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Willy

User
Posted 18 Jun 2016 at 08:41

Help my name is henry Sinclair and I suffer from erectile dysfunction ( there I've said it ) I had my prostate operation 18 months ago and its not my fault I have this condition yet i feel so ashamed of being like this
I have a vacume pump which I use twice Dailey ( there I've said it ) I have tried all the oral meds and have been 22 rounds with the caverject and to be honest the caverject won every round,it did work but the pain for me was too much and i also have a significant bend in my willy ( there I've said it ) I am at the stage now were implant is an option
How i wish I could be a man again, even if you don't use you're willy for sex having lead in your pencil wakes you up in the mornings it gets you out of bed it gets you shaved and cleaned it puts a spring in your step it gives you you're va va va boom
I am sorry if this post offends anyone, I know talking about men's bitts is a taboos subject

Edited by moderator 18 Jun 2016 at 09:33  | Reason: Not specified

User
Posted 18 Jun 2016 at 10:43

Hi Henry

if you read through the posts you will see ED is not a taboo but a hot topic with plenty of advice.

Ray (ED for now nearly 12 years- there I've said it -:) )

User
Posted 18 Jun 2016 at 11:34

Please forgive my spelling and grammer

User
Posted 18 Jun 2016 at 12:16

I hate the PM facility :-(

When you use the pump, do you get properly large inside the tube? You have to get the technique right before you can use the rings. John felt silly with the rings on but after a while of not having intercourse, 'silly' is not as important or damaging to your mental health as 'frustrated' or 'ashamed'

You have nothing to be ashamed about - this is not your fault.

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

User
Posted 19 Jun 2016 at 13:48
H

Go to the show search box near the top of the page and search for penile, that should bring up about six conversations.

Thanks Chris

User
Posted 19 Jun 2016 at 16:31
The only 2 I know of are DT3993 and Rugby Dave - check out their profiles (I think Rugby Dave kept a blog).

I am sure they would me more than happy to advise if you send them a private message.

I believe Haggis was thinking of an implant but not sure of the latest.

I hope this helps - good luck!

Edited by member 19 Jun 2016 at 16:36  | Reason: Not specified

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User
Posted 18 Jun 2016 at 10:43

Hi Henry

if you read through the posts you will see ED is not a taboo but a hot topic with plenty of advice.

Ray (ED for now nearly 12 years- there I've said it -:) )

User
Posted 18 Jun 2016 at 11:12

Hi Henry, I see you have been a member for quite a long time so you have probably read all the relevant threads but just in case, have a look at this http://community.prostatecanceruk.org/posts/t9839-One-wife-s-story-of-ED#post119001

You will see my friend that there is nothing we can't talk about on here (as long as it isn't discriminatory or offensive)

It is great that you are using the pump regularly - do you also use the construction rings and use it to have sex? Have you tried Levitra which sometimes works for men that have had no luck with Cialis or Viagra.

Did the bend in your willy (Peyronies Disease) exist before you had the RP or is it a newish problem?

And final question from me, do you have a partner and if so, are they helping you or making you feel worse?

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

User
Posted 18 Jun 2016 at 11:28

Hey mate
There are LOADS of us on here with very significant ED problems. Some young , some old. Some shy , some upfront. Talk all you want.
Yes it's devastating to some men. I've just turned 49 and am 12 months post op and am on HT. Yes I've tried it all too. Best results with injections and good sex but by god does it feel like it's been slammed in a car door for hours after. Presently using Cialis 5mg daily and good results but a willing partner needed. However despite daily use of pump , in last couple of months I've lost easily 2" of length which is just the icing on a sh***ty cake tbh. If anyone finds it , please PM me.
Keep in touch and best luck. I think I would risk implant if my long term survival was good but I'm still only one year post op and awaiting further tests.

User
Posted 18 Jun 2016 at 11:31

Thank you for chatting so open and honest about ED I have the bend since having operation
I find it difficult to talk about, however it's a bit easier on here because I think everyone understands, I thought about replying privately and thought somehow that would be me not facing up to my predicament
Yes I'm married but find it not as awkward to chat on here if that makes dance
I have tried using retention rings but any movement on my willy and it goes down and I feel stupid with the ring on

User
Posted 18 Jun 2016 at 11:34

Please forgive my spelling and grammer

User
Posted 18 Jun 2016 at 11:44

Do you have an ED clinic ? Worth asking for a re-visit ? Maybe the rings are the wrong size ? Have you tried daily Cialis rather than event doses ?
Some guys find it crippling to talk about which is a terrible shame , even with their own partners. It's the biggest hurdle for some. The pump with Cialis can give great results. I've learned to slow it all down a bit and not panic and just incorporate it in the bedroom.
Feel free to PM me if you have questions you feel unable to air in public.

User
Posted 18 Jun 2016 at 12:16

I hate the PM facility :-(

When you use the pump, do you get properly large inside the tube? You have to get the technique right before you can use the rings. John felt silly with the rings on but after a while of not having intercourse, 'silly' is not as important or damaging to your mental health as 'frustrated' or 'ashamed'

You have nothing to be ashamed about - this is not your fault.

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

User
Posted 18 Jun 2016 at 12:21

Hi Henry, I have not had a RP but because of the HT I have no libido and no erections and also have a bent willy. I was to see the urologist about my Peyrones disease and potential surgery before Dx with PCa but PCa took precedence.

I have been taking Cialis20mg twice weekly and using the pump for the last six weeks and do get results from the Cialis without the pump and also get the same result when I do use it. There is definitely a loss of girth and length and when I have tried to use my Mr Hampton unfortunately the lack of libido takes over and I lose what there is and also lose the interest( what little there was)

As you have found out , now that " you have said it" sometimes it is a problem halved to speak out and share it.

Keep working at it Henry, best wishes to you

Chris/Woody

Life seems different upside down, take another viewpoint

Edited by member 18 Jun 2016 at 14:58  | Reason: Not specified

User
Posted 18 Jun 2016 at 13:25

LE
Yes I get fantastic result with pump and I use it twice daily as I have a bend from operation
My opinion of vacume pump is it is a fantastic tool and I treat it like an exercise just like I would at the gym and my understanding is use it or loose it.I don't know if I could ever get my head around it for sex. I have tried self induced orgasm with it ( best way I can describe ) but I stop because it does my head in thinking what I have become

User
Posted 18 Jun 2016 at 16:44
H

I seem to recall there were some issues with caverjet injections and alprostadil,with men who had Peyronie's problems. Also I know a pump can be used to treat Peyronie's disease but isn't the technique different.

Thanks Chris

User
Posted 18 Jun 2016 at 22:01
Hi Henry

Thank you for your frank and open post.

I can completely relate to all the comments you make so you are not alone. It is over 3 and a half years since my prostate op and whilst health wise I am reasonably ok I have been plagued by ED ever since. If I am honest this drives me crazy but despite everything I am still determined to try and overcome it.

As you say, having lead in your pencil is what gives a man drive. When I look back on my married life my wife and I have had our share of life's misfortunes but an intimate relationship helped to endure these. What I am trying to say is that whilst sex does not solve life's problems or remove them it makes enduring them a bit more tolerable (well that was our experience anyway). Does that make sense?

It sounds to me you have been very proactive in trying to overcome your ED. If you do go down the implant route I wish you all the best with this and sincerely hope you get the outcome you need.

I think it is good that you have been able to break the ice by bringing up this subject on the forum. For me I have found that only those affected by ED/PCa really understand what it like so the forum has been a great help.

Kind regards.

User
Posted 19 Jun 2016 at 06:01
Hi Henry,

Another here with ED and like Chris ( Puffingbilly ) it's from HT. I have not had a RP but have no libido. I am now on daily 5 mg Cialis and also use the pump. As both you and others have said its by being on this site that you realise that you are not alone in how you feel and what you've experienced. In fact if it hadn't been for this site then I don't think I would have sought ED help, having been overlooked by my otherwise great medical team for this.

Like Chris J I also wonder what has happened to the previous size I enjoyed - I did wonder but now I know that's it not unusual I'm more accepting of the situation! However there was an immediate benefit from Cialis and the pump and both girth and (reduced) length have returned.

Aside from the above I've found since dx I have lost most of my previous inhibitions and find that I can talk and discuss this issue without embarrassment now. As you've said , its not our fault we're in this situation.

Good luck and keep going !

John

User
Posted 19 Jun 2016 at 11:54

There are some real nice and genuine people on this site and in thank you all for your support and constructive comments
Are there any penile implanters on here in particular colaplast type as that's what is being considered
My first talk to consultant or Junior man was shock and extreme disappointment was told most men can't operate pump mechanism because its to painful , next the measure he said I would end up with was almost half what expected and the final to finish me off was that the end of my willy would be numb and floppy
Some choice I have. Anyone got advice or information
Henry

User
Posted 19 Jun 2016 at 13:48
H

Go to the show search box near the top of the page and search for penile, that should bring up about six conversations.

Thanks Chris

User
Posted 19 Jun 2016 at 16:31
The only 2 I know of are DT3993 and Rugby Dave - check out their profiles (I think Rugby Dave kept a blog).

I am sure they would me more than happy to advise if you send them a private message.

I believe Haggis was thinking of an implant but not sure of the latest.

I hope this helps - good luck!

Edited by member 19 Jun 2016 at 16:36  | Reason: Not specified

 
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