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Psychological effects

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

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 08:16

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 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 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.

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!

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 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

 
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