I just thought I would post my experience with getting from soft to hard and using injections. 3 months after surgery my surgeon finally responded directly to my question " did you manage to spare the nerves at all" with a NO! Up to that point he had always replied with vagaries like to soon to tell if it has worked and initially "that's not a question you should be asking yet"
Anyway once I had the bad news I was at least in a position to stop wasting my time with Viagra and the pump in the hope that life might be discovered in the old man and push for an appointment at the ED clinic. Unfortunately this took some 4 months to come through, so in the meantime having been advised by my specialist nurse that the first treatment would be Vitaros, I proceeded to order a pack from an internet pharmacy (Yes, I know you have to be very careful! I checked their Pharmacy registration number against the UK database to verify their authenticity first) Well what a let down - literally, a slight swelling followed by an ache and the swelling lasted 20 mins, the ache over 2 hours.
Buying the Vitaros though proved to be the best waste of money ever as when I finally got to see the ED specialist I was able to say that the Vitaros was no good, so with that the specialist said the best thing for you is the needle. At this point I was ushered into the treatment room where thank goodness there was my own specialist nurse moonlighting in the ED clinic. He gave me the necessary advise and then it was down to "now let's see how you cope with a needle" and then horror of horrors the specialist came in saying do you mind if I watch I've never seen how John handles this part of the treatment. A bit surprised I said yes, after all I didn't have much he hadn't seen before.
So, I sat on the chair, pants around ankles with an audience of 3, The nurse, the specialist and my wife. Whilst I was ok with this unfortunately the star of the show got stage fright at this point and tried to disappear into the innermost recesses of my groin (a bit like a frightened snail) So, it was down to me with shaking nervous hand try to coax the little fella to a size where I could push the needle in. I did and I felt proud! It was only a small injection 2.5mg of Caverject which caused a slight rise and proved that I was able to "do the deed" and I was sent on my way with a prescription to try it out in my own time and the instruction to start with smaller doses and increase until I got the desired result.
Well, I did and it works. 10mg does the trick but I accept I will never be back to pre-op performance but, just having the knowledge that I can if we want has helped with the mental loss of worth and manliness that so many men seem to experience.
I now use my pump before injecting as I find that by increasing the size a bit makes it a lot easier to see a good place to inject, it also helps a bit with the overall size as I did lose a bit post op, doing this does increase the chance of a bit more bruising around the injection site but so what? it works for me. Downside is 2 hours plus erections and the aching which everyone seems to describe, my solution 20 minutes on a cross trainer! it usually speeds up the subsidence. I am really interested in the idea of using medication containing pseudoephedrine to reduce the effects and will be giving that a try very soon.
Mike
Mike
"We know what we are, but not what we may be." W Shakespeare. |
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P
I know what you mean, please don't be put off by my comments. yes, it's uncomfortable. Yes, changes feeling during "the act" and yes, it aches afterwards but, no way would I want to be without my little stock of caverject! it is helping me in more ways then just the physical, the mental confidence it gives can't be discounted. Like all things following Pca it is just a new normal to be accepted and dealt with.
My personal list of Pro's and Cons of using Caverject:
Pro:
1. I can at long last be intimate with my wife again
2. Unlike before my ca I am now confident that I will stay the course without going limp at some point
3. I no longer have the fear of needles that has plagued my entire life (lets face it, if you can stick one there you can cope with one anywhere)
Con:
1. Limits spontaneity (but see one above so not a problem really)
2. The erection doesn't just "go away" (but see 2 above for the benefit)
3. It aches for a while afterwards (So does going for a long run / swim / cycle ride but I don't see people saying no to any of those things because it aches a bit)
Mike
Mike
"We know what we are, but not what we may be." W Shakespeare. |
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Hi RT,
in John's case, Zoe talked to us both and showed us how to do the shaking, mixing and ejecting any air bubbles. Then she and John went over to the couch and she injected him - she didn't do the vigorous rubbing though ... he had to do that himself! She then observed the erection and wrote down for him what dosage he should use at home. She also gave us an explanatory letter to keep just in case of trips to A&E. She was at the end of a phone over the next couple of weeks and J had to text her when he used it, what response he got and how long it lasted. She then texted back what dose to use the next time.
We saw her about every 6 weeks I think.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Mr Tweed
We've talked a bit ! Us men are strange creatures. Some of us are gladiators in the ring , but show us a nappy ....
I've always been very hands-on and have had to be due to various circumstances. I don't mind needles but understand the fears of those who do. The injection itself in my opinion is minimal pain. In a sado-masochistic sort of way , and being an engineer , I quite like the prep and procedure. Especially Viridal instead of Caverject. I admire the syringe design. I have had satisfactory results quite regularly now that have allowed penetration quite easily. But I get a horrible throbbing that lasts for hours. But needs must heh mate.
My biggest concern is that you are going to be disappointed first time , and go home with no satisfaction. But PLEASE don't despond. They started me on 15mg and it was very hit and miss. Just not quite there. I'm now just banging the whole 40mg in there and it's still not pre-op satisfaction. They always try you on a low dose and then let you try alone a few times and then up the dose eventually as Lyn says. I personally think this is going to work for you satisfactorily but give it a while. That is , if you can face injecting .. ..
I'm just over 10 months post-op now and can only imagine the torture you are going through over 3 yrs down the line. I admire your persistence truly. I try to be strong and keep trying to be upbeat , but the very reason I didn't want the op is now like a Jack Russell gnawing at my leg , and it's slowly getting through to the bone. Things aren't the same. Things will never be the same. Accepting what is, is most of the problem.
Just go for it friend and I have my fingers crossed for a courgette sized stiffy , even if it is a little curved
Chris
Edited by member 02 May 2016 at 21:18
| Reason: Not specified
User
Don't overthink it , and don't expect too much. Hopefully you will get a reaction and then the dose can be doubled or trebled. Even as a ' young buck ' I'm on maximum dose and it's still not woooaaahh!! As for Mrs Tweeds eyes , you're not that small are you :-)))
I'm actually excited for you too. Yes you have little natural recovery , but that DOES'NT mean there isn't an occasional prop that's well effective.
Good luck
Chris
User
You will be fine injecting yourself - it is only a little prick
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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.... and the needle is pretty small too
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Good for you Mr Tweed
It's only a matter of time and you'll be on your way. Yes it's not pleasant ; ask any man or woman where they would least like to inject themselves.......At least your prick' s not so small the needle came out the other side like me :--))). Have high hopes for you after a long wait
Chris
User
RT
I was getting quite jealous of all you caverjet guys having a nurse fiddling with you bits... until I saw it was a he.
Thanks Chris
User
I think I'll be going down this route pretty soon too. Tablets, I've tried 2 sorts, leave me with awful headaches and have no great effect.
My best is a natural 'semi' in the shower with my OH, although it is a bit of a squash!!
With her mum passing away recently, and dealing with my mother's dementia, neither of us have been in the mood much recently anyway. I've even been neglecting exercising with the pump, which I must get back to.
I am due a call from Christie's next month, so will be pursuing the next path to take.
Good luck with your double dose. I look forward to seeing how you get on.
Paul
Stay Calm And Carry On. |
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We have had viridal too. The nurse injected the first time, watched oh do it the second time then wrote the prescription.
My oh too has lost size, and this bothers him (much more than it bothers me). However, it hasn't bothered him enough to actually get the pump out and exercise- he absolutely loathes it- and I've stopped suggesting it. He is still taking the cialis though.
We have had a couple of close a and e calls, but not actually had to go there yet. We have worked out that mornings are best- it goes down naturally if he walks around. Limits the available 'sex slots' to non working days, but we do get there.
User
Just to report I had another hospital appointment today for a second injection and this time I did it myself! I am chuffed to bits about this!
I decided yesterday that the sooner I overcome this hurdle the better. It is not something I would choose to do if I had a choice but much to my surprise it wasn't as bad as I thought it would be. This time the dose was doubled to 5 (still a low dose) but it produced the best result I have had since surgery. Sadly by the time I got home things had deflated too much. However, I am otherwise ok about it. Side effects were some discomfort and throbbing, but tolerable and didn't lead to a priapism.
The downside is my ED nurse doesn't need to see me again until a 3 month check in August so I am on my own earlier than expected but at the moment I think I will be ok. That doesn't mean I am not nervous though! I have the option of increasing the dose to 7.5 and then 10 if necessary.
I hope this will give some hope to others travelling a similar path to me, with ED and worried about the implications of injections.
I realise there is much sadness on the forum at the moment so I do feel a degree of guilt in going on about ED when other people's journey is so much more serious than mine. Sending my best wishes to all - it is easy to say but I do mean it.
Edited by member 03 Jun 2016 at 21:39
| Reason: Not specified
User
Brilliant news RT but I wonder if you could have been a bit braver? When John had his first injection, we had a row on the way home which pretty much guaranteed the deflation was complete but to our surprise it did come back to life once we had a cup of tea and made up. For men who are successful with caverject, it can go and be brought back for some hours. Not sure if the other injectable works the same but worth bearing in mind, I think?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Good for you RT. Heading in the right direction
Guilt? More than understandable but those who have travelled this road and for whom the outcome wasn't fortunate, were not the sort to resent the joy that others feel over a bit of successful.
Have you felt envious when you've read the progress others have made? If you did then I expect that was followed with a mental "Well good for him".
We are all human, guilt is a human emotion. Rejoice in what you've been given back and let us rejoice with you !! http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif
We can't control the winds - but we can adjust our sails |
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Fantastic news Mr T
I admire you for taking the plunge and I'm glad I helped convince you that it would be OK. I know many people with needle phobias would not be able to do this , but it ain't as scary as it sounds , and seems to be the most effective way of delivering Alprostadil !!
I picked up some good tips from others. If you going to use it , mornings or afternoons seem logical in case anything goes wrong. You can easily get to hospital and join the queue.
Have a packet of tablets or a bottle of decongestant medicine handy in the cupboard. It must contain the drug phenylephrine or pseudoephedrine. It helps reverse the effects of the injection when you're done if so desired. I always take a couple of tablets now , as the 40 mg dose injection leaves me with a " slammed in the car door " type of pain for hours afterwards. In fact I'm slightly steering away from the injections now and having relative success with daily Cialis and the pump. Not as natural but very minimal side effects.
Chuffed for you mate -- go for it
Chris
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Think I'll be going down this route before long. Tablets don't help and leave me with headaches. Hope I get the same success as you, RT.
Paul
Stay Calm And Carry On. |
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I had prostate removed last year (April 2015), which was followed by 39 radiation sessions, ending in December of last year. Continence has pretty much returned to 100%, but despite taking the daily dose of Cialis 5mg the entire time, I have ED. I don't know if there are degrees of ED, but if there were, I'd be about 50%! (100% would be a return to normal). Viagra 50mg did nothing... 100mg did nothing. At my 6 month-post radiation PSA result, I asked my Dr for more help.
He referred me to a chap who specialized in the issue, and off I went to be "taught" how to safely self inject. The first time in the office, the nurse (a chap) showed how to do it, which is very straight forward on paper. He suggested starting with a level of .2cc, then if that didn't work moving up in .1cc increments to a maximum of 1.00. The process was, he injected, and said "have a go, I'll be back in 10 minutes"... and it worked. I left the office at 11am, drove home, and by 12 noon could hardly walk. By 1pm, I was lying in bed with a bag of frozen peas on the old chap... by 2pm I was hobbling to the ER. I always thought it was a joke "some problem to have! ha ha" but a priapism is actually terrifying, in that if it lasts too long, it apparently destroys the tissue. In the ER they iced and tried to squeeze the blood out, drew blood through injection, and i left 3 hours later bruised and sad.
Waiting 2 weeks, I cut the dose to .1cc. It worked, and my girlfriend and myself enjoyed ourselves "normally" for an hour. Then again, there was no sign of any end... and an hour after that, back to the ER. Nothing can describe the humiliation of explaining to nurse after nurse the problem. I felt like I was asking for a gerbil to be removed.
I have to try again, and it will be a tiny 0.05cc attempt.
One of the problems (minor in relation to the ER) is that the resulting stonker from an injection has nothing to do with emotion or stimulation. It doesn't follow the pattern of excitement and peak - it is an injection, a reaction, then fear it will do lasting damage. I'm now more than 15 months after "nerve sparing" surgery, and I totally understand that the concern of the doctors was cancer and continence, & feel blessed and fortunate, but I am pretty far from 100% recovered.
User
D
If you look at the post from CJ a couple of posts before yours you will see he mentions using a decongestant to neutralise the effects of the injection, this is a quite common bit of advice,but as with any medication you should consult a professional. I use muse and although it does not seem to have the same effect as your injections, it sounds like I do not lose as much sensitivity. I did not have RT after surgery but twenty six months post op things are improving albeit very slowly,so don't give up.
Thanks Chris
User
Hi Ducati, generally in the UK a man is advised not to use caverject again once he has been to A&E twice with a priapism, especially if it had to be resolved by drawing blood, so protocol must be a little different in the States. In our case, the nurse had already provided J with letters to take to hospital if necessary, so he didn't have the embarrassment of having to explain over and over. We were lucky that the consultant agreed to prescribe the antidote on a private prescription.
Edited by member 11 Jun 2016 at 01:33
| Reason: Not specified
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Having had two close run things, my OH just uses the viridal in the morning. As long as he gets up and about (pun intended) afterwards, it seems to go away of its own accord. It's when he's lying down or sat down that the problems start.
He also takes phenyldrine afterwards. Most supermarkets do a generic 'blocked nose relief'
User
A further opportunity arose today for me to administer another injection.
Once again I coped with the procedures. I increased the dose to the next level but sadly the outcome was just like the last occasion - just not quite enough. Side effects manageable.
However, I think my mistake was that I got down to business too soon. About 30-40 minutes later the erection was much better but I had already lost my opportunity. Whether it would still have worked I do not know but I suppose my anxiety is not helping. Anyway, I mention this so that anyone else going down this path can learn from my mistakes.
I am disappointed of course but I will soldier on. I am not beaten yet. One of these days I will have some good news to report...
Thank you all for your support.
User
Hi Mr Tweed
Try not to be too despondent. I use a full 40mg dose and still don't have a full erection but normally enough for the job. I am NOWHERE NEAR a dangerous priapism but have pain that's indescribable. I've gone off injections but may be trying something completely new on the 1st Aug with luck. As for timing , you'll just have to tie her down ....
Not literally obviously !!
User
Generally, you shouldn't need a time delay between injecting and using - it isn't like the tablets. Nor should anxiety have any effect - the injections are totally independent of emotion. Are you vigorous enough with the rubbing? And are you storing the injections somewhere where they don't get too hot (ie not on the window sill)?
The fact that you are getting a reaction is a great sign - you simply need to find the right dose and get the technique down to a fine art. The people for whom injections don't work tend to have absolutely zilch response so all is looking good for you :-)
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Originally Posted by: Online Community MemberA further opportunity arose today for me to administer another injection.
However, I think my mistake was that I got down to business too soon. About 30-40 minutes later the erection was much better but I had already lost my opportunity. Whether it would still have worked I do not know but I suppose my anxiety is not helping. Anyway, I mention this so that anyone else going down this path can learn from my mistakes.
Thank you all for your support.
RT
Although I use Muse I have had exactly the same experience as you have had with the injections, the instructions with muse are a thorough 10 second roll between the hands followed by 10 minutes walking round and keeping active. Although the instructions say erection in 5-10 minutes I doubt I will ever see it standing to attention but the swelling is impressive. My own experience with Muse is that stimulation is the key and does give far better results, laying on my back does not get the same results as on top or a standing position. I have had to have cold showers after the event to reduce the swelling.
Thanks Chris
User
Thanks LynEyre, I haven't been too concerned about a possible trip to A&E, it does seem to subside happily by itself after a couple of hours. I'm more inconvenienced by the discomfort and the darned thing being in the way http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif . I tried with a couple of Sudafed capsules the other night and the time to subsidence was definitely reduced so happy days!
It's funny you suggest going back down to 7.5, it's something we had discussed ourselves. I just don't want to go back and have a potential failure in "live action" so I am considering doing a solo dummy run to see how 7.5 works out.
Mike.
Mike
"We know what we are, but not what we may be." W Shakespeare. |
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Thank you Mike Pencil Case for your contributions to this conversation. I have found your comments most helpful and encouraging.
I am still persisting with the injections and have coped with the procedures more than I ever expected. I was offered these almost 2 years ago but I hesitated and concentrated on Muse and Vitaros (which were both insufficient) instead and I wish I taken up the offer earlier.
I confess that I still get myself a bit nervous with each injection and I tend to make a meal of it but I am determined to make them work - they are my last resort - they have to work!
The maximum dose I have been prescribed is 10. I am confident this will give me that elusive 100%. However, my problem has been actually injecting that amount. Let me explain...
With some recent injections I have noticed an air bubble in the cylinder and for some reason no amount of shaking it seems to make it rise to the top. I then push the plunger up too high to get rid of it but in doing so I have reduced the dose to less than intended. Can anyone give me any tips please? How dangerous exactly is an air bubble? I suspect I am probably being a bit too over cautious and as I said I am making a meal of things.
I would add that anything up to about 8 does give a result (quicker and better than Muse or Vitaros) but not quite enough for full job. I would also add that so far there has been nothing to indicate there would be a priapism.
One of my injections had absolutely no response whatsoever and there were no side effects either. I can only assume it was a dud medicine or perhaps a placebo was slipped in?
On another occasion when I did actually get the right 10 dose for some reason I couldn't press the plunger - it simply wouldn't budge. In my fumbling I withdrew the needle and felt nervous about injecting the same needle twice so I gave up. I just mention this so others can be better prepared and learn from my errors.
Having ED almost 4 years down the line I do get moments of despondency but I haven't given up yet. I have to confess I have lost some confidence performance wise as well as losing some length and width. However, I cannot complain because I am alive and I still have a wonderful wife. I just need to remind myself of life's priorities sometimes.
I joined the forum in March 2013 and am not sure how I would have coped if I hadn't. So thank you all for your help, support and understanding. This is appreciated more than words can say.
Sending my best wishes.
Mr T
User
Hello friend
Whilst I'm hearing some of your injection probs ( no effect , plunger not moving etc ) , I can't understand the air thing ??!! You point the needle directly upwards after all the drawing and shaking etc and gently push till a few drops come out. All done. Also I assume you using caverject 20 ?? I ended up needing 40mg so moved to Viridal.
If you using 10 of a 20mg injection , don't squirt 10 out first before injecting. Stick the whole thing in and use half. If it won't push then withdraw 4mm of the needle.
I've given up as the afterpain extraordinary but am getting super results now on daily Cialis and regular pump exercise. In two weeks I am taking the latest injection which apparently gives much less after pain. Will keep in touch
Also , you are your own boss. You can alter your dose at your own risk yeh. Live a little. Go 12 or 15 if need be. I didn't react to 10 , and frankly 30 mg more didn't give a linear advantage. But I've never needed hospital.
Edited by member 12 Oct 2016 at 21:57
| Reason: Not specified
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Hi RT,
in John's case, Zoe talked to us both and showed us how to do the shaking, mixing and ejecting any air bubbles. Then she and John went over to the couch and she injected him - she didn't do the vigorous rubbing though ... he had to do that himself! She then observed the erection and wrote down for him what dosage he should use at home. She also gave us an explanatory letter to keep just in case of trips to A&E. She was at the end of a phone over the next couple of weeks and J had to text her when he used it, what response he got and how long it lasted. She then texted back what dose to use the next time.
We saw her about every 6 weeks I think.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Mr Tweed
We've talked a bit ! Us men are strange creatures. Some of us are gladiators in the ring , but show us a nappy ....
I've always been very hands-on and have had to be due to various circumstances. I don't mind needles but understand the fears of those who do. The injection itself in my opinion is minimal pain. In a sado-masochistic sort of way , and being an engineer , I quite like the prep and procedure. Especially Viridal instead of Caverject. I admire the syringe design. I have had satisfactory results quite regularly now that have allowed penetration quite easily. But I get a horrible throbbing that lasts for hours. But needs must heh mate.
My biggest concern is that you are going to be disappointed first time , and go home with no satisfaction. But PLEASE don't despond. They started me on 15mg and it was very hit and miss. Just not quite there. I'm now just banging the whole 40mg in there and it's still not pre-op satisfaction. They always try you on a low dose and then let you try alone a few times and then up the dose eventually as Lyn says. I personally think this is going to work for you satisfactorily but give it a while. That is , if you can face injecting .. ..
I'm just over 10 months post-op now and can only imagine the torture you are going through over 3 yrs down the line. I admire your persistence truly. I try to be strong and keep trying to be upbeat , but the very reason I didn't want the op is now like a Jack Russell gnawing at my leg , and it's slowly getting through to the bone. Things aren't the same. Things will never be the same. Accepting what is, is most of the problem.
Just go for it friend and I have my fingers crossed for a courgette sized stiffy , even if it is a little curved
Chris
Edited by member 02 May 2016 at 21:18
| Reason: Not specified
User
Thank you Lyn and Chris for your response to my post. Thank you also for your kindness, encouragement and advice.
I do not think I am going to get the same aftercare rendered to Lyn and J but I am ok about it. I have no grounds of complaint regarding my ED nurse as he has been helpful in his own way. As is the case with most NHS workers these days I suspect he just has too much to do in too little time.
I still have some time before my appointment and being a sad case I am quite looking forward to it! I have had my share of injections over the years and I don't have a needle phobia as long as someone else is doing it. Doing it myself though is a different matter but at the moment I am trying not to get myself stressed as I know that will not help my anxiety issue.
In an ideal situation my wife could do the injection but her eyes are worse than mine.
I will attend my appointment, see how it goes and then take things from there and will report back further in due course.
I agree that accepting the situation we find ourself in is often the hardest part.
Sending best wishes to you both and all others affected by PCa.
User
Don't overthink it , and don't expect too much. Hopefully you will get a reaction and then the dose can be doubled or trebled. Even as a ' young buck ' I'm on maximum dose and it's still not woooaaahh!! As for Mrs Tweeds eyes , you're not that small are you :-)))
I'm actually excited for you too. Yes you have little natural recovery , but that DOES'NT mean there isn't an occasional prop that's well effective.
Good luck
Chris
User
Just an update on my recent hospital appointment...
The injection went ahead as hoped.
I tried my best to be relaxed and calm and although the injection itself hurt a bit I think I handled the procedures quite well. The erection was probably the best I have had since surgery (apart from use of vacuum device). It wasn't quite enough but I am ok about it. It was also the lowest possible dose and next time my nurse is going to double it so I am hoping that might just do the trick.
I have been booked in again for a 2nd go and more if necessary in order to establish the correct dose. My nurse has also agreed that as soon as we get the right dose I can have a further consultation when I will do the injection and he will watch. I really didn't think I would get such service and I cannot praise the NHS enough for this.
The side effects were quite minimal and tolerable but I do realise the stronger the dose obviously the side effects will increase. No priapism yet!
Whilst my ED issue is continuing I do feel quite hopeful today that all is not lost yet.
I hope this is helpful for anyone else traveling a similar path and considering injections as a possible ED remedy. It still remains to be seen if I can pluck up the courage to inject myself but If I can just get over this hurdle I think I might be ok - I will update in due course.
Sending best wishes to all.
User
You will be fine injecting yourself - it is only a little prick
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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.... and the needle is pretty small too
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Good for you Mr Tweed
It's only a matter of time and you'll be on your way. Yes it's not pleasant ; ask any man or woman where they would least like to inject themselves.......At least your prick' s not so small the needle came out the other side like me :--))). Have high hopes for you after a long wait
Chris
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RT
I was getting quite jealous of all you caverjet guys having a nurse fiddling with you bits... until I saw it was a he.
Thanks Chris
User
I think I'll be going down this route pretty soon too. Tablets, I've tried 2 sorts, leave me with awful headaches and have no great effect.
My best is a natural 'semi' in the shower with my OH, although it is a bit of a squash!!
With her mum passing away recently, and dealing with my mother's dementia, neither of us have been in the mood much recently anyway. I've even been neglecting exercising with the pump, which I must get back to.
I am due a call from Christie's next month, so will be pursuing the next path to take.
Good luck with your double dose. I look forward to seeing how you get on.
Paul
Stay Calm And Carry On. |
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Originally Posted by: Online Community MemberI think I'll be going down this route pretty soon too. Tablets, I've tried 2 sorts, leave me with awful headaches and have no great effect.
My best is a natural 'semi' in the shower with my OH, although it is a bit of a squash!!
With her mum passing away recently, and dealing with my mother's dementia, neither of us have been in the mood much recently anyway. I've even been neglecting exercising with the pump, which I must get back to.
I am due a call from Christie's next month, so will be pursuing the next path to take.
Good luck with your double dose. I look forward to seeing how you get on.
Paul
Sadly the tablets do not work sufficiently for me as well so I have had to resort to other remedies. If and when you go down the injection route I wish you all the best. When the time comes for me to do an injection myself I will update this post.
It is good that you get a semi in the shower. I would take that as a sign things are beginning to repair. I am getting a lazy lob when I wake in the morning but absolutely no amount of play gets the damn thing up in daylight hours when I am conscious!
User
We have had viridal too. The nurse injected the first time, watched oh do it the second time then wrote the prescription.
My oh too has lost size, and this bothers him (much more than it bothers me). However, it hasn't bothered him enough to actually get the pump out and exercise- he absolutely loathes it- and I've stopped suggesting it. He is still taking the cialis though.
We have had a couple of close a and e calls, but not actually had to go there yet. We have worked out that mornings are best- it goes down naturally if he walks around. Limits the available 'sex slots' to non working days, but we do get there.
User
Just to report I had another hospital appointment today for a second injection and this time I did it myself! I am chuffed to bits about this!
I decided yesterday that the sooner I overcome this hurdle the better. It is not something I would choose to do if I had a choice but much to my surprise it wasn't as bad as I thought it would be. This time the dose was doubled to 5 (still a low dose) but it produced the best result I have had since surgery. Sadly by the time I got home things had deflated too much. However, I am otherwise ok about it. Side effects were some discomfort and throbbing, but tolerable and didn't lead to a priapism.
The downside is my ED nurse doesn't need to see me again until a 3 month check in August so I am on my own earlier than expected but at the moment I think I will be ok. That doesn't mean I am not nervous though! I have the option of increasing the dose to 7.5 and then 10 if necessary.
I hope this will give some hope to others travelling a similar path to me, with ED and worried about the implications of injections.
I realise there is much sadness on the forum at the moment so I do feel a degree of guilt in going on about ED when other people's journey is so much more serious than mine. Sending my best wishes to all - it is easy to say but I do mean it.
Edited by member 03 Jun 2016 at 21:39
| Reason: Not specified
User
Brilliant news RT but I wonder if you could have been a bit braver? When John had his first injection, we had a row on the way home which pretty much guaranteed the deflation was complete but to our surprise it did come back to life once we had a cup of tea and made up. For men who are successful with caverject, it can go and be brought back for some hours. Not sure if the other injectable works the same but worth bearing in mind, I think?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Good for you RT. Heading in the right direction
Guilt? More than understandable but those who have travelled this road and for whom the outcome wasn't fortunate, were not the sort to resent the joy that others feel over a bit of successful.
Have you felt envious when you've read the progress others have made? If you did then I expect that was followed with a mental "Well good for him".
We are all human, guilt is a human emotion. Rejoice in what you've been given back and let us rejoice with you !! http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif
We can't control the winds - but we can adjust our sails |
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Fantastic news Mr T
I admire you for taking the plunge and I'm glad I helped convince you that it would be OK. I know many people with needle phobias would not be able to do this , but it ain't as scary as it sounds , and seems to be the most effective way of delivering Alprostadil !!
I picked up some good tips from others. If you going to use it , mornings or afternoons seem logical in case anything goes wrong. You can easily get to hospital and join the queue.
Have a packet of tablets or a bottle of decongestant medicine handy in the cupboard. It must contain the drug phenylephrine or pseudoephedrine. It helps reverse the effects of the injection when you're done if so desired. I always take a couple of tablets now , as the 40 mg dose injection leaves me with a " slammed in the car door " type of pain for hours afterwards. In fact I'm slightly steering away from the injections now and having relative success with daily Cialis and the pump. Not as natural but very minimal side effects.
Chuffed for you mate -- go for it
Chris
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Think I'll be going down this route before long. Tablets don't help and leave me with headaches. Hope I get the same success as you, RT.
Paul
Stay Calm And Carry On. |
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I had prostate removed last year (April 2015), which was followed by 39 radiation sessions, ending in December of last year. Continence has pretty much returned to 100%, but despite taking the daily dose of Cialis 5mg the entire time, I have ED. I don't know if there are degrees of ED, but if there were, I'd be about 50%! (100% would be a return to normal). Viagra 50mg did nothing... 100mg did nothing. At my 6 month-post radiation PSA result, I asked my Dr for more help.
He referred me to a chap who specialized in the issue, and off I went to be "taught" how to safely self inject. The first time in the office, the nurse (a chap) showed how to do it, which is very straight forward on paper. He suggested starting with a level of .2cc, then if that didn't work moving up in .1cc increments to a maximum of 1.00. The process was, he injected, and said "have a go, I'll be back in 10 minutes"... and it worked. I left the office at 11am, drove home, and by 12 noon could hardly walk. By 1pm, I was lying in bed with a bag of frozen peas on the old chap... by 2pm I was hobbling to the ER. I always thought it was a joke "some problem to have! ha ha" but a priapism is actually terrifying, in that if it lasts too long, it apparently destroys the tissue. In the ER they iced and tried to squeeze the blood out, drew blood through injection, and i left 3 hours later bruised and sad.
Waiting 2 weeks, I cut the dose to .1cc. It worked, and my girlfriend and myself enjoyed ourselves "normally" for an hour. Then again, there was no sign of any end... and an hour after that, back to the ER. Nothing can describe the humiliation of explaining to nurse after nurse the problem. I felt like I was asking for a gerbil to be removed.
I have to try again, and it will be a tiny 0.05cc attempt.
One of the problems (minor in relation to the ER) is that the resulting stonker from an injection has nothing to do with emotion or stimulation. It doesn't follow the pattern of excitement and peak - it is an injection, a reaction, then fear it will do lasting damage. I'm now more than 15 months after "nerve sparing" surgery, and I totally understand that the concern of the doctors was cancer and continence, & feel blessed and fortunate, but I am pretty far from 100% recovered.
User
D
If you look at the post from CJ a couple of posts before yours you will see he mentions using a decongestant to neutralise the effects of the injection, this is a quite common bit of advice,but as with any medication you should consult a professional. I use muse and although it does not seem to have the same effect as your injections, it sounds like I do not lose as much sensitivity. I did not have RT after surgery but twenty six months post op things are improving albeit very slowly,so don't give up.
Thanks Chris
User
Hi Ducati, generally in the UK a man is advised not to use caverject again once he has been to A&E twice with a priapism, especially if it had to be resolved by drawing blood, so protocol must be a little different in the States. In our case, the nurse had already provided J with letters to take to hospital if necessary, so he didn't have the embarrassment of having to explain over and over. We were lucky that the consultant agreed to prescribe the antidote on a private prescription.
Edited by member 11 Jun 2016 at 01:33
| Reason: Not specified
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Having had two close run things, my OH just uses the viridal in the morning. As long as he gets up and about (pun intended) afterwards, it seems to go away of its own accord. It's when he's lying down or sat down that the problems start.
He also takes phenyldrine afterwards. Most supermarkets do a generic 'blocked nose relief'
User
It was just under 4 weeks ago I was able to administer an injection myself under medical supervision on hospital premises. Today has been the first opportunity to try at home on my own. The delay has been mainly due to the pressures of life I am afraid.
Anyway I managed to do it and I coped! The needle is so fine that surprisingly it doesn't hurt. It's the thought of sticking it down there that is worse. I used the same dose as last time as I thought that as I was at home I would have no delay travelling.
It did produce quite a good result although I think the previous erection was slightly better. I won't go into too much detail but suffice to say my wife and I made a start but I was unable to finish. I think next time I will have to up the dose to see if that will be better.
Side effects have been quite tolerable. I have probably been been over cautious so far but the thought of a trip to A and E fills me with horror. I do though have a letter typed ready just in case.
Another thing I have learned it probably would be better if I had a bit of a shave down there. I must have wasted about 5 minutes trying to find a suitable site and the old todger kept shrinking within himself (probably anxiety). Next time will be a challenge as it will be the left hand side turn and I am not good with by left hand! I would give my right arm to be ambidextrous.
If there is anyone out there considering injections I would say without doubt go for it. It really isn't as bad as it sounds. It has taken me over 3 years to pluck up enough courage and to say that. If you can learn from my mistakes then all the better.
I am still not there yet but I have an option to go to 7.5, then 10. If I am honest the ED is still eating at me so unless a miracle happens it looks like injections are my last resort.
Sending my best wishes to all.
Amended to correct grammar.
Edited by member 30 Jun 2016 at 20:24
| Reason: Not specified
User
A further opportunity arose today for me to administer another injection.
Once again I coped with the procedures. I increased the dose to the next level but sadly the outcome was just like the last occasion - just not quite enough. Side effects manageable.
However, I think my mistake was that I got down to business too soon. About 30-40 minutes later the erection was much better but I had already lost my opportunity. Whether it would still have worked I do not know but I suppose my anxiety is not helping. Anyway, I mention this so that anyone else going down this path can learn from my mistakes.
I am disappointed of course but I will soldier on. I am not beaten yet. One of these days I will have some good news to report...
Thank you all for your support.
User
Hi Mr Tweed
Try not to be too despondent. I use a full 40mg dose and still don't have a full erection but normally enough for the job. I am NOWHERE NEAR a dangerous priapism but have pain that's indescribable. I've gone off injections but may be trying something completely new on the 1st Aug with luck. As for timing , you'll just have to tie her down ....
Not literally obviously !!
User
Generally, you shouldn't need a time delay between injecting and using - it isn't like the tablets. Nor should anxiety have any effect - the injections are totally independent of emotion. Are you vigorous enough with the rubbing? And are you storing the injections somewhere where they don't get too hot (ie not on the window sill)?
The fact that you are getting a reaction is a great sign - you simply need to find the right dose and get the technique down to a fine art. The people for whom injections don't work tend to have absolutely zilch response so all is looking good for you :-)
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Originally Posted by: Online Community MemberA further opportunity arose today for me to administer another injection.
However, I think my mistake was that I got down to business too soon. About 30-40 minutes later the erection was much better but I had already lost my opportunity. Whether it would still have worked I do not know but I suppose my anxiety is not helping. Anyway, I mention this so that anyone else going down this path can learn from my mistakes.
Thank you all for your support.
RT
Although I use Muse I have had exactly the same experience as you have had with the injections, the instructions with muse are a thorough 10 second roll between the hands followed by 10 minutes walking round and keeping active. Although the instructions say erection in 5-10 minutes I doubt I will ever see it standing to attention but the swelling is impressive. My own experience with Muse is that stimulation is the key and does give far better results, laying on my back does not get the same results as on top or a standing position. I have had to have cold showers after the event to reduce the swelling.
Thanks Chris
User
Thank you Chris, Lyn and Chris for encouragement and advice.
Out of Vitaros, Muse and injections there is no doubt the injections have worked the best so far. Not quite enough for full job but getting close. I have stored the drug correctly but agree probably not vigorous enough with rubbing. I will try again in due course.
It is such a shame the Vitaros or Muse were insufficient because I can handle the procedures quite well. I have coped more than I ever expected with the injections but it has been the last resort.
I have coped with the side effects today. No priapism and no pain. Just some discomfort but tolerable, also been very tired.
Another tip - probably best to to leave phone off hook. I wouldn't have had the energy even if there had been time to seize the moment after 30/40 minutes anyway but the phone rang and my wife was on it for ages, lol! It is good I can laugh about this.
I am not despondent yet and will keep trying!
Thank you again.
User
I just thought I would post my experience with getting from soft to hard and using injections. 3 months after surgery my surgeon finally responded directly to my question " did you manage to spare the nerves at all" with a NO! Up to that point he had always replied with vagaries like to soon to tell if it has worked and initially "that's not a question you should be asking yet"
Anyway once I had the bad news I was at least in a position to stop wasting my time with Viagra and the pump in the hope that life might be discovered in the old man and push for an appointment at the ED clinic. Unfortunately this took some 4 months to come through, so in the meantime having been advised by my specialist nurse that the first treatment would be Vitaros, I proceeded to order a pack from an internet pharmacy (Yes, I know you have to be very careful! I checked their Pharmacy registration number against the UK database to verify their authenticity first) Well what a let down - literally, a slight swelling followed by an ache and the swelling lasted 20 mins, the ache over 2 hours.
Buying the Vitaros though proved to be the best waste of money ever as when I finally got to see the ED specialist I was able to say that the Vitaros was no good, so with that the specialist said the best thing for you is the needle. At this point I was ushered into the treatment room where thank goodness there was my own specialist nurse moonlighting in the ED clinic. He gave me the necessary advise and then it was down to "now let's see how you cope with a needle" and then horror of horrors the specialist came in saying do you mind if I watch I've never seen how John handles this part of the treatment. A bit surprised I said yes, after all I didn't have much he hadn't seen before.
So, I sat on the chair, pants around ankles with an audience of 3, The nurse, the specialist and my wife. Whilst I was ok with this unfortunately the star of the show got stage fright at this point and tried to disappear into the innermost recesses of my groin (a bit like a frightened snail) So, it was down to me with shaking nervous hand try to coax the little fella to a size where I could push the needle in. I did and I felt proud! It was only a small injection 2.5mg of Caverject which caused a slight rise and proved that I was able to "do the deed" and I was sent on my way with a prescription to try it out in my own time and the instruction to start with smaller doses and increase until I got the desired result.
Well, I did and it works. 10mg does the trick but I accept I will never be back to pre-op performance but, just having the knowledge that I can if we want has helped with the mental loss of worth and manliness that so many men seem to experience.
I now use my pump before injecting as I find that by increasing the size a bit makes it a lot easier to see a good place to inject, it also helps a bit with the overall size as I did lose a bit post op, doing this does increase the chance of a bit more bruising around the injection site but so what? it works for me. Downside is 2 hours plus erections and the aching which everyone seems to describe, my solution 20 minutes on a cross trainer! it usually speeds up the subsidence. I am really interested in the idea of using medication containing pseudoephedrine to reduce the effects and will be giving that a try very soon.
Mike
Mike
"We know what we are, but not what we may be." W Shakespeare. |
User
Great news but now that it is working, you could try dropping back to 7.5mg to see whether you can sustain an erection long enough for the deed but without the 2 hour trauma afterwards!
Usually, when a man has ended up in A&E with priapism they will not prescribe any more Caverject but we were lucky and John's consultant issued a proper antidote - the downside was that we had to get it on a private prescription. Never needed to use it (after the priapism the injections didn't always work very well) but he appreciated the peace of mind of knowing he wouldn't have to go to hospital in the middle of the night again!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Thanks LynEyre, I haven't been too concerned about a possible trip to A&E, it does seem to subside happily by itself after a couple of hours. I'm more inconvenienced by the discomfort and the darned thing being in the way http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif . I tried with a couple of Sudafed capsules the other night and the time to subsidence was definitely reduced so happy days!
It's funny you suggest going back down to 7.5, it's something we had discussed ourselves. I just don't want to go back and have a potential failure in "live action" so I am considering doing a solo dummy run to see how 7.5 works out.
Mike.
Mike
"We know what we are, but not what we may be." W Shakespeare. |
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M
I use muse which I suspect from stories on here is not as intense as caverjet. I would run my penis under cold water to ease the throbbing and reduce the swelling.
Thanks Chris
User
I'm off to Christies in the middle of November to try caverjet. On one hand, it's exciting to think I might eventually have a usable erection - on the other, well..............
Paul
Stay Calm And Carry On. |
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P
I know what you mean, please don't be put off by my comments. yes, it's uncomfortable. Yes, changes feeling during "the act" and yes, it aches afterwards but, no way would I want to be without my little stock of caverject! it is helping me in more ways then just the physical, the mental confidence it gives can't be discounted. Like all things following Pca it is just a new normal to be accepted and dealt with.
My personal list of Pro's and Cons of using Caverject:
Pro:
1. I can at long last be intimate with my wife again
2. Unlike before my ca I am now confident that I will stay the course without going limp at some point
3. I no longer have the fear of needles that has plagued my entire life (lets face it, if you can stick one there you can cope with one anywhere)
Con:
1. Limits spontaneity (but see one above so not a problem really)
2. The erection doesn't just "go away" (but see 2 above for the benefit)
3. It aches for a while afterwards (So does going for a long run / swim / cycle ride but I don't see people saying no to any of those things because it aches a bit)
Mike
Mike
"We know what we are, but not what we may be." W Shakespeare. |
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Thank you Mike Pencil Case for your contributions to this conversation. I have found your comments most helpful and encouraging.
I am still persisting with the injections and have coped with the procedures more than I ever expected. I was offered these almost 2 years ago but I hesitated and concentrated on Muse and Vitaros (which were both insufficient) instead and I wish I taken up the offer earlier.
I confess that I still get myself a bit nervous with each injection and I tend to make a meal of it but I am determined to make them work - they are my last resort - they have to work!
The maximum dose I have been prescribed is 10. I am confident this will give me that elusive 100%. However, my problem has been actually injecting that amount. Let me explain...
With some recent injections I have noticed an air bubble in the cylinder and for some reason no amount of shaking it seems to make it rise to the top. I then push the plunger up too high to get rid of it but in doing so I have reduced the dose to less than intended. Can anyone give me any tips please? How dangerous exactly is an air bubble? I suspect I am probably being a bit too over cautious and as I said I am making a meal of things.
I would add that anything up to about 8 does give a result (quicker and better than Muse or Vitaros) but not quite enough for full job. I would also add that so far there has been nothing to indicate there would be a priapism.
One of my injections had absolutely no response whatsoever and there were no side effects either. I can only assume it was a dud medicine or perhaps a placebo was slipped in?
On another occasion when I did actually get the right 10 dose for some reason I couldn't press the plunger - it simply wouldn't budge. In my fumbling I withdrew the needle and felt nervous about injecting the same needle twice so I gave up. I just mention this so others can be better prepared and learn from my errors.
Having ED almost 4 years down the line I do get moments of despondency but I haven't given up yet. I have to confess I have lost some confidence performance wise as well as losing some length and width. However, I cannot complain because I am alive and I still have a wonderful wife. I just need to remind myself of life's priorities sometimes.
I joined the forum in March 2013 and am not sure how I would have coped if I hadn't. So thank you all for your help, support and understanding. This is appreciated more than words can say.
Sending my best wishes.
Mr T
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Hello friend
Whilst I'm hearing some of your injection probs ( no effect , plunger not moving etc ) , I can't understand the air thing ??!! You point the needle directly upwards after all the drawing and shaking etc and gently push till a few drops come out. All done. Also I assume you using caverject 20 ?? I ended up needing 40mg so moved to Viridal.
If you using 10 of a 20mg injection , don't squirt 10 out first before injecting. Stick the whole thing in and use half. If it won't push then withdraw 4mm of the needle.
I've given up as the afterpain extraordinary but am getting super results now on daily Cialis and regular pump exercise. In two weeks I am taking the latest injection which apparently gives much less after pain. Will keep in touch
Also , you are your own boss. You can alter your dose at your own risk yeh. Live a little. Go 12 or 15 if need be. I didn't react to 10 , and frankly 30 mg more didn't give a linear advantage. But I've never needed hospital.
Edited by member 12 Oct 2016 at 21:57
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