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Erecting the Erection - Medication

User
Posted 19 Apr 2016 at 23:03

Originally Posted by: Online Community Member

Aah. I may have got that wrong? Won't be the first or last time I have made an error. Consultant I took as one of The Misters that stroll about as if they own the places, in white coats. I have had less than satisfactory experiences with them.

Allowing for the fact that he might not be a demi-god that delegates morning functiosn, the majority of my opinion stands, until and unless further corrected.

atb

dave

 

A demi-god in a vacuum :-)

 

I think you probably assumed correctly - I simply couldn't believe that someone properly qualified could be so bleurgh 

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

User
Posted 19 Apr 2016 at 23:16

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

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

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

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

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

User
Posted 20 Apr 2016 at 07:30

I was prescribed the Rapport Premier, It comes with about 9 different sized rings- I use the largest one for daily practice and one of the much smaller ones for a longer lasting erection.

It avoids the need for precise sizing and comes with a DVD, it is really pretty simple to use, but does take a bit of practice to get slick.

http://www.owenmumford.com/en/patients-product/rapport/

Cheers RD

User
Posted 20 Apr 2016 at 09:24

I am getting the Somaerect ll and will take all comments onboard but sometimes there seems to be a battle about who or what is right so it will be a trial of errors for me.

What works for one may not necessarily work for the other!!

Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 20 Apr 2016 at 09:56

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

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

Thanks Chris

User
Posted 20 Apr 2016 at 12:27

Hi, Walnut.
At today's meeting with the CNS for erectile function the pump she was talking about was the somaerect. www.iMEDicare.co.uk makes quite a lot of the importance of getting the right size ring. The way it works here is that I would go to a separate Wellman Clinic to be shown how to use it. (I'll do an update about today's consultation later ...)
I shall try to investigate all this on the internet this afternoon, but the curtain hangers are in!
All the best,
Henry

User
Posted 20 Apr 2016 at 12:56

Very happy with my Somaerect. The rings supplied in the lovely case are totally outdated and the demo nurse prescribed these superb new X Y Z rings. To be honest I only use the rings if I want to masturbate ( buy a Tenga egg - the nearest thing to real sex ) otherwise it is just for daily exercise where I get him erect , deflate , re-erect etc. Good luck

If life gives you lemons , then make lemonade

User
Posted 20 Apr 2016 at 14:07
Sounds like I had the same kit as CJ.

Somaerect 15019 was the pump and some rings of varying sizes.

Somaerect 15222 size y were 3 additional rings.

It was explained how to use it and I was given a detailed instruction sheet but never had an actual practical demo.

ED consultant made the recommendation and a rep from imedicare was in clinic, he did all the paperwork to give to the GP.

Thanks Chris

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

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

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

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

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

John

User
Posted 20 Apr 2016 at 18:17

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

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

If life gives you lemons , then make lemonade

User
Posted 20 Apr 2016 at 19:01

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

Already took the Cialis too.

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

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 20 Apr 2016 at 19:27
Chris and Chris , thanks for your replies.

Chris J , I can see what you mean about the lube. I ended up using nearly all the paper towels they gave me. I can see it become annoying but I'll give it a go and see how it is for me . I was told that standing up is the best way to use the device , with the tube pointed down at a slight angle. Lying down apparently is not as effective but I guess it'll be trial and error.

Yes I'll be trimming down below now. I have a beard so when I trim up top I'll have to remember to trim below as well !

I liked immediate ease of operation as well. So simple and smooth. It was really good to see my fella returning to normal again. The reps could sense how I felt and they said that was one of the best parts of the job - customer satisfaction !

Chris PB , were you given any instructions with the pump? You don't want to get into bad habits re usage. I'm now glad I was shown how to use it before I will have it and can see why the hospital wanted me to have the demo first. The application of the 2 constriction rings looks fun to master.

As you know I started this ed lark at the end of Jan and here we are towards the end of April . I have no pump yet, but you see your uro nurse , what a week ago and here you are , already to pump ! Is there no justice ??? But I am ahead of you re Cialis but you do have the lower Psa level though !

It seems that the reps see far more RP patients than HT/RT patients. They were interested in my RT tattoos , when I asked why , I was told we only see a handful of RT /HT patients each year, we find them fascinating !

If it hadn't been for this site then I wouldn't had done anything about this. And Chris PB , I think you'd say the same. How more have been overlooked like us ?

But it was a good day with something positive.and plenty of laughs along the way . Just need the actual prescription now .

Thanks

John

User
Posted 20 Apr 2016 at 19:40

Yes John
Standing gives far superior results and a better erection , especially if you are going to use a band pre sex. I'm just getting lazy ........

If life gives you lemons , then make lemonade

User
Posted 20 Apr 2016 at 20:07

Well a good day all round then, But Surr, why aren't you taking the pump on holiday with you? As long as it is in the checked-in luggage you will be fine. Ours has been on every holiday with us - good job we don't have to book her a seat of her own :-)

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

User
Posted 20 Apr 2016 at 20:26
Lyn,

If I can I will , but it depends on how soon it's available. Surgery indicated prescription might not be ready before 2.00 pm Friday (!) , and then I have to go the chemist for it to be ordered. We go away on Monday so I doubt it'd be available by then . Otherwise it would be coming with me.

However I can be an impatient sod , so I'm going to call the surgery tomorrow afternoon to see if the prescription's ready.

Thanks ,

John

User
Posted 20 Apr 2016 at 20:32

:-0

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

User
Posted 20 Apr 2016 at 20:39

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

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

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

Here's to life on the up(hopefully)

Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 20 Apr 2016 at 22:23
Chris,

The reps said they'd been to the adjacent RT centre at the hospital this morning. Hopefully they were able to get a message across there to help patients like us.

However as you know being on HT, with the immediate loss of libido and the rigours of RT meant for me at least, that seeking ED help was the last thing on my mind then. I had enough to contend with, getting over fatigue and returning to work. It's only been in the last 4-5 months ( probably as I joined this site) and speaking to a RP friend that I thought about doing something.

But if by posting here it helps others regarding this, then surely this is one of the reasons for this site existing. I would say though that last year I more or less bypassed any post on ED.

This was because the dangers of penile atrophy had not been spelt out to me and I thought that these posts had no real relevance to my situation. How wrong I was.

All I had been told was that by going on HT I would lose interest in sex. Nothing more.

I did post about ED - first visit to GP and Penile Rehab as separate posts in January , partly after my initial consultation with my GP about ED. She had just been on a course run by PCUK the previous week. She wants ALL patients to be aware of atrophy. To date about 3-400 people have viewed them, hopefully some men will have taken action. She was horrified that I'd been overlooked.

Keep pumping and taking your twice weekly tablets. Me ? I'm a daily man .

Keep well

John

User
Posted 20 Apr 2016 at 22:46

Surr,

The viberect is an expensive bit of kit.

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

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

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

 

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

 

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

(PS I've no connexion to the company)

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

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

RD

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

User
Posted 21 Apr 2016 at 06:35
RD,

Thanks for the info . I shall look into this, as you say it's much cheaper than the Vibererect ( quoted about £170 ex vat as PCa patient) . I must say that the Viberect looked really good though but if there are cheaper but just as effective options around then it all be worth an investigation.

Cheers,

John

User
Posted 21 Apr 2016 at 16:16

Hi

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

Thanks Chris 

User
Posted 21 Apr 2016 at 16:22

I would be very cautious about the Viberect John - the research on its efficacy was done with a group of men from age 25 - 40 (mean age was 26.9), none of whom had ED. For men with partial erections, the stimulation may produce a stronger, firmer hard on but it is not going to produce an erection in a man unless his nerves have repaired. It might be more useful (and cheaper) to buy a TENS machine. That's not to say the viberect mightn't be fab for getting an orgasm but don't rely on it to cure ED.

My other concern would be to check with the urologist or oncologist first. The vibration should in theory be like a very, very vigorous hand-job only much more so but I would want to know whether there is any risk of activating / dispersing any left-over cancer cells. That may not be the case but conscious that men with PCa shouldn't have back massages etc except from a physio / masseur / chiro that is specially trained, I wonder whether this could carry the same risk?

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

User
Posted 21 Apr 2016 at 16:23

Originally Posted by: Online Community Member

Hi

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

Thanks Chris 

 

I'm off to try it now! 

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

User
Posted 21 Apr 2016 at 18:52

Originally Posted by: Online Community Member

I would be very cautious about the Viberect John - the research on its efficacy was done with a group of men from age 25 - 40.  So men with in theory, no problems getting an erection.  How is that worth anything to men with PCa or after effects?  They will tend to be older, and have problems, otherwise they would not be seeking assistance.

My other concern would be to check with the urologist or oncologist first. The vibration should in theory be like a very, very vigorous hand-job only much more so but I would want to know whether there is any risk of activating / dispersing any left-over cancer cells. That may not be the case but conscious that men with PCa shouldn't have back massages etc except from a physio / masseur / chiro that is specially trained, I wonder whether this could carry the same risk?

Tihs.  No one has ever warned me of this.  Not that I have had any back massages, or any massages for a while now, :-(

Is anything else risky?  Is very very vigorous hand applied exercise risky in any way?

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 21 Apr 2016 at 19:38
Thanks all for the advice/ suggestions , all worth thinking about.

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

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

Regards all,

John

User
Posted 12 May 2016 at 07:41

Hello fellow sufferers -men and women
So after 11 months now of committed daily pumping and no actual natural function at all since RP , being the proactive kind of guy I am , I decided to self fund and take daily Cialis 5 mg .. I've been on it just over a week with my doctor"s permission. Side-effects seem to be indigestion and making my normal back ache worse.
And so the planets aligned and jiggy jiggy occurred this morning , and a definite healthy 50% erection erected. Not enough for penetration but big smiles haha.
Thing is , reading other's posts , IS this any better than pump alone ?? Yes lovely to be harder without all the paraphernalia, but only a lazy lob. Now I don't know what to do re Viridal injections to get a full useable erection ( if not painful ). ED nurse yesterday texted to me to NOT mix these drugs. He didn't even suggest injection dose reduction ( which was my plan of action ).
I think I'm gonna stick with 4 months Cialis now I've bought it , use the pump daily for exercise , and maybe risk an injection when we next feel fruity , which isn't that often these days tbh since this disease hit us. I'll make it a lunchtime so I can get to A&E if needs be.
Best wishes travellers
Chris

If life gives you lemons , then make lemonade

User
Posted 12 May 2016 at 10:26
Chris

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

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

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

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

xxx

Mo

User
Posted 12 May 2016 at 13:49

Reported as smap.

Dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 12 May 2016 at 16:49
Chris,

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

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

L x

User
Posted 12 May 2016 at 17:57

Hi L
Please take the time to try Colwick Chris' Flaccid sex. We just couldn't get round to it but tried the other week. It would be inappropriate to say too much but with time and effort we both agreed it could be awesome. Google the 'scissors' position where you are perpendicular to each other. You need a big bed , lube if needed , two pillows and then just relax , breathe. I was amazed at what I could achieve by doing absolutely nothing !!!

If life gives you lemons , then make lemonade

User
Posted 12 May 2016 at 19:34
CJ

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

Thanks Chris

User
Posted 12 Jun 2016 at 08:01

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

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

If life gives you lemons , then make lemonade

User
Posted 12 Jun 2016 at 08:15
Could it be the hormone therapy that has caused the reduction in length and girth??🙂
User
Posted 12 Jun 2016 at 09:39

Hi Chris

Good to hear that you are back on the bones, wish I could say the same.

I take 5mg daily of Cialis with no side effects, and a 20mg when the notion takes me,  I too have noticed a reduction with my wee fella who seems to have lost a bit of length, I too believe it is the HT implant that I received 3 months ago, have another implant this Wednesday, cannot wait for that, plus I think that not having any erections for 8 months has contributed towards the loss of length. Really getting me down with the lack of erection, tried to get a pump from the NHS but was told to wait and try Cialis first. May have to buy one myself as my next appointment with the ED nurse isn't until October.

Have a great time on holiday and try and put this s*** to the back of your mind, I know that it is not easy as I have just returned back from Tenerife and it is hard to forget our problems. The holiday was more relaxed this time as I couldn't drink much due to my wee urinary problem I have at present but still enjoyed the time away in the sunshine.

Onwards and upwards

Cheers

 

User
Posted 12 Jun 2016 at 09:41

Well Done Chris

 

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

Edited by member 12 Jun 2016 at 09:41  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 12 Jun 2016 at 17:25
CJ

Well done mate I know you have worked hard on the problem. I have not used the pump very often due to the stricture and not noticed to much shrinkage. Daily sildeafil keeps the penis slightly swollen most of the time.

Thanks Chris and Chudley

User
Posted 12 Jun 2016 at 21:34
If your GP won't prescribe Cialis 5mg daily on that evidence I would be mortified. I am so pleased that you are getting such great results now.

As for the loss of length or girth, try not to worry about that, especially if you are both still getting great pleasure! bicultamide might be contributing. Other men on here have said that once normal erections start to happen and post HT things tend to get back to pre op status over time and with continued use of the pump and exercise!

Your lemons are beginning to sound more like good grapes

my very best wishes

xxx

Mo

User
Posted 05 Jul 2016 at 14:23

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

If life gives you lemons , then make lemonade

User
Posted 05 Jul 2016 at 16:21
CJ

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

Thanks Chris

User
Posted 05 Jul 2016 at 16:25

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

If life gives you lemons , then make lemonade

User
Posted 05 Jul 2016 at 17:39
CJ

I have a prescription for daily 100mg sildeafil, that does give semi tumescence most of the time, helps with the incontinence but did make me itch all over,even cutting the pills in half was still effective but still was itching, left them off for now whilst taking other medication for the osteoarthritis. Next time at GP may ask for 25 mg.

Thanks Chris

User
Posted 05 Jul 2016 at 21:44
Trying to flip page
User
Posted 05 Jul 2016 at 21:46
Trying to flip the page 2
User
Posted 05 Jul 2016 at 21:50
Trying for a third time to get rid of the page not found.

Edited by member 05 Jul 2016 at 21:54  | Reason: Not specified

User
Posted 10 Jul 2016 at 22:26
Cialis has been very very effective for me

Edited by member 10 Jul 2016 at 22:29  | Reason: Not specified

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

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

Hi there Chris,

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

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

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

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

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

Edited by member 10 July 2016 22:27:19

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

User
Posted 05 Aug 2016 at 14:22

I am 60 years and almost 18 months post op.  Prior to the op had an active and satisfying sexual relationship with my wife who has continued to be supportive and active in my recovery throughout. We laugh a lot.

I have a question or two about ED but first need to give the background, so bear with me.

I have been using a pump regularly along with Viagra during this last year or so, as rehab therapy.  Initially found the pump not very good for gaining a full erection as my old man tended to pivot at the base.  When used with Viagra that helped.  I found the side effects of Viagra were not nice mainly aching neck, blocked sinuses and headaches, but I persisted with it. I also found that I could get an erection enough for masturbation with Viagra but not sufficient for penetration I had to use the pump and rings for that.   That worked reasonably well, but immediately after orgasm I had to get that damn ring off as it was so uncomfortable.  I tried the SureRelease rings which were much better as they could be ripped off after orgasm and the discomfort went away immediately.  By attaching a piece of string to the finger holes at the side of each ring my wife could easily pull the strings after orgasm and the ring ripped away easily.  But of course there were only two  of these rings provided with the kit and these specific rings are not provided on prescription.  No problem, we can buy them privately.

Throughout this time the Uro nurse used the standard response "Well its early days".  In fact I heard that expression so many times it became a joke between my wife and me.

 

Anyway after about 13 months  I was referred to the ED clinic (can you believe I had never had an appointment with them up till then). The consultant said that the Viagra and pump had probably achieved all they are going to achieve in terms of rehab and recommended Caverject.  An appointment was made with the ED nurse in another three months.   I have to say I was pretty annoyed at this point as having been told that it was "early days" for the last 13 months, now suddenly it wasn't early days anymore!!http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-yell.gif

 

So we had the appointment and have used Caverject 6 times now with the following results.

1. Afternoon. 10ug. Erection 2 hours.  Painful ache.

2. Afternoon. 7.5ug. Erection 3.5 hours. Painful ache and panic setting in.

3. Morning. 2.5ug.  Erection inadequate for satisfaction.  Went away within 1 hour.

4. Morning. 5ug. Erection 95% adequate, not satisfying enough for my wife. lasted 1.5 hours

5. Morning 7.5ug Erection 1.5 hours.  Good erection and satisfying

6. Afternoon 7.5ug Erection 2.5 hours Good erection and painful ache

 

My ED nurse said that they are trying to get approval for a new injection which results in less pain apparently. Waiting for that!

 

So my first question - has anyone else found that the length of erection time apart from  being dependant on the dose also appears to be dependant on time of day?  I wonder if it is down to the metabolism at different times of the day.

 

Second, does anyone know the name of this new injection and what the progress is within NICE for approval?

 

My main question -  Having gone through the year or so of "early days" and now being told that the pump therapy and Viagra has "probably done all its going to do" so I am now on injections, are there any of you out there who have still regained almost total erection capability beyond 18 months post op.  In other words is there still hope that I may get full recovery and is there anything I can or should do to help things along?

 

Thanks in advance for your input.

User
Posted 05 Aug 2016 at 15:59

Hello
I am 14 months post op , 49 yrs old and supposedly had double nerve spare. I desperately didn't want impotence but at this time have not had a single natural event yet. I've used the pump every day from 8 weeks post op without fail. At first I had normal sized erections but floppy at the base. But it did the job. My penis has now slowly died and is smaller all over. I've tried all the pills and am currently self supplying Cialis 5mg which gives the best results for natural sex. I've done the whole injection route , both Caverject and Viridal. I need a full 40mg dose but have never been fully erect , let alone priapism. I guess I was butchered during the op. Still have severe bladder and bowel pains now. I couldn't stand the after pain of the injection so have almost given up on them. I was due to try this new injection last week but they cancelled my appt. I think it's called Trimix and is used in the states. Doesn't give better erection but less pain. I was told to ease off on pump use as " it would have worked by now ". I will keep going as my penis is atrophying.
By far the best thing for me is the Cialis. If I take it early say 6 in the morning , we can have proper sex at 7 , with the help also of a slacker cock ring. Not like the pump ones. It just helps. I have very very jelly like pump rings. If you are very trimmed below and use lube , you can easily slip a finger under the ring post sex and ease it off. They are available on prescription and I have the codes. They fit any pump.
Thanks for a great post. Feel free to contact me.
Chris

If life gives you lemons , then make lemonade

User
Posted 05 Aug 2016 at 22:24

D

We use muse not caverject and find that duration is more about state of mind,mood,concentration stimulation and position. I am 26 months post op and despite being told my nerves were not spared with plenty of stimulation and no medication I can get 90 per cent swelling/tumescence but I cannot get  a full erection. You might want to look at some of my posts on page 4 of this conversation, you do not need an erection for vaginal intercourse. You may both need to adjust your techniques and adapt to the new norm. 

Using lube to get the rings on may also make it easier to get them off, I did often get a black and blue penis from removing a tight ring, try using two slightly larger rings.I have an ongoing stricture and have not used the pump that often but on the occasions that I do I can get a full size penis but again no strength but still very usable.

http://community.prostatecanceruk.org/posts/t9839-One-wife-s-story-of-ED

Have a read of the above link and you will see you do not need to give up hope, recovery can take longer than the two years that is frequently quotes .

Thanks Chris

User
Posted 15 Aug 2016 at 17:48

Yes, John returned to full erectile function between year 3 and year 4 after RP although the experts say that whatever you have at 2 years post-op tends to be all you can expect. He still uses Viagra or Levitra though as although physically he no longer has ED, the mind games still cause problems.

The safest and easiest way to remove a ring after use is to pull the sides apart (using the finger rings) and hold - the blood seeps back into your body making the penis small again. The ring should then slip off easily. As already said, plenty of lube also helps.

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

 
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