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Support for ED

User
Posted 12 Dec 2016 at 21:41

So I had my op last Wednesday, no nerve sparing. I wondered what the best route would be to obtaining a vacuum pump, I feel a little abandoned by the urology team at the moment.

 

Also when is the best time to start using one and how long after the op should I start using one? Obviously I cant use one with my catheter in but I understand that the earlier the better to keep penile size and function.

Thanks

Mark

User
Posted 13 Dec 2016 at 00:26
Mark

One of my doctors said three months post surgery. That seemed very long away. I was told I'll be put on viagara first to improve blood flow - with no nerve sparing, viagara won't produce an erection. I was also told I'd have to buy the pump. My urology team don't seem to want yo spend much time on discussing erectile dysfunction. That's one thing I'd tell them to improve upon. If it weren't for this forum and the PCUK website and specialist nurses, I'd be lost.

I'm keen to work on maintaining my manhood. Managing incontinence and erectile dysfunction will be my next two major research projects.

Walter

User
Posted 13 Dec 2016 at 07:25

Do not do any pumping whatsoever until you are given the ok by your doctor. You've got major trauma inside you.
I started at 8 weeks but was demonstrated and supplied with the SomaErect Response 2 by iMEDICARE. It's a great pump and even at 18 months I use it nearly daily. I've rarely used it actually with the rings for sex as I didn't get on with it , but would let it engorge myself with blood at least once a day to keep his tissue healthy.

User
Posted 13 Dec 2016 at 09:19

I noticed that the page on vacuum pumps on this website says to start using the pump within 4 to 8 weeks after surgery.
I don't feel anxious about it at the moment, but I would like to have it in place for when I get the go ahead. Obviously gaining continence will be my first priority.
The thing I don't want to do is be told I can go ahead and use one and then find I have got to wait weeks to obtain one. After having read some of the experiences of people on here, I don't want my penis withering away to nothing. I was pleasantly surprised post-op to find there is very little if no shortening, I would like it to stay that way if possible.

User
Posted 13 Dec 2016 at 09:24

Any man that has ED as a result of cancer treatment is entitled to a proper vacuum pump on the NHS - some CCGs try to get out of it but it is written in the NICE guidelines.

Treatment for ED isn't really the job of your surgeon etc - the responsibility for prescribing (and picking up the cost of such) falls to your GP; although some surgeons / oncos will write to the GP recommending a certain approach the GP doesn't have to comply. Best thing to do is find out whether there is an ED nurse or andrology clinic in your area (some are based at the hospitals in the urology department but others are out in the community) and ask your surgeon to refer you there. If an ED nurse tells a GP to prescribe, it is harder for the GP to refuse.

The most commonly prescribed pumps on NHS are the Osbon Erecaid Esteem, the Farnhurst and the SomaErect.

Note that there is no research to support the idea that prophylactic Viagra helps with nerve repair and recovery of erectile function. The research was about daily dose Cialis but some CCGs / doctors will try to get away with Viagra because it is cheaper.

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

User
Posted 13 Dec 2016 at 09:27

Markac, important not to pump too soon but you have probably seen on my 'one wife's story' thread that my OH had his first dry un-erect orgasm the day the catheter came out :-/

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

User
Posted 31 Dec 2016 at 23:55

Originally Posted by: Online Community Member

After having read some of the experiences of people on here, I don't want my penis withering away to nothing. I was pleasantly surprised post-op to find there is very little if no shortening, I would like it to stay that way if possible.

Hi there, fully understand your sentiments here, let's face it no man wants to think he is less than he was in any sense of the words. but, could I just add a quick word of caution from my experience here, like you I was sure that I had lost no length and in the flaccid state this is true, however once I started to get erections again through use of injections I have found the old fella is definitely not what he was. Use of a pump is a boon and i have found by using the pump first to get things moving and then an injection I can get close to but not back to the old days. That said, being alive and continent is enough, all the rest is the icing on the cake.

Good luck and don't let anyone stop you getting what you are entitled to, you may need to push hard to get what you want.

Edited by member 01 Jan 2017 at 12:47  | Reason: Not specified

Mike

"We know what we are, but not what we may be."

W Shakespeare.

User
Posted 01 Jan 2017 at 07:34

Just a note to say it is ok to use the pump before injecting , but NOT after the injection according to my clinic. You even risk tearing the needle hole bigger under the vacuum and causing bad bruising etc.

User
Posted 01 Jan 2017 at 12:49

Thanks for pointing that out Chris, my bad! my post wasn't clear enough, I blame it on posting too near to midnight on new years eve http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif I have edited my post so it doesn't mislead anyone.

Mike

"We know what we are, but not what we may be."

W Shakespeare.

User
Posted 01 Jan 2017 at 18:16

Both my surgeon and sexual health nurse said it was ok to use the pump 6 weeks after surgery, which I did, and with the ring was able to have sex 2 weeks after that. I had the surgery end August and am currently using the pump 2 to 3 times daily with good effect. (In fact I wish I'd found it before the surgery!!) 

 
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