Psychological effects

User

Posted 23 Aug 2015 at 22:22

This is a difficult one for a wife. My OH is nearly nine months on. Still on at least one pad a day and not happy about it. Still very little reaction on the ED front.

I have gone along the route of 'I don't care as long as you're alive'. But actually, I do care. I miss our love life, which was pretty good. Within his 'traditional man' limits, he's tried other things. He's had some orgasms. I've had some. But we both miss penetration. He hates the VED, and after one failure hasn't tried again. He's even stopped using it for exercise, not that he particularly did this much anyway.

But I'm concerned now that the psychological pain is causing problems. The last few times we have tried, in spite of no pressure from me, there has been nothing close to an erection. I think it's a vicious circle. He's thinking about it too much.

And I'm a little p****d off if I'm honest. Not because he has ED, but because he's not prepared to try and overcome it. If it still doesn't happen, then at least we have tried. He is still taking daily Cialis, but won't consider anything else (injections etc). Am I being unreasonable? Should I tell him I do care about it, or will this make him feel worse? Please give me a male perspective on this.

Thanks,

Louise

User

Posted 25 Aug 2015 at 00:24

I don't know - I'm not a bloke. Perhaps he needs to be able to discuss with a man that has been there - John was fortunate that he had my dad (who was using caverject) and his dad to talk to, plus a couple of friends with ED who were using the pump. In hindsight, the best thing I ever did was perhaps to drag him along (very reluctantly the first time) to the get-together in Leicester and a smaller gathering in Skegness - I think that the open conversations took away some of the shame and sense of hopelessness for him. But in the end, it was the fact that our ED nurse and uro were both brilliant and didn't allow him to shy away from saying how it was going and how he felt about it all, conversations that he and I couldn't have without tears and anger and frustration creeping in :-(

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

User

Posted 10 Dec 2015 at 08:49

Hi Louise

If I may offer it, a little more support from me to echo the comments made by others and to offer some of my experiences this week.

I am twelve months on from my operation, I too should be a one pad a day man, but really only to catch the inadvertent drips after a cough or a sneeze or bending. I have to say that I really dislike the pads however and choose not to wear them and just make sure that I'm aware of where the nearest loo is, and am mindful of how much I drink. I am taking a drug called Solifenacin (5mg) twice a day for just about a week now, and it seems quite promising as the leaks do seem to have slowed in the last day or two and I also feel as though I have finally got some control over how often I need to use the loo. My Uro nurse seems to think the problem I was having was more of an over active bladder rather than a weak pelvic floor. I spend a reasonable amount of time exercising in one form or another so I always felt that my issue wasn't with the pf at all.

With regards to the ED, I too have been getting semi erections that only recently were naturally able to provide any penetration, however they really only last for seconds and are done essentially not allowing for successful penetrative sex. I too have used cialis, viagra and levitra but none of those drugs have ever helped to gain, or supported any natural erections. I had an appointment on Monday with the ED nurse at my local hospital and he has shown me how to use the injection in the very way that Lyn has described. I would have taken my wife but she would have passed out before we would have gotten through the door, so we did decided that I would go by myself. I was allowed to do the injection myself under supervision from the ED nurse so hopefully I'll remember what to do when I pick up my prescription. Unfortunately I didn't see any success with the first try, but to be fair I only injected the smallest 2.5mg dose. When I try next I shall go up to 5mg and see what happens.

We have been using the pump that I bought some time ago, and this does produce effective erections, but if I am being completely honest I really don't like to use it, I find it very uncomfortable and it doesn't do the job for me i terms of orgasms, although my wife tells me she is more than happy with the benefits that it offers her if you get my drift.

Do please let your other half know that all is not lost, that resigning oneself to never having what I would call proper and enjoyable sex again with the one I love very much as over, is defiantly not the case. I am 52 and not prepared to give up on all that I and my wife had over this little hiccup. It was bad enough being told that I had PC and having to have the operation and the baggage that went with it, I am determined not to let that wreck the rest of our lives together.

I do wish you both well and hope that todays appointment brings you renewed vigour to overcome some of life's challenges.

Trevor

User

Posted 10 Dec 2015 at 22:26

Originally Posted by: Online Community Member

So here's some questions for those who know:

Does the fact that it's worked once guarantee that it will work in future? No - it can take some practice to inject in just the right place at just the right angle, plus there could occasionally be a bad batch that have perhaps been stored incorrectly. In our case, they worked about half the time.

Does the body become accustomed to the same dose and have to be upped to get the same reaction in the future, or Do you just need to find your dose and stick to it? No not usually - my dad has been using the same dose for 14 years

If he had no side effects this time does it follow that he won't have any in the future? Not sure what side effects you are thinking of?

What is the prescription allowance? I have a bit of time to make up... Under NICE guidelines, you are entitled to 4 injections per month. However, some GPs and ED nurses are a little more generous than they are supposed to be, particularly when the man is young

I think I read there was some trouble getting hold of them- is this still the case? From what you say about the purpose of the appointment next Monday, it sounds like she is going to prescribe the separate chamber version. It is the other version that has had supply problems. If you get the chance though, could you ask her if she knows whether those problems have been resolved?

We have opened a bottle of champagne tonight. I hope it's not premature!

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

User

Posted 24 Aug 2015 at 22:09

Louise

because yours is a new post it has dropped down below the radar of many. A gremlin I really dislike in this new forum. Mainly because those who really need some support often do not get it from those that can help most.

In your case this is most definitely not me although I 100% get where you are coming from. I think you are right this really needs a man's perspective. Hopefully someone will post for you soon.

I truly know how difficult this must be for you. My post should at least bump you back up the recent conversations view.

Best wishes

User

Posted 24 Aug 2015 at 22:32

Hi Louise,

I did read your profile but I struggle with blocks of text.

A couple of points, HE and YOU are at very early stages of "your" recovery at this time. Have you considered seeking outside assistance, from a counsellor for example? Counsellors are not just for bereavement or relationship getting togetherness, they can assist with communication issues as well.

Did your OH have nerve sparing surgery do you know? One or both sides? If you and he do not know, find out.

Your use of the phrase "traditional man limits" may or may not speak volumes, but does make me wonder, what are these TML of which you speak?

If you do not to feel comfortable laying the facts out on the forum, you can, if you choose to do so, PM me.? A total stranger, but a male, who has been where he currently is, and actually 2 years and 4 months down the line doing very very well thank you. I am one of those more fortunate, and grateful and very appreciative.

The single most influential factor in yours and his favour is that he has you in his corner and rooting for him, and you. Going it alone is a big ask. Please keep at it, he needs to be exercising his bits as often as he can, whenever he can. The more you get involved the greater part you will play in that recovery. Does he have access to viagra, a pump? Without a prescribed pump there are still ways to get suction on his bits.

Above all don't you give up. And I hope he does not?

atb

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 24 Aug 2015 at 23:37

CB, he had partial nerve sparing but ED nurse said he only had a 10% chance of getting erections without assistance. He has a pump but doesn't use it. A while back, Louise reported that he was getting 50% erections so presumably it has got worse rather than better which suggests he is pretty down in the dumps or has given up?

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

User

Posted 25 Aug 2015 at 13:51

Male Perspective -

I am only 4 months post-op RRP, so I suppose things are fresh in my mind!

It is a given, as you have mentioned that controlling / curing the cancer is the priority, and on that issue I currently have no reason to be depressed.

Once diagnosed, I was depressed about the prospect of becoming a "pee-soaked" smelly old man (I'm now 57). I was also depressed about a potentially considerably lower quality of sex life!

I told my wife (pre-op) that I was happy for her to take a lover if she missed what I was potential unable to give her, so long as she was discreet about it i.e. I didn't want to know about it, I just wanted us to stay together and for her to be happy. I have no regrets about that conversation that we had, her response helped me!

Post-op / catheter removal I was fortunate to be completely dry within a few days. One major level of potential depression lifted.

Re ED (post-op) I had one set of nerves spared and given a 50/50 chance of achieving an erection. I have been given a pump which I use daily and 20mg of Cialis weekly, which I cut in half and take twice a week. I deliberately don't tell my wife when i take the Cialis which enables us to be intimate when we both want rather than working to a drug timetable. I haven't had an erection or orgasm yet but I'm optimistic that I will in due course!

As you can see from all of my comments, "depression" is a key word. I'm not a professional or expert, but it seems to me that your husband has a lot to deal with and that will probably include worrying about the impact all this has had on you. It is possible that he could be very depressed and needs help from another source.

I really hope that you are both able to pull through this together!

Pablito

User

Posted 25 Aug 2015 at 21:30

Hi Louise,

Does he, would he read this thread or listen while you read it to him?

Originally Posted by: Online Community Member

Thanks for your replies.

He has never been one to talk about how he feels. No soppy love poetry for me. And this suited me fine, I'm not a soppy romantic either.
It's hard to get him to sit down and talk. He'll listen but doesn't say much. I think, ridiculously, he's almost ashamed of the problems. And it's definitely a vicious circle thing.

I can understand how that circle can develop, and be hard to break out of. If he wants to, it can be done.

With regard to the medication, he is on cialis 5mg. We do have some sildenafil which he was originally prescribed. I'm sure I've asked this before, but is he best to stay on the cialis, or should he move onto the sildenafil at this stage? I think taking a tablet for an event is something he wouldn't do.

Has he said as much? Is he doing anything to help his recovery? I see that you say he used the VED once and has stopped? Bluntly, do you think he has he given up what with the leaking and that nurse sticking her oar in? He could use the 50mg Sildenafil/Viagra when practicing with the pump, with additional visual stimulation if necessary? The 5mg Cialis is a daily aid to encourage circulation around the body and the wound site. It does not always work, I have mixed and matched the meds when experimenting. Early days with little or no result, but over 2 years on and still improving it is all going a lot better, and could be for him possibly?

Sadly, our ED nurse is not as wonderful as yours Lyn. My OH rarely takes a dislike to anyone, but she really upset him on his first visit, and he hasn't forgotten it. Last time we went to see her, on the way home he said the first meeting he had with her was the worst moment of his life. She was a little brutal. She keeps telling him that before the 12 month mark is where the improvement will happen. It doesn't get much better after this. I know from here that's not true, but it's another thing that piles pressure on.

It is SO FAR from true, even though it was said by someone in a nurses uniform in a hospital, and they should be spoken to about this, but more importantly he needs to know how wrong she was. If only he could speak to someone who could put him straight, at least with regard to that aspect of his potential recovery? Have you and he seen your GP for added support? I am so saddened to read of your story and feel helpless to make it better.

dave

Edited by member 25 Aug 2015 at 21:34 | Reason: Not specified

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 26 Aug 2015 at 13:58

Sandra,

Yes he did. I told him there was a letter for him on the table and I was off to feed cows. He asked me if I was resigning my post as farmer's wife!

User

Posted 09 Dec 2015 at 23:43

Louise, if there is any way of getting into the room with him, do it. I hope that the ED nurse will encourage you to be together for this appointment. What usually happens is that the nurse talks through exactly how to prepare the injection and expel air from the end of the needle and will then inject your OH to show him where to put it and how it feels. With a bit of luck, it will work immediately and may last long enough for you to get home and use it :-o

If it doesn't work, the ED nurse may still give you a prescription with instructions to try a higher dose at home (with a few days break first). The thing is, there is quite a lot to remember and OH may be so anxious about the fact someone is going to stick a needle in his old todger that he doesn't really take in all the practical stuff so you would be an invaluable extra pair of ears.

I have heard on here of men who got the instructions and prescription but weren't actually injected at the appointment. It seems to me to be a great shame as they tend to be the men who struggle to get the technique right.

You are right to be cautious - the injections don't work for everyone so if he is expecting this to be a panacea then his expectations need to be managed. It sounds like he is caught in that terrible cycle - he is so frightened of failing, he has already stopped doing the things that are most likely to help. I remember how that feels and could scream with frustration for you; have you ever given him my 'one wife's story' thread to read?

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

User

Posted 10 Dec 2015 at 08:00

Hi Louise
We've talked a bit before !! I wish you luck today I really do. I echo Lyn's thought that you really SHOULD go in the room aswell. If you get the old-fashioned injection like I can still only get , it is actually quite a complicated procedure which will be easy to struggle with first time on your own at home. My wife and I sat on the bed together and did it although she wouldn't wear the nurse outfit I'd bought for her. I'm sure you've read my experiences on Jonnys post. I've had 4 goes ( fifth this weekend then ED nurse Monday) , and only managed one erection capable of penetration. It was still not solid. Now it doesn't seem to be working at all. I can only say please try to keep going with the pump. It works a treat for us and allows penetrative sex no problem although it doesn't quite feel the same tbh. I've began to realise a lot of men have problems with the pump which is down to foreskin ( which I don't have ). Sadly the injection hasn't been my panacea which has caused me some distress. I hope it is for you two x

Lyn , may I ask if Alprostadil only works if a person has had nerve sparing ?
May I also confirm that unlike Cialis etc , sexual desire/stimulation is not necessary for Alprostadil to work ?

Many thanks
Chris

User

Posted 10 Dec 2015 at 08:35

Hi Louise

Good luck today. Definitely you should both go. This is a shared difficulty and 2 sets of ears are more than twice as good as one set.

Hope you get all you both want out of today.

Paul

Stay Calm And Carry On.

User

Posted 10 Dec 2015 at 20:40

Well, a bit of positive news at last!

We went for our appointment this afternoon. I went in with him to listen to the instructions, but went out for the injection bit. I know this is what the OH wanted.

Anyway, the nurse injected 5ml, and we hadnt even got out of the hospital before there was trouser action. We had a 45 minute journey home in the rush hour, by which time the OH had a big grin on his face. We had a con flab and decided that it was almost there- probably not quite, but not far off. He wasn't quite brave enough to try, and I didn't force it.

It went down on its own accord slowly after around 40 minutes, back to normal at about 70 minutes.

We go back on Monday, when the nurse teaches him to mix the injection and supervises him injecting himself, and adjusts the dose. She won't give us a prescription until she is happy we have the right dose. But she said that she always errs on the side of caution so the results were unexpected and welcome.

So here's some questions for those who know:

Does the fact that it's worked once guarantee that it will work in future?

Does the body become accustomed to the same dose and have to be upped to get the same reaction in the future, or Do you just need to find your dose and stick to it?

If he had no side effects this time does it follow that he won't have any in the future?

What is the prescription allowance? I have a bit of time to make up...

I think I read there was some trouble getting hold of them- is this still the case?

We have opened a bottle of champagne tonight. I hope it's not premature!

Show Most Thanked Posts

User

Posted 24 Aug 2015 at 22:09

Louise

In your case this is most definitely not me although I 100% get where you are coming from. I think you are right this really needs a man's perspective. Hopefully someone will post for you soon.

I truly know how difficult this must be for you. My post should at least bump you back up the recent conversations view.

Best wishes

User

Posted 24 Aug 2015 at 22:32

Hi Louise,

I did read your profile but I struggle with blocks of text.

Did your OH have nerve sparing surgery do you know? One or both sides? If you and he do not know, find out.

Your use of the phrase "traditional man limits" may or may not speak volumes, but does make me wonder, what are these TML of which you speak?

Above all don't you give up. And I hope he does not?

atb

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 24 Aug 2015 at 23:37

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

User

Posted 24 Aug 2015 at 23:41

Ah,

thanks Lyn. In that case I doubt that anyone on a forum will be able to help them. But, WTF, it will not stop us trying.

The potential tragedy is that, quite probably, his situation may well be retrievable, but only if he does all he can to help himself.

If only he/she/they could engage with someone? A profesional, or a fellow sufferer who has been there?

What else to do or offer?

atb

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 25 Aug 2015 at 00:24

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

User

Posted 25 Aug 2015 at 00:52

16 months on and I get erections of sorts in the shower with my OH without any aids. We have not had penetrative sex since the night before I went in for my op. Dad's condition over the last month has meant I have forgotten about myself but I am still hoping by next April that we shall get more intimate. Not that it would bother my OH too much.

I have to say there are so many good things in my life that although sex is important, being able to live and have so much to look forward to is more important. I have never let ED get me down, and seeing how PCa has got to my dad, I feel lucky that I was diagnosed and treated in good time.

However, we are all different - I hope, Louise - you find a solution to your difficulties.

Paul

Stay Calm And Carry On.

User

Posted 25 Aug 2015 at 07:57

Louise, I know you are after male perspectives and obviously I can't help with that one.

I see from your profile that he has had incontinence problems which are improving. I know that for a lot of men incontinence alone can be a turn off so that can't have helped.

In your profile you say that 50mg of Cialis has been changed for daily 5mg as an aid to keep the blood flowing.
If he doesn't (won't) use the pump is he just relying on the daily 5mg and stimulation from you to get an erection?

Has he tried Viagra (Sildenafil) for an event. Take it one hour or so beforehand and carry on from there. Mine was reluctant and decided that at our ages we couldn't expect to continue that side of our lives.

We have had success with Sildenafil and he now expects it to work and it does. We do, on occasion, have pretty good success without it.
Sildenafil should not be taken at the same time as Cialis though.

Should you tell him how you feel?

Only you know your man, so only you can truly know how he feels about discussing it.

If you have done what a lot of us women do, and reassured him really well that you would rather have him alive than a sex life he may well think he doesn't need to do anything else.
You've assured him you love him no matter what eh?

What you are saying though is slightly different now isn't it. It's the fact that he isn't prepared to try if it ends in failure and in his mind it will end in failure because it already has. Vicious circle.

Do you talk at all. Is your relationship such that you could ask him to sit down and discuss with him how you truly feel about it all or is the head so firmly in the sand that he wouldn't be able to hear you.

I'm sure I've suggested in the past (or it might have been to somebody else so forgive me if I'm wrong) that you write down how you feel.
He can read a letter without you standing there trying to tell him how frustrated you are with his attitude.

If it were me, in your shoes, then yes, I'd tell him somehow just what was causing me distress.
Not the lack of penetrative sex but the sheer frustration caused by his lack of concern that he won't pursue anything that might help.
He's given up and it's early for him to give up.

If you don't tell him, how can he know?

We can't control the winds - but we can adjust our sails

User

Posted 25 Aug 2015 at 08:30

Thanks for your replies.

He has never been one to talk about how he feels. No soppy love poetry for me. And this suited me fine, I'm not a soppy romantic either.

It's hard to get him to sit down and talk. He'll listen but doesn't say much. I think, ridiculously, he's almost ashamed of the problems. And it's definitely a vicious circle thing.

User

Posted 25 Aug 2015 at 13:51

Male Perspective -

I am only 4 months post-op RRP, so I suppose things are fresh in my mind!

It is a given, as you have mentioned that controlling / curing the cancer is the priority, and on that issue I currently have no reason to be depressed.

Once diagnosed, I was depressed about the prospect of becoming a "pee-soaked" smelly old man (I'm now 57). I was also depressed about a potentially considerably lower quality of sex life!

Post-op / catheter removal I was fortunate to be completely dry within a few days. One major level of potential depression lifted.

I really hope that you are both able to pull through this together!

Pablito

User

Posted 25 Aug 2015 at 19:03

Thanks pablito

I think you are right to some extent. He's not the depressed type, more your typical Brit- a bit 'fed up' possibly! But I think the long haul to continence is getting him down.

We will certainly get through it together. Any other option isn't being considered.

Thanks for your perspective x

User

Posted 25 Aug 2015 at 19:08

Wishing you both all the very best!

Pablito :-))

User

Posted 25 Aug 2015 at 21:30

Hi Louise,

Does he, would he read this thread or listen while you read it to him?

Originally Posted by: Online Community Member

Thanks for your replies.

I can understand how that circle can develop, and be hard to break out of. If he wants to, it can be done.

dave

Edited by member 25 Aug 2015 at 21:34 | Reason: Not specified

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 26 Aug 2015 at 10:05

Thanks cb99.

Having spoken to someone off the forum on the phone yesterday, I decided on a plan of action.

I finally got round to writing the letter suggested by Sandra a while back, and when he got home I took the kids off in the Landy to feed the furthest away cows we have. When I came back, he had been a hive of industry, both the VED and the stimulator machine had been going, and he agreed that he would spend a couple of weeks exercising with the ved..

He has also agreed to see a private urologist with regard to clearing up the continence and ED. we don't have private health insurance, so it might not be an ongoing thing, but for an initial consultation of £180, maybe he can get some better information. (and from a man- I know he's uncomfortable with a female nurse)

So we'll see how it goes.

The ED nurse is not good. I called her up yesterday to say that the stimulation machine appears to be making his incontinence worse. Her reply? Well it will do for a while. You're making the pelvic floor work harder so it's tired. And she couldn't have told us this at the time? I hope the private consultant will be a bit more gentle. In any event, I'm grateful to the person I spoke to yesterday for suggesting it. You know who you are xx

Louise

User

Posted 26 Aug 2015 at 10:31

Excellent result for you all.

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 26 Aug 2015 at 12:59

Well done Louise.

Did he read your letter while you were out with the children then?

Glad it's movement and activity in the right direction anyway.

We can't control the winds - but we can adjust our sails

User

Posted 26 Aug 2015 at 13:58

Sandra,

Yes he did. I told him there was a letter for him on the table and I was off to feed cows. He asked me if I was resigning my post as farmer's wife!

User

Posted 26 Aug 2015 at 15:37

Originally Posted by: Online Community Member

Sandra,

Yes he did. I told him there was a letter for him on the table and I was off to feed cows. He asked me if I was resigning my post as farmer's wife!
L

I wonder whether - even subconsciously perhaps - the thought that you would up sticks and leave has been there.

He might have seen himself as finished as a man and husband and dreading the thought that one day he would receive a "Dear John" type letter. How little our men know us eh! and if they don't explain themselves how are we supposed to know.

All very well being the strong silent type but not much good to us "little women" !!

Still, if the letter helped do the trick then a little bit of anxiety for him won't have hurt.

It will work out alright, I'm sure it will. It just needs patience and adjustments and a bit of a lower expectation on his part.

One of these days you'll hopefully both be surprised by how much recovery he's made. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

I really hope so anyway.

Edited by member 26 Aug 2015 at 17:29 | Reason: Not specified

We can't control the winds - but we can adjust our sails

User

Posted 27 Aug 2015 at 10:21

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3784970/

Hi Louise,

I found the above link, which may be of use to you both? Have a read and maybe pass the link or the information on recovery timescale detail on to your OH.

One passage states: "Nerve damage occurs due to stretching, cutting, or thermal injury during surgery.3 This neuropraxia has profound effects on erectile function. Although nerve regeneration occurs postoperatively, these nerves are slow to recover and can take up to 3 years to return to baseline function,4 which can result in either an absence or decrease in erectile function."

HTH

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 27 Aug 2015 at 13:25

Thank you Dave, that's very useful. Maybe I'll pass it on to our ED nurse as well...

User

Posted 09 Dec 2015 at 21:29

Twelve months ago, the OH was sitting on the sofa in agony, sleeping most of the time away, catheter still in. Tonight, one of those three things holds true!

Help please. After 12 months, the incontinence is slowly improving. He's on one pad a day most days. We went to see the ed nurse last week, and she gave him a bollocking for not doing his pfes regularly enough, for doing too much physical stuff, and not using the ved often enough.

It's just over 12 months since we've had penetrative sex. He gets semi erections, but not enough for penetration. He's still taking daily cialis. He hates the ved, and since one disastrous attempt has not wanted to try it again. I don't want to force the issue. However, I have talked him into having a go with the injections, and the appointment is tomorrow.

Please tell me what he should expect. I am going to go with him to the hospital, but not into the actual room. I'm frightened that if it doesn't work it will finish him off from a psychological point of view.

User

Posted 09 Dec 2015 at 23:43

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

User

Posted 10 Dec 2015 at 08:00

Lyn , may I ask if Alprostadil only works if a person has had nerve sparing ?
May I also confirm that unlike Cialis etc , sexual desire/stimulation is not necessary for Alprostadil to work ?

Many thanks
Chris

User

Posted 10 Dec 2015 at 08:16

May I also add L , having just read one of your other posts. If he is getting a good erection with the pump then losing it , then the rings you have been supplied aren't adequate. The pump mine came with were specially selected for me at the pump appt , one is normally enough but two guarantees it. An erection is best produced In my opinion in the STANDING position. In fact it is then best to remain in the standing position during sex ( simple fluid dynamics ). Find yourselves a suitable table. Woman on top , man on bottom is a disaster. The base of the penis is never firm enough and damage could be caused. Normal missionary seems fine ( again simple fluid dynamics ).
Keep trying. I've struggled to stay confident but we actually just chuckle a bit now. As Lyn said it is SO easy to give up but please don't x

User

Posted 10 Dec 2015 at 08:35

Hi Louise

Good luck today. Definitely you should both go. This is a shared difficulty and 2 sets of ears are more than twice as good as one set.

Hope you get all you both want out of today.

Paul

Stay Calm And Carry On.

User

Posted 10 Dec 2015 at 08:49

Hi Louise

If I may offer it, a little more support from me to echo the comments made by others and to offer some of my experiences this week.

I do wish you both well and hope that todays appointment brings you renewed vigour to overcome some of life's challenges.

Trevor

User

Posted 10 Dec 2015 at 12:07

Originally Posted by: Online Community Member

Lyn , may I ask if Alprostadil only works if a person has had nerve sparing ?
May I also confirm that unlike Cialis etc , sexual desire/stimulation is not necessary for Alprostadil to work ?

Many thanks,
Chris

Hi Chris, alprostadil (whether in pellet or injectable form) works on people who have no nerves (if they are in the lucky group). A man does not have to feel randy for it to work, which makes it a good option for men with no libido as a result of HT (although with no libido, the whole process of sex probably feels ridiculous). However, it will last longer (if it works) if you are 'in the mood'

Re successful use of the pump, we found the hardest thing was finding the right ring or combination of rings. Our ED nurse gave us some Farnhurst rings even though the pump is an Osbon - she believes the Farnhurst ones are better. We found that missionary or doggy position were the only options for John to be able to aim correctly.

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

User

Posted 10 Dec 2015 at 13:35

Hi
It is so important the rings are sized correctly. My SOMA-Erect kit came with pump , lube , ring loading cone etc etc and a WHOLE load of various rings which were USELESS and she said not to use at all. She gave me a separate prescription for their latest ultra-stretchy rings simply labelled X , Y or Z. I got 6 of the Y. They would probably work with any pump. Even I , as an engineer , am amazed they can slip off the pump and onto your base without breaking the vacuum. They work a treat. I can supply anyone with the NHS prescription number if they want to badger their doctor.
Yes Lyn patience and practice and not taking it too seriously is key !! Doggy with man stood ( work it out - bed still involved) is just like old times. And if the man comes too quickly ( not me obviously , ahem ) you can easily keep going until your better half climaxes ( if she is so inclined ).
I wonder how Louise is getting on :-))
Chris

User

Posted 10 Dec 2015 at 20:40

Well, a bit of positive news at last!

We went for our appointment this afternoon. I went in with him to listen to the instructions, but went out for the injection bit. I know this is what the OH wanted.

It went down on its own accord slowly after around 40 minutes, back to normal at about 70 minutes.

So here's some questions for those who know:

Does the fact that it's worked once guarantee that it will work in future?

Does the body become accustomed to the same dose and have to be upped to get the same reaction in the future, or Do you just need to find your dose and stick to it?

If he had no side effects this time does it follow that he won't have any in the future?

What is the prescription allowance? I have a bit of time to make up...

I think I read there was some trouble getting hold of them- is this still the case?

We have opened a bottle of champagne tonight. I hope it's not premature!

User

Posted 10 Dec 2015 at 22:26

Originally Posted by: Online Community Member

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

User

Posted 10 Dec 2015 at 22:39

Thank you Lyn.

Any listed side effects really- pain or burning, long lasting erections. He hasn't had any at all, just a bit of stinging at the injection site.

She has used viridal easy duo- which one is this? And what is the difference please?

She said that she could prescribe four, but after that we would need to go back to the gp. She isn't going to prescribe any until she is happy that we know how to inject and that she has the dose correctly.

One thing I didn't think to ask- he is still taking the cialis daily- should he continue with this?

User

Posted 10 Dec 2015 at 23:31

Our ED nurse said he shouldn't take the Cialis within 24 hours of the injection but as your nurse didn't check this before injecting, perhaps it doesn't matter as much as we were told? Worth asking next week I think.

The difference between mixers and dual chamber is irrelevant to you if you are getting Viridal - it is Caverject that has supply problems 😊

Edited by member 11 Dec 2015 at 01:34 | Reason: Not specified

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

User

Posted 11 Dec 2015 at 06:29

I wouldn't have been able to answer any of your questions Louise (glad that Lyn could as usual) but just wanted to say I'm so pleased for you both.

We can't control the winds - but we can adjust our sails

User

Posted 11 Dec 2015 at 07:12

Thanks Lyn- so viridal is a different medication or just s different brand name?

Thanks Sandra. If it continues to work, we'll be pretty chuffed too!

User

Posted 11 Dec 2015 at 07:14

I've recently received a new batch of 4 Caverject , but they are the old style still. I see my ED nurse Monday but he said over the phone that he thinks the funky mixing-pen one is back in supply. We are in Hampshire. I'm very careful injecting but very mixed success. I think we gonna try again together as it seems odd I was getting positive reactions but now none :-((.
As for side-effects I get a whole penis throbbing , but not enough now to deter me !! The drug is the same Louise. Alprostadil. Just different brand names.
Great news L , especially as you had a tiny dose. I'm on 15 to 20mg. I think you'll be getting a jeroboam out next week ( I know I've spelt that wrong ).
Chris

Edited by member 11 Dec 2015 at 07:29 | Reason: Not specified

User

Posted 14 Dec 2015 at 19:58

Went back to see ed nurse today. After success of last week, we expected her to up the dose slightly and for the trouser snake to make his return with a vengeance.

Sadly not.

She upped the dose to7.5ml, and got the oh to do his own injection on the opposite side. It did work, but not as well as last time, and not for as long.

Why would this be? She said the injection was in the right place, and the dose was higher?

Very disappointed tonight :(

User

Posted 14 Dec 2015 at 21:45

Probably just because he had to do it himself rather than her doing it. Right place, perfect angle, just the right depth, fully injected fluid .... she does it all the time without having to think about it whereas he was probably a little bit tentative or hesitant. Practice, practice, practice

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

User

Posted 18 Dec 2015 at 07:21

Good news and bad news

Oh did first injection himself at home last night. It worked. A good time was had by all.

Sadly, it hung around a bit too long. We managed to avoid the complete embarrassment of a and e, but only just. Took 3.5 hours to start going down, and five hours to disappear completely.

Oh, the irony!!

So, phone call to ed nurse this morning.

I think it might be that we have to knock the cialis on the head and start again with the dosage. If this has happened once, is it likely to happen again? It's a massive blow. Like someone giving you a massive bar of chocolate then taking it away after one piece :(

User

Posted 18 Dec 2015 at 08:03

John only ended up in A&E once - we learned how to avoid it. Did OH do all the things advised like walking up & down the stairs, cool shower, a walk round the block? If you go back to my original story thread, I mentioned there that in the end John refused to use the injection after 7pm so that if there was a problem with prolonged erection, it wasn't too late to go out for a walk or sit in casualty for a couple of hours

At least it worked - be grateful & happy rather than see it as a blow

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

User

Posted 18 Dec 2015 at 08:03

Impressed ? Yes
Jealous ? Copy
All you have to do is speak to ED nurse. Probably only a minor adjustment in dose needed , or don't take the Cialis on that particular day etc. Good thing is it is undeniably working so means when you get the space you can get it on ! And he will quickly find the injection no big deal. I'm trying Viridal next year so fingers crossed.
Chris x

User

Posted 18 Dec 2015 at 09:47

According to my urology nurse one of the over the counter decongestants will neutralise the effects of caverjet.

Thanks Chris

User

Posted 18 Dec 2015 at 11:52

Thanks all

Lyn

It was 7.00- kids at youth club... He fell asleep (typical bloke) then woke up two and a half hours later! Then we started with the ice packs, walking etc. It did work, he just left it a bit too long. If you'll pardon the expression. And I am very happy. As was he. Then it was just a bit of an aftershock!

Chris j- The ed nurse has told him to stop the cialis and lower the dose for the next ten days until it's out of his system, then up the dose again if needed. Sounds sensible.

Chris- phenylephrine? Yes, I found that last night on dr Google. As luck would have it, I have a box of just that. I tend to buy cold stuff separately instead of altogether with a brand name, and Tesco blocked nose relief is on the shelf!

In any event, as you all do rightly say I should be - and I am- delighted. He did so hate the Ved. It's as if nothing could possibly be that bad, even needles, so hopefully it was just a minor set back which we can avoid in future. Maybe I should have started a separate post entitled 'the ups and ups of alpostradil'

User

Posted 18 Dec 2015 at 16:46

Never fall asleep with an induced erection - need to be up & about to get the chemicals circulating into the blood stream and away from the penis .....

.... or have a second bash - that usually helps to get it back down

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

User

Posted 18 Dec 2015 at 17:00

It was probably the second bash that knocked him out ...........

User

Posted 18 Dec 2015 at 21:34

Only two? I didn't realise I had to limit it to only twice. I shall have to decide which rooms will get left out next time.

But seriously Lyn, you'd think the ed nurse would have told us that important bit of information!

User

Posted 19 Dec 2015 at 06:08

things are looking on the up then

regards
nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 19 Dec 2015 at 15:20

Some things certainly are!

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.

Notification

Join the online community now.