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ED progress. what next?

User
Posted 06 Aug 2023 at 22:23

i am very early stage post RARP at 9 weeks and with only one nerve spared. Have started on 5mg Cialis and am pumping every day or two. However not much going on downstairs. Some engorgement from pump, building to 50%, but nothing to aid in penetration, and no signs of any nocturnal erections. Early days I know.

Question is what happens next. Do I ask to see if I can get an event dose to try and supplement my 5mg? Would that be a 10 or 15mg Cialis top up or a Viagra 50mg?

it seems that Injections might be next but I would like to try the pills if I can stomach the side effects? 

Thoughts?

 

 

 

 

 

User
Posted 07 Aug 2023 at 00:19

The two things you have, 5mg daily low dose Tadalafil and the pump are for penile rehabilitation - i.e. keeping the structures of your penis in good shape during the absence of erections. The Tadalafil helps with blood flow even when you don't have an erection, and that both helps with the health of the tissues of the penis, and gets more oxygen to the healing nerves.

Not sure what you mean by 50%, i.e. 50% of length, or 50% of rigidity?
Also, have you had a clinic session where you are told how to use the pump and it demoed on you? This is important and doubles the chances of using it successfully at home. If that hasn't happened, ask if you can have a pump clinic appointment (it's an off-shoot of the ED clinic, but probably has a much shorter waiting list). It's often run by the supplier reps who are very expert in it.

When you start using a pump, you have to go through a 2-4 week training period, which is usually uncomfortable and even painful while your penis gets used to being stretched in a way it hasn't been before, but this stops being uncomfortable by the end of the training period. During the training period, don't try using the construction rings, and you don't use them anyway for penile rehab. At only 9 weeks post op, you would still be in the training period. The pump should be able to get you completely rigid while you have the pump on, but it might be too painful to go that far at the beginning of the training period.

An erection using the pump won't be as long as a natural erection, because the pump only generates an erection in the external half of your penis, and not the other half which is inside your body.

I think it is worth asking for some event dose PDE5 inhibitors in addition to the daily low dose, and that would be 20mg Tadalafil or 100mg Sildenafil. Trying these occasionally will give you an earlier indication of erections returning (although it won't speed up the process). Another option would be to switch your 5mg daily low dose Tadalafil for 2x20mg/week Tadalafil which gives you the event dose twice a week to test things out, but because it lasts a while in your system, the level only drops a little below the 5mg daily low dose level just before the next 20mg dose, and you still get the continuous dosing. (This doesn't work with Sildenafil, as it only works for around 5 hours, and can't achieve continuous dosing.) The higher dose does increase the chance of side effects, but most people don't get side effects.

The pump can be used to have sex too, for which you use the constriction rings. Give this a go if you want to, but many men don't find the pump very satisfactory for this, even though very successful for penile rehab. If you can't yet get good enough erections with the event dose PDE5 inhibitors, you could ask for the vasodilator injections (Caverject, Invicorp, etc), which don't require working nerves.

Edited by member 07 Aug 2023 at 00:23  | Reason: Not specified

User
Posted 07 Aug 2023 at 18:00

As already been mentioned, it is a bit too soon after surgery. I had my surgery about 15mths ago, it has taken me up till now to get some level of erections, so not fully there yet. I take the 20mg ciallis 2ce a week (I must confess I have not been consistent), the pump as well not consistent. I read somewhere, that we should persevere with the tablets even if it does not feel like it is working as it crucial we get some blood flow going. I also tried the injections Alprostadil 10mcg - tried 4 different times - increase the dose from 2.5 - 10mcg in a stepwise manner. The last dose worked. I have been prescribed an alternative one 20mcg, however not tried that yet, I have a phobia for needles! 

I also feel if I had been consistent with the pump exercise and the tablets, I might have recovered a lot faster. I purchased a strap-on and penis sleeve to wear on the strap-on, we used that for 5mths, so got lazy and thought to myself this could be an easier alternative, who needs a hard-on! Overall, I am beginning to see some progress despite my not following the recovery process correctly.

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User
Posted 07 Aug 2023 at 00:19

The two things you have, 5mg daily low dose Tadalafil and the pump are for penile rehabilitation - i.e. keeping the structures of your penis in good shape during the absence of erections. The Tadalafil helps with blood flow even when you don't have an erection, and that both helps with the health of the tissues of the penis, and gets more oxygen to the healing nerves.

Not sure what you mean by 50%, i.e. 50% of length, or 50% of rigidity?
Also, have you had a clinic session where you are told how to use the pump and it demoed on you? This is important and doubles the chances of using it successfully at home. If that hasn't happened, ask if you can have a pump clinic appointment (it's an off-shoot of the ED clinic, but probably has a much shorter waiting list). It's often run by the supplier reps who are very expert in it.

When you start using a pump, you have to go through a 2-4 week training period, which is usually uncomfortable and even painful while your penis gets used to being stretched in a way it hasn't been before, but this stops being uncomfortable by the end of the training period. During the training period, don't try using the construction rings, and you don't use them anyway for penile rehab. At only 9 weeks post op, you would still be in the training period. The pump should be able to get you completely rigid while you have the pump on, but it might be too painful to go that far at the beginning of the training period.

An erection using the pump won't be as long as a natural erection, because the pump only generates an erection in the external half of your penis, and not the other half which is inside your body.

I think it is worth asking for some event dose PDE5 inhibitors in addition to the daily low dose, and that would be 20mg Tadalafil or 100mg Sildenafil. Trying these occasionally will give you an earlier indication of erections returning (although it won't speed up the process). Another option would be to switch your 5mg daily low dose Tadalafil for 2x20mg/week Tadalafil which gives you the event dose twice a week to test things out, but because it lasts a while in your system, the level only drops a little below the 5mg daily low dose level just before the next 20mg dose, and you still get the continuous dosing. (This doesn't work with Sildenafil, as it only works for around 5 hours, and can't achieve continuous dosing.) The higher dose does increase the chance of side effects, but most people don't get side effects.

The pump can be used to have sex too, for which you use the constriction rings. Give this a go if you want to, but many men don't find the pump very satisfactory for this, even though very successful for penile rehab. If you can't yet get good enough erections with the event dose PDE5 inhibitors, you could ask for the vasodilator injections (Caverject, Invicorp, etc), which don't require working nerves.

Edited by member 07 Aug 2023 at 00:23  | Reason: Not specified

User
Posted 07 Aug 2023 at 12:00

Thanks for the reply. I probably mean about 50% rigidity. Length has been ok.

whilst I haven’t had training with the pump I have been building it up slow, so I am happy with how it is working from an exercising it perspective. 

I will still keep using it, but I think now that I will at least check a higher dose of Cialis once or twice a week to see if that helps with rigidity.

the web seems to suggest not mixing Cialis with Viagra, but wonder whether a 5mg daily dose of Cialis could be enhanced on an ‘event’ basis with 50 mg Viagra? Or indeed 5mg Cialis with once or twice a week upping the Cialis to 20mg total, ie 5 plus 15?

 

has anyone had experience of doing this and whether either is more effective than just 5mg daily alone?

User
Posted 07 Aug 2023 at 12:09
Just to add my 2c - I can't comment on the drug side of things but are you getting sufficient mental arousal when you are trying to get an erection? It's very early days for you, even if the nerves are spared, they are likely to have taken a bit of a beating as they are teased out of the bundle and may take a while to repair. You will only get back, at best, whatever you had before the RARP and may need some form of encouragement for something to happen. :)
User
Posted 07 Aug 2023 at 17:49

Originally Posted by: Online Community Member

 

the web seems to suggest not mixing Cialis with Viagra, but wonder whether a 5mg daily dose of Cialis could be enhanced on an ‘event’ basis with 50 mg Viagra? Or indeed 5mg Cialis with once or twice a week upping the Cialis to 20mg total, ie 5 plus 15?

 

has anyone had experience of doing this and whether either is more effective than just 5mg daily alone?

Hi,

I experimented with various combinations when I was at your stage of recovery. Nothing happened in the downstairs department, which only added to my disappointment. I failed to manage my expectations which added to my low mood. 

I didn't have a useful erection until around eight months post op. 

Roll on three and half years however,  things are working very well including morning wood. I still take 20mg tadalafil although I cut them in half and take them alternate days. 

I think at 9 weeks, keep taking the cialis at either 5 or 20mg, but relax and try not to expect too much, while still having fun.

Apart from that, it's worth considering using injections which would get you back in the saddle as it were. Plus a huge confidence boost.

Hope this helps. 

Kev.

Edited by member 07 Aug 2023 at 17:56  | Reason: Added note

User
Posted 07 Aug 2023 at 18:00

As already been mentioned, it is a bit too soon after surgery. I had my surgery about 15mths ago, it has taken me up till now to get some level of erections, so not fully there yet. I take the 20mg ciallis 2ce a week (I must confess I have not been consistent), the pump as well not consistent. I read somewhere, that we should persevere with the tablets even if it does not feel like it is working as it crucial we get some blood flow going. I also tried the injections Alprostadil 10mcg - tried 4 different times - increase the dose from 2.5 - 10mcg in a stepwise manner. The last dose worked. I have been prescribed an alternative one 20mcg, however not tried that yet, I have a phobia for needles! 

I also feel if I had been consistent with the pump exercise and the tablets, I might have recovered a lot faster. I purchased a strap-on and penis sleeve to wear on the strap-on, we used that for 5mths, so got lazy and thought to myself this could be an easier alternative, who needs a hard-on! Overall, I am beginning to see some progress despite my not following the recovery process correctly.

User
Posted 07 Aug 2023 at 19:45

Not much mention of those of us on the HT/RT route. We’ve got 3 years of ED to deal with, maybe more😟 I’d be interested to hear what anyone did in particular for penile rehab…. I think it’s very important for us and have finally(after a year of asking) managed to get an appointment with the ED clinic.I already have the pump and use it daily which is helping  but am interested to know what else I can do.

User
Posted 07 Aug 2023 at 20:54

When I had robot-assisted prostatectomy in 2011 my consultant told me that I should not believe in all I hear or read about nerve-saving surgery; he said he will do his best but can't promise total recovery. I wasn't too bothered because my erections were waining anyway because of my age and we realised that we were going to have to find a way of maintaining our sex life. Events overtook our problem when I was diagnosed with prostate cancer. After my surgery we decided not to struggle and try to achieve natural erections and opted for the VED (penis pump) approach and our sex life is back to what it was when we were younger. Of course in 12 years since my surgery techniques have improved but reading various posts I get the impression that surgeons tend to promise more than what is actually delivered. Of course, there are men who make remarkable recovery. I have a gut feeling that in majority of the cases erections after surgery in general do not return to what they were before. Coincidently, this morning one of the writers, I am not sure which site, sent me a link which is the only research paper I know of which has surveyed the effect of prostatectomies on ED and it makes interesting but discouraging reading. Some of you may be interested in reading this paper, here is the link:

https://onlinelibrary.wiley.com/doi/10.1111/andr.282

Inspite of the conclusions in the paper I don't regret have opted for surgery. I believe it remains a strong contender in many cases - that is my non-medical opinion!

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 07 Aug 2023 at 22:27

Hi Andy62

"An erection using the pump won't be as long as a natural erection, because the pump only generates an erection in the external half of your penis, and not the other half which is inside your body."

You have made an interesting comment above. I am not sure I understand what you mean, particularly with respect to the reference to the 'other half which is inside your body'. As you probably know we have been using VEDs  for many years for penetrative and other types of sex quite successfully. I must say my experience is that once you put the ring/s on the only difference I experience is  that because of the ring/s at the base of the penis, due to the 'hinge' effect at the base of the penis, the penis wobbles and feels quite unnatural and you have to be careful how you or your wife handle it!  Therefore once it is erect the penis is as long as it was (at least mine!) before the surgery after a few months of using the pump, the ring/s and having penetrative or oral sex; my wife hasn't notice any change in the length! As far as I can see and feel my penis is only external, and beyond the base of the penis its is the pelvic area which accommodates a section of the urethra, the external sphincter and the bladder.  

As a side issue I know that after surgery some men experience shortening of their penis (in some cases unfortunately it also bends)  because the surgeons have to 'pull' the urethra  to connect it to the bladder.

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 08 Aug 2023 at 01:08

Hello Pratap,

Half of your penis is the visible part you see, the other half is inside your body and (in the form of the corpus cavernosum, which is the main pair of erectile parts), is anchored at its base to your pelvis. The pump only inflates the external half of the penis - the internal part remains flaccid. (This is also why the "hinge" effect - the erect external half is not rigidly attached through to the pelvis.) With a natural erection which is the full length of the corpus cavernosum, the internal part grows too, but being anchored at the base, this added length is pushed externally, adding to the length of the external part. This doesn't happen when you use a pump - you don't get the internal half expanding into the visible penis, because it's not subject to the vacuum.

When I was on HT, I was lucky in that I could still get erections just as good as normal if I really put my mind to it (needed much more concentration with suppressed libido, and usually some porn too). I had never measured my erections before the prostate cancer diagnosis. However, with many sources saying your erections will shrink due to HT and/or RT, I started keeping an eye on this, and they didn't shrink at all (except temporarily immediately after HDR brachytherapy, but that recovered in 3 months). However, I was mostly using the pump, and even though that produced a rock solid erection in the visible part of the penis, it was a good inch shorter than the natural erections in the whole penis.

Having said that, I did get bored with the pump after about a year (and some unrelated family problems were going on), usage tapered off, and then erections did shrink. Getting back to the pump stopped further shrinkage and there may have been a little recovery. I continued using the pump until I finished the HT, and was left a bit shorter which I blamed on the lapse in pump usage at about the 1 year point. However, I have since noticed that the length is recovering now that my Testosterone has returned (without any further use of the pump), and now only a ¼inch less than it originally started out.

User
Posted 08 Aug 2023 at 09:01

Originally Posted by: Online Community Member

However, I have since noticed that the length is recovering now that my Testosterone has returned (without any further use of the pump), and now only a ¼inch less than it originally started out.

Thanks Andy

That was one of my questions. I didn't start from much (probably 5") and was a grower rather than a shower so post RARP I had lost about 1.5". Using the VED has started to bring it back to maybe 4" but I wondered whether regular use would extend the urether allowing a longer penis?

User
Posted 09 Aug 2023 at 20:47

Thanks for the response. Yes am definitely mentally stimulated, so I don’t think that’s an issue.

User
Posted 14 Sep 2023 at 03:19

Originally Posted by: Online Community Member

the web seems to suggest not mixing Cialis with Viagra, but wonder whether a 5mg daily dose of Cialis could be enhanced on an ‘event’ basis with 50 mg Viagra? Or indeed 5mg Cialis with once or twice a week upping the Cialis to 20mg total, ie 5 plus 15?

I am only 3 weeks post op. Unilateral nerve sparing.

I have been taking 5mg Cialis daily. I found that adding 50mg Viagra made some difference. I was able to get a semi erection. 

But there was a fair bit of urine squirting while I was playing with myself!

User
Posted 14 Sep 2023 at 09:02

Originally Posted by: Online Community Member

I am only 3 weeks post op. Unilateral nerve sparing.

I have been taking 5mg Cialis daily. I found that adding 50mg Viagra made some difference. I was able to get a semi erection. 

But there was a fair bit of urine squirting while I was playing with myself!

I would suggest that that is far too early - you need to let your body heal first - I'd wait another month before trying too hard (excuse the pun lol)

 
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