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How soon after surgery to people normally give the pump and or tablets and or injections a go?

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User
Posted 26 Mar 2021 at 17:43

Generally fit and healthy 51 year old

Nerve sparing Open RP - 1/3/21 In Solihull 

TWOC - 8/3/21

Follow up review with surgeon - 21/3/21 , Histology showed clear surgical margins. No evidence of spread outside of the prostate, so the early signs are that he’s done what he said he’d do and got rid of it all. Now 3 months wait for follow up bloods.

 

It’s been nearly 4 weeks since surgery, recovery going very well. The wound is healing nicely, easily able to walk about 2-3 miles a day and I was dry the day after the catheter came out. However (unsurprisingly I suppose) there is absolutely nothing there erection wise. Having never had a problem before the surgery I was stupidly expecting at least something fairly soon after surgery. But after trawling this site for info I now realise I have unfortunately, vastly underestimated the issue. So a couple of questions i haven't been able to find the answers to.

  1. How soon after surgery to people normally give the pump and or tablets and or injections a go ? 

  2. Do you need to have at least the beginnings of a natural erection however small, showing the start of the nerve repair, for the tablets to be worth taking i.e. do the just enhance what’s there naturally or can they produce something where previously there was nothing at all? 

 

I realise it’s still very very early days and will obviously be guided by the medical advice but I’m happy and willing to try anything to give things the best chance of getting back to as normal as is possible as soon as possible. But I do understand these things can’t be rushed.

 

Your thoughts/advice are all very welcome

 

thanks in advance

User
Posted 26 Mar 2021 at 20:02

It's generally said you should wait 8 weeks before using a pump, but I would ask your surgeon.

As for tablets (Tadalafil or Sildenafil), some of the main centres are now starting patients on these even before the prostatectomy, so start on them as soon as you can get them. They improve blood flow and may improve healing, even if they don't yet generate erections. In the unlikely event you get an erection sooner that 8 weeks (does occasionally happen), probably a good idea to be careful with it.

Don't know about injections, but I think they'll want to know if you are responding to tablets first, and then consider injections if not, so it's unlikely to happen before 8 weeks anyway, by the time you've had the ED clinic appointment to show you how to use it. You might be able to get Vitaros cream from your GP before you get an ED clinic appointment, since that doesn't require a training session. Vitaros doesn't work well for everyone, but it's worth a try in case it does for you.

User
Posted 26 Mar 2021 at 21:52
Research suggests that daily tadalafil (Cialis) can aid nerve repair by drawing oxygenated blood to the area - starting dose is often 5mg but 2.5mg tablets are available if you find the side effects problematic. There is no such research to support the idea that sildenafil (Viagra) aids nerve repair. Unfortunately, quite a lot of CCGs have blocked the prescribing of tadalafil for nerve repair which means you get offered sildenafil or nothing.

Tadalafil also comes in an 'event' dose as well as the low daily dose.

Under NHS guidance, men who have ED as a result of prostatectomy are entitled to a vacuum pump on the NHS and / or as many event doses of Cialis or Viagra as you need but a) many CCGs have blocked the prescribing of pumps and b) limited the prescribing of tablets to 4 x per month ... in effect, they have decided that you can try to have sex once per week.

If you get a few months down the line and have not had an erection using tablets, you may then be assessed for injections - again, it depends on your CCG. Where we live, you have to fail with all types of tablets, cream and pellets before you can try the injections.

It does seem that you have been rather over-optimistic on this but I think that is understandable - so many surgeons gloss over the possibility of ED. My husband was 50 at diagnosis and our surgeon spelt out the risk & likelihood very clearly but J simply didn't take it in because he was thinking 'well I am only 50 so I won't have any problems'. It took 3 years to really make any progress and 11 years on, he is still dependent on injections and tablets for penetrative sex; not because of any mechanical problem now, I suspect, but just because years of problems have completely destroyed any trust in his own body not to let him down.

Your starting point is probably to ask your GP or surgeon for a referral to the local ED / andrology clinic (if there is one in your area).

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

User
Posted 26 Mar 2021 at 23:09
Also, has anyone told you about applying for your prescription exemption certificate? Pick up an application form, fill it in and then drop off for the GP to counter sign. Being treated for cancer or needing treatment for the side effects of cancer both entitle you to free prescriptions for 5 years.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Mar 2021 at 11:43

I had a telephone chat with the consultant at around week 5. Because of lock down he said to pop down the chemist and pick up some viagra (50mg dose doesn't need a prescription) That was the Saturday. Tried one Sunday morning and it was enough to give it a go ;-) After that I moved to 5 mg daily cialis and used 50mg of viagra for events.

It was slow, steady progress after that.

 

Hope that helps. And good luck

User
Posted 28 Mar 2021 at 09:42

I left it around 8 weeks post op before using a pump that my OH bought for me. It's an inexpensive internet purchase that has lasted over a year of daily use. 

In the weeks following surgery, I only ever got random stirrings, which at first gave me some excitement but turned to a massive downer as time went on. I tried 50mg sildenafil as well as tadalafil but got depressed when it didn't work, (I probably tried it too early in my recovery and placed too much faith in it). 

As for injections (a year post op), I have tried them and they really work for me. I get a rock hard erection which throbs quite a bit. Just so happens that my delayed ED appointment came in as things were starting to happen. 

I didn't find any of this easy and got quite down, and I have to say that I got things massively wrong with respect to recovery timelines. I'm around 16 months now and things are improving all the time. 

It took me several months to get anything near a proper erection so don't give up, keep trying. 

Hope this helps. 

Kev.

User
Posted 28 Mar 2021 at 12:55

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
. Because of lock down he said to pop down the chemist and pick up some viagra (50mg dose doesn't need a prescription) That was the Saturday. Tried one Sunday morning and it was enough to give it a go ;-)  

At 5 weeks was this 50mg dose able to bring life where there had previously been nothing or had you already had the rumblings of a natural one and the tablet was just enhancing it ? 
Thanks 

Not really had much of anything from what I remember. To be honest I was really surprised

User
Posted 28 Mar 2021 at 16:40

In my experience of talking with patients, it's more usual to start with the highest dose of the PDE 5 inhibitors. I did ask about this once, because it's the opposite to how meds are usually given - find the minimum dose which works. The answer was patients give up if the first dose doesn't work, so they start on the 100mg Sildenafil, and if it works or gives unacceptable side effects, might suggest trying reduced doses later.

User
Posted 30 Apr 2021 at 15:19
Really glad with that result Philip. Make it your best friend for the best possible outcome. I’m still using mine maybe 3 times per week whilst shaving nearly 6 yrs on. It’s kept everything healthy and normal even during hormone therapy now. You don’t need to use the rings when just exercising. Just keep the vacuum going for 10 minutes or so. Good luck
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User
Posted 26 Mar 2021 at 20:02

It's generally said you should wait 8 weeks before using a pump, but I would ask your surgeon.

As for tablets (Tadalafil or Sildenafil), some of the main centres are now starting patients on these even before the prostatectomy, so start on them as soon as you can get them. They improve blood flow and may improve healing, even if they don't yet generate erections. In the unlikely event you get an erection sooner that 8 weeks (does occasionally happen), probably a good idea to be careful with it.

Don't know about injections, but I think they'll want to know if you are responding to tablets first, and then consider injections if not, so it's unlikely to happen before 8 weeks anyway, by the time you've had the ED clinic appointment to show you how to use it. You might be able to get Vitaros cream from your GP before you get an ED clinic appointment, since that doesn't require a training session. Vitaros doesn't work well for everyone, but it's worth a try in case it does for you.

User
Posted 26 Mar 2021 at 21:52
Research suggests that daily tadalafil (Cialis) can aid nerve repair by drawing oxygenated blood to the area - starting dose is often 5mg but 2.5mg tablets are available if you find the side effects problematic. There is no such research to support the idea that sildenafil (Viagra) aids nerve repair. Unfortunately, quite a lot of CCGs have blocked the prescribing of tadalafil for nerve repair which means you get offered sildenafil or nothing.

Tadalafil also comes in an 'event' dose as well as the low daily dose.

Under NHS guidance, men who have ED as a result of prostatectomy are entitled to a vacuum pump on the NHS and / or as many event doses of Cialis or Viagra as you need but a) many CCGs have blocked the prescribing of pumps and b) limited the prescribing of tablets to 4 x per month ... in effect, they have decided that you can try to have sex once per week.

If you get a few months down the line and have not had an erection using tablets, you may then be assessed for injections - again, it depends on your CCG. Where we live, you have to fail with all types of tablets, cream and pellets before you can try the injections.

It does seem that you have been rather over-optimistic on this but I think that is understandable - so many surgeons gloss over the possibility of ED. My husband was 50 at diagnosis and our surgeon spelt out the risk & likelihood very clearly but J simply didn't take it in because he was thinking 'well I am only 50 so I won't have any problems'. It took 3 years to really make any progress and 11 years on, he is still dependent on injections and tablets for penetrative sex; not because of any mechanical problem now, I suspect, but just because years of problems have completely destroyed any trust in his own body not to let him down.

Your starting point is probably to ask your GP or surgeon for a referral to the local ED / andrology clinic (if there is one in your area).

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

User
Posted 26 Mar 2021 at 22:53

Originally Posted by: Online Community Member

but J simply didn't take it in because he was thinking 'well I am only 50 so I won't have any problems'.  

Sounds very much like my thoughts, but looks like I got it massively wrong .  I was way more concerned about the incontinence side of things , but thankfully that doesn’t seem to have caused me much of a problem.
I’ll have a chat with Gp next week

thanks  

User
Posted 26 Mar 2021 at 23:09
Also, has anyone told you about applying for your prescription exemption certificate? Pick up an application form, fill it in and then drop off for the GP to counter sign. Being treated for cancer or needing treatment for the side effects of cancer both entitle you to free prescriptions for 5 years.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Mar 2021 at 11:43

I had a telephone chat with the consultant at around week 5. Because of lock down he said to pop down the chemist and pick up some viagra (50mg dose doesn't need a prescription) That was the Saturday. Tried one Sunday morning and it was enough to give it a go ;-) After that I moved to 5 mg daily cialis and used 50mg of viagra for events.

It was slow, steady progress after that.

 

Hope that helps. And good luck

User
Posted 27 Mar 2021 at 20:34

Originally Posted by: Online Community Member
. Because of lock down he said to pop down the chemist and pick up some viagra (50mg dose doesn't need a prescription) That was the Saturday. Tried one Sunday morning and it was enough to give it a go ;-)  

At 5 weeks was this 50mg dose able to bring life where there had previously been nothing or had you already had the rumblings of a natural one and the tablet was just enhancing it ? 
Thanks 

User
Posted 28 Mar 2021 at 09:42

I left it around 8 weeks post op before using a pump that my OH bought for me. It's an inexpensive internet purchase that has lasted over a year of daily use. 

In the weeks following surgery, I only ever got random stirrings, which at first gave me some excitement but turned to a massive downer as time went on. I tried 50mg sildenafil as well as tadalafil but got depressed when it didn't work, (I probably tried it too early in my recovery and placed too much faith in it). 

As for injections (a year post op), I have tried them and they really work for me. I get a rock hard erection which throbs quite a bit. Just so happens that my delayed ED appointment came in as things were starting to happen. 

I didn't find any of this easy and got quite down, and I have to say that I got things massively wrong with respect to recovery timelines. I'm around 16 months now and things are improving all the time. 

It took me several months to get anything near a proper erection so don't give up, keep trying. 

Hope this helps. 

Kev.

User
Posted 28 Mar 2021 at 12:55

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
. Because of lock down he said to pop down the chemist and pick up some viagra (50mg dose doesn't need a prescription) That was the Saturday. Tried one Sunday morning and it was enough to give it a go ;-)  

At 5 weeks was this 50mg dose able to bring life where there had previously been nothing or had you already had the rumblings of a natural one and the tablet was just enhancing it ? 
Thanks 

Not really had much of anything from what I remember. To be honest I was really surprised

User
Posted 28 Mar 2021 at 16:40

In my experience of talking with patients, it's more usual to start with the highest dose of the PDE 5 inhibitors. I did ask about this once, because it's the opposite to how meds are usually given - find the minimum dose which works. The answer was patients give up if the first dose doesn't work, so they start on the 100mg Sildenafil, and if it works or gives unacceptable side effects, might suggest trying reduced doses later.

User
Posted 30 Mar 2021 at 14:59

Originally Posted by: Online Community Member

Under NHS guidance, men who have ED as a result of prostatectomy are entitled to a vacuum pump on the NHS and / or as many event doses of Cialis or Viagra as you need but a) many CCGs have blocked the prescribing of pumps.

just found out that unfortunately I’m in a CCG that blocks the prescribing of pumps :-(

is this something I just have to accept or can you challenge it ?

thanks  

User
Posted 30 Mar 2021 at 15:13
I would contact specialist Uro or Onco nurse and demand it. Sometimes it takes their say so to get it. I could only get daily Tadalafil after I threw my toys out of the pram.

But it’s an utter utter necessity so if you can’t get one then buy one. If you want it for penetration then you need to get a proper one £200 , but if it’s for daily exercise and encouragement then a Lovehoney one will do at circa £15

User
Posted 30 Apr 2021 at 07:15

Didn’t know about the exemption certificate . Where can you get these to apply ? 

User
Posted 30 Apr 2021 at 08:45

Originally Posted by: Online Community Member

Didn’t know about the exemption certificate . Where can you get these to apply ? 

Your GP or hospital (Clinical Nurse Specialist) will be able to give you the form. They have to fill part of it out.

User
Posted 30 Apr 2021 at 08:47

Originally Posted by: Online Community Member

Didn’t know about the exemption certificate . Where can you get these to apply ? 

Just ring your doctor and ask for NHS medical exemption form - FP92A , they should send one out in the post for you to fill it in , send it back to the doctors, he signs it and forwards it on for you. Within a couple of weeks you should get your card. Mine arrived within 10 days all very easy.

 

User
Posted 30 Apr 2021 at 08:54

Originally Posted by: Online Community Member

just found out that unfortunately I’m in a CCG that blocks the prescribing of pumps :-(

is this something I just have to accept or can you challenge it ?

thanks  

Ask your hospital directly - some supply to patients in areas where CCG won't supply. As one urology department commented, we don't go to all this effort to preserve sexual function, only for primary care to mess it up for the sake of a few hundred pounds (was referring to pumps and PDE5 inhibitors).

If you buy it yourself, ask the vendor for a VAT exemption certificate first, if you're going for one of the medical grade ones. In theory you could do the same for a sex shop supplied one, but they probably won't have the procedures in place to do so.

User
Posted 30 Apr 2021 at 12:10

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

just found out that unfortunately I’m in a CCG that blocks the prescribing of pumps :-(

is this something I just have to accept or can you challenge it ?

thanks  

Ask your hospital directly - some supply to patients in areas where CCG won't supply. As one urology department commented, we don't go to all this effort to preserve sexual function, only for primary care to mess it up for the sake of a few hundred pounds (was referring to pumps and PDE5 inhibitors).

If you buy it yourself, ask the vendor for a VAT exemption certificate first, if you're going for one of the medical grade ones. In theory you could do the same for a sex shop supplied one, but they probably won't have the procedures in place to do so.

I spoke to BUPA (who have so far been absolutley brilliant) last week and they have very kindly offered to cover the cost of one under my existing treatment authorisation. They normally don't cover medication or devices for ED as it should be covered on the NHS. I explained the CCG situation and they agreed no problem. Just getting to grips with it - its quite brutal !!

User
Posted 30 Apr 2021 at 15:19
Really glad with that result Philip. Make it your best friend for the best possible outcome. I’m still using mine maybe 3 times per week whilst shaving nearly 6 yrs on. It’s kept everything healthy and normal even during hormone therapy now. You don’t need to use the rings when just exercising. Just keep the vacuum going for 10 minutes or so. Good luck
User
Posted 30 Apr 2021 at 17:24

Originally Posted by: Online Community Member
I spoke to BUPA (who have so far been absolutley brilliant) last week and they have very kindly offered to cover the cost of one under my existing treatment authorisation. They normally don't cover medication or devices for ED as it should be covered on the NHS. I explained the CCG situation and they agreed no problem. Just getting to grips with it - its quite brutal !!

That's brilliant. If it's a SOMAerect model (the Response II accounts for 80% of NHS pump prescriptions), you can contact iMEDicare and have them go through how to use it. There's a training period of 2-4 weeks (without constriction rings), and you can use it either for penile rehabilitation (without constriction rings), or for having sex (with constriction rings).

Being taught how to use it correctly doubles the chances of using it successfully at home afterwards.

 
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