I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Advice required - Too soon to give up on Tadalafil?

Email this conversation Print this conversation
User
Posted 03 Dec 2020 at 21:44

Hoping to tap in to the advice and experience of all who have been before me.

I was diagnosed with prostrate cancer in March 2020 just as the first COVID lockdown started with a Gleason score of 7 (3+4). After discussions with consultants and family I opted to go for the Radical Prostatectomy. Consultants strongly recommended it given my age (55) and fitness levels etc. Unfortunately the operation was cancelled at the time due to lockdown, but fortunately they got me in at the beginning of June 2020, removed my prostrate and I was given the good news in July 2020 that it had clear margins. Happy days!

I have had nerves spared, but it is not clear how many - to explain, prior to surgery, the consultant said he was confident of doing a unilateral spare. Then post surgery he informed me that he had spared the nerves on both sides as 'it looks different when you can get it on the table, rather than through an MRI scan'. However on my post op follow up with the andrology department, they informed me the records and operation notes recorded a unilateral spare, so we are not 100% sure what nerves I have left, but it seems I have at least one set!

I was initially started on 50mg Sildenafil, but this had little effect on obtaining an erection. On review in September 2020 after discussion with my andrology specialist, I was moved onto the daily 5mg Tadalafil and also put onto the Soma pump. I have used both religiously every day since being prescribed them, so over 3 months now.

The pump clearly gives me increased size and girth, but like many others, I struggle to have any feeling in my penis immediately after pumping. It does not give a really hard erection and the 'erection' even with the rings being used does not last long. That having been said, on maybe two/three occasions, with the help of the pump, my gf and I have managed to have penetrative sex. It was only in a certain position and if I'm being honest, whilst my gf says it satisfied her, we were both petrified of it falling out all the time, but at least we could laugh about it! So all in all it hasn't felt natural and without the pump, my penis does not get hard enough for any form of penetration. My gf says at times times I try too hard to satisfy her and need to be more patient. I do definitely get frustrated about it and have feelings of inadequacy.

So I'm now almost 6 months post op, incontinence completely under control, but this latest treatment for ED does not seem to be working how I would like it to as of yet. I have another andrology appointment in January. My gf  and I have been discussing whether we should look at perhaps asking for the injection route, but would appreciate any advice from others who have been there before. Am I expecting too much too soon? Should I give this treatment longer or are the injections more likely to give a better result?

All advice and others' experience gratefully received.

User
Posted 04 Dec 2020 at 10:02
Thanks guys for all the advice and guidance. We're certainly having fun in recovery :). And it also helps that we can do it with humour and at least laugh together when it doesn't work quite right or falls out no matter how frustrating! As my gf has said (she's been great throughout) - we will keep going and enjoying trying lots of different things...its not all about penetration..hopefully that will come somewhere along the line but until then lets enjoy the closeness and the satisfaction we can give each other in different ways...
User
Posted 04 Dec 2020 at 01:02
Andy you are the font of all knowledge on this but I think you are wrong. Given the half life of Tadalafil it will build up to be the equivalent of an event dose if taken daily. Certainly my experience of it was it was better than an event dose, I just couldn't hack the aches and pains.

Jellybean 6 months is way to soon to be worrying and any worry will screw your erection so it will become a vicious circle. I was 12 months before I had sex with the pump, another 12 months with injections and finally after 2 years it all just seemed to come together. 5 years on and a cock ring and a smile is all I need!

User
Posted 03 Dec 2020 at 22:32

The 5mg daily Tadalafil is not to give you erections, it's to improve blood flow when the penis is flacid, in an attempt to prevent damage to your penis caused by lack of regular erections. So if you still can't get erections, stick with it.

To get erections at your stage, you need to try higher strength PDE5 inhibitors, probably max dose, such as 20mg Tadalafil or 100g Sildenafil, unless there's any other medical condition that precludes their use.

If those don't work, you should talk to your ED clinic about trying vasodilator drugs (usually injections such as Caverjet, Viridal, or Invicorp).

User
Posted 04 Dec 2020 at 01:47

Half-life of Tadalafil is about 18 hours, so I say that if you're on the 5mg daily dose, you're running at about the equivalent of an 8.5mg dose as a once-off shortly after taking your 5mg tablet.

That's enough to significantly improve erections if you have something half-way decent to start with, but when starting off with most of the nerves not working due to trauma, you are likely to need max event doses to see when the first stirrings start happening, which you can reduce as more nerves start working.

If you only have the 5mg tablets, a way to make an event dose (20mg) is to take today's tablet, plus tomorrow's tablet, plus the next day's tablet, all tonight. That will get you to the equivalent of an 18.5mg dose tonight. Then skip next 2 nights to get back in sync, but you'll still have the continuous dosing as today's dose decays over next 2 days.

If we had upload capability here, I'd show you this plotted on an Excel spreadsheet.

User
Posted 04 Dec 2020 at 08:03
Yep way way too early. Don’t worry time flies. Stick with the daily Tadalafil and rehab with pump as much as you can. It’s hard to grow back the root of your penis inside your body but it can happen. I found event doses never worked and were horrible so I used Invicorp25 injections which were super. Oh and we built a big toy shop in the bedroom. After 2 1/2 yrs I was back to normal too. Still use daily tadalafil and a jelly ring but 100% rock hard. You do lose length over time though as things settle.

Good look and be patient , and remember you’re actually probably getting more than the neighbors :-)

User
Posted 04 Dec 2020 at 08:33
Six months is perhaps a little too soon! As has been said, keep using the Tadalfil 5mg daily and the pump. I would guess that at some point after a year, it is worth taking stock to see what does or doesn’t work for you. There’s plenty to go at out there, and I suspect injections are towards the end of the list – if you can get anything else to work, it’s worth trying. There should be an ED nurse available to you, maybe have a discussion with them.

I tried 20mg Tadalfil for events, but the effects were horrible so I stopped trying that approach. Then I tried 100mg Sildenafil, which gave me such extreme congestion that it removed all romantic intentions. I’ve finally settled on 5mg Tadalfil daily, and 50mg Sildenafil to top up with. I have checked this out with the ED nurse and my GP, they are both happy with this for me, although I know that is not always the case for everyone. Check with the medicos first!

The combo of pills I use does work extremely well for me, both at night and the following morning. And then of course there’s always the cock ring, though that is mainly used to stop leakage. Keep going, hopefully you’ll find a solution that works for you in time once the initial recovery has been done.

User
Posted 04 Dec 2020 at 08:43

As the others have said, it's early days.. keep taking the tadalafil, use the pump daily and try not to lose heart when things don't happen. Overcoming ED after surgery for many of us is a long road and seems frustratingly slow, so persevere and don't give up. 

I'm just a year on and as far as penetration goes, I have to be really excited for it to happen, and even then it's nowhere near 100%, so there's plenty of foreplay to get warmed up and that's the fun part.

Good luck. 

Kev.

User
Posted 04 Dec 2020 at 10:22

Hi Jellybean. I had RP May 2019 50% sparing. Pump use regularly, 5mg Tad daily and Sid for events. Currently I use 100mg for event. Even after 18 months I have not had a full erection although there are definite signs of improvement. It's a long journey so keep at it.

User
Posted 04 Dec 2020 at 11:27
User
Posted 04 Dec 2020 at 11:37
Hi Jellybean

Yes I agree with all above very early days. Nearly 4 years post RARP for me and not quite there yet. Very small occasional improvements still, although not very recently, hope I haven't plataued although there have been periods of no improvement before.

Also on Tadadefil 5ml/day and top up with Sildenafil and daily exercise with the pump. Tried injections but gave me a prolonged painful erection. Keep using the pump it's crucial for physio to avoid permanent damage and atrophy.

Good luck

Cheers

Bill

User
Posted 04 Dec 2020 at 13:22

No, I take the 5mg daily usually at night to avoid any side effects. Then the 100mg Sildenafil as required (about once a week). This does give me side effects of very flushed face & neck and then a slight blue tinge to vision for a few hours. We tend to have sex in the afternoon. I also avoid any driving after the 100mg just in case. The sildenafil and pump gives the best results 10 - 15 minutes before "Ugandan Discussions"

User
Posted 04 Dec 2020 at 15:40

Originally Posted by: Online Community Member
finally settled on 5mg Tadalfil daily, and 50mg Sildenafil to top up with. I have checked this out with the ED nurse and my GP, they are both happy with this for me, although I know that is not always the case for everyone. Check with the medicos first!

 

This definitely worked for me. These days just use the 50mg of Sildenafil for events and it works fine.

User
Posted 06 Dec 2020 at 12:58

Thanks Jellybean, this is a profound change in our bodies, and it takes time for us and our partners to adjust!

User
Posted 06 Dec 2020 at 13:45

Hi Jellybean,

Early days, I can't add much more and don't post much these days. However some resonance from your posts and those replying.  Please see my profile.  In summary and retrospect:  years recovery, do as you are doing.  I was told non nerve sparing.  Penile health is key, and communicate with your partner, re.  their needs and expectations.

Ie dry orgasms, ie as I assume most men experienced single ejaculation at or just after climax.  Point of no return  etc..   

I think it was Bill, who spoke about 'plateued' , and just read his profile.  In my case the first 3 years were a challenge. The main issue, to excuse pun, is occasionally foreplay urine leakage.      All the very best .

 

Regards Gordon

 

 

Show Most Thanked Posts
User
Posted 03 Dec 2020 at 22:32

The 5mg daily Tadalafil is not to give you erections, it's to improve blood flow when the penis is flacid, in an attempt to prevent damage to your penis caused by lack of regular erections. So if you still can't get erections, stick with it.

To get erections at your stage, you need to try higher strength PDE5 inhibitors, probably max dose, such as 20mg Tadalafil or 100g Sildenafil, unless there's any other medical condition that precludes their use.

If those don't work, you should talk to your ED clinic about trying vasodilator drugs (usually injections such as Caverjet, Viridal, or Invicorp).

User
Posted 04 Dec 2020 at 01:02
Andy you are the font of all knowledge on this but I think you are wrong. Given the half life of Tadalafil it will build up to be the equivalent of an event dose if taken daily. Certainly my experience of it was it was better than an event dose, I just couldn't hack the aches and pains.

Jellybean 6 months is way to soon to be worrying and any worry will screw your erection so it will become a vicious circle. I was 12 months before I had sex with the pump, another 12 months with injections and finally after 2 years it all just seemed to come together. 5 years on and a cock ring and a smile is all I need!

User
Posted 04 Dec 2020 at 01:47

Half-life of Tadalafil is about 18 hours, so I say that if you're on the 5mg daily dose, you're running at about the equivalent of an 8.5mg dose as a once-off shortly after taking your 5mg tablet.

That's enough to significantly improve erections if you have something half-way decent to start with, but when starting off with most of the nerves not working due to trauma, you are likely to need max event doses to see when the first stirrings start happening, which you can reduce as more nerves start working.

If you only have the 5mg tablets, a way to make an event dose (20mg) is to take today's tablet, plus tomorrow's tablet, plus the next day's tablet, all tonight. That will get you to the equivalent of an 18.5mg dose tonight. Then skip next 2 nights to get back in sync, but you'll still have the continuous dosing as today's dose decays over next 2 days.

If we had upload capability here, I'd show you this plotted on an Excel spreadsheet.

User
Posted 04 Dec 2020 at 08:03
Yep way way too early. Don’t worry time flies. Stick with the daily Tadalafil and rehab with pump as much as you can. It’s hard to grow back the root of your penis inside your body but it can happen. I found event doses never worked and were horrible so I used Invicorp25 injections which were super. Oh and we built a big toy shop in the bedroom. After 2 1/2 yrs I was back to normal too. Still use daily tadalafil and a jelly ring but 100% rock hard. You do lose length over time though as things settle.

Good look and be patient , and remember you’re actually probably getting more than the neighbors :-)

User
Posted 04 Dec 2020 at 08:33
Six months is perhaps a little too soon! As has been said, keep using the Tadalfil 5mg daily and the pump. I would guess that at some point after a year, it is worth taking stock to see what does or doesn’t work for you. There’s plenty to go at out there, and I suspect injections are towards the end of the list – if you can get anything else to work, it’s worth trying. There should be an ED nurse available to you, maybe have a discussion with them.

I tried 20mg Tadalfil for events, but the effects were horrible so I stopped trying that approach. Then I tried 100mg Sildenafil, which gave me such extreme congestion that it removed all romantic intentions. I’ve finally settled on 5mg Tadalfil daily, and 50mg Sildenafil to top up with. I have checked this out with the ED nurse and my GP, they are both happy with this for me, although I know that is not always the case for everyone. Check with the medicos first!

The combo of pills I use does work extremely well for me, both at night and the following morning. And then of course there’s always the cock ring, though that is mainly used to stop leakage. Keep going, hopefully you’ll find a solution that works for you in time once the initial recovery has been done.

User
Posted 04 Dec 2020 at 08:43

As the others have said, it's early days.. keep taking the tadalafil, use the pump daily and try not to lose heart when things don't happen. Overcoming ED after surgery for many of us is a long road and seems frustratingly slow, so persevere and don't give up. 

I'm just a year on and as far as penetration goes, I have to be really excited for it to happen, and even then it's nowhere near 100%, so there's plenty of foreplay to get warmed up and that's the fun part.

Good luck. 

Kev.

User
Posted 04 Dec 2020 at 10:02
Thanks guys for all the advice and guidance. We're certainly having fun in recovery :). And it also helps that we can do it with humour and at least laugh together when it doesn't work quite right or falls out no matter how frustrating! As my gf has said (she's been great throughout) - we will keep going and enjoying trying lots of different things...its not all about penetration..hopefully that will come somewhere along the line but until then lets enjoy the closeness and the satisfaction we can give each other in different ways...
User
Posted 04 Dec 2020 at 10:22

Hi Jellybean. I had RP May 2019 50% sparing. Pump use regularly, 5mg Tad daily and Sid for events. Currently I use 100mg for event. Even after 18 months I have not had a full erection although there are definite signs of improvement. It's a long journey so keep at it.

User
Posted 04 Dec 2020 at 11:27
User
Posted 04 Dec 2020 at 11:37
Hi Jellybean

Yes I agree with all above very early days. Nearly 4 years post RARP for me and not quite there yet. Very small occasional improvements still, although not very recently, hope I haven't plataued although there have been periods of no improvement before.

Also on Tadadefil 5ml/day and top up with Sildenafil and daily exercise with the pump. Tried injections but gave me a prolonged painful erection. Keep using the pump it's crucial for physio to avoid permanent damage and atrophy.

Good luck

Cheers

Bill

User
Posted 04 Dec 2020 at 11:38

Thanks Prosixty - I presume on the days youre taking the event tablet, you give the daily a miss?

User
Posted 04 Dec 2020 at 13:22

No, I take the 5mg daily usually at night to avoid any side effects. Then the 100mg Sildenafil as required (about once a week). This does give me side effects of very flushed face & neck and then a slight blue tinge to vision for a few hours. We tend to have sex in the afternoon. I also avoid any driving after the 100mg just in case. The sildenafil and pump gives the best results 10 - 15 minutes before "Ugandan Discussions"

User
Posted 04 Dec 2020 at 15:35

Originally Posted by: Online Community Member

No, I take the 5mg daily usually at night to avoid any side effects. Then the 100mg Sildenafil as required (about once a week). This does give me side effects of very flushed face & neck and then a slight blue tinge to vision for a few hours. We tend to have sex in the afternoon. I also avoid any driving after the 100mg just in case. The sildenafil and pump gives the best results 10 - 15 minutes before "Ugandan Discussions"

Haha, I had to look up "Ugandan Discussions" on the Urban Dictionary.

I will do my best to slip that into conversation at the earliest opportunity. 

Cheers.

Kev.

User
Posted 04 Dec 2020 at 15:40

Originally Posted by: Online Community Member
finally settled on 5mg Tadalfil daily, and 50mg Sildenafil to top up with. I have checked this out with the ED nurse and my GP, they are both happy with this for me, although I know that is not always the case for everyone. Check with the medicos first!

 

This definitely worked for me. These days just use the 50mg of Sildenafil for events and it works fine.

User
Posted 05 Dec 2020 at 10:12

Originally Posted by: Online Community Member

So I'm now almost 6 months post op, incontinence completely under control, but this latest treatment for ED does not seem to be working how I would like it to as of yet.

Jellybean, I am 9 months post surgery and experiencing similar struggles. My experience with PDE5 drugs was underwhelming (I checked - no discernable difference when I took the daily dose or stopped, or took the "date night" dose) - and I know they work well for others. I reckon each of us is a little different. 

I love the way you and your partner are laughing and experimenting - this has been the biggest blessing for me and my partner. Like she said, erections and penetration are not everything, and actually not required for making love. I keep telling myself that and I still feel disappointed and really miss my hardness and all the joy it used to bring.

For what it's worth, I am seeing awfully slow but definite progress based primarily on the pump and manual stimulation. The shift is measured more in months than in weeks or days - as so many others on this forum have indicated. Right now, that is cold comfort but let's hang in there.

User
Posted 06 Dec 2020 at 11:33

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

So I'm now almost 6 months post op, incontinence completely under control, but this latest treatment for ED does not seem to be working how I would like it to as of yet.

Jellybean, I am 9 months post surgery and experiencing similar struggles. My experience with PDE5 drugs was underwhelming (I checked - no discernable difference when I took the daily dose or stopped, or took the "date night" dose) - and I know they work well for others. I reckon each of us is a little different. 

I love the way you and your partner are laughing and experimenting - this has been the biggest blessing for me and my partner. Like she said, erections and penetration are not everything, and actually not required for making love. I keep telling myself that and I still feel disappointed and really miss my hardness and all the joy it used to bring.

For what it's worth, I am seeing awfully slow but definite progress based primarily on the pump and manual stimulation. The shift is measured more in months than in weeks or days - as so many others on this forum have indicated. Right now, that is cold comfort but let's hang in there.

Thanks Mish58..I'm hanging in there...good days and bad days..but rolling with the punches as best we can..certainly not giving up yet..long way to go and lots of fun to be had :)

User
Posted 06 Dec 2020 at 12:58

Thanks Jellybean, this is a profound change in our bodies, and it takes time for us and our partners to adjust!

User
Posted 06 Dec 2020 at 13:45

Hi Jellybean,

Early days, I can't add much more and don't post much these days. However some resonance from your posts and those replying.  Please see my profile.  In summary and retrospect:  years recovery, do as you are doing.  I was told non nerve sparing.  Penile health is key, and communicate with your partner, re.  their needs and expectations.

Ie dry orgasms, ie as I assume most men experienced single ejaculation at or just after climax.  Point of no return  etc..   

I think it was Bill, who spoke about 'plateued' , and just read his profile.  In my case the first 3 years were a challenge. The main issue, to excuse pun, is occasionally foreplay urine leakage.      All the very best .

 

Regards Gordon

 

 

 
Forum Jump  
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2024 Prostate Cancer UK