isn't quite right. Is it a proper NHS pump? Are you keeping your public hair trimmed to get a good seal? 

Edited by member 13 Aug 2021 at 22:15  | Reason: Not specified

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

User
Posted 14 Aug 2021 at 00:41

Tim,

I guess there are two things:

1) How best to recover erectile function, and

2) How to have sex now.

No 1) is penile rehabilitation and it sounds like you're doing the right things, PDE5 inhibitor (even if it doesn't give you an erection), and using the pump to ensure you are getting frequent erections. I would also suggest trying Tadalafil (unbranded Cialis) instead. It lasts much longer and with appropriate dosing can achieve continuous dosing, which may be more effective for penile rehabilitation.

For 2), you may need to try something different. Again, worth seeing if Tadalafil works any better - different of the PDE5 inhibitors work differently in different people. However, you may want to talk about trying one of the vasodilator drugs, which are mostly injections into the penis, but some other types are also available. This may be temporary while you wait for working erections to return. It's also good for penile rehabilitation. You would initially need to be shown how to do the injections in an ED clinic, and you can probably most easily get an appointment by asking your CNS.

User
Posted 14 Aug 2021 at 06:30
Lyn and Andy have covered your options.

My experience at 24 months post op was that the injections were a game changer. BUT you need to come to terms with the fact it is going to be different. Embrace the difference and don't get hung up on trying to be the man you were.

Just a Durex cock ring for me now and loving every minute!

User
Posted 14 Aug 2021 at 19:34

Hi,

I did a diary on line using Google Sites which is free but not that good as a web tool in my opinion.  The link is in my profile.

Gravity has quite an effect on erection.  After a couple of years I found I could get almost a pre-operation erection while standing.    I haven't taken any tablets although I did buy a cheap pump which gave it a step improvement in not needing the pump while vertical.   When horizontal it feels like its responding without a pump but it's a miserable affair useful for nothing.  In no situation will it visibly respond without some form of manual stimulation.   Although sometimes it leaks a little bit of urine as a signal there is a response somewhere down there just from thinking about it, sometimes in the street which keeps your thoughts purer, that's a not an uncommon side effect apparently.

All the best,  Peter

 

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User
Posted 13 Aug 2021 at 22:07

Do you have an ED nurse or is the GP trying to manage it?

Have you tried different tablets; daily Cialis might be better, or if they won't prescribe that in your area, try levitra. 

Do you take the tablet on an empty stomach? Do you feel randy or just anxious? The tablets don't work unless you are feeling up for it. Do you leave enough time between taking the tablet and trying to have sex? In our house, J would take the tablet in the afternoon to have sex in the evening. 

With the pump- if you are getting fully erect in the tube but can't maintain it, you are either not using tight enough rings or your technique for removing the pump needs some work. If you get some engorgement in the tube but not a firm erection, either the vacuum seal against your skin isn't good or the pumping style isn't quite right. Is it a proper NHS pump? Are you keeping your public hair trimmed to get a good seal? 

Edited by member 13 Aug 2021 at 22:15  | Reason: Not specified

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

User
Posted 14 Aug 2021 at 00:41

Tim,

I guess there are two things:

1) How best to recover erectile function, and

2) How to have sex now.

No 1) is penile rehabilitation and it sounds like you're doing the right things, PDE5 inhibitor (even if it doesn't give you an erection), and using the pump to ensure you are getting frequent erections. I would also suggest trying Tadalafil (unbranded Cialis) instead. It lasts much longer and with appropriate dosing can achieve continuous dosing, which may be more effective for penile rehabilitation.

For 2), you may need to try something different. Again, worth seeing if Tadalafil works any better - different of the PDE5 inhibitors work differently in different people. However, you may want to talk about trying one of the vasodilator drugs, which are mostly injections into the penis, but some other types are also available. This may be temporary while you wait for working erections to return. It's also good for penile rehabilitation. You would initially need to be shown how to do the injections in an ED clinic, and you can probably most easily get an appointment by asking your CNS.

User
Posted 14 Aug 2021 at 06:30
Lyn and Andy have covered your options.

My experience at 24 months post op was that the injections were a game changer. BUT you need to come to terms with the fact it is going to be different. Embrace the difference and don't get hung up on trying to be the man you were.

Just a Durex cock ring for me now and loving every minute!

User
Posted 14 Aug 2021 at 15:27

Thank you for your answers Lyn Eyre, Andy62 & FranciJ1.

I am new to this forum and I’m so grateful for you support.

I do have a nurse but this seems better for me and more personal as my nurse is so busy at this time. I am using the tightest ring on my NHS pump, but I will check out the technique out. I’ve been told to use 2 rings, so that’s what I will try next. 

i have tried Tafalafil but I had a reaction to them. Bad headache and cramps

 Is the injection painful? as that seems to be on the table next for me. 
Thank you for your positive comments, that helps in itself

User
Posted 14 Aug 2021 at 19:34

Hi,

I did a diary on line using Google Sites which is free but not that good as a web tool in my opinion.  The link is in my profile.

Gravity has quite an effect on erection.  After a couple of years I found I could get almost a pre-operation erection while standing.    I haven't taken any tablets although I did buy a cheap pump which gave it a step improvement in not needing the pump while vertical.   When horizontal it feels like its responding without a pump but it's a miserable affair useful for nothing.  In no situation will it visibly respond without some form of manual stimulation.   Although sometimes it leaks a little bit of urine as a signal there is a response somewhere down there just from thinking about it, sometimes in the street which keeps your thoughts purer, that's a not an uncommon side effect apparently.

All the best,  Peter

 

 
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