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Prevention of penile atrophy.

User
Posted 22 Feb 2020 at 12:25

Background:

Since December 2018, I have had Hormone therapy (Decapeptyl), Chemotherapy (Docetaxel) and am now  coming to the end of my radiotherapy. (Final session: 3rd March 2020).

My PSA came down to 0.95 (from 67) after the first couple of doses of Decapeptyl.  After chemotherapy it came down further to 0.14.  I don’t yet know if radiotherapy will bring my PSA down again.

During the last year ED has been an issue and I have applied from the NHS for a vacuum device to avoid penile atrophy.

My application has been rejected:  “Due to inadequate evidence of clinical effectiveness and lack of evidence of cost effectiveness, NHS funding for vacuum erection devices for penile rehabilitation in patients with prostate cancer is not normally funded”  NHS South, central and West Commissioning Support Unit.

Question:

Any thoughts?  

Has anyone had any luck with their funding for these devices, or in fact in their use?

 

Thanks

 

 

User
Posted 22 Feb 2020 at 20:17
Thanks Lyn , yes no longer than 30 mins with a tight band on. I’ve never needed longer than 30 minutes anyway ......:-))
User
Posted 23 Feb 2020 at 17:54

Vitaros does work for some people, but it is the least effective method of administering Alprostadil, and doesn't work for many people. Caverject is the most effective Alprostadil delivery method. However, you should be trying for more erections than is safe to achieve using Caverject.

Ideally, you want to be on 5mg daily low dose tadalafil and using a pump if you can't get erections. Keep up with the 5mg daily tadalafil even if it doesn't give erections - it improves blood circulation even in the flaccid penis, but if it does enable erections, that's perfect. You may need an occasional 20mg dose to generate an erection, but if you do this, skip the next 2 day's 5mg doses to prevent overdosing on tadalafil (and it will take that long to drop back to the 5mg daily level anyway). None of the PDE5 inhibitors work for everyone, and you might need to try another one for erections, but only tadalafil is effective as a daily low dose to protect the flaccid penis too.

It's a shame some health authorities won't provide penile rehabilitation drugs/pumps. ED drug doses are not effective for penile rehabilitation.

For a pump, the guidelines I got for penile rehabilitation were to aim for 10 mins/day or 15 mins every other day. Avoid leaving it more often than every other day. Pumping it up and letting it down several times may be more effective than pumping up and holding it for the whole duration just once. Don't use constriction rings for penile rehabilitation - only use them if you are having sex, and limit them to 30 mins max. Never allow yourself to fall asleep with a constriction ring on.

If you can get a good erection with PDE5 inhibitors, this is better than using the pump because the pump only erects the visible half of the penis. A good natural or PDE5 inhibitor enhanced erection will erect the whole organ, including the half inside the body. However, both PDE5 inhibitors and pumps have a roll to play, and you can use both.

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User
Posted 22 Feb 2020 at 13:36

Did you go to an ED nurse or andrology clinic? Or did you just request it via the GP or similar?

Frustrating for you that there is a postcode lottery on vacuum pumps (and ED support generally) - if you lived in another area the pump would probably be already in your hands.

If you haven't seen an ED specialist (and there is one in your area) ask for a referral and see what they have to say about it. If that isn't a possibility, write back to the CCG pointing out that you don't want the pump for penile rehabilitation- you want it for the purpose of penetrative sexual activity. They can't deny that the pump is effective for that! You could also point out that the pump will be more cost effective than years of caverject injections. 

 

Ultimately though, you may have to just buy one on the internet. 

Edited by member 22 Feb 2020 at 13:37  | Reason: Not specified

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

User
Posted 22 Feb 2020 at 15:43

Sorry to inject a bit of levity into the proceedings but my wife and I rewatched the DVD of "The Full Monty" the other evening. There is a scene in which the character - Horse - is in a phone box with something that looks a bit like a pump and he's saying to the rep on the other end of the phone:

"What do you mean in what sense it isn't working? It isn't working in the sense that it isn't working - nothing's getting bigger."

User
Posted 22 Feb 2020 at 17:05
Seriously , a professional pump that can be used and is supplied with rings for penetration is approx £200. Look at imedicare.com where I got my Somaerect Response2.

If you just want to maintain penis tissue then I’m sure a very cheap £10 Lovehoney.com pump will suffice. Just pump him up each day and hold the vacuum for as long as possible. I use it whilst shaving to spare the boredom , but it gets him good and hard and stretched which is what is needed. Pubes need to be trimmed and I just use soapy water rather than lube which can be a bit claggy.

Good luck

User
Posted 22 Feb 2020 at 20:00
".... and hold for as long as possible"

but not exceeding 20 minutes - or 30 minutes if you are removing the tube and using the restriction bands.

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

User
Posted 22 Feb 2020 at 20:17
Thanks Lyn , yes no longer than 30 mins with a tight band on. I’ve never needed longer than 30 minutes anyway ......:-))
User
Posted 22 Feb 2020 at 21:38

Hi,

Different health boards obviously have different criteria. I went to see my GP earlier this month. He referred me to Urology. They agreed it was the way to go and just over two weeks from the initial appointment I picked my pump up from the pharmacy.

Too early to say how successful it will be as I have only been using it for four days. I was able to achieve an erection anyway but a degree of atrophy has been apparent for a while.  As I say early days with the pump but using it I am able to achieve an erection that matches that of pre HT days and a natural one feels more comfortable and more like me, if that makes sense.

User
Posted 23 Feb 2020 at 04:36
I was offered a pump here in Coventry (Coventry & Warwickshire University Hospitals Trust), I even got the brochures to pick the one I wanted.

I the end I didn’t bother as I was not sure they made one small enough😂😂😂😂

Best of luck.

Cheers, John.

User
Posted 23 Feb 2020 at 10:41
In addition to what I said earlier: When I saw my GP and subsequently the ED nurse I told them (the truth) that my erections were smaller and slightly uncomfortable and the fact that I no longer looked like nor felt like me was effecting how I felt about myself. Maybe that was instrumental in the pump being deemed as suitable for me. Both GP and nurse were quite enthusiastic about it.

Another thing I forgot to mention before is that I was prescribed Vitaros (alprostadil cream) at that GP appointment, as that, as well as causing an erection also improves blood flow. The ED nurse recommended that I use that twice a week as well as the pump. Doc only prescribed four so they were gone before the pump arrived and the paperwork informing him of frequency and duration for more isn’t through yet. The cream does work, although not as straightaway effective as the blurb suggests, but until you get the hang of the applicator it’s a bit hit and miss - literally! 😆

I hope you get some success one way or another.

Dave

User
Posted 23 Feb 2020 at 11:20
I tried one application of Alprostadil in Vitaros cream form to be rubbed on the bell end (glans penis) and poked down the urethra, and I did achieve a throbbing erection about forty five minutes later, but unfortunately it wasn’t the kind of throbbing erections I have enjoyed in the past.

It was bloody painful throbbing and the other three tubes went in the bin.

I hope you get better results!

Cheers, John.

User
Posted 23 Feb 2020 at 11:35

Vitaros did absolutely nothing here - no erection, no pain, nothing, zilch. Hence reverting back to injections after an 8 year break.

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

User
Posted 23 Feb 2020 at 17:54

Vitaros does work for some people, but it is the least effective method of administering Alprostadil, and doesn't work for many people. Caverject is the most effective Alprostadil delivery method. However, you should be trying for more erections than is safe to achieve using Caverject.

Ideally, you want to be on 5mg daily low dose tadalafil and using a pump if you can't get erections. Keep up with the 5mg daily tadalafil even if it doesn't give erections - it improves blood circulation even in the flaccid penis, but if it does enable erections, that's perfect. You may need an occasional 20mg dose to generate an erection, but if you do this, skip the next 2 day's 5mg doses to prevent overdosing on tadalafil (and it will take that long to drop back to the 5mg daily level anyway). None of the PDE5 inhibitors work for everyone, and you might need to try another one for erections, but only tadalafil is effective as a daily low dose to protect the flaccid penis too.

It's a shame some health authorities won't provide penile rehabilitation drugs/pumps. ED drug doses are not effective for penile rehabilitation.

For a pump, the guidelines I got for penile rehabilitation were to aim for 10 mins/day or 15 mins every other day. Avoid leaving it more often than every other day. Pumping it up and letting it down several times may be more effective than pumping up and holding it for the whole duration just once. Don't use constriction rings for penile rehabilitation - only use them if you are having sex, and limit them to 30 mins max. Never allow yourself to fall asleep with a constriction ring on.

If you can get a good erection with PDE5 inhibitors, this is better than using the pump because the pump only erects the visible half of the penis. A good natural or PDE5 inhibitor enhanced erection will erect the whole organ, including the half inside the body. However, both PDE5 inhibitors and pumps have a roll to play, and you can use both.

User
Posted 23 Feb 2020 at 20:26

Originally Posted by: Online Community Member
Don't use constriction rings for penile rehabilitation

I can't remember who but someone on here was prescribed a make that uses rings at all times, even just for rehab - it doesn't work without them. Definitely not the ErecAid Esteem or Farnhurst Elite but I can't remember the details. 

The collective knowledge accrued on here over a number of years is that the pump should be used 3 x a day if possible, for example on waking, after work and then at bedtime, to attempt to replicate the average of 10 erections per day that a man (who hasn't had PCa treatment or other health problems) would normally have. The vacuum should be pumped slowly with regular pauses to allow blood time to be drawn in, once at optimum enlargement it should be released - repeat 5 times. If it hurts, stop - poor technique can cause Peyronie's disease. When J started, he could just about get to the first E of 'Esteem' written on the side of the tube - with practice he was able to get to the 3rd E 😉

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

User
Posted 23 Feb 2020 at 21:13
The booklet in the box gives pretty comprehensive instructions for rehabilitation and beyond. The meeting with the rep was pretty informative as well.

Lyn, I’m close to filling the tube - I wonder what happens then 😆

User
Posted 23 Feb 2020 at 21:38
You will probably be inundated with job offers ... in adult films
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 23 Feb 2020 at 22:12
😁😁
User
Posted 23 Feb 2020 at 22:37

I'm waiting for Caverject to become available again i used the last one i had just before xmas.  Still waiting so started with the vaxaid again. I'm not a fan but read that it helps to keep the tissue inside my penis from scaring. I've only used it twice last week but i dont get a hard erection just a floppy red one ,ok for masturbation but not penetrative sex. Any ideas how i can improve on the results I'm getting will be great fully recieved.😀

User
Posted 23 Feb 2020 at 23:02

Allgone

Google " how to perform soft penetration" you may find it useful and a wonderful experience.

Thanks Chris

 

User
Posted 24 Feb 2020 at 00:33

Originally Posted by: Online Community Member
I've only used it twice last week but i dont get a hard erection just a floppy red one ,ok for masturbation but not penetrative sex. Any ideas how i can improve on the results I'm getting will be great fully recieved.

 

An erection with a vacuum device will never be rock hard like the days of your youth, because although it can draw down blood to engorge the penis it does not engorge the area around and behind the base of the penis which allows you to aim it at something. It will always be a bit floppy from the restriction ring back towards your pubic bone. If you mean that from the ring to the tip of your penis is a bit floppy, you haven't got the technique quite right

- if it gets properly hard when you pump and then flops when you remove the tube, you are either fumbling when transferring the ring (thus releasing some of the vacuum) or the ring isn't anywhere near tight enough

- if it seems okay with the ring to begin with but then starts to droop quite quickly, the ring isn't tight enough - try different sizes and combinations; John needed 2 rings on at once (one that came with the Erecaid and another from Farnhurst which wasn't really compatible with our pump but we found more effective than the Osbon ones)

- if it doesn't fully engorge in the tube, you may not be getting a proper vacuum - have you trimmed your pubes, do you use lube on the bottom edge and inside surface of the tube, are you holding the tube firmly and squarely against your pubic bone? 

- if it doesn't fully engorge in the tube but you are pretty sure you are getting a good seal, it may simply be that you are pumping too quickly and not pausing often enough for the blood to draw in properly. 

 

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

User
Posted 24 Feb 2020 at 00:35
PS - I think you may be in for a very long wait for Caverject supplies - the national shortage is getting worse not better. Why not ask the GP or ED nurse whether you can change to Viridal?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Feb 2020 at 17:15

Collecting a starter pack of viridal tomorrow in the morning, looks like wife permitting I'll be back in the saddle in the afternoon yehaaaa😎

Saw my consultant this morning to discuss my psa blood test which was <0•01 he said the next test will be every 6 months so unless i get run over by a bus I'll be around for few more years yet!

 

User
Posted 26 Feb 2020 at 19:36
Good luck mate. I used Viridal also. Alprostadil never really worked for me at all in any form but left me with horrendous after pain always. Invicorp was the golden chalice. Total normality
 
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