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Author Topic: More on Frank Talk  (Read 632 times)

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Hawk

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More on Frank Talk
« on: October 09, 2018, 04:00:50 PM »

Few things annoy me more than seeing a forum falsely poses as a patient or medical support forum and then betray the people drawn there for help.  I just had a calm thought through post deleted from the FT forum.  I also found out directly from the administrator that he is going to open another site to sell merchandise.  I notice that he filed for tax-exempt status and that he gets paid for ads on the site.  Since the financial side of putting up a forum is only pennies a day one has to ask what is going on.  Doctors are viewed based on what they donate rather than on skill, experience, and patient outcomes.  I have to ask, where is the need for donations?  Our forum has twice as many members and I have paid for it out of my billfold for 15 years.  A domain name that costs $1 a month or a forum host that costs $1 a week does not require ads and donations.  ???  The answer is obviously in funding a sales site in which he hopes to turn members into paying customers.

It seems the loyalty is not to men seeking help, it is to a money motive and these men represent potential money to the administrator or a tax-exempt organization he controls.   When you see the facts, then the conduct over there begins to make sense.  It was when I viewed them as a medical support site with members as their first loyalty that I was confused.
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hope794

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Re: More on Frank Talk
« Reply #1 on: October 09, 2018, 06:04:39 PM »

I love money like everyone else. But after being affected by Peyronie's and Erectile Dysfunction at 24 years old, trust me, if i would find a solution for those 2 issues i would NEVER EVER EVER EVER!! profit from it, since i know how much suffering this crap brings to a man's life.

My comment ends here.
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24 yo from Italy.Peyronie's probably since 2014.Since then,penis bends of about 10-15°, with a slight twist to the left.Moderate Erectile Dysfunction since 2 years and things getting worse.From pornstar-like to moderately depressed,but still fighting for a solution.

Hawk

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Re: More on Frank Talk
« Reply #2 on: October 09, 2018, 06:49:35 PM »

Like you, I believe in capitalism.  I think doctors and drug manufacturers should earn a good profit for their work and investment.  It is upfront and moral.  What I detest is when a site that pretends to be all about the good men that depend on it and they let other motives take priority.  They justify and rationalize letting ulterior motives get in the way of providing accurate information to the people they say they support.  I saw it once before in the Peyronies Disease forums that used to exist before we came along.  Now we are here and they are gone.

There are a ton of great men on FT that could help and give guidance but the administration and moderator stop it.  Only information that reflects their bias is allowed.

That is why we accept no ads or donations.  While we welcome doctors we accept nothing from them and treat them like every other member.
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pfract

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Re: More on Frank Talk
« Reply #3 on: October 09, 2018, 08:46:17 PM »

Hawk... I could not agree more with you. I doubt my sanity for some time now. Asking myself if I was the only one seeing what was going on. Going crazy after being banned. Seeing members with amazing knowledge being belittled and silenced one after another. I can't thank you enough hawk. This board is helping me so much not to fall into a depression pit....

One only wonders the amount of clones that board has?
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skunkworks

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Re: More on Frank Talk
« Reply #4 on: October 09, 2018, 10:23:47 PM »

That is disgusting re doctors getting good promotion via dollars rather than outcomes on a patient focused forum.

diehardpatriot

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Re: More on Frank Talk
« Reply #5 on: October 10, 2018, 04:33:02 AM »

That is not okay Hawk. Thanks for the heads up. Maybe we should try and get everyone on the Erectile Dysfunction forum we have instead
That is disgusting re doctors getting good promotion via dollars rather than outcomes on a patient focused forum.
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Hawk

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Re: More on Frank Talk
« Reply #6 on: October 10, 2018, 09:10:25 AM »

Diehardpatriot

Anyone familiar with FT knows the solid valuable contributors there like Alibaba, Merrix, etc.  They have both had bans in the past.  I have had posts deleted.  Pfract was/is banned.  Sadly according to the administrator's own post, he wants conversations restricted to; what fears you had about an implant, how did you feel, what makes you happy, where did you find courage to do it, etc he said he does not have an interest in who or how you found a surgeon, what model implant you have, or how it works.  He keeps stating that FT is NOT an information site it is just a "support site to make men feel ok.  He said he is setting up an information site and professionals will give info and he will sell stuff. --------------- meantime I gess the idea is to let men make bad decisions, get their dick mangled, and then come back and the members can make them feel good about their dilemma.

I feel for the unsuspecting men who go there for info.  While there is a lot of knowledge there, it is silenced.  Yet, those that are clueless get to ramble on dispensing misinformation.  I agree that we should build a place addressing Erectile Dysfunction where the member is the priority as we have for Peyronies Disease.  For one thing, we should not have to refer our members to another site period.  A huge number of our members experience Erectile Dysfunction because it is almost as much a part of Peyronies Disease as pain.  We certainly should not be referring them to a forum that does not have the same commitment of giving a free and open voice to the patient/member.  I detest "patient forums" where the "patient" is treated like a surf on the king's domain.  I have never considered this "MY" forum.  It belongs to the members and I facilitate that the best I can.

You are correct, we should at least let all men with Erectile Dysfunction know we are here and invite them.  I am not sure how to best do that when it comes to the guys at FT.  I did invite a handful here by Private Message that I knew were dissatisfied.  I simply will never believe that once any man experiences a forum where you can speak the truth without being dictated to by a bias or ulterior motive that he would ever settle for any other forum.  In very fact, that is why there are no other Peyronies Disease forums.  This one came along with no backing, no sponsors, no experience, and shut them all down.

If you happen to be on FT and want to invite others, please do.  I don't want anyone to register over there to do that.  I am not going to attack their forum.  But it is legitimate if you have friends or acquaintances there to invite them here. Right now I know no other way.  I have considered putting the Erectile Dysfunction forum above the Peyronies Disease sections at least temporarily so those that pop over don't think they in the wrong place but have not decided about that.
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Prostatectomy 2004, radiation 2009, currently 68 yrs old
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Re: More on Frank Talk
« Reply #7 on: October 10, 2018, 01:23:23 PM »


I am not sure how to best do that when it comes to the guys at FT.

Since I cant get in to FT- are their profiles set up like ours where you can add an email address for contact if you want to? If so, you could write down their emails and contact them outside of FT.

Stabler
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Hawk

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Re: More on Frank Talk
« Reply #8 on: October 10, 2018, 01:50:38 PM »

Good idea but I went and checked an no email addresses are available.  The default is to hide email addresses.
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Stabler

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Re: More on Frank Talk
« Reply #9 on: October 10, 2018, 01:55:28 PM »

Hmmm, then I guess those who are already members will have to PM the ones that you think we can help.

Stabler
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Hawk

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Re: More on Frank Talk
« Reply #10 on: October 11, 2018, 11:30:03 AM »

This is an exchange I had today with the FT administrator.  I think it charaterizes theiir "patient forum" as a draw to pull in men for motives and plans they have down the road that are more about them than the men that come looking for help.

Hawk
__________________________________________________________________________________________________________________________

This is a heads up -

My board of directors (who are my bosses) are discussing the ethics etc of you being so vested in Franktalk. Their concern is that it is a boundary issue. They are not at all happy that you are mentioning your forum. They are viewing it as you using FT to promote your forum. I did tell them that you do contribute some good experience. But they asked if i would ever go to your forum and start posting and I said absolutely not. they then nailed me for letting you do the same here.

They do have a point from a professional standpoint. They were very angry about the last post of yours I deleted, FYI. If I went onto your forum and went on a rant about your moderator and then told them to come to FT, you would not be happy, I'm sure.

So, they are watching things closely. They are all attorneys and they run the foundation and are my bosses.

They asked me to let you know;

Paul
_______________________________________________________________________________________________________________________

Paul,

I find this just very strange. I have directly referred literally several dozens of men here over the 6 years I have been a member. In actuality, it could have been hundreds since thousands read our posts daily. Our forum has given a ton of good press and promotion to FT over the years.  I have had administrators and moderators of other Peyronies forums register and post on our forum regularly. We have hundreds of such posts.  I went on no rant as you know and I criticized your moderator's action along with defending him from another accusation.

Having said that, you have the right to choose the kind of forum you want and the right to run it as you choose. I will bow out since you have done everything you could to make clear that my contributions are not wanted or appreciated. I apologize if it took me longer than it should have to get the message.

Thank you for indulging our input as long as you have.
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pfract

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Re: More on Frank Talk
« Reply #11 on: October 11, 2018, 12:25:22 PM »

This is a shocker to me. I am truly perplexed.. Layers? Not wanting you to post on the board? Them watching what you say? LOL
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Re: More on Frank Talk
« Reply #12 on: October 11, 2018, 01:18:25 PM »

I think they are afraid we are gong to be taking their members...

Stabler
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Hawk

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Re: More on Frank Talk
« Reply #13 on: October 11, 2018, 01:31:52 PM »

I think they are afraid we are gong to be taking their members..

They should be far more concerned with all the members we won't be referring to them and the links that will no longer point to their forum.  The title of the forum "FRANK" talk is a joke.  It should be "Fake Talk".
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Prostatectomy 2004, radiation 2009, currently 68 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Alibaba

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Re: More on Frank Talk
« Reply #14 on: October 11, 2018, 09:15:21 PM »

Medical costs in the United States are the highest in the world. 2 years ago when my wife's and my meds increased from $94,000 a year to $143,000, I called a drug rep that I often dealt with to pay for meals at support groups and asked why.  She told me the drug companies were afraid the democrats would win and part of their agenda was to try to control the cost of medical care by lowing drug prices. To counter that, the drug companies jacked med prices substantially with the plan that once the democrats rolled them back, they would be at the same profit level they were before the rollback. Trump won, prices did not go down. They remain at the inflated prices. Your insurance costs more due to it.

Now back to the advertising bit.  There is a reason why drug advertising is illegal in many countries that have free healthcare.  50% of the price of your meds in the United States is the cost of advertising.  I do not know where to find it again but a study broke down the advertising costs of several drug manufacturers and proved it.
Furthermore, despite the "truth in advertising" laws passed decades ago which basically are responsible for the fine print disclaimers at the bottom of the ads you cannot read, advertisers are allowed to BS you.  It has been years since I studied business law, but one of the issues we studied was a court decision that allowed advertising to be somewhat untruthful. Basically, the decision was that "sales hype" could not be considered fraudulent    advertising. I underline the words sales hype because that was the wording of the decision.

There are other forums where the sales hype has become rampant and I expect it has and will damage many men who get a penile prosthetic implants. That is the constant drumming of their ever expanding dick with their AMS/now Boston Scientific implant. The BS ( Boston Sci, not BS) advertising says up to 25% expansion. The proof of that expansion is on a test stand. The fact is, by a study I had posted on FT a while back, the average expansion is only about 5%at the end of 2 years and not the whole implant expands. Expansion is limited by many factors, but mainly the tension of your own corporal bodies that exceedes the tension you can apply against it by pumping it up.  At some point, I expect 1 poster's ever expanding dick to explode and shoot sales flyers out of it all over the place.
   I have been on many forums over the last 20 years and most I left because of the misinformation posted by ignorant people or posters slinging misstruths to sell products as sales hype.  People can be damaged for life, in some cases die. Many intelligent caring people who can properly and accurately help many leave like i have in the past because they get tired of battering their head against the wall trying to counter the BS.  Nuff said for the moment. Cheers all.
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Alibaba

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Re: More on Frank Talk
« Reply #15 on: October 11, 2018, 10:34:18 PM »

Paul's message was nothing less than a threat. I do not like pushy people.
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Hawk

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Re: More on Frank Talk
« Reply #16 on: October 11, 2018, 10:53:26 PM »

Alibaba,  If I ever had a fault, (and I have many) it is that I do not intimidate.  I wondered if he actually thought his "board of directors" "lawyers" means anything to me?  It is a stupid public forum.  The amazing thing is they have a board of directors but cannot set up a forum well enough to make messages of importance sticky or have a forum highlights or a reference section or a dozen other features.

I am going to put a good-bye post on my journal on FT tonight with a link that says it will continue here.  I suspect when he finds it in the morning it will be deleted and I will be banned.  I have no idea what kind of enterprise they are trying to set up but if there really is a Board of Directors they are all as dumb as a box of rocks.
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Prostatectomy 2004, radiation 2009, currently 68 yrs old
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skunkworks

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Re: More on Frank Talk
« Reply #17 on: October 12, 2018, 01:20:33 AM »

Doesn't that essentially prove they're a financially motivated organisation, basically advertising posing as unbiased information?

Hawk

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Re: More on Frank Talk
« Reply #18 on: October 12, 2018, 06:11:15 AM »

Exactly Skunkworks!

They just told Merrix (one of their very most valuable members) to not give out any more information.  Just give out "support".  And specifically not to talk about Rear Tip Extenders because no one wants to hear about that ???  Then why do they think their members make posts entitled "Can someone please explain Rear Tip Extenders" ???  And why would Dr. Eid make a video showing the same man with RTE's and showing him again after a revision that eliminates RTE's ?

Merrix posted to a guy asking a question about his implant function something like - "I think I could give you a pretty good idea of what is happening, but recently the Administrator of the site has been running a campaign to make it clear that this is a support site, not an information site.  Members are encouraged to not give information, but support and encouragement. 

So, My dear Implantee. Don't worry. I am sure it will be ok. Implants are great. Especially AMS implanted by low volume local doctors. Next time, maybe that's what you should get. Don't worry about the problems you have. If you have questions to ask, contact your doctor. Just be strong. We are here to support you. All your brothers think of you and pray for you. Amen."

It is so sad but I have to admit I LMAO!   Maybe FT is going to stand for FUBAR Talk because if there is any place where frank talk is shut down it is there.
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Prostatectomy 2004, radiation 2009, currently 68 yrs old
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Hawk - Updated 10/27/18 - Peyronies Society Forums

TonySa

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Re: More on Frank Talk
« Reply #19 on: October 12, 2018, 05:00:53 PM »

It’s really crazy over there on FT, I’m so thankful you expanded this forum to include Erectile Dysfunction and implants!
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Re: More on Frank Talk
« Reply #20 on: October 13, 2018, 11:50:09 PM »

After a few years that I didn't click on FT, I was surprised to see advertisements, they were not there in the far past.
And me, others on our forum were sending people to get info there :(

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

Hawk

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Re: More on Frank Talk
« Reply #21 on: October 14, 2018, 07:48:03 AM »

The ads are one thing, soliciting contributions from doctors another.  The ones that give you money are the ones you serve.  The point is that anyone interested in doing some work can afford a real patient based forum.  It generally costs very little if you break it down to weekly cost.  the cost is in personal time.  So when people sell ads, ask doctors to donate, you have to get suspicious.

This is a repeat of what existed in the world of Peyronies Disease forums 15 years ago.  There was a forum that had doctors sitting on the advisory board.  It sounds cool to start with, then you discover that they dictate and the member/patients on the forum cannot say anything that they disagree with.  Back in those days, they laughed at men for using VED's and traction for therapy.  Those tools are the product of the patients discovering what works and then the doctors finally jumping on board.  Like many that get a god-complex when they run a forum, they had thought police that told members what to think and what to post.  They would delete posts and actually edit out sentences from your post without telling anyone.  I vowed to make a forum where that would NEVER happen.  When we RARELY touch a post for clearly violating rules, we make a bold notation right in that post.  members have a right to know if they are reading edited material.

BUT

All of that is just the beginning.  The administrator/owner at FT is ramping up for setting up a linked site that sells products and sells a bunch of books he authored.  He is using a forum where men come, thinking they are the priority but finding out he is using them to market himself.  Sites like that have to control dialog.  Stating a doctor's record must not offend that doctor (if he is a donor) or it must not praise him if another doctor is a donor.  If you are trying to sell books with information then you don't want free information readily available on a forum.  You have to convince people they need you to supply the information they seek so you can sell books.  If there is anything I oppose, it is seeing people with problems, desperately seeking answers being lured to a site that is not what it seems to be.  They think they are on a site where they are the top priority, where they can talk as freely as they could in their den or sitting in a bar or around a campfire, only to find out there are thought police sitting in the circle with them.  These thought police are not there to help information flow and facilitate discussion for the good of the group.  They are there to dictate what can be said based not on what is the best interest of the thought police.
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Prostatectomy 2004, radiation 2009, currently 68 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Alibaba

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Re: More on Frank Talk
« Reply #22 on: October 14, 2018, 11:11:31 PM »

I've communicated with merrix from time to time soon being 3 years.  I cannot imagine how much this ticks him off @ FT. The missinformation is what got me into my first crappy implant and I wanted to make sure no-one else did the same. I wonder how long it will take for me to get a warning? Cheers and look outside the box. The view is better.
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Milam 1/13/16-LGX 21cm - BAD service & surgical outcome Hated infrapubic.
Kramer revision 3/1/17 Titan

Alibaba

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Re: More on Frank Talk
« Reply #23 on: October 14, 2018, 11:22:43 PM »

Well said merrix.  I am sorry for the guy who is not going to get the help he needs. DAMN!  If I wanted mis-information, I would just open a twitter account or go to FB and wait for the Russian troll bots to send me some. When administration is sending out such messages, that is some real f'Erectile Dysfunction up $#it!
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Milam 1/13/16-LGX 21cm - BAD service & surgical outcome Hated infrapubic.
Kramer revision 3/1/17 Titan

Hawk

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Re: More on Frank Talk
« Reply #24 on: October 15, 2018, 09:48:40 PM »

This is a heads up -

My board of directors (who are my bosses) are discussing the ethics etc of you being so vested in Franktalk.......They are not at all happy that you are mentioning your forum. They are viewing it as you using FT to promote your forum. I did tell them that you do contribute some good experience. But they asked if i would ever go to your forum and start posting and I said absolutely not. they then nailed me for letting you do the same here...

So, they are watching things closely. They are all attorneys and they run the foundation and are my bosses.

They asked me to let you know.

Paul
I return to this very strange and puzzling private message from the FT administrator.  Can anyone that knows more than I do tell me if 1) it is true that a bunch of lawyers actually do run FT and tell Paul who can post and who can’t post.  2) Or, is Paul just lying.

I am not sure which is most disturbing but I guess I would say number 1).  It would mean that instead of an Erectile Dysfunction forum run by a concerned brother suffering from Erectile Dysfunction that it is run by a bunch of attorneys with concerns, interests, and priorities, far different than the members.  No wonder the members there don’t feel represented by the forum.
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Prostatectomy 2004, radiation 2009, currently 68 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Alibaba

  • Titan 22cm 1.5cm RTE
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Re: More on Frank Talk
« Reply #25 on: October 15, 2018, 10:53:40 PM »

Let me suggest this. An attorney purchase the P.U.D. device rights years ago and markets it. So by that standard, a group of attorneys could possibly own and run FT and his marketing business. For all we know, send me your porn stories Rev. could be fictitious.  One thing is certain. The site has gone through a couple evolutions and certainly not what I thought it was. If you know what state he is incorporated in and it does say Inc. in something he had on the site, you can look up his corporation filing with the secretary of state and see who is the owner, address, date of filing, if they are paid and current, and who the attorney or directors are.
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Milam 1/13/16-LGX 21cm - BAD service & surgical outcome Hated infrapubic.
Kramer revision 3/1/17 Titan

TonySa

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Re: More on Frank Talk
« Reply #26 on: October 16, 2018, 03:28:39 PM »

WhatsPUD?
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PxD 2 yrs, failed all tx. 9/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS 18cm + 3rte

Alibaba

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Re: More on Frank Talk
« Reply #27 on: October 16, 2018, 08:39:08 PM »

Pfract,  Penile Uncircumcision Device. There are 2 basic design styles.  Basically a weight for foreskin restoration. I could post pictures of my device if I understood the picture aspect of this site.
The PUD Foreskin Restoration Device    Although I have used this device and have no complaints about it, this is not an endorsement.  I do support foreskin restoration and have a big issue with circumcision but that is my person view. Several of the foreskin restoration devices have been purchased by attorneys and turned into business ventures in the last decade.
As I have said before, there is almost nothing I;ve not tried for E.D. over the years. Cheers.
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Milam 1/13/16-LGX 21cm - BAD service & surgical outcome Hated infrapubic.
Kramer revision 3/1/17 Titan
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