Erecting the Erection - Medication

User

Posted 23 Nov 2016 at 09:28

Top news Johny, I'm pleased everything is starting to point in the right direction!

Edited by member 23 Nov 2016 at 09:29 | Reason: Not specified

User

Posted 12 Feb 2017 at 19:54

This is my first post here and it is really just to express my very sincere gratitude to everyone who has contributed to this and the other useful and interesting threads in such a generous and uninhibited way.

A bit about me I'm 75 years young, and pretty fit. My hormone and radio therepy treatment for PS was completed in January of 2016 at Velindre in South Wales and at my last check up in September my PSA was unchanged from the test in April at 0.1 which was a huge relief!

I'm using a dose of 2x10mg of Levitra for an event and so far it has been quite effective with no unwanted side effects. I found that just using one tablet of 10mg was a bit borderline. It seems to take at least an hour to start to be effective but the effect can last for nearly twelve hours but that is pushing it! My GP has allowed me 8 tablets of 10mg for each month so one event is possible each week. I will be trying to get a pump to help things along but it seems rather strange to me that I was not offered this at any of my check-ups and the point many contributers have made of use it or loose it never was mentioned by the 'experts'

My very best wishes to everyone here.

Richard

User

Posted 12 Feb 2017 at 20:29

I think the issue Richard is that while 'use it or lose it' is well understood in relation to men that have had the surgery, there has until recently been a failure to acknowledge that men having RT/HT may also get to a stage where they would like to recommence sexual activity - I think the long standing assumption has been 'well they have no libido so it doesn't bother them' Fortunately, things are improving but I suspect that oncology people are still a bit in the dark ages about it all.

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

User

Posted 13 Feb 2017 at 11:25

Hi all
This may well be the best thread I have ever read, anywhere!

I have a few questions, if anyone could share views/advice, I will be most appreciative. I tend to be driven (some may say impatient) with recoveries, as I enjoy being as active as possible. So I had RP on 17th Jan this year (apparently full nerve sparing), catheter out after 10 days, now mostly dry. I suspect this is down to being failry fit and insisting on doing every exercise I can. In fact, the gym evicted me last week saying I was in too early, and got told off the week before for rock climbing.

And now it's time to move on to the ED issue. I have been taking cialis 5mg daily since catheter removal, and do have twinges which is very pleasant. Even semi-erections at night. I bought a pump (£30 thing from the internet) which I am now suspecting may have been too early. Would I be right in guessing my urethra will need a few more weeks to repair, or is some stretching in order at this stage?

I will be pressing for a referral to the ED clinic at my 7 week meeting with the consultant, and will be keen to start everything asap. So how long is too long to wait, and is there a 'too soon'?

Thanks again everyone for a fantastic thread. I shall aim to keep the thread posted with any progress. And there WILL be lots!

cheers
Graham

User

Posted 13 Feb 2017 at 11:31

If the catheter is out then your urethra is repaired and does not need any more time. John had his first orgasm the day the catheter came out and we used manual masturbation and oral stimulation regularly from the start - it is really useful to learn quickly how to orgasm without an erection. The £30 pump is probably nothing like what you would be prescribed on the NHS - ask for one when you see the ED nurse. Have you checked that your area has an ED nurse or andrology clinic? Not everywhere provides this service :-(

Edited by member 13 Feb 2017 at 11:34 | Reason: Not specified

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

User

Posted 13 Feb 2017 at 11:46

Hi Graham,

I was told by both my surgeon and the ED nurse not to use the pump until 6 weeks after surgery. The one I was recommended, which I've found very good, is the Osbon Erecaid.

Good luck
David

User

Posted 13 Feb 2017 at 11:48

Three years since Da Vinci operation and ED still an issue. Latest PSA still undetectable so good news. We now get the results through a telephone call from the ED nurse rather than having to travel to hospital. We asked about the daily dose of cialis - she said she'd write to our GP but was doubtful we'd get it on the NHS?

Edited by member 13 Feb 2017 at 11:57 | Reason: Not specified

User

Posted 13 Feb 2017 at 13:23

David, since it usually takes an awful lot longer than 6 weeks post-op to get to even SEE an ED specialist, it is extremely unlikely anyone would get their NHS pump within 6 weeks! But you are correct, no pumping until the post-op check up. What I was saying was that there is no reason why Graham can't be having orgasms, masturbating, etc.

Betty boop, 3 years post-op I don't think daily Cialis is going to do anything to help with nerve repair - the research was about having it every day straight after surgery to help whatever nerve bundles were left to recover. It seems strange that you get your results from the ED nurse - are you sure? Or are you muddling the ED nurse with your urology nurse specialist? If it really is the ED nurse that you are speaking to and she says your GP is unlikely to prescribe, it may be that you live in an area where the CCG has decided not to allow it. If it is your nurse specialist that said it, then you really need to press for a referral to a proper ED clinic.

What is he taking to help him at the minute, and is it working at all?

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

User

Posted 13 Feb 2017 at 13:42

Hi Lyn - thanks for your quick reply. When we've had to go to hospital in the past we've had to see either Prostate Cancer Nurse Practioner - Surgical Nurse Practioner or Clinical Nurse Specialist and yes you're right - from the Urology Dept. They've then given us the PSA results and then a chat as to how things are etc about ED and changed medication if needed. This is the first time we've had the telephone clinic appointment but one of the above we spoke to - don't see to see a 'specialised' ED nurse? At the moment he is on Levitra 20mg but not much different from when he was on Cialis - about 30% successful. We've read that Cialis stays in the system longer than Levitra which is why we asked about the daily dose.

User

Posted 13 Feb 2017 at 14:21

Hi Lyn,

I was lucky enough to have health insurance plus I live in London, so i saw the whole team, surgeon, anaesthetist, urology nurse and ED specialist pre-op as well as immediately post-op.I bought the pump privately.
Betty boop; I was put on Cialis 5mg immediately, which I pay for as my GP doesn't issue it on the NHS.

David

User

Posted 13 Feb 2017 at 14:47

Betty, if you can't get the daily dose Cialis, ask for the big dose instead and buy a pill-cutter - taking half a Cialis every 3 days or a quarter Cialis every day works the same way as the daily dose. John was able to get 5mg Cialis daily dose plus Levitra and Viagra at the same time so he was keeping the Cialis level in his body fairly stable and topping up with Levitra or Viagra (depending on whether or not he had eaten recently) for an 'event'. I still think you should press for a referral to a proper ED service if there is one in your area.

David, in our CCG if you opt for a private prescription for ED meds you have to waive your right to any NHS provision - the postcode lottery is mind-blowing :-(

Edited by member 13 Feb 2017 at 14:49 | Reason: Not specified

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

User

Posted 13 Feb 2017 at 16:12

Not sure if it's clear from the string of messages but the 'new' injection mentioned is probably INVICORP....and it works really well. Strong erections lasting 1 hour plus and no pain. Strongly recommended. Cialis, pumping and great non penetrative sex are fine but this is an option to ring the changes that should be considered.

User

Posted 13 Feb 2017 at 17:14

That's great - really pleased for you - but you should make clear that Invicorp works well for you - sadly, it doesn't work for everyone :-(

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

User

Posted 28 Feb 2017 at 15:19

Well...put the repeat prescription into GP, including a daily 5mg dose of cialis. Picked it up and another box of levitra in there instead! Pharmacist at surgery couldn't find any letter from hospital regarding this dose. I rung hospital and looks like no letter been sent! Spoke to one of the ED nurses and she said they only do a month of 5mg cialis immediately after the RP - and 'new guidelines' say that only ONE ED medication should be taken at any one time. I asked what options were now open to us as Sildenafil and/or Levitra not having that much effect and she said there is another tablet and to go back to GP and ask for that. Anybody had any dealings with Avanafil?????

User

Posted 28 Feb 2017 at 15:41

Boop boop , boopboopy doo
Hi , Avanafil is the drug Spedra. It's just another PDE5 tablet.
When I was post op I tried event doses of Viagra , Cialis , levitra and Spedra. None did the trick to be honest. Then I went on to injections which were agony but did work randomly. I ended up buying 20mg Cialis tablets off a website and chopping them into 4. It ended up costing me about £20 per month. In the end I went mad at my Uro and he agreed to pay. I reminded him that it was HE who dragged me unwillingly to the operating theatre haha. A daily dose of 5mg and a rubber cock ring is working a treat for us now at 20 months post op.
And if we want a guaranteed sturdy erection for a night away together I'm self funding the Invicorp injection which works great for me. However , NEVER inject until you have been shown at clinic. As Lyn says , everybody is different and reacts more favorably to certain meds. You need to steer this yourself but with caution. When you find what works you can go back and try demanding when they are faced with evidence.
Good luck

User

Posted 28 Feb 2017 at 20:27

Thanks for your reply Chris - because he's on warfarin he cannot use things like the vaccum or inject. I read before that he couldn't use Muse (which has the same medication in it as the injection)..but when I asked they said he could. I reckon he can't have the injections in case he injects into a vein by mistake and starts a bleed. I rung and spoke the ED nurse from this site today and she was incredibly helpful. NORMALLY Levitra has the most success - but she said he could always try 20mg cialis tablet every 72 hours instead if GP will prescribe it...and she reckoned the vacuum pump would be fine as long it was one with elasticated end..rather than rigid which might cause bruising being on warfarin. Will let you know how it goes!

Edited by member 28 Feb 2017 at 20:33 | Reason: Not specified

User

Posted 28 Feb 2017 at 20:48

Hi everyone

What's the difference between a urologist and an ED consultant? The reason I ask is that my urologist who did my non nerve sparing prostatectomy seems to be taking charge of my ED provision. Should I stick with him or ask to be referred to a 'proper' ED specialist?

Ulsterman

User

Posted 28 Feb 2017 at 21:31

Most Urologists are fully specialised in ED or Andrology. You would be far better normally sticking with them. To be bluntly honest I'm acutely aware I know far more than my ED nurse about ED than he does. He's quite nice but dithering and doesn't seem happy with his job. But that is in my particular area of the country. I think I may be re training them tbh

User

Posted 01 Mar 2017 at 00:10

I disagree - the ED nurse or andrology clinic usually know far more about what the CCG will pay for, which meds can be used together, etc and generally will have the time and capacity to give you and your partner any counselling or support you need. However, it may be Ulsterman that your CCG doesn't provide an andrology service and that is why the urologist leads on it.

Our urologist is the best thing since sliced bread and is genuinely interested in what John tries, how it works, how successful it is, etc but he referred us to Zoe on the basis that she was the expert (his words, not mine). That's our particular part of the country.

Betty, he could probably use the vacuum without using the rings as long as he isn't too vigorous with it - it would help maintain penile health even if you are not using it for sex.

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

User

Posted 01 Mar 2017 at 18:08

My CCG isn't great - no daily dose Cialis, no vacuum pump on the NHS - I haven't actually asked though if there is an ED service. Other than that, my urologist has been brilliant and my hospital is good too.

Ulsterman

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Erecting the Erection - Medication

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