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Erecting the Erection - Medication

User
Posted 14 Dec 2015 at 21:33

Chris, wracking my brains trying to think who on here is doing better than you? Apart from one person who has had some kind of miracle, and a new member who is getting semi-hard-ons only weeks post op (although quickly getting semis is no indicator of whether there will ever be 100%ers sadly) I can't think of anyone doing amazingly better than you.

Sometimes, we only fix on the negatives - if you have convinced yourself that you are not doing as well as others, perhaps you could do with re-reading some profiles!

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

User
Posted 14 Dec 2015 at 22:17

Hi Chris,

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

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

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

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

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

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

May be worth a punt?

You are still doing well young man.

atb

dave

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 15 Dec 2015 at 07:47

Hi Dave
Thanks for taking the time to reply. I totally understand the reasoning and from the start have wondered why I haven't been offered daily Cialis. However at the same time who am I to dispute the findings of one of the largest NHS trusts in the country ? And it's obviously not a funding thing , me being very rapidly progressed on the ED recovery course with professional pump fitting , spare rings , Viagra , Spedra and of course instant access to injection therapy !
I think if the pump wasn't working ( which it obviously doesn't for many men ) then I would seriously be banging doors down. I'll sit tight for a max of 2 more months ( 8 months total ) depending on how the new injections go and then see my GP . I'm sure he would prescribe it for me happily but wants to go with clinic advice. Are you suggesting by the way that the pump can damage the penis with overuse ? I try not to Google stuff anymore as it worries me !
Thanks all
Chris

Edited by member 15 Dec 2015 at 07:58  | Reason: Not specified

User
Posted 15 Dec 2015 at 10:48
Hi Johny

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

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

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

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

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

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

All the very best

xx

Mo

User
Posted 15 Dec 2015 at 15:35

Originally Posted by: Online Community Member

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

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

Thanks all
Chris

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

atb

dave

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

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 15 Dec 2015 at 15:50

Thanks guys
I've decided to talk this through with family GP after Xmas. I agree with you all academically.
Chris

User
Posted 15 Dec 2015 at 16:34

My GP would not prescribe Cialis 5mg daily...... I was only given a months prescription of 5mg daily by my consultant immediately after catheter removal.... 

Ironically my GP does prescribe me 8 x Cialis 20 mg per month..... but only after a letter was sent to him from my consultant ( I am copied in all correspondence ) 

My GP also needed a kick up the butt from the consultant to prescribe me Vitaros cream..... 

I distinctly get the feeling that that I'm not getting the help from my local practice that I should be?

I've never been refereed to an ED clinic or an incontinence clinic...... I will be asking some questions about this when I attend my local hospital for my 6 monthly PSA results and review  in Feb....

Luther

User
Posted 15 Dec 2015 at 17:23

Luther see Johnny's opening post.  

Originally Posted by: Online Community Member

Hi all

Im 12 weeks post op, 

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

Thanks,

Johny 

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

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

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

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

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

atb

dave 

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 15 Dec 2015 at 18:02

Originally Posted by: Online Community Member

Luther see Johnny's opening post.  

Originally Posted by: Online Community Member

Hi all

Im 12 weeks post op, 

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

Thanks,

Johny 

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

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

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

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

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

atb

dave 



Yep! Thanks Dave...

Any help I've had has been instigated by me ( mainly from info gleaned from this forum )... If I had not asked the relevant questions no one would have volunteered any info whatsoever ...
I dread to think how some sufferers are kept informed if they are either not proactive or able to understand what it is they need to be focussed on ...

User
Posted 16 Dec 2015 at 08:35

re overuse of the pump - John was advised to use it 5 times, three times a day. That is, to get to fully engorged and then release x 5 times, each morning, teatime and bedtime. Overuse would therefore have to be walking around with it all day :-0

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

User
Posted 16 Dec 2015 at 13:54
Originally Posted by: Online Community Member

. Overuse would therefore have to be walking around with it all day :-0

To bring a little light relief to the situation (pardon the pun)

I have to envisage what Lyn has just said, imagine opening the door to the postman in the morning and saying 'Hi just exercising my todger" or popping into Aldi to pick up your pistachios, getting to the checkout and saying "its the nuts that make me do it"

Be very careful if being Santa on Xmas eve, getting stuck in the chimney with a huge appendage might be difficult to explain to the firemen let alone the children!

xxx

Mo (having very naughty thoughts!!!)

User
Posted 16 Dec 2015 at 15:00

Good Lord Mo. I've taken to doing the following to Lyn and now you too.

 

http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif   http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif   http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif   http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif (The last one is the postman - better yet the postwoman)

 

 

 

Edited by member 16 Dec 2015 at 15:01  | Reason: Not specified

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

Ladies , Ladies
Especially you Mo ! I think the air-miles have gone to your head. But great to hear MoJo is back ;-))
There is nothing fun about the pump I can assure you , but great use of the time whilst shaving especially if your sink is the right height. X

Edited by member 16 Dec 2015 at 17:48  | Reason: Not specified

User
Posted 06 Jan 2016 at 17:39

Johny here,

 

Great to see this post is still going well, great info by all.

Well today after what seamed an age of waiting i got to see a consultant at the ED clinic ....7 months post op.

He asked me if id been taking and tablets, i have but explained to him my doc and the hospital disagreed about what i should be given and as a result i only started taking them 3 weeks ago.

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

He offered me a pump or injections as an alternative, iv gone for the pump...........at least i get to stick it in something lol

Any way im looking positively forward and hopefully upward for 2016

 

 

User
Posted 06 Jan 2016 at 17:47

Originally Posted by: Online Community Member

Johny here,

 

 

 

He offered me a pump or injections as an alternative, iv gone for the pump...........at least i get to stick it in something lol 

 



Haha!...... That made me laugh.....http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

User
Posted 07 Jan 2016 at 17:41

Johny

 

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

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

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

I use Muse with a fair amount of success.

All the best for your recovering.

Thanks Chris.

User
Posted 07 Jan 2016 at 18:24

I find it awful that Johny at 48 has had to wait 7 months for an ED appt. It's shocking !! In an ideal world a pump would be delivered to your house at 10 wks post op. Use it or lose it is one of the best things I learnt from the forum. I have nothing natural going on but great daily results easily with the pump. Keep at it

User
Posted 07 Jan 2016 at 18:32
We were provided with a pump at6 weeks.
User
Posted 07 Jan 2016 at 23:36

Hi,

A pump sounds useful if you can get one!

I first discussed this with my GP last July.  Had to wait until October to see the consultant at the ED Clinic.  Referred to the Pump Clinic who have given me an appointment for February and even then there's no guarantee I will be prescribed one.  I wouldn't be able to afford to pay for one myself and the thought of not getting one really gets me down.

I'm not allowed to take Viagra or similar due to my heart meds so there's not much I can do.

The reason why I see the pump as being necessary is because I'm concerned that if I don't use it, I'll will loose it, as others have said.  Everytime I read that, I stress out that I might have left things too long.

Steve

 

 

Edited by member 07 Jan 2016 at 23:37  | Reason: Not specified

User
Posted 08 Jan 2016 at 15:59
It is indeed sad. Whereas we had an appointment with the ed clinic six weeks post op, a pump was lent to us that day with instruction to use it for exercise while we waited for ours to be delivered. It arrived after eight weeks.

As I understand it, you are entitled to one on the nhs if you've had prostate cancer?

 
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