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Posted 7/30/2009 2:17 PM (GMT 0)
Guys,
about a year ago when my ED was at its worst, I was really looking for info, help and a support group online. I was so frustrated that I couldn't find the ED version of HW. At the time, there was a bit of a scuffle online when it was discovered that a 15 year old daughter of a PCa patient was looking for help and some of the topics were quite graphic sexually. HW is primarily a PCa website - dealing with fighting cancer - and yes, the attendant side effects from treatment.

But for really blunt, no-holds-barred questions, it was off limits. So, I have just launched a new website - still in its infancy - for ED. As it turns out, I think it is the only stand alone ED support site on the net. I will be adding pages describing each level of treatment - complete with graphic, explanatory photos. My wife says guys don't read instructions, they can only follow pictures. Sigh...she's right. But right now, the Forum has just begun and I would love your input.

FrankTalk.org (note ORG...not COM) is my wife's name for the site, since that is what it will be for. Guys able to ask ANYTHING at all about ED. no shame - talk however you're comfortable.

To keep the site safe from pervs and spammers and creepy people, you need to register, get approved and each post at this point gets approved. The site admins insist I have to do this to keep it safe. They are probably right, and I'll do whatever it takes to make this a safe place for guys to get some help about this subject that affects so many of us....even the non-Pca guys.

I offer it to whoever needs it.
Thanks
Paul
Posted 7/30/2009 2:26 PM (GMT 0)
Paul, sounds like an excellent idea. I suspect it's a lot of work to set up a web site and maintain it. Good on you!

Sheldon AKA Sleepless
Posted 7/30/2009 2:44 PM (GMT 0)
Paul,
I like the idea. I am waiting on my surgery in two weeks and attend a Local Prostate Cancer support group meeting one time a month.
It seems that the men at the support group only want to talk about Urine control and the surgery itself. I've tried to ask about the sexual side of things but they always seem to be embarrassed or not want to talk about it and the subject gets dropped.
Posted 7/30/2009 4:26 PM (GMT 0)
Hi Paul,
Good luck on this project. I think it is a great idea. It will serve as an excellent suppliment to forum boards like HW and many others. As you know we have a HW rule that limits certain graphic content and the reason is HW does not want to have to place warning labels and require logins on it's website to view it's discussions on such matters ~ but we have a relaxed policy in the prostate cancer and AIDS forums as graphic discusion is medically part of the illness. The other forums here at HW don't like it much that we get exceptions, but it is part of the disease that we have issues with erections and ways to combat it with somewhat erotic discussions. I personally have found in the past that holding the discussion to the letter of the rules is a difficult task, and frankly unwanted moderating. Since we have changed the approach to allowing it if we can medically classify the discussion, and when it comes to links, we allow graphic links if they are approved and have proper warning messages. One such example is the links that Gene214 has provided that includes actual video demonstrations of how implants operate. We encourage the guys to be aware of our youthful watchers, even rare as they are, so that we don't get hit with an XXX rating to the website.  ED discussions are fine here and absolutely on topic. 

Your website provides a method of taking it further and is properly setup with logins and warnings. This is a good thing for those who would like to be even more graphic...

Again, thanks Paul...

Tony

Posted 8/1/2009 12:07 AM (GMT 0)
Tony,
Thanks. Just wanted to reiterate that it was NOT due to discontent with HW that lead to this. It is more the realization that guys need a place to go that is like HW in many ways, but able to be a bit more themselves in the dialogue. My surgeon, who encouraged me in this, told me that he separates the guys into two group(Pca fighters and ED fighters) since the needs of the two groups of men are so different.
Thanks for your support.
Paul
Posted 8/1/2009 12:11 AM (GMT 0)
Paul, I hadn't had the chance yet to thank you for what you are doing. I think it is a good thing and it looks like you are putting a lot of thought into the mechanics of it. ED is a major issue with most men with PC, and a place where you can lay all your cards on the table, and talk frankly and openly is a good thing. Collectively, I think our group has an amazing amount of experience, research, and knowledge.

Good luck with it, I will have to check it out soon. I personally was one of the fortunate few, and do not currently have any ED problems, but not to say with future treatments that may all change.

I support what you are doing.

David in SC
Posted 8/1/2009 3:31 AM (GMT 0)
Tony --- I just wanted to say, excellent approach and post above. I think you've hit an excellent balance. (As a sometime writer, I hate to use the same word twice but "excellent" is THE word here.)

Sheldon AKA Sleepless
Posted 8/1/2009 6:39 PM (GMT 0)
Thank you, Sheldon,
Not always easy to be diplomatic, but in the role of a facillitator you have to do the best you can...We don't have many young folks coming here, but we do in the other forums at HW. It would be a shame to block freely viewing this valuable site due to graphic content in one forum. I am certain those visiting the Lyme disease and other forums wouldn't understand...

Tony
Posted 8/1/2009 9:34 PM (GMT 0)

Hi Paul,

I think your forum is a great idea. I'm stuck in the twilight zone between my RRP and my first post-op PSA (some anxiety, of course). I seem to healing very good except in one department. The VED certainly helps, meds aren't right now.

I know I'm very lucky to have recovered quickly from surgery and for all practical purposes, I was probably continent within a day of catheter removal even though I wore pads for a week or so.

My prostate cancer Dx was last December. I had surgery in May 09. I hope the surgery removed the cancer. I have no problems with leakage of any sort from my bladder.

I have issues with rectal pain, penis pain and ED since surgery. Doc says rectal pain should subside, penis pain unknown...off to a specialist and ED...well, no guarantee there.

Doc told my wife "both nerves spared" after surgery. I've had some half-mast activity that has not improved, even with meds. VED gets me to maybe 75% for some fleeting moments (not ready for the rubber-slide-on-vice-grip yet). But, at least it's consistent and it's therapy and I will continue. Orgasms stink and are even uncomfortable sometimes.

Good luck and thank-you for your efforts.

Mike

Posted 8/1/2009 10:55 PM (GMT 0)
Great idea. I am sure it will be great but lots of work in the process.
Posted 8/2/2009 3:39 AM (GMT 0)
PAUL:  What can I say that has not already been said.  Wow  this is great such a need.  Thanks for you time and efforts.  So many of us with questions and frustrations...

Thanks

Jeff

Posted 8/2/2009 5:31 AM (GMT 0)
Tony I will have to check it out This forum has been great but the mor the merrier ok, The marry her , Thats what I want to find out about , I married her so I want to keep her happy (and me)
Thanks
Timmy77
Posted 8/2/2009 8:37 PM (GMT 0)
Paul, Thanks for putting this together. As I am only 12 days post surgery I don't know if I will need it. But, it sure is good to know it's out there.
Thanks
Jeff
Posted 8/3/2009 12:24 AM (GMT 0)
Ok, I signed up. Used same handle. See you guys over there.
Posted 8/3/2009 12:29 AM (GMT 0)
Great idea Paul.  I'll stop by and check it out one of these days.  It definitely sounds like something we need.  David
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