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Erecting the Erection - Medication

User
Posted 21 Aug 2015 at 16:18

Hi all

Im 12 weeks post op, 

Q. is it to soon to start asking the doc for medication with regard to helping with erections?

Thanks,

Johny

 

 

 

User
Posted 24 Sep 2015 at 11:23

Hi,

 

I'm just over 4 weeks post-op (RRP, only partially nerve-sparing) and whilst I know that is pretty recent and also that this is not a short journey, that doesn't necessarily make it easy (or even much easier).  Oddly, my libido has seemed to increase since I was diagnosed, but whilst I never suffered from ED before that point, I found that I pre-op I just couldn't get a satisfactory erection (I put it down to anxiety about the forthcoming op), and as for post-op, well there's been the odd tingle but otherwise absolutely zilch thus far.  I've not yet been referred to the ED clinic but I've asked the nurse co-ordinating my treatment to make sure I get passed across.

 

SWMBO* is being very loving and couldn't really be more supportive, but - if you'll pardon the unfortunate pun - it is hard.  As blokes, our sexuality and sexual persona is so closely bound up with our sense of who we are that to suddenly find that there's no response from below when called can be difficult to deal with.  I love her now as much as I ever have (we've just had our Pearl anni) but the fact that I can't express that physically in the same way is surprisingly upsetting.  The surgeon warned us very clearly that spontaneous erections would be very unlikely post-op and whilst you think 'well, at least I'll hopefully not have cancer any more' the reality is still a blow.

 

Les - You do sound very 'down'; please don't be afraid to seek help.  Ask for it from the professionals: some years ago when my Dad died of stomach cancer I found it incredibly hard to deal with, and I sought counselling.  It didn't 'make it all better' but having someone outside of my life I could open my heart to gave me the space to work through my grief and find a way of coping with it.  There are various support routes open via this site, or you could ask your GP to refer you to a counsellor.  There are specialist ones for us cancer-sufferers, whether you go alone or together.  If you can talk to us anonymous strangers on here about how you feel then you can certainly talk to a professional.  You're not going through this completely alone, you know.  I've asked my co-ordinating nurse to refer me for that help, as it happens.

 

I'd echo many of the responses on here:  try to trust your wife and allow her the space to care for you.  The fact that you can't yet get an erection is not the end of the world, and there is more to love than (as Alan Bennett and John Fortune put it) 'putting it in and jiggling it about a bit'.  I'd also try to lay off the ale as best you can - it will do you no physical good, won't help the incontinence, and will make your ED problems worse.  I speak as a fellow ale-lover who has several dozen assorted bottles in the garage that SWMBO won't let me touch yet!

 

To all the other respondents to this thread - many thanks for sharing your experiences: for those of us just embarking on the journey it is very valuable to hear how others fare.

 

*For the uninitiated, SWMBO = She Who Must Be Obeyed.  From the Rider Haggard adventure novel 'She', and was used by Rumpole as shorthand for his wife - the dreaded Hilda.

Edited by member 24 Sep 2015 at 11:31  | Reason: Not specified

User
Posted 23 Aug 2015 at 23:40

Bit worrying that an ED nurse doesn't know Cialis and Viagra have different chemical components which act in slightly different ways. In very basic terms, Cialis draws blood to the area while Viagra stops it flowing away from the area. Levitra has the same action as Viagra but works slightly better for some men. All three require the man to feel randy and confident - a big ask for men with ED as a result of PCa :-(

I am not sure whether it is always explained to men about the time delay with the tablets though - some seem to expect it to work quite quickly after they have taken the tablet so maybe they miss the moment hours later when it does start to take effect?

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

User
Posted 08 Sep 2015 at 13:55

Hi everyone
I know some newer people are interested in this , and some members are not, so please don't take offence or look away now ! Its a fairly long post .
I'm 11 weeks post LRP , double nerve spare , 100% continent , no natural erections yet , been using a simple pump for 4 weeks to help recovery.
Yesterday was my 2nd ED clinic with 2 separate appointments. The first appointment was for a SOMAerect vacuum pump demonstration from the company rep . You seriously could have written this into a comedy. The office door opens and out walks a seriously stunning 30ish blonde in flowery leggings , crop-top , 4" heels , red lipstick and nails . Honestly ! She had a personality the size of a bus and was just lovely. It worked fine for me but I expect other men would turn and run having seen her. Within 10 minutes with me stood and her sat uncomfortably close and using the pump , I had an erection superior to pre-op , in no pain , and was told it would last for 30 mins. It was truly comical her persuading me she could get it harder. One of the weirdest days of my life. So out I walked with a prescription for the pump and a spare set of rings. I thoroughly recommend this device and a demo to anyone wanting to start recovery. Things were going fine .
I then had to wait a couple of hours to meet the male ED nurse assigned to me for a Caverject demo/appt.
This is NOT for the faint-hearted ok ! A needle the size of the tummy self-injections post-op , which has to be fully inserted into the side of your penis at the base , trying to avoid any small veins etc. I am not at all scared of needles or a bit of pain , but this did hurt and i'm not sure I could do it myself. He showed me 2 available systems and we used 15mg of the available 20mg in the syringe. Within 10 minutes I was 80% erect but not good enough for penetration. I suspect in the "right" circumstances with a partner and stimulation , he would have risen to the challenge . HOWEVER , unfortunately , my entire penis from tip to base was throbbing with pain. So much that I wouldn't be wanting intercourse to be honest. I was sad because I thought this would be the holy-grail ( I think Lyn told me it might not be ! ).
The nurse said as with everything not to give up first go. And I wont ! I have the pump , 4 Caverject ( I must NOT use more than 15mg until he says so ) , and my GP today has given me 4 SPEDRA tablets which are the latest Viagra.
So i've moved forward and wont need to see anyone for months with what i've been supplied. And im glad at that . I can just be sensible and try anything in time. The Caverject is definitely an "event" thing in my mind. No way would I use it for a spare hour in the evening. I'm going to stick to the pump daily to keep him fit , and use a Viagra or Spedra with the pump when we get some time . It has worked for me once.
I do hope this post is worthwhile for people on their new journey - its just honest and open
Best wishes Chris

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 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 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 26 Aug 2015 at 22:47

Viagra does not cause a man to be sexually aroused. Viagra is only effective if you are sexually aroused. To understand how it works you need to understand the mechanics of how a man gets an erection. When you get sexually stimulated, the nervous system in the erectile tissue of your penis releases nitric oxide (NO). YES!! ACTUALLY Kidding.

The nitric oxide stimulates an enzyme that produces something called a messenger cyclic guanosine monophosphate (cGMP). The cGMP relaxes the smooth muscle cells. One result of this is that the arteries in your penis dilate and the blood can flow into your penis more easily. Another result is that the erectile tissue itself fills with blood. Both of these process result in an erection. Viagra works by maintaining the level of cGMP in the smooth muscle cells.

If you are not turned on, your brain will not stimulate the release of any nitric oxide and you will not produce any cGMP.

The above is a lift* from a "how does Viagra work" Google search. SO rather than preventing the blood leaving the penis area, the Viagra maintains a relaxed state of the smooth muscle cells, and allows blood to keep flowing through that area.

My GP explained to me when I asked for, and was provided Viagra, that the sexual side aspect benefit aspect was discovered by accident. Apparently, in a South American country many years ago Viagra was introduced to assist older South American men with blood circulation problems. The Viagra worked their circulation improved. Around the same time the older South American wives of the older South American men started to go to their GPs complaining that their men had started to demand much more sex than was usual as they had become more frequently erect and randy. Eventually, the link was made, with the result that the retail price of the circulation enhancer drug was rapidly enhanced.

* I added YES!! ACTUALLY Kidding." as it suited me.

atb

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 28 Aug 2015 at 13:35

Originally Posted by: Online Community Member

Hi all,

just a quick update, had a chat with the doc, she recommended the ED clinic so im in the que for that.

Was also supplied with Viagra and that night................................well if you can imagine a Limp wet chip, that's about as far as we got!!!!

We had a laugh anyway, early days i suppose........next time eh

Brilliant description Johny!

Would that be a skinny french fry or a chunky cut? 

User
Posted 30 Aug 2015 at 14:40

Hi Johny
I didn't know if it was ok to use your post. It seemed the best place.
So I'm exactly 10 weeks and have been using the pump daily religiously for 3 weeks. And the Viagra 100mg worked !!! The Eagle Has Landed and all that. Yes I needed my cheap Lovehoney pump and my cheap Lovehoney stretchy rings ( four to be precise ) and there he was in all his former glory for half an hour. They advise no longer than this. I understand the mechanics of the operation but can honestly say there was no discernible change in length or girth. Actually , judging from my post-op results , they forgot to take it out maybe.
Anyway it's really good news for people who are hoping on their journeys. It can happen. Yes it's a one-off so far but here's hoping.
Best wishes to all
Chris

If life gives you lemons , then make lemonade

User
Posted 29 Sep 2015 at 21:56

Hi everyone
Many of you wont be interested , but as you know there are also many who are chasing erectile function post-treatment at the moment.
The professional pump and rings continue to serve well and definitely practice makes perfect. Once you have a system it becomes quite easy. The downside for me is reduction of normal sensitivity and the fact that you should only have 30 mins max, and that it hinders the natural progression of lovemaking.
So the other day I risked my first self-administration of Caverject. Nail-biting ? Yes. Painful ? Fairly. Although being advised in the clinic to use 15mg for now I decided to use 17.5mg based on those results that day. I achieved an 85% erection which lasted nearly 2 hrs. It wasn't as painful as before in a throbbing way. I think I should be fine to use the whole 20 mg next time. Not as good as the pump but normal sensitivity and could be administered " beforehand " which is a bonus. I'm not enjoying pill use at all and gaining nothing from it whatsoever. I find time nearly every day to get a quick erection with the pump to keep health down there.
I pray for natural recovery but am still very early at 15 weeks and doing well and not expecting anything more at all at present. I think tablets pumps and injections all have their own place and moments. Feel free to ask.
Best wishes to you all
Chris

Edited by member 29 Sep 2015 at 22:04  | Reason: Not specified

If life gives you lemons , then make lemonade

User
Posted 10 Oct 2015 at 02:07

It is a national supply issue to do with the company failing to get their licensing docs sorted last year. In many areas, the dual chamber Caverject has not been available for months now - there are other threads on this forum about alternatives such as the single chamber injections.

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

User
Posted 13 Dec 2015 at 22:17

Thanks for all of your brilliant responses, many made me laugh a lot!

I buy the unsalted pistachio nuts at Lidl.

I haven't had the opportunity to put it to good use, but it's a great way to wake up!

The 5mg of daily Cialis is enabling me to wake with a "semi" most mornings now, so my confidence is growing that I'll make a full(ish) recovery with my ED.

I also use a pump most days too!

Thanks guys, keep the faith and eat the nuts!

Pablo

User
Posted 14 Dec 2015 at 15:52

Yes I do Pablo !
In their belief daily Cialis 5mg offers no greater benefit than a daily pump erection in terms of recovery , and that all I would see are more artificial erections instead of natural ones , but with all the side-effects and expense. I did bring it up again but he simply assured me there was insufficient evidence. I'm utterly fine with that as I don't want any more medications. They have thrown treatment and prescriptions at me so it's not a money thing.
I bet your thumb nails are getting really strong shelling those nuts :-))
Chris

If life gives you lemons , then make lemonade

User
Posted 25 Feb 2016 at 20:58

Hello folks
I test-drove the Viridal Duo 40mg injection today. This is the injectable form of Alprostadil which can also be in the form of gel ( Vitaros ) and Pellets ( Muse). Caverject is the biggest name for injections but has supply problems. Also , I was responding reliably well to 20mg Caverject but needed a higher dose. So my ED nurse and I went with this.
It is far far easier to use , with the syringe containing both the liquid and the powder , so no messing about with vials and 2 needles and " drawing-up " the solution.
My nurse suggested I go for 30mg and see what happens. Unfortunately I messed up the injection slightly ( my fault entirely - it can be awkward ) and only managed maybe 25 to 27 mg.
Very rapid results and an erection that cheered me to the very core I have to say. And a very useable one indeed with none of the vacuum pump issues. The injecting is not painful but I still had the painful throbbing ( though no worse for the higher dose ). Also it lasted maybe 2 hrs.
Anyway , that's enough detail , and despite all the other cr**p that this disease is bringing to us all , it made me happier than I've been in ages ( on the ED front ).
Much happier.
Chris

If life gives you lemons , then make lemonade

User
Posted 12 May 2016 at 10:26
Chris

50% is a step closer so you and El must be chuffed after only a few days of your new regime.

I just googled "taking daily Cialis and using Viridal injections, some interesting links with very mixed views on both should you/shouldn't you and the results for those that did.

the webchat links suggest that for those who had non nerve sparing surgery it should be OK but for those that had nerve sparing surgery it could be very risky re priapism occurrence.

Of course I would not advise reliance on google searches but would take the advice of your ED specialist nurse above everything else. In the meantime I would say persevere with the pump and Cialis alone for at least another week. I believe it takes a while for that daily dose to build up and stay ever present in your system.

xxx

Mo

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 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 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 21 Aug 2015 at 16:51

Originally Posted by: Online Community Member

Hi all

Im 12 weeks post op, 

Q. is it to soon to start asking the doc for medication with regard to helping with erections?

Thanks,

Johny

 

 

 


Hi Johny
Answer to your question is Nope!
.... I was prescribed Cialis 5mg to take daily as soon as my catheter was removed at 2 weeks post op....

This was not to try to achieve an erection but rather to increase blood flow around damaged nerves in order to assist healing.... I had 50% nerve sparing...... although I believe the jury is still out on whether this is of any benefit or not...

I also have a Vacuum pump which I purchased privately, but they can also  be prescribed on the NHS if required.

I'm currently on Cialis 20mg........and in addition,as an alternative, I have been prescribed Vitaros cream to see if that has more effect..

So definitely ask your GP to be referred to an ED clinic if he/she is reluctant to help..
Luther



 

Edited by member 21 Aug 2015 at 16:54  | Reason: Not specified

User
Posted 21 Aug 2015 at 16:54

Johny see the GP and ask advice.

Did you have any nerve sparing?

As Luther says, Cialis for keeping the blood flowing and then whatever else he suggests.

Our GP only doles out one treatment at a time but yours may well refer you to the ED clinic and give you a pump.

Don't ask - don't get

We can't control the winds - but we can adjust our sails
User
Posted 21 Aug 2015 at 19:39

Hello mate
How you doing ? Re erection , they said they would see me at 12 weeks , but saw me at 8 weeks . My area wont give Cialis daily 5mg as they say its not proven , but they recommend DAILY use of the pump and will give me a demo soon . They said I could use FULL dose of any tablet from the doctors ( Viagra Cialis Levitra Spedra ) up to 3 times per week . Don't ever mix them and best at least 24hrs between doses. But nothing has worked ( It can take up to 6 attempts apparently ). Ive been offered Caverject injections as soon as I want them , but to be honest things are so bad with our worries and future salvage that we want cuddles and not penetration .
As for continence Johny I feel so sorry for you . Is it all down to the surgeon and the day ? And their technique ? Do they all compare notes all the time to help each other try new stuff ? I was dry the day the catheter came out ( same age as you ) and remained at 95% day and night for a long time . Ive just spent a week at Centerparcs with full activity with a 5 year old and can say I am 100% at 9 weeks . Yes I did pelvic floors with the catheter in as I was told to ( many people on here said they were told not to ). I still do them every day but not sure if I need to . I get the odd squirt very occasionally .
Is it all luck of the draw ?? A couple of people recently getting full erections at 4 weeks . One of them having full penetrative sex ?? Me nothing . Others on here 14 months down the road with just a twinge . Its a very individual thing isn't it ? Have you seen the video of the operation on you-tube ? Blimey I wouldn't know where to start , and you just have to hope they are experienced and haven't argued with their partner that morning.
I can only wish you the very best on your journey , and as any man your age hope you get wood back -- im finding it very disheartening indeed
Chris and Elaine x

If life gives you lemons , then make lemonade

User
Posted 27 Aug 2015 at 20:07

Hi all,

just a quick update, had a chat with the doc, she recommended the ED clinic so im in the que for that.

Was also supplied with Viagra and that night................................well if you can imagine a Limp wet chip, that's about as far as we got!!!!

We had a laugh anyway, early days i suppose........next time eh

User
Posted 27 Aug 2015 at 21:42

Hi Johny
Me and El have tried Levitra 20mg and Cialis 20mg as an "event" drug , only to find there was no event !! Not tried Viagra yet . We were advised you need to try these drugs at least 8 times to see if they work or not ( preferably 8 times Viagra , 8 times Cialis etc ). Im getting an appt in 2 weeks for Caverject . My Consultant basically looked at me and even after only 9 weeks said " those tablets wont work for you " !! Despite a double nerve0sparing operation . We think he knows im not well at all and just wants me to have a good time asap . I hate this - Elaine hates this . We are so scared and despite the stress agreed some closeness would be nice .
I hope the ED nurse goes well mate . Remember to push for your rights ok -- you're "young" like me so-to -speak to be losing Mr Woody
Chris

If life gives you lemons , then make lemonade

User
Posted 30 Aug 2015 at 23:44
Folks

you might want to try looking on Google search at Osben Erecaid

This is a system that you can get for nothing on the NHS it is the system that several men on this forum have recommended.

Your GP can prescribe it via mediplus.co.uk

xx

Mo

User
Posted 08 Sep 2015 at 15:30

Informative and helpful post Chris,

Well done for persevering. Worth mentioning to any other men reading this that what works for some may not work for others, and what works for others may not work for some.

No consistency it seems.

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 08 Sep 2015 at 15:32

Hey Johny

I am 43 and 9 weeks post op. I had Davinci Surgery with full nerve sparring.

I was given 5Mg cialis 2 weeks after surgery and although I did take a few I stopped because I didnt like the side effects (flushing, stuffy nose, seeing blue dots when I blink) and thought I was doing the right thing because I wasnt ready to engage in intercorse. However I realised soon after starting that it was not meant for intercorse but for reprogramming Mr Wiggles.

I've had quite a few lazy lobs but probably only about 70% at best, nothing that would work for penetration. My GP also gave me 16 20mg cialis and although I did take one, nothing happened, and Mr Wiggles didnt get his wriggle on even though there was a lot of persuading going on if you know what I mean lol, we just laughed about it.

Its been a few weeks since anything has happened on the lazy lob front but I am now ready to start again with the 5mg cialis and with the pump which Chris mentioned. To see if it will make any difference. God I miss being active.

I totally feel your pain my friend, I've had quite a few oppertunities recently to be active but the old chap has let me down, psychologically this does mess with your head but we also need to remain optomistic and realistic in that our surgery was only a few months ago and internal healing could take quite a few months, even though we all want it back now.

I am completely dry now and have been for many weeks, although I still wear a number 1 pad, I think its more of a comfort thing just knowing its there incase I have an accident, but I do need to take a risk and see if I can go without wearing anything.

I wish you all the best, and hopefully we will all get there and get our grooves on again...

Raiden

 

Edited by member 08 Sep 2015 at 15:36  | Reason: Not specified

User
Posted 14 Sep 2015 at 04:05
New to this forum, but have found some posts quite informative.

I was diagnosed in the summer of 2014, Gleason 4:3 and RLP in August that year, so its over a year now.

My prognosis is good, in so far as I was T2 organ contained, zero margin and a year on my PSA is undetectable. All good. I had nerve sparing surgery (50% I think, but as a result of a comment on here I shall seek clarification)

So, the reason for me coming on here.

Living with the side effects.....and the psychological impacts.

My continence is good, I dont wear pads of any description, just change underware when the odd accident happens (usually alcohol related)

However Ed is problematic.

I am on Cialis, 20mg, as required. Does not work at all with female, but has sigificantly impacted with self stimulation.

I am married and she is incredibly understanding and tolerant. As such I have been very interested to read the female perspective on here, this and other topics.

I have no issue discussing Ed, with friends, family (I have two grown sons) and other females. Plenty of dark humour, poetic justice was a comment that made me laugh.

So a year on and I am now referred to the Ed clinic, I have probably left that a little late.

But, that not withstanding, I have become quite depressed, the sort of "lets end this now" type of depression. Being a controlling type of person (narcissistic I suspect) this seems "SpockLike" entirely logical? At 63 and led a full life even more so.

It is this that I seek comment on, especially from the female perspective as leaving her behind is the main restraining factor.

I am hoping that treatment for Ed will lift the mood, which I am sure it will temporarily as I seek to take advantage, if it works. My sex life is active, apart from penetration, for clarity.

So, a long winded way if asking, but are my psychological impulses normal or am I up my own rear end in self analysis?

User
Posted 14 Sep 2015 at 09:11

Les Hi
Ive messaged you aswell to say hello . I think you will get a lot of support from members on this site . There are no end of kind understanding people a lot further on than us in their experiences . However generally they seem to be up-beat people who will ( and are ) doing anything to fight this disease and try to beat it. Im sure they have a level of depression but when it gets as low as you are saying it becomes serious . Im in the same boat as you , and am now looking at an even bigger fight . I didn't want treatment in the first place ( yes silly me ) , and now after treatment I wonder whether life is worth living and if I can face all the future treatment . I guess your comment about your family says it all . You do it for THEM . I have a 5 yr old boy . I couldn't NOT have the treatment done . You have left ED recovery a fairly long time but with an approach to the hospital clinic you are moving forward and it will give you something to work on. Being impotent does get us all down for sure . Yes you can still have lovely times but all men want penetration essentially , and I know most women miss it when it is gone , but it doesn't become all-consuming to them .
More support will be on its way ........
Chris

If life gives you lemons , then make lemonade

User
Posted 25 Sep 2015 at 04:49
Originally Posted by: Online Community Member
Originally Posted by: Online Community Member
Johsan

"

Do I regret that sex is no longer what it was, even given our advanced age? Of course I do"

Exactly

I get everything you say, but this comment stood out.

Does that feeling remain as just "regret" or does it progress to something else, do you think?

Les, perhaps "regret" was not the right word. Possibly "sad" would have been better

The same sort of sadness you feel when you realise your children have changed and are growing up and don't need you so much. That doesn't go away but it does alter as their lives alter and they move on

It's like the loss a lot of women feel at the menopause.

You don't have that worry anymore about getting pregnant but it is no longer your choice but something you now have to live with.

If you are still loving towards each other and can experience sex in a different form then you really are very lucky.

Yes penetrative sex is lovely, but so is life and I'd rather have my other half - miserable as he sometimes is bless him - than be mourning him (and if he's dead there isn't any penetrative sex anyway is there!)

I'm not being flippant about all this, really I'm not. I do understand that for a man this is a major deal,and it may be for some women too, but at least give the wife the benefit of your doubts and believe her.

Coincidently, I had a conversation about sex with my daughter yesterday.

Four years ago she was treated for aggressive colon cancer.

That treatment in effect "cooked" her personal bits and makes it impossible for any kind of "normal" sex. She is only 42 now so this was when she was in her late 30s.

Have they given up on each other. Not likely. She told me there's more than one way to skin a cat and she would rather be alive with "cooked" bits, enjoying what she has and what she does with that life, than mournfully remembered.

My son in law loves her deeply and has never complained that HIS life is now different too.

If you love wholeheartedly you'll put up with anything, especially when it isn't the other person's fault.

Sorry, rambling again !!

Yes, I get this.

It has dawned on me that I may have two illneses. One physical in the form of PCa which I will beat albeit with side effects, and an underlying mental health issue as yet not formally diagnosed let alone treated. Thank you for your responses, these have made me realise that I need to do something about it before this deteriorates further. (I havent admitted to everything as you might understand)

Thank you

User
Posted 09 Oct 2015 at 11:56

Hi There
Im using Caverject and was initially given 4 , but my pharmacist also stated its damn hard to get hold of. It works for me too but not 100 % . Beggars cant be choosers I suppose . Pump still works well . You need very tight rings I find

If life gives you lemons , then make lemonade

User
Posted 09 Oct 2015 at 21:36

Originally Posted by: Online Community Member

Hi, everyone. I find it fascinating that we have so many different takes on similar problems, both in terms of how we have found different treatments but also the advice and support we get. I'm 20 months on from a radical prostatectomy with 50% nerve sparing. I've used the pump but even with two rings loose hardness quite quickly. The ED nurse told me that sildenafil would be of no benefit to me but I take daily 5 mg cialis and she has suggested trying four tabs at a time to boost response. Otherwise it may have some general benefit to blood supply but no effect on ED. She also said from her experience that few people found Muse worked and didn't like using the pellets, but she gave me the same formulation in a cream which provided a warm glow but nothing else!  s mothers are also using it I wonder if they are experiencing the same issue and if not, where their supply comes from?

Hi wightman,

What many medical professionals do not get is that not every tablet, pill or capsule work,s for everyone in the same way.   So, bluntly, your ED nurse's experience is not worth "diddley squat" to you if it closes HER mind to playing around and allowing you to experiment.

If you read through all the profiles here (you need to get out more, ;-)) you will see that many of us play about with "Meds" and treatment to see what works for us as individuals, and that may mean doing things differently.   

If I were you I would consider putting any request for medication in writing stating that "failure to give me the medication at this time may well hinder my best hopes of recovery."  Present a business case and you may get what you need?

atb

dave

 

 

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 10 Oct 2015 at 13:43

Sorry Lyn to only provide " guess-timations " .. We tend to keep the stopwatch out of the bedroom to spare me any further embarrassment ;-))

If life gives you lemons , then make lemonade

User
Posted 31 Oct 2015 at 20:08

A couple of people have sent me a PM since I posted above and I don't like replying one to one in case the wrong information is given and there is no-one else to see it and correct it (personally, I think the biggest mistake of the new forum was to introduce PMs)

Common mistakes are to not mix it well enough or to forget to knock out bubbles from the top of the needle before injecting, or to inject into the wrong part of the penis. To inject Caverject correctly, the needle should go in half way down the shaft at a good 90 degrees - if you angle it even slightly, you might miss the spongy tissue and it won't work properly. Avoid visible veins or arteries as these will carry away the solution. Give the penis a massage to help the solution move around the spongy tissue. It is best to alternate from right side to left side so that scar tissue doesn't build up. You would know if you accidentally injected into the urethra as the solution comes out of the end of your penis.

Sometimes, there are rogue injections in the box or even a whole batch can be faulty. John once had a box in which every single one failed but it is possible they had been left on the windowsill and overheated.

If caverject is going to work, it will work regardless of whether you are in the mood or not. If it seems to work and then deflates, don't make the mistake of thinking the opportunity has been missed. The first time John had it with the ED nurse, he got an erection immediately but we then had a row and it went down. We drove home, stopped at a cafe, had another row and eventually kissed and made up, at which point the erection returned - this was probably about 90 minutes or more after the injection had been given. A bit of self-belief seems to help it along :-)

Sadly, there are quite a lot of men for whom it doesn't work at all but if it worked when the ED nurse did it then it is most likely a technique issue

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

User
Posted 10 Nov 2015 at 16:11

WOW! How did that happen??

This morning I woke up with a rock solid, unbendable, fit for purpose erection!!!

I'm really chuffed, cant wait for it to happen again!

User
Posted 10 Nov 2015 at 16:20

Yay !! Good for you.

What on earth were you dreaming about!!

We can't control the winds - but we can adjust our sails
User
Posted 10 Nov 2015 at 16:44

Ha Haaaaaaa !! GO GO PABLITO
This is going to happen to me . I'm 2 months behind you .God what a treat , and I bet your smile was from ear to ear like a cat's from Cheshire
Envy
Chris

If life gives you lemons , then make lemonade

User
Posted 10 Nov 2015 at 16:53
P

Well done, what had you been eating ?

Thanks Chris

User
Posted 10 Nov 2015 at 18:09
Yay what's the story morning glory? I hope you can recall and then use at will !!!

Best wishes

Xx

Mo

User
Posted 10 Nov 2015 at 18:56

Jealous as hell! http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

Best Wishes
Luther

User
Posted 10 Nov 2015 at 19:28
Yay!!

I'm still living in hope. But it's great to hear there is hope

X

User
Posted 11 Nov 2015 at 00:19

Originally Posted by: Online Community Member

WOW! How did that happen??

This morning I woke up with a rock solid, unbendable, fit for purpose erection!!!

I'm really chuffed, cant wait for it to happen again!

 

What's your address? 

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

User
Posted 11 Nov 2015 at 07:57

Lyn !!    http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif  http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif  http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif

Edited by member 11 Nov 2015 at 07:58  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 11 Nov 2015 at 09:40
Lyn

That really did make me laugh

Thank you

User
Posted 11 Nov 2015 at 16:54

P

I was eating the pistachio nuts at the same time as this happened one year after surgery.

"I am getting some success with Sildenafil the only side effect is the stuffed up feeling. I have been away for a couple of days and missed my tablets, last night I had mushrooms in garlic butter with a cheese sauce followed by a ham and pineapple pizza accompanied with a G & T and woke up with a sizeable erection and sadly the wife was 170 miles away."

I also tried the natural Viagra made from melons, strawberries limes etc, did nothing but at least I got some of my 5 a day fruits.

Thanks Chris

 

 

User
Posted 11 Nov 2015 at 19:37

Great result for you Pablito. Maybe a full bottle the next night and double the amount of nuts?

What dies puzzle me, and others I expect, is that you might get an event worthy of hanging a heavy coat on one day and nothing as splendid the next or another? Worth keeping working at it though.

atb

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 11 Nov 2015 at 20:11
P

Posted 11 November 2015 19:03:34

Chris, does that confirm that pistachio nuts are the way to go??

I'll keep on munching.

Well they taste nice anyway so I will keep eating them.

Had my urethral catheter removed yesterday after 44 days so ready to restart medication and nuts.

Thanks Chris

User
Posted 11 Nov 2015 at 20:18

Do a pistachio / Viagra smoothie .

Don't quote me , just tell me how it goes ;-))

If life gives you lemons , then make lemonade

User
Posted 11 Nov 2015 at 20:20
Lyn

I wish I hadn't read your comment whilst drinking my new night time cocktail of pomegranate juice and sparkling water .the splurge has left little red dots all over my PJs ....

xx

Mo

User
Posted 22 Nov 2015 at 17:33

Nurse will probably say there is no such thing as a faulty batch but we have had a whole box fail in the past and Zoe's view was that they were either faulty batch or had been stored incorrectly by pharmacy or wholesale supplier or similar.

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

User
Posted 12 Dec 2015 at 15:30

Seriously,three fit for purpose erections!

Preceded by Pistachio Nuts and only 5mg Ciallis.

Pablito

User
Posted 12 Dec 2015 at 16:52

Originally Posted by: Online Community Member

Seriously,three fit for purpose erections!

Preceded by Pistachio Nuts and only 5mg Ciallis.

Pablito



* Orders 1 tonne of pistachios * http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

Great news Pablito!

Luther

User
Posted 12 Dec 2015 at 16:52

Originally Posted by: Online Community Member

Seriously,three fit for purpose erections!

Preceded by Pistachio Nuts and only 5mg Ciallis.

Pablito

What?  

At the same time, side by side?  THAT is the image that sprang into my mind.

Off to get me some nuts...........................!

atb pablito, really pleased for you.

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 12 Dec 2015 at 19:33
P

Well done to you and your surgical team. What brand of nuts ?

Thanks Chris

User
Posted 12 Dec 2015 at 22:17
Pablito

Wow three in a row, same week, same day? ...whatever... I just hope you used them to max effect.

Best wishes

Xx

Mo

User
Posted 14 Dec 2015 at 14:01

Hi all
I had my third ED clinic today. It went well as ever - they seem intent on helping me out being a relative youngster at 48 !! On Friday I tried my last Caverject and despite varying results it worked really well. Very rapid 80% erection that lasted around 90 mins. It was probably just enough for penetration but unfortunately I was on my own ( I wanted to use the last one before clinic ).
Anyway for those interested , the fancy self-mixing pen version of Caverject is still widely unavailable. The mixing kit I have is a weeks wait. My nurse went off and spoke to consultant and came back both having decided I qualified for Viridal Duo 40mg. Same drug but they reckon I obviously need more than 20mg to get a proper satisfactory erection. I have to return to clinic after Xmas ( Boooo ) to learn how to use it and will then be prescribed it. He says its relatively new to Southampton but has better results than the Caverject. He admitted there were problems with incorrect storage , length of storage etc affecting it's quality. We ran through a normal injection again and he's happy I'm doing it right.
He insisted I shouldn't worry about zero natural erections at this stage , and to not compare myself to others on here seemingly doing much better. He said daily Cialis is still a firm No at Southampton. To be honest if I cud get Viridal to give me a firm erection just twice a month that would be great , along with the guaranteed action with the pump.
Anyway best wishes to all on their journeys.
Chris

If life gives you lemons , then make lemonade

User
Posted 14 Dec 2015 at 22:17

Hi Chris,

Re the debate of whether or not to issue Cialis, I would consider approaching your NHS trust with a compelling case for the prescription, and this could, be backed up by your own trial if you felt that way inclined?

The suggestion that Cialis is no better than a daily use of the pump is demonstrably inaccurate.

You use the pump. The penis expands to fill the space created by the vacuum in the chamber. The flesh does not burst but fills the space, and is filled with blood and you probably get a somewhat purple appendage. Maybe to use the pump for 10 minutes or 20? While you are using the pump, blood is encouraged to flow to the penis, because that flesh is creating space for blood. Even though the blood vessels to that area nay be damaged because you are actively encouraging blood there it gets there? Maybe. The theory seems good to me. You stop using the pump, blood is no longer encouraged to flow to the penis, it just floats about wherever it is easiest to get to. The damaged vessels that had been calling for blood when you were pumping are no longer getting engorged, as the heart pumps blood and the blood flows taking the route of least resistance, the open undamaged vessels.

You take a Cialis pill, the drug works by encouraging blood flow and recirculation throughout the body. 24/7. Not just for 10 or 20 minutes, all day every day, while you are asleep. Combine this with a pump and you have a double edged sword attacking the problem and supplying blood to the damaged vessels.

When I bought my first lot of Cialis before I was prescribed, I think they cost me about £30 for 28 tablets.

If you buy a months supply, combine a daily tablet with regular use of the pump, and, IF this produces beneficial results for you, you could go back to your GP with a business case for obtaining them on prescription?

May be worth a punt?

You are still doing well young man.

atb

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 15 Dec 2015 at 10:48
Hi Johny

the thread you started seems to have become the place to talk about ED medications and aids, I hope you are doing well and are able to get some benefit from this ongoing conversation,

Chris, I think you are doing amazingly well given all the circumstances. The thing that would worry me about your NHS trust making a blanket decision on Cialis is, that as far as I am aware, there has been no regional study to back up their thinking. The drug was trialled extensively worldwide the benefits it promotes were proven by these trials and it was deemed safe, hence its licence. From a swift internet search it does exactly what Dave has described. From what I have gleaned the perceived advantage over other PDE5 inhibitors like viagra and Levitra is that they are "event" drugs and hit harder with potentially more serious side effects. Cialis is more of an enabler, primarily because it is constantly in your sysytem. It is not 100% for every Man but then nothing is. I hate to be cynical but it does sound like this is a cost based issue fancied up to be something that attracts less criticism.

I know your ED clinic is stepping up to the plate and giving you as much help as they think they can but they could be missing the one treatment that might actually enable some of their ideas to work...maybe?

If there is no conflict with any of the drugs you are prescribed for both physical or mental wellbeing, then maybe you should at least try Cialis as others have suggested.

I know how much you want to play things by the book if you can, so maybe ask your GP for their professional opinion and see what he/she says about you using the drug privately for a month or two?

If you find it works then your GP or the NHS trust would find it very hard to refuse to prescribe it going forwards.

All the very best

xx

Mo

User
Posted 15 Dec 2015 at 15:35

Originally Posted by: Online Community Member

Are you suggesting by the way that the pump can damage the penis with overuse ? No, Chris, not at your stage post op. 

I try not to Google stuff anymore as it worries me !  A very sensible attitude mate.

Thanks all
Chris

Edited to add, that although your NHS trust may say they have no evidence that Cialis works or may provide extra benefits, there are probably some here, me for one, who would vouch for it working very well, thank you.

atb

dave

Edited by member 15 Dec 2015 at 15:37  | Reason: Not specified

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 15 Dec 2015 at 17:23

Luther see Johnny's opening post.  

Originally Posted by: Online Community Member

Hi all

Im 12 weeks post op, 

Q. is it to soon to start asking the doc for medication with regard to helping with erections?

Thanks,

Johny 

This is one of the most irritating and potentially optimum recovery wrecking aspects of the whole recuperative process, the fact that unless you ask you probably will not get.  And even if you ask, that initial request may be met with what appears to be a reasonably based denial based on conjecture, musing and hearsay or at worst for reasons of budgetary restraint.

So many men appear here asking about what might be available, in some cases, some time after they would have been getting potential benefits.  You got to ask, put that request in writing with a good case for it being granted.  Make it difficult for anyone to say no to you.  My GP was very supportive, gave me what I asked for, but, he did say does it/will it work, can you show it's worth to you.  All understandable in this money limited day and age.  Being presented with a sound business case, IE their financial output likely to give a worthwhile recuperative outcome to me, I got what I asked for.  I was very fortunate indeed.

Go for it, ASK.  Worst case scenario, they say no, and with a really good reason.  But you are no worse off than you are now.

The subject of what can you/ should you ask for, should be a sticky here.  Similarly what you can do to aid recovery after an op, regarding rubbing, tugging and yanking at the penis considering that your urethra has been detached and re-attached. 

rant over.  http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-yell.gif

atb

dave 

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 07 Jan 2016 at 17:41

Johny

 

"He also said because iv not had a natural erection up to now its highly unlikely the Viagra will help, what do you think have i lost my window of recovery in the willy department?"

I got some stirrings and at about 11 months post op was put on 100mg daily sildenafil , it did have some effect but not full erections, as time went on the effect seemed to diminish. 15 months post op I stopped talking the because on the stricture issues, 3 months later I started taking them again and at first it had some effect, now again the effect seems to be diminishing.

The use of the pump has also been erratic, again because of the stricture but I can still get a 100 per cent of the pre-op size.  "Use it or lose it" is very good advice, but for those who were slow of the mark do not think it is too late to start now.

I use Muse with a fair amount of success.

All the best for your recovering.

Thanks Chris.

User
Posted 09 Jan 2016 at 16:07

One thing I would say to anyone on here , and I have before , is that if you feel your treatment of ED is lousy then you need to take control . If you are fortunate enough to have a spare £150 in your pocket then see your surgeon privately and stamp your feet very loudly . A guy your age should definitely be getting thorough help with this .
I'm 7 months nearly mate . At 8 weeks my surgeon said the tablets wouldn't help ( any of them ) despite double nerve sparing. I've tried them all and they make me very uncomfortable symptom wise with ZERO results . The pump is awesome . Its called SOMAerect . Again if the NHS is non-complying then bl***dy buy one if you can and get pumping . I can give you the website . I think its about £160 . I was allowed to start on Injections straight away and have had average success and we are still working on the dose. I'm so lucky in my area that I am getting awesome help. I even have Pump Nurse , ED nurse , and Prostate nurse mobile numbers and they always reply to texts .
Having said all that mate , I'm not getting anything natural happening at all either but I'm damn well not giving up , even though I'm on HT now and have RT ahead.
Johny you have to drive forward if you want recovery . If you sit back then they will happily let you . I'm really polite to everyone I speak to , but I'm needling them and getting results .
All the best
Chris

If life gives you lemons , then make lemonade

User
Posted 19 Jan 2016 at 17:20

Really chuffed mate. Just persevere. Like the lottery , you have to be in it to win it. I've decided to not use tablets at all till after HT/RT. But Gud talk with home GP the other day and he said he will happily put me on 5mg daily Cialis when I want.
So I continue with the pump daily and he looking good ( my perspective ) , and Caverject No6 used the other day. Whilst clearly " not himself " he was man enough !! That'll do me. May all your attempts be fruitful mate
Chris

If life gives you lemons , then make lemonade

User
Posted 20 Jan 2016 at 22:36

Separate out the issue of penile health and erections from the issue of learning to orgasm again. At 6 weeks post-op with no nerves spared, the best you can do is follow the advice above re encouraging blood flow into the penis - not particularly for the blood but for the oxygen it carries. But that doesn't mean you can't have any fun. John had his first orgasm on the day the catheter was removed - oral sex does not need an erect penis to produce a climax and hand masturbation is perfectly possible if you use loads of lube.

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

User
Posted 25 Feb 2016 at 21:05
Hi chris fantastic news 😊 hope you have shared this good news with your wife, so next is sorting out a child minder 😊 jx
User
Posted 25 Feb 2016 at 21:06

Hi Chris,

I don't think I have ever been happy to read about another man's erection? So you are a first! Hope you can achieve more and put them to good use mate?

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 25 Feb 2016 at 21:32

Originally Posted by: Online Community Member

I would avoid buying a pump if you possibly can get it on prescription. The proper ones cost around £350 but are available free on the NHS in most CCG areas. The sex-toy kind that you get from Amazon or Ann Summers are nothing like the proper ones.

FFS.

Any pump may be better than no pump?  A vacuum clear may be better than no pump?  

"Es ist besser, schlecht zu fahren, als auch zu Fuß", as a friend of mine used to say to me.  

Broadly speaking, it translates to "It is better to drive badly, than walk well".  A German saying suggesting it is better to drive somewhere in a heap of a car than to walk somewhere in a splendid pair of shoes.

So to apply this to your situation.  It may be better to have a "nothing like the proper" "sex toy"/"pump" from Ann Summers, than no pump.  

And, unless someone has tried and tested all the pumps how can anyone say how they will perform?  If it were me and my penile health were at risk, I would invest the £30 or so.  I was prepared to buy a pump, £320, if my GP declined to offer me one on a script.  

We can all complain about the lack of resources from the NHS, how we should be getting X, Y and Z.  But you have the opportunity of a cheap fix on the Hi Street.  I know what I would do.  But, it's your bits.

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 26 Feb 2016 at 07:07
Chris

Link to page.

https://books.google.co.uk/books?id=jsU3IsgiaO8C&pg=PA128&lpg=PA128&dq=flaccid+intercourse&source=bl&ots=wI9rQOFf0Z&sig=6DDBAO3LMS5Cmf66tgKF3c3zDlI&hl=en&sa=X&ved=0ahUKEwiD-pj47JTLAhVJthQKHblNCa8Q6AEIGjAE#v=onepage&q=flaccid%20intercourse

You may need to copy and paste it into your browser. I would copy and paste the extract but I suspect that may not be allowed.

Thanks Chris

User
Posted 04 Mar 2016 at 17:30

Great news for you both Chris,

Persistence pays off. If you had not pumped it up all this time, there may have been no live tissue to respond to the Viridal?

Have a great weekend.

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 04 Mar 2016 at 18:13

Exercise is good for any muscle Chris.

He might have been pathetic but now he's awake. Glad you are happier. Long may it continue

We can't control the winds - but we can adjust our sails
User
Posted 19 Apr 2016 at 08:59

Hi Pablito
I'm 2 months behind you as you know. Basically zero activity naturally which is very distressing. I guess your Dr's advice is why I wasn't offered Cialis. But I think the evidence HAS to be true that you are getting blood down there 24 hrs which has to helping repair. And I'm just using the pump every day still which is without a doubt at least keeping him fit and healthy. He looks damn well on an injection of Viridal even if I say so myself. Maybe this is your next step to try Alprostadil in the form of pellet cream or injection ( not at the same time as Cialis ). I still hope something is going to happen for me. I totally get the right stirrings and even have to check down there , but to no avail. A friend I made on this site tried Cialis and hated it so stopped. He is now getting full natural erections at 9 months , but not on demand. I guess some people are just lucky. But Lyns husband had RP and RT and HT and he has proper usage back even if it took 2+ years. So let's not give up hope friend.
Best wishes
Chris

If life gives you lemons , then make lemonade

User
Posted 19 Apr 2016 at 09:13

Well s/he sounds like a bundle of laughs! And is saying completely different to other ED specialists. How confusing for you :-(

As you probably recall, John had 2.5mg (and then later increased to 5mg) daily Cialis but did not take this to get erections. For an 'event', he missed his daily dose and took a Viagra or Levitra instead. He took this for over three years but is certainly not on it for life. Most of the CCGs that do approve it for nerve repair recommend funding the daily dose for a max of 2 years as research suggests that any repair will have happened by then.

General view among medics is that however you are at 2 years post-op is as good as it is going to get. Having said that, John's greatest progress was between months 30-36 and he was gaining natural erections by year 4.

Perhaps the confusion / different views is about the physical ability to get an erection and the emotional impact of PCa. Somewhere in the time between his op and year 4 John progressed to being able to have an erection; whatever physical / mechanical causes of ED had been resolved and it only continued to be a problem in his mind - ED linked to performance anxiety, self-identity crisis, etc. As you can get an erection, you may fall into the same group - it isn't the physical issue that still needs to be resolved but the mind. And I don't think any medic can put a time limit on that!

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

User
Posted 19 Apr 2016 at 15:24

P

I am almost at the two year anniversary of my RARP, the last couple of months have seen more improvement in tumescence than in the previous 21 months. I did get off to a slow start with my penile rehabilitation due to a stricture. The daily 100mg sildenafil does produce some tumescence and the muse varies from okay to very good, timing is everything.  I was "supposedly" non nerve sparring so anything is a bonus, as my surgeon said there is a network of nerves and something must have survived.   Sorry to repeat myself but you do not need an erection for vaginal intercourse and of course it is spontaneous.

Thanks Chris

 

User
Posted 19 Apr 2016 at 16:14

CJ

Google "scissor sisters position" then pick "images" at the top, scroll down and you will see a sketch of a man and women. 

Good luck and keep the windows shut.

Thanks Chris

User
Posted 19 Apr 2016 at 20:18

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).  It may work for you it may not.  Do you have access to Sildenafil, Viagra?

 

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).  Pablito, you can believe him, who is hypothesising and generalising, or you can believe the true stories you read here, the facts.  My "best recovery" was made recently, that is around 30 months ish post DaVinci.  I thought I was doing well with the results I was getting around 6 to 8 months post op, May 2013.  It continued to improve beyond that and is still improving. Mind you I hardly leave it alone, so it has no chance!  If I am sleeping alone, mostly am these days, and wake up at 4am, I get up and exercise, helps me get back to sleep quickly.    

"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).  Can not comment on that, I am on 5mg Cilais daily.  Good for circulation and nail growth.  I hope to be on it ad infinitum.     

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.  Work on it.  If you can achieve UEs, what is happening to make this occur, what is the stimulus for these?  Replicate that stimulus often, frequently.  Masturbate wherever and whenever you can, as often as you can.  If your bits have the capacity  and ability to perform, then you may wish to do all you can to use them and encourage them with plenty of exercise, and related use.    If you get it up at 4am, FFS use it.  If it happens at lunchtime, use it. Capiche?

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 was not concerned that my prescription would stop until you mentioned that possibility.  Reggub!

I'm 51 weeks post op EARLY DAYS and not sure whether it was a good, bad or indifferent meeting.  It was nowhere as near as bad as it could have been, and nowhere near as good as it should have been.  But that is not down to you.  From what you are saying here, you appear to have the chance and the likelihood that you will still improve, and you might want to do all you can to ensure that you do, and that means exercise.  No gym subscription needed, no special kit.  Whenever you get the chance, be like NIKE, JUST DO IT!  

He may be an expert in his field, staff at the hospital may address him as "Mr Whatever, he may also be so superhuman so as to be able to delegate the task of his early morning wee and dump to a member of his staff, BUT he is not necessarily correct in his assessment for you, or all other men.  They don't appreciate the impact of ill thought words, generalisations, on us real men, human patients.

All men react differently to treatments.  Unless you do all you can you will not know how much you can recover.

atb

dave

 

 

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 19 Apr 2016 at 23:16

Walnut, if you get the Esteem it comes with a DVD which includes some really important info. The GP would need to order the pump plus an additional bag of assorted rings, which has its own prescription code. It isn't something you can measure - once you get used to using the pump you then move on to trying smaller and smaller rings until you find one that is tight enough. It takes practice and a lot of guts to go down the sizes! Quite a lot of men need to wear two rings, hence the mixed bag is useful. They don't wear out that quickly though. We ended up with Farnhurst rings because the combo worked better - it is a real fiddle to use one make of rings with a different pump though and not to be recommended if you can avoid it.

Chris mentions the different tube sizes for the Soma. The Esteem comes with one tube - one size fits all :-) Quite different in design although they all do pretty much as well as each other I think.

Definitely do not opt for the Classic! Your arms will fall off.

As far as I know, you can get a bag of assorted rings for the Soma as well. Remind the GP to put an extra tube of the manufacturer's lube on the prescription while he is at it ... it gets quite expensive once you are buying your own.

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

User
Posted 20 Apr 2016 at 09:56

Which ever one you get read the instructions and watch the video. On my first attempt I got a testicle inside the ring quite painful is an understatement and the normal rings do not come off easily. The OH finished up cutting the ring off with a pair of scissors.

My Sommaerect came with some quick release once only use rings, if you hold them in the wrong place while stretching over the tube they rip.

Thanks Chris

User
Posted 20 Apr 2016 at 17:14
I never thought I'd be joining in this conversation but here I am. Just back from the hospital having seen the 2 reps ( 1 was training ) from Imedicare.

Door locked and off we went. Discussed my PCa history and they we're pleased I'm on Cialis too, as it helps to make use of the pump more effective apparently.

It was the dropping my trousers and underwear that got me. Standing there with clothes around my ankles , shoes on and the device held around my middle parts.I started laughing and they joined in too. It was the same room that I had my biopsy in and I showed them where I clung on for dear life to the bars at the side of the bed during that procedure. Well ,where else do you place your hands ? They had another laughing fit and wanted me to demonstrate that but I declined.

I've been prescribed Somaerect II and the Y x3 size constriction rings. I was able to take the Prescription Advice form directly to my surgery and hopefully it'll be available by Friday for onward transfer to the Pharmacist. Annoyingly I'm away on holiday from Monday , so I guess it will be in the early part of May before I can use it. It'll be a nice gift to return home to as I approach my 59th birthday around then !

They were also recommending Viberect as well but that would be at my own cost . Has anyone had experience of this? It looked good as they demonstrated it.

John

User
Posted 20 Apr 2016 at 18:17

Hi John
Sounds very much the same experience I had in clinic with iMedicare. But more difficult because it was actually a beautiful young very curvy blonde running the show. Most embarrassing but strangely funny ( you have to laugh heh ). I ended up with three Y rings. She said they perfect for nearly everyone , as is the response 2 pump which fits everybody except for the 'big boys ' out there ! I love it's ease of operation. I keep ' beard trimmed ' down below all the time now which is ample , and I don't use lube at all. I hate it , it's messy and turns claggy. I just wash in warm water at the sink , leave him nice and soapy , dry my hands and then sit on the bed for 15 minutes. Either that or have a face shave at the same time because my sink is the perfect height - who said men can't multi task ? I hope things work out good for you
Chris

Edited by member 20 Apr 2016 at 18:19  | Reason: Not specified

If life gives you lemons , then make lemonade

User
Posted 20 Apr 2016 at 19:01

Hi John I have my pump from chemist today (have PM'd you) will be seeing rep from pump firm on 6th May not sure wether to try pump beforehand or not. What do you reckon?

Already took the Cialis too.

Stand back and wait ( light blue touch paper etc etc)

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 20 Apr 2016 at 20:39

John the reps will be seeing one more HT/RT patient on 6th and I will be banging our drum as I agree we get overlooked, hope there are some mor in the same boat that will push for help in ed department. Just like you, I was not given advice re ed and it is only what is learnt here that has helped to realise that it is worth pushing for help even though our situation may only be temporary, two three or four years depending on how long it takes to get rid of HT from our bodies.

We still need to keep the blood flowing while we have no libido guys get the support that is there when/ if you ask.

Shame that nothing is said at various stages of consultation to keep us informed.

Here's to life on the up(hopefully)

Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 20 Apr 2016 at 22:46

Surr,

The viberect is an expensive bit of kit.

I looked at the study they quote and basically they got a bunch of young lads to try it out and found that some could orgasm with it.

That is not to say that it might help but there is no evidence.

I looked at this and then settled for the much cheaper Hot Octopus plus which can be used flaccid and also has a remote for your partner so can be used by both of you simultaneously.

 

http://www.hotoctopuss.com/buy-pulse-now/

 

It's less than half the price of the viberect (Shop around for the best price mine was about £80) and it takes a lot of the elbow work out of achieving an orgasm, I haven't achieved one using solely the device but am getting nearer and it is good fun to use- no hands needed and you can lay down in bed whilst the other half reads her book club book.

(PS I've no connexion to the company)

No one has mentioned the Rapport Premium here - has anyone else got one ?

There seem to be an awful lot of reps around demonstrating their firms bit of kit.

RD

Edited by member 21 Apr 2016 at 08:04  | Reason: Not specified

User
Posted 21 Apr 2016 at 16:23

Originally Posted by: Online Community Member

Hi

Not quite in the same league but a pulsating shower head on a power shower is very stimulating.

Thanks Chris 

 

I'm off to try it now! 

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

User
Posted 21 Apr 2016 at 19:38
Thanks all for the advice/ suggestions , all worth thinking about.

The good news is that I was able to see via online GP prescription service that my request has been accepted for the pump and rings. So I'll be off there tomorrow morning to collect it and take it the pharmacy. Hopefully if I ask nicely they may request the goodies to be expedited soonest , hopefully by Monday in time for my hols.

And to have the pump would be a great present for my birthday whilst I'm away !!

Regards all,

John

User
Posted 12 May 2016 at 16:49
Chris,

Oh takes cialis 5mg every second day, but not on injection days. As long as he moves about afterwards (I've morning and not evening) there doesn't seem to be any ill effects. On the days we choose to have a furtle around but not use an injection, the cialis seems to help. He does get an erection, but as you say, it's probably not useable. We've not tried, and although I'd like to see if it is useable, I don't want to turn it into a disaster if it isn't.

From our point of view, it REALLY isn't all about the actual act, it can be just as enjoyable without penetration. Not better, not worse, just different.

L x

User
Posted 12 May 2016 at 19:34
CJ

You forgot the most important bit keep the windows shut, unless you live in an isolated House.

Thanks Chris

User
Posted 12 Jun 2016 at 08:01

So everybody
I'm now days away from 1 year post op. Daily pump use but no natural recovery yet. As you will know I self funded Cialis 5 mg from an online source and have been taking it two days on then one day off.The symptoms are totally manageable -mostly a bit of heart burn. I am now , with any sexual stimulation , able to get a fully useable erection hurrah. By adding a cheap Ann Summers penis ring ( clear , blue or black depending on how racy I'm feeling ) I've been able to have great sex with full erection. Far far better than the injection , because zero pain involved. I was getting long long pain after injecting , even though very happy with the erection. I'm fairly confident my GP will now switch my scrip to Cialis , and he's so nice he would prob let me have occasional injections aswell.
My main problem , which many report , is that in a very short period of time I seem to have lost maybe 2" in length and some girth which has just added even more unhappiness to this f***ing cancer. Just can't suss it as I use the pump daily and if anything he was looking better than pre op with all the exercise , and then maybe just in 6 weeks this has happened. I'm confused whether daily pumping actually isn't enough to prevent atrophy , unless you're at it 24/7 , or whether my 8 months of Bicalutamide is causing it.
Anyway very chuffed mostly. Lovely holiday in August to look forward to then back on the rollercoaster by stopping HT and then trying to confirm whether I'm advanced instead of just locally advanced , by a further Choline C11 PET scan. So Christmas time could be a bit fraught with angst. In the meantime I'll fit as much bonking in as possible. Gonna get a standing order with interflora 😬😀

Edited by member 12 Jun 2016 at 08:04  | Reason: Not specified

If life gives you lemons , then make lemonade

User
Posted 05 Jul 2016 at 14:23

Hi guys / gals
Update if anyone interested. ED nurse phone appt today. I complained no natural recovery at 13 months post op. Discussed my daily pump usage ( once per day for 10 mins ) , and that sadly in the last 2 months I have rapidly lost length and girth. He was surprised at that , but nonetheless suggested I use the pump LESS regularly as if it was going to work it would have by now.
Discussed Viridal injection and why I needed a full 40 mg to get an 80% erection. He couldn't answer that and stated each man was different. I explained I was slowly but surely avoiding injection and penetrative sex because of the terrible pain I experienced for hours after.
He told me there is a BRAND NEW injection ( he couldn't remember the name ) which we will try 1st August at appt if my Uro happy to prescribe / fund it. Apparently far less pain. Also said we could try Muse in the future to prevent needle marking and bruising I am experiencing.
He asked how I was getting on with my daily Cialis 5mg which I'm self funding. I told him initially it was brilliant but not quite enough for full sex. He expressed that I should definitely continue this and less use of the pump and as much nookie as possible. This was strange coming from an area that refuses to fund daily Cialis on the grounds of insufficient evidence that it is beneficial. All in all a good review , and at least I got to vent some angst , which as you fellow sufferers will know can really bl***dy get you down after a while.
Onwards and upwards. Never give up !
Chris

If life gives you lemons , then make lemonade

User
Posted 05 Jul 2016 at 16:21
CJ

I don't really need to say this to you but never give up. I am now 26 months post op, I am now getting that strange feeling in the penis and testicles as if an erection is about to happen, sadly I don't get the erection but at least something is happening. Still getting semi tumescence even without and medication. My pump use has been hit and miss because of my stricture and I have not used the pump for weeks with out any noticeable shrinkage.

Thanks Chris

User
Posted 05 Jul 2016 at 16:25

I'm getting those feelings too .......
Always a disappointment when I reach down though. I'm going to continue the Cialis maybe 4 times per week.

If life gives you lemons , then make lemonade

User
Posted 10 Jul 2016 at 22:28
Originally Posted by: Online Community Member

Hi guys / gals
Update if anyone interested. ED nurse phone appt today. I complained no natural recovery at 13 months post op. Discussed my daily pump usage ( once per day for 10 mins ) , and that sadly in the last 2 months I have rapidly lost length and girth. He was surprised at that , but nonetheless suggested I use the pump LESS regularly as if it was going to work it would have by now.
Discussed Viridal injection and why I needed a full 40 mg to get an 80% erection. He couldn't answer that and stated each man was different. I explained I was slowly but surely avoiding injection and penetrative sex because of the terrible pain I experienced for hours after.
He told me there is a BRAND NEW injection ( he couldn't remember the name ) which we will try 1st August at appt if my Uro happy to prescribe / fund it. Apparently far less pain. Also said we could try Muse in the future to prevent needle marking and bruising I am experiencing.
He asked how I was getting on with my daily Cialis 5mg which I'm self funding. I told him initially it was brilliant but not quite enough for full sex. He expressed that I should definitely continue this and less use of the pump and as much nookie as possible. This was strange coming from an area that refuses to fund daily Cialis on the grounds of insufficient evidence that it is beneficial. All in all a good review , and at least I got to vent some angst , which as you fellow sufferers will know can really bl***dy get you down after a while.
Onwards and upwards. Never give up !
Chris

Hi there Chris,

I'm wondering if your loss of size might be due to the pump giving a false impression?

I've been lucky in that 18 months on I can get erections naturally but still use Cialis anyway as I get it prescribed and it improves things. Sex is like it used to be

Earlier in my recovery if I used the pump I could pump my penis up pretty impressively, but now I can get full erections with 5mg of Cialis that is maybe 0.5 inch less but rigid and solid, but not as large as with the pump

I think that's it's a lottery in nerve sparing surgery because in each man the nerves can be in different places so some might be spared "better"

There are new techniques in detecting exact nerve locations but that's all bye the bye for us now

Edited by member 10 July 2016 22:27:19

Edited by member 10 Jul 2016 at 22:31  | Reason: Not specified

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 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 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 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 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 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 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 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 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 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 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 20 Aug 2017 at 17:59

Reported to the moderators ;-/

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

User
Posted 30 Nov 2017 at 12:38

Hi all
Lots of very sad news on the forum recently. It seems there always is :-(
I just wanted to put in a report on my erectile recovery , mostly to encourage others behind me on their journey , and to stress the importance of not giving up on recovery. I’m now approaching 30 months post op , and as you know I’ve tried everything in the bag to regain function. For the last six months maybe my wife and I have been lucky that with daily Cialis 5mg and a soft stretchy ring , we have got back to completely normal. The ring was essential in achieving full erection strangely. Admittedly he’s not what he was length wise having lost over an inch I’d say , but girth wise much the same. He’ adopted an upwards bend which is a bonus lol.
So really I’ve thought that’s it recovery wise and mustn’t grumble etc , but lo and behold the last two days he’s back to full erections on demand WITHOUT the ring !! I nearly cried. I remember Lyn saying that recovery can still happen long after 2 years and it seems she was right. So some good news.
If they had got my cancer I’d be in a good place right now , but tragically for me with a romping psa I’m going to lose it all for a second time when I start HT which is unavoidable soon. I can’t bear to think of it.
Keep trying everyone

If life gives you lemons , then make lemonade

User
Posted 30 Nov 2017 at 14:16
CJ

Well done mate, you certainly deserve it, you are an inspiration, keep it up, well not for too long.

Thanks Chris

User
Posted 30 Nov 2017 at 16:46

Really good to have some good news on the forum.
I find it particularly encouraging because I am ten months post op with no real progress with ED. Will continue with pump and Viagra as advised by my Uro.
Make the most of it while you can and good luck with your HT

Thanks
Bill

User
Posted 29 May 2019 at 12:09

Chris, I would not assume HT will lose it.

I've been on HT for a while now (awaiting RT, but there's been a much longer delay than is typical). It doesn't seem to directly impact erections. It impacts libido, and as a side effect, that impacts erections. I would say it's more difficult to get started because with reduced libido, your mind easily wanders to something else, but if you keep your mind on what you're doing and stop it from wandering, erections are just the same as before. You also need to keep concentrated once it's hard, and again, it's easy to suddenly think, did I put the rubbish bins out, or some such, and find it's losing hardness, but it returns when you get your mind back on to what you're doing.

I think the most difficult part is imagining beforehand the effect of reduction/loss of libido. Having been told beforehand by the ED nurse, "use it or lose it", I'd thought to myself, well that's not going to be difficult! However, it is without libido. You may need to force yourself when you aren't actually that interested. You need to explain that to your partner too. Maybe agree some pact between you where it's OK, or even encouraged, for her to drive things even if you seem uninterested.

Of course, my experience may not be universal, and there might be others who lose erection capability directly from HT. There is certainly another thread here at the moment where Davywls hasn't lost libido on HT.

EDIT: Urgh... I had two threads open and thought I was reading/editing a the new one, not a 2 year old one...

Edited by member 29 May 2019 at 18:20  | Reason: Edited old thread in error.

Show Most Thanked Posts
User
Posted 21 Aug 2015 at 16:51

Originally Posted by: Online Community Member

Hi all

Im 12 weeks post op, 

Q. is it to soon to start asking the doc for medication with regard to helping with erections?

Thanks,

Johny

 

 

 


Hi Johny
Answer to your question is Nope!
.... I was prescribed Cialis 5mg to take daily as soon as my catheter was removed at 2 weeks post op....

This was not to try to achieve an erection but rather to increase blood flow around damaged nerves in order to assist healing.... I had 50% nerve sparing...... although I believe the jury is still out on whether this is of any benefit or not...

I also have a Vacuum pump which I purchased privately, but they can also  be prescribed on the NHS if required.

I'm currently on Cialis 20mg........and in addition,as an alternative, I have been prescribed Vitaros cream to see if that has more effect..

So definitely ask your GP to be referred to an ED clinic if he/she is reluctant to help..
Luther



 

Edited by member 21 Aug 2015 at 16:54  | Reason: Not specified

User
Posted 21 Aug 2015 at 16:54

Johny see the GP and ask advice.

Did you have any nerve sparing?

As Luther says, Cialis for keeping the blood flowing and then whatever else he suggests.

Our GP only doles out one treatment at a time but yours may well refer you to the ED clinic and give you a pump.

Don't ask - don't get

We can't control the winds - but we can adjust our sails
User
Posted 21 Aug 2015 at 19:39

Hello mate
How you doing ? Re erection , they said they would see me at 12 weeks , but saw me at 8 weeks . My area wont give Cialis daily 5mg as they say its not proven , but they recommend DAILY use of the pump and will give me a demo soon . They said I could use FULL dose of any tablet from the doctors ( Viagra Cialis Levitra Spedra ) up to 3 times per week . Don't ever mix them and best at least 24hrs between doses. But nothing has worked ( It can take up to 6 attempts apparently ). Ive been offered Caverject injections as soon as I want them , but to be honest things are so bad with our worries and future salvage that we want cuddles and not penetration .
As for continence Johny I feel so sorry for you . Is it all down to the surgeon and the day ? And their technique ? Do they all compare notes all the time to help each other try new stuff ? I was dry the day the catheter came out ( same age as you ) and remained at 95% day and night for a long time . Ive just spent a week at Centerparcs with full activity with a 5 year old and can say I am 100% at 9 weeks . Yes I did pelvic floors with the catheter in as I was told to ( many people on here said they were told not to ). I still do them every day but not sure if I need to . I get the odd squirt very occasionally .
Is it all luck of the draw ?? A couple of people recently getting full erections at 4 weeks . One of them having full penetrative sex ?? Me nothing . Others on here 14 months down the road with just a twinge . Its a very individual thing isn't it ? Have you seen the video of the operation on you-tube ? Blimey I wouldn't know where to start , and you just have to hope they are experienced and haven't argued with their partner that morning.
I can only wish you the very best on your journey , and as any man your age hope you get wood back -- im finding it very disheartening indeed
Chris and Elaine x

If life gives you lemons , then make lemonade

User
Posted 21 Aug 2015 at 19:55

Johny,

The sooner you start with the medically assisted rehab, the better.  Have you Googled Cialis to see if there is any evidence out there to support that being prescribed? I had 5mg Cialis, and Viagra from 3 eweeks pots op, a pump about 8 weeks later. I was a slow recovery but 2yrs 3 months on very happy.  Without the meds and the pump, maybe my recovery would not have been as good or taken a lot longer. 

It might hep if you make any requests in writing stating why you are asking for kit or meds. The more persuasive you are the harder it is to turn you down. Worked for me, but my GP was very supportive, all he asked for was some evidence, or at least that something might work.  It is worth noting that no all meds work for everyone.  But the use of Cialis for assisting blood circulation to and around the damaged area is, as far as I am aware, well established.  That could be anecdotal, as in what I had heard about and from others, or online. He was a diamond.

atb

dave

Edited by member 22 Aug 2015 at 08:46  | Reason: Not specified

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 23 Aug 2015 at 21:41
Hi Johnny,

Our ED nurse told us that there was no difference between Viagra and cialis, except cialis was more expensive.

I phoned the helpline attached to this website, and they found me the evidence and emailed it to me. I took it to the nurse and she agreed we could have it. It's worth a try. I might even still have the email, and could forward it to you. If you're interested, send me a message.

My OH is now 8 months post op. He's been slightly less fortunate than some others on this forum in his side effects. He's still struggling with 2 pads a day, but it is improving slowly. And his remaining one nerve bundle doesn't seem to be working as yet. I'm still hopeful. We've had the odd semi, but the psychological effects are taking their toll on that.

I think a lot of it is about the psychological effects.

Louise

User
Posted 23 Aug 2015 at 23:40

Bit worrying that an ED nurse doesn't know Cialis and Viagra have different chemical components which act in slightly different ways. In very basic terms, Cialis draws blood to the area while Viagra stops it flowing away from the area. Levitra has the same action as Viagra but works slightly better for some men. All three require the man to feel randy and confident - a big ask for men with ED as a result of PCa :-(

I am not sure whether it is always explained to men about the time delay with the tablets though - some seem to expect it to work quite quickly after they have taken the tablet so maybe they miss the moment hours later when it does start to take effect?

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

User
Posted 26 Aug 2015 at 21:47
Originally Posted by: Online Community Member

Bit worrying that an ED nurse doesn't know Cialis and Viagra have different chemical components which act in slightly different ways.

That's not all that's worrying about our ED nurse!!

User
Posted 26 Aug 2015 at 22:47

Viagra does not cause a man to be sexually aroused. Viagra is only effective if you are sexually aroused. To understand how it works you need to understand the mechanics of how a man gets an erection. When you get sexually stimulated, the nervous system in the erectile tissue of your penis releases nitric oxide (NO). YES!! ACTUALLY Kidding.

The nitric oxide stimulates an enzyme that produces something called a messenger cyclic guanosine monophosphate (cGMP). The cGMP relaxes the smooth muscle cells. One result of this is that the arteries in your penis dilate and the blood can flow into your penis more easily. Another result is that the erectile tissue itself fills with blood. Both of these process result in an erection. Viagra works by maintaining the level of cGMP in the smooth muscle cells.

If you are not turned on, your brain will not stimulate the release of any nitric oxide and you will not produce any cGMP.

The above is a lift* from a "how does Viagra work" Google search. SO rather than preventing the blood leaving the penis area, the Viagra maintains a relaxed state of the smooth muscle cells, and allows blood to keep flowing through that area.

My GP explained to me when I asked for, and was provided Viagra, that the sexual side aspect benefit aspect was discovered by accident. Apparently, in a South American country many years ago Viagra was introduced to assist older South American men with blood circulation problems. The Viagra worked their circulation improved. Around the same time the older South American wives of the older South American men started to go to their GPs complaining that their men had started to demand much more sex than was usual as they had become more frequently erect and randy. Eventually, the link was made, with the result that the retail price of the circulation enhancer drug was rapidly enhanced.

* I added YES!! ACTUALLY Kidding." as it suited me.

atb

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 27 Aug 2015 at 20:07

Hi all,

just a quick update, had a chat with the doc, she recommended the ED clinic so im in the que for that.

Was also supplied with Viagra and that night................................well if you can imagine a Limp wet chip, that's about as far as we got!!!!

We had a laugh anyway, early days i suppose........next time eh

User
Posted 27 Aug 2015 at 21:42

Hi Johny
Me and El have tried Levitra 20mg and Cialis 20mg as an "event" drug , only to find there was no event !! Not tried Viagra yet . We were advised you need to try these drugs at least 8 times to see if they work or not ( preferably 8 times Viagra , 8 times Cialis etc ). Im getting an appt in 2 weeks for Caverject . My Consultant basically looked at me and even after only 9 weeks said " those tablets wont work for you " !! Despite a double nerve0sparing operation . We think he knows im not well at all and just wants me to have a good time asap . I hate this - Elaine hates this . We are so scared and despite the stress agreed some closeness would be nice .
I hope the ED nurse goes well mate . Remember to push for your rights ok -- you're "young" like me so-to -speak to be losing Mr Woody
Chris

If life gives you lemons , then make lemonade

User
Posted 27 Aug 2015 at 22:20

Thanks Chris,

Think she gave it to me just to have a go, see what happens, not a blooming lot to be honest.

No mention of taking them for 8 times, Not had much follow up since i left hospital to be honest, iv had to push for everything.

Now i know how the game works so be it, if you don't ask you don't get, wrong really.

Johny

User
Posted 28 Aug 2015 at 13:35

Originally Posted by: Online Community Member

Hi all,

just a quick update, had a chat with the doc, she recommended the ED clinic so im in the que for that.

Was also supplied with Viagra and that night................................well if you can imagine a Limp wet chip, that's about as far as we got!!!!

We had a laugh anyway, early days i suppose........next time eh

Brilliant description Johny!

Would that be a skinny french fry or a chunky cut? 

User
Posted 30 Aug 2015 at 14:40

Hi Johny
I didn't know if it was ok to use your post. It seemed the best place.
So I'm exactly 10 weeks and have been using the pump daily religiously for 3 weeks. And the Viagra 100mg worked !!! The Eagle Has Landed and all that. Yes I needed my cheap Lovehoney pump and my cheap Lovehoney stretchy rings ( four to be precise ) and there he was in all his former glory for half an hour. They advise no longer than this. I understand the mechanics of the operation but can honestly say there was no discernible change in length or girth. Actually , judging from my post-op results , they forgot to take it out maybe.
Anyway it's really good news for people who are hoping on their journeys. It can happen. Yes it's a one-off so far but here's hoping.
Best wishes to all
Chris

If life gives you lemons , then make lemonade

User
Posted 30 Aug 2015 at 16:54

Hiya Chris,

What did you order from Lovehoney pump wise and stretchy ring wise, may as well jump on the band wagon and give it a go

Johny

User
Posted 30 Aug 2015 at 17:30

Ok Johny I'll PM you later . I don't know how to post links and im on the family laptop so don't want to search Lovehoney
Cheers Chris

If life gives you lemons , then make lemonade

User
Posted 30 Aug 2015 at 21:47
That's brilliant news Chris! Would you mind PM me the link too?

Trish

User
Posted 30 Aug 2015 at 23:44
Folks

you might want to try looking on Google search at Osben Erecaid

This is a system that you can get for nothing on the NHS it is the system that several men on this forum have recommended.

Your GP can prescribe it via mediplus.co.uk

xx

Mo

User
Posted 05 Sep 2015 at 11:52

Thanks William for that really encouraging post for people to read . As people on here have said , good news is very welcome even though some have not been so lucky with their progress . Im only just coming to 3 months now. Not having any natural erections whatsoever but many twinges so real I have to check haha . I think progress will be gradual . ED aids and medicines are beginning to work for me also. I have my second ED appt Monday and am trying Caverject ( being demonstrated ) . I can then pick and choose what I try over the months ahead.
Chris

Edited by member 05 Sep 2015 at 12:22  | Reason: Not specified

If life gives you lemons , then make lemonade

User
Posted 08 Sep 2015 at 13:55

Hi everyone
I know some newer people are interested in this , and some members are not, so please don't take offence or look away now ! Its a fairly long post .
I'm 11 weeks post LRP , double nerve spare , 100% continent , no natural erections yet , been using a simple pump for 4 weeks to help recovery.
Yesterday was my 2nd ED clinic with 2 separate appointments. The first appointment was for a SOMAerect vacuum pump demonstration from the company rep . You seriously could have written this into a comedy. The office door opens and out walks a seriously stunning 30ish blonde in flowery leggings , crop-top , 4" heels , red lipstick and nails . Honestly ! She had a personality the size of a bus and was just lovely. It worked fine for me but I expect other men would turn and run having seen her. Within 10 minutes with me stood and her sat uncomfortably close and using the pump , I had an erection superior to pre-op , in no pain , and was told it would last for 30 mins. It was truly comical her persuading me she could get it harder. One of the weirdest days of my life. So out I walked with a prescription for the pump and a spare set of rings. I thoroughly recommend this device and a demo to anyone wanting to start recovery. Things were going fine .
I then had to wait a couple of hours to meet the male ED nurse assigned to me for a Caverject demo/appt.
This is NOT for the faint-hearted ok ! A needle the size of the tummy self-injections post-op , which has to be fully inserted into the side of your penis at the base , trying to avoid any small veins etc. I am not at all scared of needles or a bit of pain , but this did hurt and i'm not sure I could do it myself. He showed me 2 available systems and we used 15mg of the available 20mg in the syringe. Within 10 minutes I was 80% erect but not good enough for penetration. I suspect in the "right" circumstances with a partner and stimulation , he would have risen to the challenge . HOWEVER , unfortunately , my entire penis from tip to base was throbbing with pain. So much that I wouldn't be wanting intercourse to be honest. I was sad because I thought this would be the holy-grail ( I think Lyn told me it might not be ! ).
The nurse said as with everything not to give up first go. And I wont ! I have the pump , 4 Caverject ( I must NOT use more than 15mg until he says so ) , and my GP today has given me 4 SPEDRA tablets which are the latest Viagra.
So i've moved forward and wont need to see anyone for months with what i've been supplied. And im glad at that . I can just be sensible and try anything in time. The Caverject is definitely an "event" thing in my mind. No way would I use it for a spare hour in the evening. I'm going to stick to the pump daily to keep him fit , and use a Viagra or Spedra with the pump when we get some time . It has worked for me once.
I do hope this post is worthwhile for people on their new journey - its just honest and open
Best wishes Chris

If life gives you lemons , then make lemonade

User
Posted 08 Sep 2015 at 14:36

Thanks Chris, could you send the rep around to me. I'm c6 weeks ahead of you and now regressing!!!!

User
Posted 08 Sep 2015 at 15:30

Informative and helpful post Chris,

Well done for persevering. Worth mentioning to any other men reading this that what works for some may not work for others, and what works for others may not work for some.

No consistency it seems.

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 08 Sep 2015 at 15:32

Hey Johny

I am 43 and 9 weeks post op. I had Davinci Surgery with full nerve sparring.

I was given 5Mg cialis 2 weeks after surgery and although I did take a few I stopped because I didnt like the side effects (flushing, stuffy nose, seeing blue dots when I blink) and thought I was doing the right thing because I wasnt ready to engage in intercorse. However I realised soon after starting that it was not meant for intercorse but for reprogramming Mr Wiggles.

I've had quite a few lazy lobs but probably only about 70% at best, nothing that would work for penetration. My GP also gave me 16 20mg cialis and although I did take one, nothing happened, and Mr Wiggles didnt get his wriggle on even though there was a lot of persuading going on if you know what I mean lol, we just laughed about it.

Its been a few weeks since anything has happened on the lazy lob front but I am now ready to start again with the 5mg cialis and with the pump which Chris mentioned. To see if it will make any difference. God I miss being active.

I totally feel your pain my friend, I've had quite a few oppertunities recently to be active but the old chap has let me down, psychologically this does mess with your head but we also need to remain optomistic and realistic in that our surgery was only a few months ago and internal healing could take quite a few months, even though we all want it back now.

I am completely dry now and have been for many weeks, although I still wear a number 1 pad, I think its more of a comfort thing just knowing its there incase I have an accident, but I do need to take a risk and see if I can go without wearing anything.

I wish you all the best, and hopefully we will all get there and get our grooves on again...

Raiden

 

Edited by member 08 Sep 2015 at 15:36  | Reason: Not specified

User
Posted 08 Sep 2015 at 17:40

Chris I could just about imagine your face when she walked in.

Sounds like something out of a Carry On film (Think bouncy Barbara Windsor)

Raiden, nice to hear from you.

Good luck to both of you. I hope everything progresses well for you.

We can't control the winds - but we can adjust our sails
User
Posted 09 Sep 2015 at 11:32
Chris

Brilliant post and so informative for others.

Your description of the demonstration did make me smile! !

As I said on Trish's thread you guys should all help each other sharing info on what works.

All my best wishes

Xxx

Mo

User
Posted 14 Sep 2015 at 04:05
New to this forum, but have found some posts quite informative.

I was diagnosed in the summer of 2014, Gleason 4:3 and RLP in August that year, so its over a year now.

My prognosis is good, in so far as I was T2 organ contained, zero margin and a year on my PSA is undetectable. All good. I had nerve sparing surgery (50% I think, but as a result of a comment on here I shall seek clarification)

So, the reason for me coming on here.

Living with the side effects.....and the psychological impacts.

My continence is good, I dont wear pads of any description, just change underware when the odd accident happens (usually alcohol related)

However Ed is problematic.

I am on Cialis, 20mg, as required. Does not work at all with female, but has sigificantly impacted with self stimulation.

I am married and she is incredibly understanding and tolerant. As such I have been very interested to read the female perspective on here, this and other topics.

I have no issue discussing Ed, with friends, family (I have two grown sons) and other females. Plenty of dark humour, poetic justice was a comment that made me laugh.

So a year on and I am now referred to the Ed clinic, I have probably left that a little late.

But, that not withstanding, I have become quite depressed, the sort of "lets end this now" type of depression. Being a controlling type of person (narcissistic I suspect) this seems "SpockLike" entirely logical? At 63 and led a full life even more so.

It is this that I seek comment on, especially from the female perspective as leaving her behind is the main restraining factor.

I am hoping that treatment for Ed will lift the mood, which I am sure it will temporarily as I seek to take advantage, if it works. My sex life is active, apart from penetration, for clarity.

So, a long winded way if asking, but are my psychological impulses normal or am I up my own rear end in self analysis?

User
Posted 14 Sep 2015 at 09:11

Les Hi
Ive messaged you aswell to say hello . I think you will get a lot of support from members on this site . There are no end of kind understanding people a lot further on than us in their experiences . However generally they seem to be up-beat people who will ( and are ) doing anything to fight this disease and try to beat it. Im sure they have a level of depression but when it gets as low as you are saying it becomes serious . Im in the same boat as you , and am now looking at an even bigger fight . I didn't want treatment in the first place ( yes silly me ) , and now after treatment I wonder whether life is worth living and if I can face all the future treatment . I guess your comment about your family says it all . You do it for THEM . I have a 5 yr old boy . I couldn't NOT have the treatment done . You have left ED recovery a fairly long time but with an approach to the hospital clinic you are moving forward and it will give you something to work on. Being impotent does get us all down for sure . Yes you can still have lovely times but all men want penetration essentially , and I know most women miss it when it is gone , but it doesn't become all-consuming to them .
More support will be on its way ........
Chris

If life gives you lemons , then make lemonade

User
Posted 14 Sep 2015 at 10:07
Hi Les

I'm a wife, my husband is currently undergoing radiotherapy to be followed by brachytherapy. I think I speak for a lot of wives / partners when I say that although ED is an issue we're all very happy that treatment means that our other halves are going to be around for a lot longer than without treatment.

Chris, above, and I have corresponded quite a lot on this issue - I told him that I married for love not sex. You will get more input from others so I hope that the advice you will be given will help with lifting the depression.

Good luck at the ED clinic.

Maureen

"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne
User
Posted 14 Sep 2015 at 12:31
Maureen

Thank you.

I dont think however "marrying for love" is gender specific. We all do.

But whether one would marry into a sexless relationship, I doubt, whether male or female.

So if a relationship becomes sexless, does that end up in the same place?

Thats the female perspective I seek.

Thanks to everyone else and the private messages. Sadly, as a newcomer, forum rules disbar me from sending private responses.

My conclusion, to date, is that becoming depressed is fairly standard.

Therefore my response must be is what to about it.

Menadering through the balance of life on drug therapy is unappealing.

This does sound dreadfully selfish, I know.

User
Posted 14 Sep 2015 at 12:54

Hi Les
I didn't realise rules said you cant private message . The only reason I sent you that message is because its easier than baring ones soul on the internet publicly. I know EXACTLY how you feel and especially if no penetration for over a year . Im only 3 months . But I am bipolar 23 yrs and know depression better than I know my relatives , although I obviously don't have the answers or i'd be well !!
I feel every wife on the planet would tell their husband that sex doesn't matter and that love and life and togetherness are key , when faced with an illness such as this that would make you impotent. I guess the majority of women would mean it whole-heartedly , others would mean it and then over time resent the fact that sex wasn't the same , and of course you can then get into the realms of untrue partners etc . Im just saying it as I think it is . I was terrified at the possibility of my partner moving on , which was actually a very silly thought at the time , but its only 3 months . As men I think we have the ability to drive a woman away when having to deal with something such as this ( like a self-fulfilling prophecy ) . Its amazing that you are so in tune with your body and mind that you realise you aren't thinking straight anymore . Everyone here will tell you to book a 20 minute appt at your GP and discuss this with him/her. Its vital you look for help and if it comes in medicinal form then so be it . Some of the SSRI anti-depressants can work wonders . And moving on with the ED will help you too. When you are allowed to PMessage I would be happy to help
Chris

If life gives you lemons , then make lemonade

User
Posted 14 Sep 2015 at 12:56

Les, my husband also felt for a while that life was perhaps not worth living and that I would be better off without him. Over time, everything got back to normal and he knows that life is very definitely worth living. What kept him going in between times was the knowledge that his life insurer doesn't pay out for suicide, I would be left destitute and homeless and the whole family would be sad.

What you describe is in some ways common to diagnosed men but talk of ending it all is not. It is screwed thinking and needs specialist advice from your GP - don't try to muddle along on your own with these thoughts!!!!!

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

User
Posted 14 Sep 2015 at 13:23
I have just been granted authority to send private messages and have responded. Thank you.

Lyn, I am not convinced that choosing not to muddle through is "screwed"

Although I absolutely accept that it is very selfish.

My wife would not be destitute, impacted, yes but destitute no.

Thinking why I am on here asking this question, I think I am looking for the absolutist response my surgeon gave me in relation to the disease.

I find that easier to deal with.

But of course with mental health issues (if this is what it is, as opposed to a perfectly acceptable solution) things are not always black and white.

I am struggling and searching for an answer....thank you for tolerating me.

User
Posted 14 Sep 2015 at 13:35

We will tolerate anything Les - If they tolerated me !?! Just ask away and far more astute people than I will be along to talk and offer advice which is what you need . I'm soldiering along despite some very personal issues and feelings . It seems maybe the ED thing is what has led eventually to you getting this low . But there are loads of treatments out there and you have been slow on the uptake it seems . One or more of these could work for you in time and help turn your mood . But seriously ..... GP talk would be good

If life gives you lemons , then make lemonade

User
Posted 23 Sep 2015 at 22:44
Hello Les

My husband is in a similar position to you. RRP last December, 50% nerve sparing, and ed. he is also still fairly incontinent, and that doesn't help.

From a woman's point of view, most of us would rather have thirty years with no penetrative sex than ten years with it.

It's difficult. You have the advantage of being able to discuss it. My oh would rather bottle it all up and hope it goes away. Keep on keeping on.

Louise X

User
Posted 24 Sep 2015 at 02:29
Hi Louise

Many thanks for your comment.

I would encourage your OH to discuss it, in the end its a physical issue due to major surgery, nothing to be ashamed of, is it.

My first ED clinic yesterday and because of comments on here I asked a specific question on the degree of nerve sparing that had occured. There was, in fact, no notes at all referring to this by the surgeon so now I am unsure, but it does explain my physical "non reaction" if little occured.

The practitioner was very reassuring however and his confirmation of my story over the last year as not being unusual was comforting.

We discussed in great detail how "it" felt and the feelings of my wife. She has said the same as you BUT I dont believe its totally true.

The practitioner agreed with me over the lack of penetration and how that, in fact, makes her slightly insecure.

Anyway because I am able to "feel" Cialis he has asked me to use it as therapy not as an attempt to promote penetrative sex. So he has prescribed a vacuum pump to use daily along with 20mg of Cialis twice a week for eight weeks. We agreed that given its a year then if indeed there was nerve sparing then this will tease out the recovery.

You know the funniest thing? Which chemist to go to fulfill the prescription for the pump!! They did not have it in stock at the one I chose and when she asked me if it was urgent I nearly laughed.

Some light relief from the black dog of depression that seems to have engulfed me. It feels, as I share this on here, as if I am discussing a third person. Recently alcohol (I am a Real Ale fiend) consumption has increased to the point, I know, its becoming an issue as I am lying about it to her (and my sons who are both close to me). I want to stop but the early evening relief,the decent into The "Walter Mitty" land of self deception, is just too tempting.

So I do, every day.

Work is suffering and I know that my wife is sensing the detachment in me, a fact that totally undermines my reasoning to seek a remedy for the ED.

So the depression is self perpetuating and the decent accelerating.

Self destruction by a slow burn.

Its 2:20am, lets see what delights the morning brings. Perhaps my new vacuum pump will be ready for collection today. Oh what joy, the exquisite anticipation of standing in the shower and manually pumping a rather crude device on my flaccid penis.

But I am alive with a decent prognosis and my wife, women, tell me she/they would rather have me as this fractured person than not.

I fear however she refers to a memory, not the reality. A lot of which she is unaware of.

User
Posted 24 Sep 2015 at 07:57

Originally Posted by: Online Community Member
Maureen
Thank you.
I dont think however "marrying for love" is gender specific. We all do.
But whether one would marry into a sexless relationship, I doubt, whether male or female.


So if a relationship becomes sexless, does that end up in the same place?
Thats the female perspective I seek.


Thanks to everyone else and the private messages. Sadly, as a newcomer, forum rules disbar me from sending private responses.
My conclusion, to date, is that becoming depressed is fairly standard.
Therefore my response must be is what to about it.
Menadering through the balance of life on drug therapy is unappealing.


This does sound dreadfully selfish, I know.

Re the above quote and from this woman's perspective

It would very much depend on what the relationship was like before it became sexless.  

If it isn't strong, but sex is a big part of it, then yes I would imagine the loss of penetrative sex would make a major impact on that relationship.

If, however, your marriage was / is strong then for goodness sake listen to what your wife is saying to you.

Only you two know the depth of feeling for each other so it's no good me  making sweeping statements about what it's like for you because we only have our own experiences to go on.

Do I love my husband now that he is no longer the man I married? Of course I do

Do I regret that sex is no longer what it was, even given our advanced age? Of course I do

Would I throw away the memories of 45 years of marriage (and believe me it hasn't always been a bed of roses)? Of course I wouldn't

Yes I married for love, but that love is tempered over the years by what you share together and the memories you make.

Don't risk forcing that separation on yourselves by trying to get inside her head and read what YOU think she is really thinking. It doesn't work like that.

Trust her, believe in her, believe in yourself.

Leave the doubts behind, together with the extra pints. Not only are they not helpful  - too much and brewers droop will rear its head anyway!!

Depression following diagnosis and treatment is understandable, but you have life.

Are you selfish - probably -  but that's human too isn't it. We all want perfection whether that's in looks or marriage or work.

What's the alternative for you both. You will drive her away in any case if you continue to think like you are.

We might love our other halves but we are human too and the constant reassurance (that is disbelieved and not accepted) can wear us down.

Please trust her own judgement

Edited by member 24 Sep 2015 at 16:34  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 24 Sep 2015 at 08:04

Les,

If you start a thread about the issues you are faced and dealing with, it will be easier for anyone to see what you are asking about and help you? As it is, your issues are mixed in among someone else issues. This is not a criticism, but a suggestion that is intended to help you get better advice and assistance.

atb

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 24 Sep 2015 at 08:26
Johsan

"

Do I regret that sex is no longer what it was, even given our advanced age? Of course I do"

Exactly

I get everything you say, but this comment stood out.

Does that feeling remain as just "regret" or does it progress to something else, do you think?

User
Posted 24 Sep 2015 at 11:23

Hi,

 

I'm just over 4 weeks post-op (RRP, only partially nerve-sparing) and whilst I know that is pretty recent and also that this is not a short journey, that doesn't necessarily make it easy (or even much easier).  Oddly, my libido has seemed to increase since I was diagnosed, but whilst I never suffered from ED before that point, I found that I pre-op I just couldn't get a satisfactory erection (I put it down to anxiety about the forthcoming op), and as for post-op, well there's been the odd tingle but otherwise absolutely zilch thus far.  I've not yet been referred to the ED clinic but I've asked the nurse co-ordinating my treatment to make sure I get passed across.

 

SWMBO* is being very loving and couldn't really be more supportive, but - if you'll pardon the unfortunate pun - it is hard.  As blokes, our sexuality and sexual persona is so closely bound up with our sense of who we are that to suddenly find that there's no response from below when called can be difficult to deal with.  I love her now as much as I ever have (we've just had our Pearl anni) but the fact that I can't express that physically in the same way is surprisingly upsetting.  The surgeon warned us very clearly that spontaneous erections would be very unlikely post-op and whilst you think 'well, at least I'll hopefully not have cancer any more' the reality is still a blow.

 

Les - You do sound very 'down'; please don't be afraid to seek help.  Ask for it from the professionals: some years ago when my Dad died of stomach cancer I found it incredibly hard to deal with, and I sought counselling.  It didn't 'make it all better' but having someone outside of my life I could open my heart to gave me the space to work through my grief and find a way of coping with it.  There are various support routes open via this site, or you could ask your GP to refer you to a counsellor.  There are specialist ones for us cancer-sufferers, whether you go alone or together.  If you can talk to us anonymous strangers on here about how you feel then you can certainly talk to a professional.  You're not going through this completely alone, you know.  I've asked my co-ordinating nurse to refer me for that help, as it happens.

 

I'd echo many of the responses on here:  try to trust your wife and allow her the space to care for you.  The fact that you can't yet get an erection is not the end of the world, and there is more to love than (as Alan Bennett and John Fortune put it) 'putting it in and jiggling it about a bit'.  I'd also try to lay off the ale as best you can - it will do you no physical good, won't help the incontinence, and will make your ED problems worse.  I speak as a fellow ale-lover who has several dozen assorted bottles in the garage that SWMBO won't let me touch yet!

 

To all the other respondents to this thread - many thanks for sharing your experiences: for those of us just embarking on the journey it is very valuable to hear how others fare.

 

*For the uninitiated, SWMBO = She Who Must Be Obeyed.  From the Rider Haggard adventure novel 'She', and was used by Rumpole as shorthand for his wife - the dreaded Hilda.

Edited by member 24 Sep 2015 at 11:31  | Reason: Not specified

User
Posted 24 Sep 2015 at 16:55

Originally Posted by: Online Community Member
Johsan
"
Do I regret that sex is no longer what it was, even given our advanced age? Of course I do"

Exactly
I get everything you say, but this comment stood out.
Does that feeling remain as just "regret" or does it progress to something else, do you think?

 

Les, perhaps "regret" was not the right word. Possibly "sad" would have been better

 

The same sort of sadness you feel when you realise your children have changed and are growing up and don't need you so much. That doesn't go away but it does alter as their lives alter and they move on

It's like the loss a lot of women feel at the menopause.

You don't have that worry anymore about  getting pregnant but it is no longer your choice but something you now have to live with.

If you are still loving towards each other and can experience sex in a different form then you really are very lucky.

Yes penetrative sex is lovely, but so is life and I'd rather have my other half - miserable as he sometimes is bless him - than be mourning him (and if he's dead there isn't any penetrative sex anyway is there!)

I'm not being flippant about all this, really I'm not. I do understand that for  a man this is a major deal, and it may be for some women too, but at least give the wife the benefit of your doubts and believe her.

Coincidently, I had a conversation about sex with my daughter yesterday.

Four years ago she was treated for aggressive colon cancer.

That treatment in effect "cooked" her personal bits and makes it impossible for any kind of "normal" sex.  She is only 42 now so this was when she was in her late 30s.

Have they given up on each other. Not likely. She told me there's more than one way to skin a cat and she would rather be alive with "cooked" bits, enjoying what she has and what she does with that life, than mournfully remembered.

My son in law loves her deeply and has never complained that HIS life is now different too.

If you love wholeheartedly you'll put up with anything, especially when it isn't the other person's fault.

Sorry, rambling again !!

We can't control the winds - but we can adjust our sails
User
Posted 24 Sep 2015 at 16:59

Chromedome, good luck with your recovery
Yes it is very early days for you.
Perhaps your body just needs to catch up with your mind!

Did you have any nerve sparing I wonder?

We can't control the winds - but we can adjust our sails
User
Posted 25 Sep 2015 at 04:49
Originally Posted by: Online Community Member
Originally Posted by: Online Community Member
Johsan

"

Do I regret that sex is no longer what it was, even given our advanced age? Of course I do"

Exactly

I get everything you say, but this comment stood out.

Does that feeling remain as just "regret" or does it progress to something else, do you think?

Les, perhaps "regret" was not the right word. Possibly "sad" would have been better

The same sort of sadness you feel when you realise your children have changed and are growing up and don't need you so much. That doesn't go away but it does alter as their lives alter and they move on

It's like the loss a lot of women feel at the menopause.

You don't have that worry anymore about getting pregnant but it is no longer your choice but something you now have to live with.

If you are still loving towards each other and can experience sex in a different form then you really are very lucky.

Yes penetrative sex is lovely, but so is life and I'd rather have my other half - miserable as he sometimes is bless him - than be mourning him (and if he's dead there isn't any penetrative sex anyway is there!)

I'm not being flippant about all this, really I'm not. I do understand that for a man this is a major deal,and it may be for some women too, but at least give the wife the benefit of your doubts and believe her.

Coincidently, I had a conversation about sex with my daughter yesterday.

Four years ago she was treated for aggressive colon cancer.

That treatment in effect "cooked" her personal bits and makes it impossible for any kind of "normal" sex. She is only 42 now so this was when she was in her late 30s.

Have they given up on each other. Not likely. She told me there's more than one way to skin a cat and she would rather be alive with "cooked" bits, enjoying what she has and what she does with that life, than mournfully remembered.

My son in law loves her deeply and has never complained that HIS life is now different too.

If you love wholeheartedly you'll put up with anything, especially when it isn't the other person's fault.

Sorry, rambling again !!

Yes, I get this.

It has dawned on me that I may have two illneses. One physical in the form of PCa which I will beat albeit with side effects, and an underlying mental health issue as yet not formally diagnosed let alone treated. Thank you for your responses, these have made me realise that I need to do something about it before this deteriorates further. (I havent admitted to everything as you might understand)

Thank you

User
Posted 29 Sep 2015 at 21:56

Hi everyone
Many of you wont be interested , but as you know there are also many who are chasing erectile function post-treatment at the moment.
The professional pump and rings continue to serve well and definitely practice makes perfect. Once you have a system it becomes quite easy. The downside for me is reduction of normal sensitivity and the fact that you should only have 30 mins max, and that it hinders the natural progression of lovemaking.
So the other day I risked my first self-administration of Caverject. Nail-biting ? Yes. Painful ? Fairly. Although being advised in the clinic to use 15mg for now I decided to use 17.5mg based on those results that day. I achieved an 85% erection which lasted nearly 2 hrs. It wasn't as painful as before in a throbbing way. I think I should be fine to use the whole 20 mg next time. Not as good as the pump but normal sensitivity and could be administered " beforehand " which is a bonus. I'm not enjoying pill use at all and gaining nothing from it whatsoever. I find time nearly every day to get a quick erection with the pump to keep health down there.
I pray for natural recovery but am still very early at 15 weeks and doing well and not expecting anything more at all at present. I think tablets pumps and injections all have their own place and moments. Feel free to ask.
Best wishes to you all
Chris

Edited by member 29 Sep 2015 at 22:04  | Reason: Not specified

If life gives you lemons , then make lemonade

User
Posted 09 Oct 2015 at 11:03

Hi, everyone. I find it fascinating that we have so many different takes on similar problems, both in terms of how we have found different treatments but also the advice and support we get. I'm 20 months on from a radical prostatectomy with 50% nerve sparing. I've used the pump but even with two rings loose hardness quite quickly. The ED nurse told me that sildenafil would be of no benefit to me but I take daily 5 mg cialis and she has suggested trying four tabs at a time to boost response. Otherwise it may have some general benefit to blood supply but no effect on ED. She also said from her experience that few people found Muse worked and didn't like using the pellets, but she gave me the same formulation in a cream which provided a warm glow but nothing else! So eventually I tried Caverject which works well. Using it is challenging but the injecting is not really painful, although it can be uncomfortable afterwards. Aside from using this I have no natural response. The big issue now is getting Caverject. My pharmacy cannot get any at the moment from its suppliers. s mothers are also using it I wonder if they are experiencing the same issue and if not, where their supply comes from?

User
Posted 09 Oct 2015 at 11:56

Hi There
Im using Caverject and was initially given 4 , but my pharmacist also stated its damn hard to get hold of. It works for me too but not 100 % . Beggars cant be choosers I suppose . Pump still works well . You need very tight rings I find

If life gives you lemons , then make lemonade

User
Posted 09 Oct 2015 at 21:36

Originally Posted by: Online Community Member

Hi, everyone. I find it fascinating that we have so many different takes on similar problems, both in terms of how we have found different treatments but also the advice and support we get. I'm 20 months on from a radical prostatectomy with 50% nerve sparing. I've used the pump but even with two rings loose hardness quite quickly. The ED nurse told me that sildenafil would be of no benefit to me but I take daily 5 mg cialis and she has suggested trying four tabs at a time to boost response. Otherwise it may have some general benefit to blood supply but no effect on ED. She also said from her experience that few people found Muse worked and didn't like using the pellets, but she gave me the same formulation in a cream which provided a warm glow but nothing else!  s mothers are also using it I wonder if they are experiencing the same issue and if not, where their supply comes from?

Hi wightman,

What many medical professionals do not get is that not every tablet, pill or capsule work,s for everyone in the same way.   So, bluntly, your ED nurse's experience is not worth "diddley squat" to you if it closes HER mind to playing around and allowing you to experiment.

If you read through all the profiles here (you need to get out more, ;-)) you will see that many of us play about with "Meds" and treatment to see what works for us as individuals, and that may mean doing things differently.   

If I were you I would consider putting any request for medication in writing stating that "failure to give me the medication at this time may well hinder my best hopes of recovery."  Present a business case and you may get what you need?

atb

dave

 

 

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 10 Oct 2015 at 02:07

It is a national supply issue to do with the company failing to get their licensing docs sorted last year. In many areas, the dual chamber Caverject has not been available for months now - there are other threads on this forum about alternatives such as the single chamber injections.

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

User
Posted 10 Oct 2015 at 02:09

Chris, if it lasted two hours I would be very hesitant to increase the dosage yet - the last thing you need is a trip to A&E for blood-letting. Do you have a letter from the ED practitioner in case you do have to go to casualty?

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

User
Posted 10 Oct 2015 at 08:36

I don't have the funky dual-chamber modern pen , I have the mix it up yourself system " Playing proper Dr's and Nurses ". I read your story with interest Lyn a few times . Based on 65% for hour and half at 15mg , then 80% at 17.5mg for just over hour and half , he said I should technically be safe to try 20 mg . I mean whats all the palaver about to only half do the job ;--))
But im totally getting your point . NO I don't have a letter , and NO I don't have the anti-dote . He said if he gave that out , then everyone would be whacking maximum dose in . Although sex is possible with pump its just very disappointing with a very weak base to the erection etc . I would be chuffed if 20mg was perfect . He said to be wary if erection lasts 3 hours , getting in the car at 4 hours , and must be treated within 6 . If I got there and they wouldn't treat me , i'd have it out pants down and scream up and down A&E till they fixed me .

If life gives you lemons , then make lemonade

User
Posted 10 Oct 2015 at 11:03

Aay, you should be more precise in your posts! You first said that 17.5mg produced an 85% for nearly two hours, now it is 80% for about an hour and a half which is rather different and makes sense of the specialist's advice.

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

 
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