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Any help available for ED

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User
Posted 16 Nov 2018 at 08:10

Husband just diagnosed with PCa, G6 T3a.  We are waiting for a date for surgery now.  As you all probably know it has knocked us for 6!  My husband is worrying he won't be the man he was.  I totally understand how he feels, and reassure him he'll always be a man to me, and that he's talking rubbish!

The Surgeon has said it might be possible to save his nerves on one side, but can't say for sure until he gets in there, So I'm wondering what help is available after the surgery?  I've read some men are taking Cialis, is this only given if they have spared some nerves? or can it be used if all nerves have been taken?

I've also read some men advise to use a pump daily and a ring?  Sorry for my ignorance, this is all very new to us, and I just want to give my husband something positive to focus on as he's very low at the minute, which really isn't like him.

 

Thanks for any pre op and post op advice.

 

Michaela

User
Posted 16 Nov 2018 at 09:23

Hello again Michaela!

You are a worrier aren’t you? And I can’t say I blame you.

I have had some form of ED for around twenty years, probably down to atherosclerosis due to high cholesterol and brewer’s droop! I bought some genuine over-the-counter Viagra from Wal-Mart in Acapulco years and years ago, but that gave me nausea.

I have picked up generic Cialis on my travels around the world which I found worked well until my PCa surgery, and now I get that on the NHS. The local surgeon wanted to do a completely non-nerve sparing procedure, which is why I went to a widely-acclaimed surgeon elsewhere who said he could spare the nerves on one side.

So far, that has shown no benefit whatever, and I have had no hint of any erection almost six months post-op, despite daily 5mg Tadalafil. Everyone is different of course, and in the meantime you’ll have to see how it all pans out in the end in Mr Lewis’s case.

Arranging a fitting for my new NHS penis pump - XLL sizes are available to order off the shelf, but with my new smaller size it seems it has to be bespoke made-to-measure😉

Still, at least I haven’t got cancer any more.

Cheers, John.

Edited by member 16 Nov 2018 at 12:48  | Reason: Not specified

User
Posted 16 Nov 2018 at 10:29
Hi you need to ask for a referral to the erectile dysfunction nurse if one is available. They will be able to offer proper advice. You may have to ask. My surgeon did not even mention it. I got referred later at my request

Bri

User
Posted 16 Nov 2018 at 12:33
Click my picture and read my story. I’m 3 1/2 yrs post op but technically incurable although in excellent health right now. Return of erectile function is a long long old haul and you have to keep the pleasure and fun going in other ways. If he has nerves spared then ask for daily Cialis 5mg for as long as you can get it. From approx 10 weeks post op demand a professional penis pump. He should use it daily to keep alll his penis chambers live and stretched etc etc. With a proper restriction ring you can still have penetration but I just use it without to keep him tip top. Took me nearly 2 yrs but now I’m back to normal. You can try all sorts of tablets creams pessaries injections on your journey to see what suits you best. Oral sex or a very lubed hand can sti give a totally limp penis an orgasm ok ! Good luck
User
Posted 16 Nov 2018 at 16:10

Cialis 5mg isn't actually the starting dose; it is sensible to try 2.5mg and only incease to 5mg if needed.

Nt sure that 'demand' is the correct word here - if Mr Lewis lives in an area where the CCG has decided not to fund pumps, or Cialis or whatever else, all the demands in the world won't make a difference and will only set him up for a disappointment.

Mrs Lewis, you could ask some questions of your GP or the urologist or nurse specialist (if you have been allocated one):-
- is there an NHS ED service or andrology clinic in your area
- if so, who would be responsible for referring you
- if you go private, will you still be entitled to ED services
- in your area, does the CCG support the prescribing of vacuum pumps or daily dose cialis

Re your specific question on cialis and nerve sparing, no there is no benefit to taking cialis or viagra if the nerves have all been removed.

This thread may be of interest https://community.prostatecanceruk.org/posts/t9839-One-wife-s-story-of-ED

 

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

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User
Posted 16 Nov 2018 at 09:23

Hello again Michaela!

You are a worrier aren’t you? And I can’t say I blame you.

I have had some form of ED for around twenty years, probably down to atherosclerosis due to high cholesterol and brewer’s droop! I bought some genuine over-the-counter Viagra from Wal-Mart in Acapulco years and years ago, but that gave me nausea.

I have picked up generic Cialis on my travels around the world which I found worked well until my PCa surgery, and now I get that on the NHS. The local surgeon wanted to do a completely non-nerve sparing procedure, which is why I went to a widely-acclaimed surgeon elsewhere who said he could spare the nerves on one side.

So far, that has shown no benefit whatever, and I have had no hint of any erection almost six months post-op, despite daily 5mg Tadalafil. Everyone is different of course, and in the meantime you’ll have to see how it all pans out in the end in Mr Lewis’s case.

Arranging a fitting for my new NHS penis pump - XLL sizes are available to order off the shelf, but with my new smaller size it seems it has to be bespoke made-to-measure😉

Still, at least I haven’t got cancer any more.

Cheers, John.

Edited by member 16 Nov 2018 at 12:48  | Reason: Not specified

User
Posted 16 Nov 2018 at 10:29
Hi you need to ask for a referral to the erectile dysfunction nurse if one is available. They will be able to offer proper advice. You may have to ask. My surgeon did not even mention it. I got referred later at my request

Bri

User
Posted 16 Nov 2018 at 12:33
Click my picture and read my story. I’m 3 1/2 yrs post op but technically incurable although in excellent health right now. Return of erectile function is a long long old haul and you have to keep the pleasure and fun going in other ways. If he has nerves spared then ask for daily Cialis 5mg for as long as you can get it. From approx 10 weeks post op demand a professional penis pump. He should use it daily to keep alll his penis chambers live and stretched etc etc. With a proper restriction ring you can still have penetration but I just use it without to keep him tip top. Took me nearly 2 yrs but now I’m back to normal. You can try all sorts of tablets creams pessaries injections on your journey to see what suits you best. Oral sex or a very lubed hand can sti give a totally limp penis an orgasm ok ! Good luck
User
Posted 16 Nov 2018 at 16:10

Cialis 5mg isn't actually the starting dose; it is sensible to try 2.5mg and only incease to 5mg if needed.

Nt sure that 'demand' is the correct word here - if Mr Lewis lives in an area where the CCG has decided not to fund pumps, or Cialis or whatever else, all the demands in the world won't make a difference and will only set him up for a disappointment.

Mrs Lewis, you could ask some questions of your GP or the urologist or nurse specialist (if you have been allocated one):-
- is there an NHS ED service or andrology clinic in your area
- if so, who would be responsible for referring you
- if you go private, will you still be entitled to ED services
- in your area, does the CCG support the prescribing of vacuum pumps or daily dose cialis

Re your specific question on cialis and nerve sparing, no there is no benefit to taking cialis or viagra if the nerves have all been removed.

This thread may be of interest https://community.prostatecanceruk.org/posts/t9839-One-wife-s-story-of-ED

 

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

User
Posted 16 Nov 2018 at 16:32
Matron,

10 - 20 mg is an initial, occasional, dose of Tadalafil and can be used to test for efficacy and any side effects. Daily tablets thereafter, of whatever dosage should only follow on later.

Or just take the occasional tab of 20 mg Cialis / Megalis whenever you have something to celebrate........Like an erection.........

Cheers, John.

User
Posted 16 Nov 2018 at 16:48
No, that isn't NICE recommendation; 2.5mg or 5mg Cialis should be prescribed as soon as possible after the catheter is removed and for a maximum of 2 years (although lucky men who are seeing a benefit and can tolerate the side effects may have it for much longer if their GP / ED nurse is willing to continue prescribing).

NICE permits the prescribing of Levitra or Viagra 'event' dose alongside the cialis daily (although you are not supposed to take the cialis tablet on a day that you intend to use a viagra or levitra)

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

User
Posted 16 Nov 2018 at 17:53

Matron, you are right, as is often the case, but 2.5 mg and 5mg daily are a relatively new innovation / development, as opposed to the previously available, spontaneous "on demand" 10/20mg tabs, so sorry if I have misled anyone.

Better to try a 10mg or 20mg single dose of Tadalafil to test its efficacy rather than commit to a long period of daily drug-taking in my opinion.

Cheers, John.

Edited by member 16 Nov 2018 at 18:05  | Reason: Not specified

User
Posted 16 Nov 2018 at 18:26
New? At least 13 years to my knowledge. John had it 10 years ago based on the experience of others including members here and our friend Richard who had been taking it since his RP some years before.

You have completely misunderstood the difference between the two approaches - typical of you to give advice without knowing quite what you are on about :-/

In areas where it is still allowed by the CCG, a man should start taking daily dose Cialis as soon after nerve-sparing surgery as possible, to increase blood flow to the pelvic area and speed up the healing process, particularly the repair of nerve bundles. Taking one large tablet is not going to indicate whether or not 2 years of low dose will be successful!

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

 
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