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Erecting the Erection - Medication

User
Posted 17 Aug 2016 at 16:57

Originally Posted by: Online Community Member

I had an interesting second meeting with an ED Consultant recently, the following points were made by him.

Cialis 5mg per day should be enough to give an erection. Supplementing 5mg daily with a booster of either 10mg or 20mg for an event makes little or no difference, (having tried it, I agree).

He stated "the best recovery is made 6 - 12 months post op", so at or around 12 months (in my case) he said "it is as good as it's going to get"! (based on anecdotal evidence from this forum and generally perceived wisdom on this site I'm a bit disappointed).

"If you take Cialis to achieve erections you'll need to be on it for life, and once you stop taking Cialis you'll revert almost immediately to how you were post - op" (scary).

At the moment I'm lucky, in that I am able (but not on demand) to achieve usable erections, usually when I wake up in the mornings rather than when I'm engaged in sexual activity, which I why I'm at the ED Clinic.

Additionally, I'm also lucky that my doctor's practice has given me prescriptions for / funded Cialis, although I do have concerns that this may not continue for the rest of my life!

I'm 51 weeks post op and not sure whether it was a good, bad or indifferent meeting.

 

 

Hey Pablito,

what do you mean with "ED Consultant"? Are you speaking to a doctor or just a "friend" who is giving you some advice on how to tackle your problems in the right way.

1.) Saying that the best recovery is made 6-12 months post OP is not particularly wrong but also not applies to every person that had to go through a surgery. I've read a lot about patients that made continuous improvements during longer periods of time.

Following two statements are interesting:

"The NYU Langone Medical Center has claimed that it can take most men up to a year after prostate surgery before they can experience an erection. The NYU Langone Medical Center has claimed that it can take most men up to a year after prostate surgery before they can experience an erection. The timetable for this normally states that sexual function will be restored between three and twelve months after prostate surgery. In rare cases some men may see no improvement up to two years after surgery. However, this doesn't mean restoration isn't possible."

"Most men will continue to see erectile-potency improvements up to two years after surgery, so we would expect to see even better outcomes by then"

Both statements to be found here alongside more information on if and how to restore sexual functionality after a surgery. I think it is a bit discouraging if your consultant gives you the impression that you won't be able to restore your sexual life if you haven't been able to in the first 12 months. It's simply not true in every case.

2.) Treatments like Viagra, Cialis etc., so called PDE-5-Inhibitors cause a chemical reaction in your body that increases the blood flow into your penis so you can get a better erection once your sexually aroused. This chemical reaction starts at some point after you take the medication (for Viagra it is 30-60 mins, for Cialis its less ... should work within the first 30 minutes) and stops after some time as well (for Viagra after 4 hours, for Cialis up to 36 hours which is a big advantage of that medication). So you definitely don't have to take that medication for the rest of your life if at some stage you will be able to get an erection without any aids again. If your consultant spoke about Cialis for daily intake he was right to a certain degree. You take it daily and therefore will lose the effect after not taking it anymore. Still, if you recover to being able to get a natural erection you don't need to take the medication any more for sure. You can read it up i.e. here to get a better understanding.

So for now I would take the medication as you were lucky enough to get a prescription which helps you afford it but also don't give up on other options. Also look closely on what happens at stages where you don't take that medication (if you don't take the daily dosage which I personally wouldn't recommend anyways) to see if you are back to "normal". Remember that it's not always just physical trigger but also psychological ones. So maybe taking the medication and any aid that will help you to get comfortable with yourself again solves the problem after some time.


Wish you all the best and don't always believe everything without questioning. For sure these guys are experts but still ...

Dan

User
Posted 17 Aug 2016 at 19:35

I think given the fact that Pablito has reported on his appointment with the ED consultant, it is safe to assume that the consultant has the relevant qualifications. I disagree with some of your comments, including that Viagra works within an hour - but I guess you are not speaking as someone who uses Viagra, cialis or the other chemical options yourself? It might work in an hour for some people but in my house, it takes 2 - 4 hours to take effect depending on how long it is since he last ate. Cialis takes 8 - 10 hours. Levitra takes about half an hour. 

I note that you haven't given very much detail on your profile Dan - what's your link with PCa? Or is it just that you work for the company you have linked in your post? 

 

Pablito, your ED specialist has the personality of the Grim Reaper - remind yourself of the experiences that John, Ray and others have had and stay optimistic :-)

Edited by member 17 Aug 2016 at 19:41  | Reason: Not specified

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

User
Posted 18 Aug 2016 at 08:45

Hey LynEyre,

what exactly are you disagreeing with apart the timeframe the medication starts to work? For sure the 1 hour window is solely reflecting the facts given on nearly every resource you can find online. I know it also highly depends on each and every individual and also on the circumstances under which you take the medication. So i.e. food intake can have an influence amongst a lot of other things.

You are right in assuming that I don't take any of the mentioned medications at the moment but I had to at some stage of my life. For me Viagra in particular kicked in much quicker than the numbers you are mentioning.

I solely stumbled upon this post whilst doing my research and wanted to encourage Pablito as his post was indeed a bit desperate. I have no direct link to prostate cancer but as I already said had touching points in my life with ED. I also understand that with your family being directly affected you act much more sensitive to that topic. I didn't want to offend you or anybody in any case by commenting without having a direct link to prostate cancer.

Dan

 

User
Posted 18 Aug 2016 at 11:05

Lyn & Dan,

Thank you for your recent posts. I'm a bit tied up work-wise at the moment, but will respond shortly!

Pablito

User
Posted 18 Aug 2016 at 12:03

Thanks for your post Pablito. As you may know I am at 15 months nearly with zero natural return , but have had success now with Cialis daily. The injections cause terrible pain.
I just try to believe Lyn and not give up. I still use pump daily to try and keep him fit. Sadly I've lost a significant amount of size despite this. Have days when it just gets me so down , then I pick up again. And I'm by no means cured either which makes things worse. Keep on trying

If life gives you lemons , then make lemonade

User
Posted 01 Sep 2016 at 11:22

Hi guys and gals
You know I'm not shy , so I just wanted to share this. Since being on Cialis 5mg daily I have been having variable results but just wanted to say that by using these rings it can make the difference between a good usable erection , or something not quite upto the job. So don't be shy. Buy some now and stick them in your bedside cabinet. Best wishes
Chris

http://www.lovehoney.co.uk/product.cfm?p=34881

If life gives you lemons , then make lemonade

User
Posted 01 Sep 2016 at 14:53

Shy? NOPE

Informative? YEP

I'm sure somebody will benefit Chris so thanks for posting

We can't control the winds - but we can adjust our sails
User
Posted 02 Sep 2016 at 12:20
Chris

I don't think of you as shy at all. You are generally very forthright in your posts. If you have found things that help you to get a useable erection then you do the right thing to spread the word.

I am really pleased that you are finding the 5mg daily Cialis seems to be working. It was a bit of a battle for you to get that and without this forum you may never have fought for it.

Great to see this forum and the people who use it and contribute is still doing so much to help.

Best wishes

Xxx

Mo

User
Posted 05 Sep 2016 at 20:53

Lyn, Chris and Dan,

Thank you for your recent posts!

After my negative meeting with the ED Consultant in April, having been encouraged and inspired by this forum, and trusting my own instinct, I have continued with 5mg of cialis daily. I take this at c9:00am which I find works best to minimise the side effects.

I wake most mornings with a good sized usable erection and sometimes it happens during the night! I'm also able to achieve an erection with sexual stimulation, although not when i'm solo. I am now always able to achieve penetrative sex. Sometimes my erections are granite like but usually more like sandstone, and guess what happens to sandstone when it get's wet, it crumbles!!!

It is now rare for me to achieve an orgasm when i'm having penetrative sex or even when fully erect, that bit just isn't working for me! However, the 5 fingered widow usually does the trick!

I'm now 17mths post op and pleased with my progress! I get my next PSA results next week on the 15th, so fingers crossed!

Thank you all for your fabulous support, it really has been a most humbling journey, you are all amazing!

Pablito :-))

User
Posted 05 Sep 2016 at 21:09

Hi Pablito, Men,

Maybe you/we all have to get used to a new era of erection handling/dealing with?

Some are in our control, we can get one as and when we need it, others, when ever it pops up?

For some reason I am ready and willing at 0400 every morning. Even if I have exercised the previous evening. No idea why?

No amount of beer puts LCB99 off, apparently. He is ready for aerobics and the mini gym every evening.

If you have an understanding partner, wake them too and make good use what you have. If you do not have an understanding partner, get on with it and deal with the flack later, with a big smile on your face. Maybe buy some flowers later that day.

Okay, so the above is a tad tongue in cheek, but use it or lose it, and eventually you may get more control over when and where?

But DO NOT give ups hope. Improvements may still be achieved, and keep improving over 3 years down the line.

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 05 Sep 2016 at 22:19

Hi Pablito
You're living the dream in my eyes !! Very best wishes with the test next week. I'm chuffed to nuts that the odd ED success story comes out , as to be honest it seems quite rare. Long may it continue and I pray the two months that I'm behind you makes the difference.
Chris

If life gives you lemons , then make lemonade

User
Posted 05 Sep 2016 at 23:33

Pablito, brilliant - really pleased for you. Where there's hope and all that :-)

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

User
Posted 06 Sep 2016 at 08:34
This disease and the side effects of non surgical treatments or the physical changes from surgery can be devastating for a man and indeed for his wife or partner.

Some men (although surprisingly few) fear death but so many fear the loss of erectile function or continence.

That fear can promote so much anxiety, depression and loss of confidence that these mental issues can seriously contribute to the physical problems.

I really wish the medical teams and the NHS could truly recognise the impact this has on so many lives.

Billions are spent helping those who have chosen to lead a lifestyle that brings them medical problems and yet so little is invested in the life changing and devastating issues that ED and incontinence can cause.

We hear from quite a few men honest enough and concerned enough to talk openly about the issues on this forum. Sadly sometimes with partners who have lost their own mojo for whatever reason. Sometimes we even get a wife or partner who opens up about their frustration or sadness when missing intimacy, how difficult it can be dealing with both the physical and mental issues their Husband or partner is struggling with.

It is fantastic to read success stories like Pablito's, CB99's and others. Success that has taken a matter of months, has happened gradually and with lots of self help or has happened with that rare persistence of medical help when virtually all hope seemed lost.

I do think PCUK can help to make changes that will focus on this major issue, just like the fantastic job they are doing with awareness, treatment research and community support et al.

I know that these problems reach far wider than prostate cancer, all the more reason why more NHS help should be offered and readily provided.

In the meantime, the more people who share their experiences and talk about things that have helped both mentally and physically the better.

I wish every one of you the very best as always

Xx

Mo

User
Posted 06 Sep 2016 at 09:59
P

Well done good to hear people are having success, are you still eating the pistachio nuts ?

Following on from Mo's post, six years ago our Urology department did not even have an ED consultant,so there has been some progress. At a recent support meeting the ED consultant said in the beginning he had to fight tooth and nail to prescribe Viagra etc for guys with ED.

Thanks Chris.

User
Posted 06 Sep 2016 at 10:02
We have never had the problems with ED that a lot of you chaps have.Its been the incontinence. 2 and a half yrs on,Sean should get an op for his mild incontinence in October. 8 months of waiting😆
User
Posted 07 Oct 2016 at 19:35

Hi all

its been a while since I posted, basically since the last time I have been put on HT treatment plus had a wee surgical procedure to widen the urethra and also the removal of a couple of staples left over from surgery last December.

Continence is now good but slight flushes with the HT, anyway good news is that I have been prescribed a pump for the ED side of things, cannot wait feel like a kid in a sweetie shop. get it tomorrow so hopefully xmas will come early. I have tried pills but due to no nerves being spared it just didn't happen.

Going for RT on the 18th Oct which was supposed to be a couple of months ago but due to problems with water works it couldn't happen bur now after waiting for months its finally here. Only downside is that I have been told that I would still need HT for another couple of years yet, I was hoping that RT would be the end of the process.

Really sad though that there seems more and more people looking for answers to this crappy disease.

Onwards and upwards, well hopefully tomorrow anyway.

 

User
Posted 19 Oct 2016 at 11:47

Hi guys
I just wanted to post an update on this important topic that some people find it hard to discuss , mainly to give encouragement to men behind me in terms of surgery and HT.
I am now exactly 16 months post surgery and although I was on Bicalutamide HT for 11months , I have now been off that for exactly 2 months.
I have recently returned to what I would call normal erectile function. A full erection (albeit smaller and a bit bent ) capable of penetration and orgasm , but only when with my wife. Solo doesn't work !
I have put every ounce of my energy into getting this function back as most of you know.
I have used the pump religiously for exercise every day from 8 weeks post op. I still do.
I tried event doses of Viagra Levitra Cialis and Spedra.
I used injections maybe 12 times but the pain was unbearable.
I started daily 5mg Cialis and things instantly improved !!
Thing is , I think the present success is down to pump , Cialis , 16 month healing , and withdrawal from HT altogether. That and a lasting desire to maintain a sex life.
If I was in the cure camp with an undetectable psa I think I would be in a pretty damn good place right now with further improvement possible.
Thing is , as expected , my psa is immediately on the rise and I will be having a PET scan at Oxford very early next year so we can locate any extra spread as well as my lymph node and bladder involvement. Then I will be straight back on HT and/or RT which quite frankly makes me feel sick with fear. And I will lose erectile function for a second time , or my libido , or both which grieves me to the core having got this far.
This damn cancer has sat on my shoulder everyday for 25 months now , and more or less consumes me.
I send wishes to all fellow sufferers , men and women.
Chris

If life gives you lemons , then make lemonade

User
Posted 19 Oct 2016 at 12:42
Chris

great that you can offer encouragement to others through your own experiences. I am sure many others will be chuffed to bits to hear how well things have turned out following your perseverance and the support of a wonderful wife. You have shown that self help, seeking professional help, trying everything and anything and most of all a refusal to give up can sometimes help in a situation like your own.

I know your PSA has risen in your first post HT test but keep the hope alive that this was due to a withdrawal from Bicalutamide. If it was then it may yet stabilise or even come down again. If it does then that will give you longer to enjoy and make the most out of what is happening now.

If your PSA continues to rise to a level when the Pet scan is considered to be effective at showing where the remaining cancer is active, then that will open up new treatments that may target the cancer quicky and effectively. If that also means a spell back on HT then I guess it will be lemons for a while, but they will be lemons with a future!

I don't know enough about RT given as a later targeting treatment and how that may or may not have an impact on the ED recovery you have ahcieved, I guess it may be down to where exactly the RT is directed? I hope someone who knows can give you the benefit of their knowledge. Maybe you can ask your Onco about that now or when the time comes to make that next big decision.

In the meantime I applaud the way you have overcome your own anxieties, fears and doubts so that you can focus a bit more on enjoying the life that you now have.

my very best wishes as always

xxx

Mo

User
Posted 19 Oct 2016 at 15:50

To Chris et all!

Great post Chris and thanks for sharing!

I have an appointment next Monday at the ED Clinic.

Guess what, I've just returned from holiday, during which time because of the side effects, I decided to take a break from Cialis.

Somewhat to my surprise, I manged a "full on fit for purpose erection" c 48hrs post taking my last tablet!

Just over a week on, and I seemingly am now able to get a "natural erection" and also achieve orgasms.

I feel like a "born again virgin" discovering the joys of penetrative sex for the first time.

I'm a week shy of my 18mth post-op anniversary, I'm so chuffed!

I would reiterate from Chris's post that my own success is down to the pump, Cialis, 18 mths of healing, a desire to maintain regain a sex life and the skill of the surgeon!

I also wish the same recovery for all other sufferers!

Pablo

User
Posted 19 Oct 2016 at 19:26

Hi, Chris.
Sorry to hear about the PSA, but well done for working hard on the sexual function. It is great to hear about the recovery, and Pablito's.
Henry

User
Posted 19 Oct 2016 at 21:43

Brilliant news and not so great, all rolled into one. Even if you do decide at some point to go ahead with it, RT may not cause ED (it didn't seem to cause John any problem) and your existing track record with the HT suggests that you may not lose your libido when HT is reintroduced ... Alathays was one of those enigmas whose desire remained all the way through many different treatments.

Lots of love x

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

User
Posted 19 Oct 2016 at 21:54
Hi guys

Good news about the ED side, hopefully given time I will be able to join you.

Only had my pump for 5 days and used it every night, it has certainly helped restore the wee fella into a wee bit of his old self, took about 6 months to get the pump so going to put it to good use. Had a few semis but not enough for full penetration yet. Need a bit more practice.

Been on 5my Cialis daily but no reaction which was to be expected due to no nerves being saved at the op.

Keep posting guys as it is good to talk.

Chris I hope your PSA settles down and there is no need for future HT.

I'm on Zoladex just now which ain't helping with the sex side but trying my damness not to let it stop me from wanting sex. Still have some kind of sex life at present but it's lacking a lot.

Anyway onwards and upwards.

Take care all.

Sandy

User
Posted 08 Nov 2016 at 18:30

A positive update for all you warriors !
Even though relatively happy on daily Cialis I have been waiting six months to trial the new super-injection. Indeed twice I have turned up to clinic and they had not received it. But at least I found out it's name Invicorp 25mg. It's from the same family as Alprostadil but is two chemicals in one injection. One to increase blood flow to the penis and the other to stop blood escaping. It has been shown in trials to work for upto 75% of men where all other treatments have failed , including Caverject and Viridal which I have used. Very few side effects.
So I looked it up and it is available everywhere except the NHS apparently. Being me , I filled in an on-line questionnaire and received it privately for £24 per injection.
The golden chalice ? ..................... YES !!
The best erection with internal firmness in 17 months post operation.
Lasted as long as I wanted it to really. 90nminutes and it faded at will.
Slightly fiddly injection with glass phial but tiny needle.
I had ZERO pain from start to finish. Non whatsoever , whereas Caverject and Viridal caused me almighty grief on the pain front.
So it is utterly the perfect event drug for me but obviously may not work as well next time as all injection users know.
The downside is that I had to buy 5 , and they need to be stored in the fridge. Unfortunately the shelf life is only 2 months so this is a problem
Remember to take the sticker off that says " inject into the penis " , to save embarrassment.
Always be safe and consult your GP , but drive your own recovery or you can be forgotten very easily.
Best wishes to all blighted
Chris

PS Only side effect was severe initial flushing of face. Almost like CT scan dye. Was quite pleasant tbh.

Edited by member 08 Nov 2016 at 18:34  | Reason: Not specified

If life gives you lemons , then make lemonade

User
Posted 08 Nov 2016 at 18:46
Nice one Chris great post

Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 08 Nov 2016 at 19:47
Thanks for the info Chris.

Started to use the pump with some success but the injection you are taking about sounds good.

Been told that I would get carvajet injections in March if pump isn't good enough.

Keep up the good posts.

Sandy

User
Posted 08 Nov 2016 at 23:11

Brilliant x

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

User
Posted 09 Nov 2016 at 13:01

Really pleased for you Chris!

User
Posted 22 Nov 2016 at 12:17
Hi all,

just a quick update, I started this post last year as like most people on here I was suffering with the dredded ED , well I'd just like to report with time a good pumping and Viagra we are up and running so to speak. Near enough 100% with a tab so happy days.

On the downside I'm still leaking and I'm all kegaled out, but I'm at least I have a cheesy grin on my face.

Johny

User
Posted 22 Nov 2016 at 15:16

Chuffed for you Johny! Great news mate

If life gives you lemons , then make lemonade

User
Posted 22 Nov 2016 at 20:30
Hi Johny

Great news on the ED side of things, started using the pump myself a few weeks ago and it has made a BIG impression so far. Considering my wee fella was out of action for nearly a year there has been a good reaction to the pump.

Had plentiful practice now so the wife is about to get an early Xmas present.

I know you still have the problem with the leaks but I hope it is not enough to stop you having a normally few, if that is possible.

Now into my 6th week of RT with one week to go.

Onwards and Upwards

Sandy

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

If life gives you lemons , then make lemonade

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

If life gives you lemons , then make lemonade

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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