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When to start penile rehabilitation

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User
Posted 26 Mar 2023 at 20:22

Just had the surgery and have another week with a catheter. The next hurdle will obviously be incontinence. When should I start thinking about penile rehabilitation e.g. using a pump or injections. Or do some just wait and see if spontaneous erections return. At the moment I’m thinking about waiting a couple of months to see what happens naturally before getting help.

User
Posted 27 Mar 2023 at 00:05

You could start on daily low dose Tadalafil now, if you can get it. Some surgeons now start this just before the op.

As for a pump, most surgeons say wait 6-8 weeks after the op or catheter out, but you could start the process of trying to get one, and find out how long before you're allowed to start using it.

Both of these options are postcode lotteries.

User
Posted 27 Mar 2023 at 06:37

Prostate Cancer UK produce a leaflet called "Treating erectile dysfunction after surgery for pelvic cancers", with the sub heading "A quick guide for health professionals: supporting men with erectile dysfunction".

For Tablets (PDE5-Is) (sildenafil, tadalafil, vardenafil and avanafil) it says "Early initiation (after catheter removal or within 14 days) promotes early recovery and preservation of erectile function".

For a Vacuum Erection Device (pump) it says:

    • Early use (within one month after surgery) linked with better outcomes.

    • Can be initiated 4-8 weeks after surgery.

I had nerve sparing RARP in March 2022 and then had a wait of nearly 4 months to speak to an ED specialist. If I had my time again I would buy a cheap pump from someone like LoveHoney and would begin using that 4-8 weeks after surgery and would use my first appointment after surgery to ask to be put on a daily low dose of Tadalafil.

In an ideal world rehabilitation would begin as soon as possible, but in the real world it is tied to whenever your appointment is and that can mean significant delay, which in turn can impair recovery.

User
Posted 27 Mar 2023 at 09:28

Hope you get the Tadalafil, not prescribed in my trust.... The fact you are already booked in with the sexual health clinic possibly shows your trust is forward thinking.

User
Posted 29 Mar 2023 at 08:53

With the pump you just need to be habit forming. Use mine every day, in hope that one day everything returns to normal. Not used it for intercourse yet, find it a bit mechanical. The wife and I have had to be imaginative...

User
Posted 29 Mar 2023 at 15:17
You can get the pump via the NHS for free - it's a very good, well made one too. Your ED nurse or CNS can write to your GP and they'll prescribe it - all without seeing you, so fairly anxiety free! Yes, it's a bit of a chore and with no happy ending (at the moment) but well worth it - there's notes and videos on this in my blog (see profile). Happy to answer any questions . . .

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 29 Mar 2023 at 19:36
That is not true for everyone Esteban - a number of NHS trusts now refuse to issue vacuums on prescription despite NICE saying it is good practice
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 Mar 2023 at 09:12

I was given an appointment 12 weeks after surgery to discuss getting a pump but was prescribed Sildenafil as soon as the catheter was removed - initially 50mg four times a month now increased to 100mg following my 12 week appointment. Having read other threads on this site I bought a pump from Amazon which I started to use 4 weeks after surgery. This hasn’t caused me any problems and I feel helped in regaining my continence. Now have a medical grade pump through the NHS which is far superior and giving me a useable erection.

User
Posted 30 Mar 2023 at 12:53
In our local NHS, men are started on 2.5mg and progress to 5mg if not seeing any great progress. However, i am aware that in other Trusts, men start on 5mg and then reduce to 2.5mg if they find the side effects too much
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 04 Apr 2023 at 23:32

GregJ

Every step of my treatment I have had so many questions & I’ve found that the best place to get answers is on here from people who have been through it.

Show Most Thanked Posts
User
Posted 27 Mar 2023 at 00:05

You could start on daily low dose Tadalafil now, if you can get it. Some surgeons now start this just before the op.

As for a pump, most surgeons say wait 6-8 weeks after the op or catheter out, but you could start the process of trying to get one, and find out how long before you're allowed to start using it.

Both of these options are postcode lotteries.

User
Posted 27 Mar 2023 at 06:37

Prostate Cancer UK produce a leaflet called "Treating erectile dysfunction after surgery for pelvic cancers", with the sub heading "A quick guide for health professionals: supporting men with erectile dysfunction".

For Tablets (PDE5-Is) (sildenafil, tadalafil, vardenafil and avanafil) it says "Early initiation (after catheter removal or within 14 days) promotes early recovery and preservation of erectile function".

For a Vacuum Erection Device (pump) it says:

    • Early use (within one month after surgery) linked with better outcomes.

    • Can be initiated 4-8 weeks after surgery.

I had nerve sparing RARP in March 2022 and then had a wait of nearly 4 months to speak to an ED specialist. If I had my time again I would buy a cheap pump from someone like LoveHoney and would begin using that 4-8 weeks after surgery and would use my first appointment after surgery to ask to be put on a daily low dose of Tadalafil.

In an ideal world rehabilitation would begin as soon as possible, but in the real world it is tied to whenever your appointment is and that can mean significant delay, which in turn can impair recovery.

User
Posted 27 Mar 2023 at 07:50

Andy62 & PaulOct2021

Thank you for your quick replies. I have an appointment this morning with the ED nurse ( the clinic is only every 3 months ?!) - the appointment was made before I had a date for my surgery(?!). I was not going to go because it’s only 4 days since my surgery & I’m still dealing with the catheter. However, based on your sound advice I will go and ask to start low dose Tadalafil & get a pump ordered. Thanks guys.

User
Posted 27 Mar 2023 at 09:28

Hope you get the Tadalafil, not prescribed in my trust.... The fact you are already booked in with the sexual health clinic possibly shows your trust is forward thinking.

User
Posted 29 Mar 2023 at 00:08

Jim234

Thanks for reply - yeah it’s same in Lancashire - no Cialis. The pump is booked. 

User
Posted 29 Mar 2023 at 08:53

With the pump you just need to be habit forming. Use mine every day, in hope that one day everything returns to normal. Not used it for intercourse yet, find it a bit mechanical. The wife and I have had to be imaginative...

User
Posted 29 Mar 2023 at 15:17
You can get the pump via the NHS for free - it's a very good, well made one too. Your ED nurse or CNS can write to your GP and they'll prescribe it - all without seeing you, so fairly anxiety free! Yes, it's a bit of a chore and with no happy ending (at the moment) but well worth it - there's notes and videos on this in my blog (see profile). Happy to answer any questions . . .

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 29 Mar 2023 at 19:36
That is not true for everyone Esteban - a number of NHS trusts now refuse to issue vacuums on prescription despite NICE saying it is good practice
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 Mar 2023 at 09:12

I was given an appointment 12 weeks after surgery to discuss getting a pump but was prescribed Sildenafil as soon as the catheter was removed - initially 50mg four times a month now increased to 100mg following my 12 week appointment. Having read other threads on this site I bought a pump from Amazon which I started to use 4 weeks after surgery. This hasn’t caused me any problems and I feel helped in regaining my continence. Now have a medical grade pump through the NHS which is far superior and giving me a useable erection.

User
Posted 30 Mar 2023 at 09:12

That's a shame. I've not come across that. I hope with some pressure from urologists and ED staff, the GPs will relent. It's worth getting even if you have to pay. I would think that the issue of mental well-being is a factor here - I mean not only is the guy doing proper rehab in keeping his fellah in good shape but the emotional feeling of "I'm looking to the future.... things will get better", is an important factor. Health boards should be aware of this aspect too.

Here's the link to the commercial pump from iMediCare such a fun, tea time viewing!

https://youtu.be/HJWCzzII1oI

Edited by member 30 Mar 2023 at 09:14  | Reason: Update

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 30 Mar 2023 at 09:18
It isn't the GPs that are the problem - the ICB or Trust decides what GPs can and can't prescribe. When John stopped using his, I posted it to a member here who lives in a region where the ICB has banned vacuum pump prescription ... there are probably thousands of unloved pumps lying around in the UK that could be posted on to new homes!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 Mar 2023 at 09:28

Yes, probably. Some never used.

Maybe you could start an appeal & collection 🤔?

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 30 Mar 2023 at 12:18

Based on advice on here & also my own research I do think Tadalafil is the way to go. I am keen to start as soon as catheter comes off next week. Since Lancashire will not prescribe I have found it available on Numam.com - 2.5mg@ £44 or 5mg@ £68 ( 3 months supply)I think this is reasonable if it gives better results than Sildanfil. It would have to have it Ok’d by GP  before they send.
Just not sure what dose - leaving msg on ED nurse voicemail for2 days. Any advice on dosage? Also I don’t want to dismiss Sildanafil completely. Anybody used it & how would you rate success?
Thanks

 

Also anyone had success with 

User
Posted 30 Mar 2023 at 12:53
In our local NHS, men are started on 2.5mg and progress to 5mg if not seeing any great progress. However, i am aware that in other Trusts, men start on 5mg and then reduce to 2.5mg if they find the side effects too much
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 Mar 2023 at 13:19

I read that PDE5 inhibitors are the best way to help ensure fresh arterial blood gets into the erectile tissue. The report said that the stretching by use of a pump is also likely to be useful but the blood that is drawn into the penis with the pump is vein blood so is cooler and carries less oxygen. 

I guess a mixture of the two, starting PDE5’s ASAP and follow on with a pump is the best way forward?

I have this on my list to ask my consultant next week…. The question list will soon be transferred to a roll of wallpaper as I’m running out of room .. chortle, chortle. 

User
Posted 04 Apr 2023 at 23:32

GregJ

Every step of my treatment I have had so many questions & I’ve found that the best place to get answers is on here from people who have been through it.

User
Posted 07 Apr 2023 at 00:28

LynEyre

Received a prescription today from ED nurse for Tadalafil 10mg x8 tablets. A bit confused about this. I was under the impression that Tadalafil was taken daily.

User
Posted 07 Apr 2023 at 19:29
I think you must live in an area where the NHS Trust does not allow men to have the daily dose. I will also gazard a fuess that the 8 tablets are supposed to last you 2 months :-/ You may be best to cut the tablets in half and take half a tablet every 2 days, then put in a request for a repeat prescription in 3 weeks and see what happens
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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