GENERAL COMMENTS & Questions - that won't fit under any of our other topics

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Hawk

This area is for those comments that somehow relate to Peyronies Disease but are not coverered under our other topics so please read the topic titles.  If a comment and responses develop into a discussion of enduring interest, we will make a new topic for that subject and move all the related posts to their new topic location.

This becomes a very natural way to establish new topics.  If you initiate a comment that attracts significant discussion, that becomes a new topic.  If it only supports a brief exchange, then those remarks remain here as valuable posts under "General Comments"

As with all topics on PDPDF everything relating to Peyronies Disease is on the table and open for honest constructive discussion.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Old Forum

Hawkman, Site Admin         Posted: Sat Jun 25, 2005      3:34 am      

QuoteHappy Go Lucky wrote:
This site claims you're 7 times more likely to get Peyronies Disease if you smoke, though they didn't offer a study to back it up:

http://thescooponsmoking.org/xhtml/effects/peyroniesDisease.php

But do you guys think smoking and drinking can worsen the condition?

I hope not, it'd be nearly impossible for me to quit now.


Happy, keep in mind that is a "Stop Smoking Site". I am not saying it is not accurate but they may have an agenda.

By the way, I have known people that stopped smoking way way older than you.  



Old Forum

Posted: Sat Jun 25, 2005 5:39 am     GUEST

Yeah, you're probably right about them having an agenda. It is strange that they're the only site to make such a claim.

btw, I meant it would be difficult to quit not because of how long I've been smoking, but because of how miserable my life is right now. Smoking offers me some relief from the stress, which I desperately need.

Do you have an opinion on wether it contributes to the progression of the disease?



Old Forum

Posted: Sat Jun 25, 2005 12:46 pm      

Hawkman
Site Admin


I have no opinion on that and it would probably be wothless if I did since I have nothing to base an opinion on. It would seem a bit strange that they would just pull that piece of information out of the air with no basis.

I do have an opinion that both smoking and drinking can increase liklyhood of ED. Smoking by causing diseased arteries and drinking by reducing hormone levels. I don't think it is too far-fetched that they could impact Peyronies Disease.

However, like the old joke that leaves me out of luck because I do neither. i don't even have anything I can quit.  

Someone else must have some information on this.



Old Forum

Posted: Sun Jun 26, 2005 12:10 am      

dcaptain

Hey Happy, I have absolutely no idea whether smoking would contribue to Peyronies Disease, HOWEVER, if you ever do want to quit smoking, I have a book I'd recommend. I smoked for ten years and quit a year and a half ago with Allen Carr's book "The Easyway to Quit Smoking." It's somewhat poorly written, but his concepts are dead on. In NO WAY do i have any ties whatsoever to anyone related to quitting smoking - I'm just saying that book really worked for me. Granted, it was a rather tough month; I was crabby for a few weeks, but it does get better. Just tossing that out there. (Of course, just learning you have Peyronies Disease certainly is a difficult time and waiting a bit might make sense too.)

dcaptain



Old Forum

Posted: Sun Jun 26, 2005 3:07 pm      

Joshua
Moderator


Vessel constriction from smoking could have a role. I don't think it would be a cause but it could cause the situation to be worse. I would refrain from smoking to help Peyronies Disease. I have never smoked but I still got Peyronies Disease. However, I have seen very good improvement in my condition and not smoking may have helped allow that.



Old Forum

Posted: Mon Jun 27, 2005 4:13 pm      

Talon
PDPDF Newbie

Hey all,

If smoking were the cause then there would be a HECK of a lot of Peyronies Disease pateints out there, lol..

But the research shows that smoking can be bad for tissue development and that could slow down the healing process.

Food for thought..



Old Forum

Posted: Mon Jun 27, 2005 11:52 pm      

j
Voting Member


Since this is the 'general' topic, I'll change the subject.

I see two possible problems with this forum compared to the BSTC forum.

1. How will newcomers find it? If you Google on Peyronie's you'll eventually find BSTC. But this forum has no associated web site. Right now the users that are here probably all came over from BSTC.

2. On the (admittedly chaotic) BSTC forum, users could create new threads and posts to old thread bumped them to the top - so if you tuned in only once in a while, you could go right to the latest chatter. On this forum, the topics are fixed so we'll end up with a fixed set of threads each of which is 10 miles long. I guess that's good, and bad.



 

Old Forum

Posted: Tue Jun 28, 2005 2:46 am      

Hawkman
Site Admin


J,

Your are dead right on the first point. Here is the solution. I actually purchased a domain name and will be setting that up when I get a break. The next step will be to design a basic web page similar to the APDA who we plagiarize (a little light-hearted sarcasm). Then we will get picked up (listed) on some search engines and we are off.

On your second point, this software works a bit differently than the BTC which is both disorderly and obsolete. The problem is that like an old glove the BTC fit well and it will take a bit to get used to this forum style. If I understand you, you are incorrect that the latest posted topic does not pop to the top of the page. For instance this Topic or thread "General Comments and Topics" will be at the top as soon as I post, and will stay until some one posts in another topic. That is pretty much like the BTC.

Here are the differences. When you go into the thread or topic the most recent post is at the bottom. You read down just like reading a book. The other difference is that the users cannot make new topics here. They can suggest new topics and we will add all we need or want. We are just trying to avoid 30 threads on VEDs scattered through 600 other threads. Here if you remember reading a post about a month back on some new OTC supplement you go to that topic and scroll down. Actually you have powerful search here that will blow you away. If you experiment a bit I think you will love it. On the very first forum page you see look at the top of the page and click on search. What I would give to have that at the BTC where much valuable info is lost in a scrap heap. Also on the same page on the right just above the wide blue line you can click on view posts since last visit. You can be gone a day or a year. They will pop up no matter what topic they are under. You will see you can also pop up all your own topics. On final point. If you click on "Members" at the top of the page then click directly on the members name it will pop open an info box. In there you can click on find all of this members posts. If you play with these a bit you want to strangle the owners that put up the BTC forum.

I hope this made sense J, Click around with it and let me know what you think.

PS: On last point. If you look just under the last post on this page You will see that you can change where it says "Oldest First" to "Newest First" and click on "GO". Now it will be just like the BTC.



Old Forum

Posted: Tue Jun 28, 2005 9:16 pm      

j
Voting Member

 
Joined: 25 Jun 2005

I get it now. Thanks.



Old Forum

Posted: Wed Jun 29, 2005 2:37 pm      

Hawkman
Site Admin


j,

My post to you said' You are dead on the first point." I ment to say you are dead right on the first point"  

I corrected it in my original post.


Give some feedback on how you like the forum setup since you have clicked around.



Old Forum

Posted: Wed Jun 29, 2005 9:02 pm      

j
Voting Member


Yeah I figured that out too  

Well what do you think about some additional threads - instead of just one for 'non-oral treatments', maybe one for VED, one for Verapamil, one for AA4500/Collagenase and so on. As time goes by those threads might accumulate some useful information on the respective therapies.

Did you notice that today Auxilium announced 40 million in new investment? If you agree with me that AA4500 is currently our best hope, this is big news. In fact maybe there could be a 'news' thread.



Old Forum

Posted: Wed Jun 29, 2005 10:34 pm      

Joshua
Moderator


Good Ideas J
Would you moderate them?
We need some more guys involved.



Old Forum

Posted: Wed Jun 29, 2005 10:48 pm      

j

I was afraid you were going to ask me that, but I'm not ready to commit to being a moderator. I have too many other things going on and I'm afraid that I wouldn't be able to do a good job. I won't rule it out for the future, though - I'll think about it.



Old Forum

Posted: Thu Jun 30, 2005 12:25 am      

Joshua

We will save a spot for you and of course we will bug you every now and then  

Thanks for being a positive part of the forum.



Old Forum

Posted: Tue Jul 05, 2005 10:43 pm      

ANTONIO


Hawkman

For what it's worth, I believe you've done an outstanding job on the new site. This truly is "our forum". I feel like I've found a safe haven in which to express my thoughts, concerns & find information to improve my Peyronies Disease condition without having to deal with all the crap from Brand-X forum. I would think the growing number of new membrs feel the same way.

Hawkman, you have the patience of a saint. Don't let all the negativity and attacks get to you. If you bail, where would we go? Don't getme wrong, I don't believe for a second that you'd walk on a commitment you made. I'm just not certain I could put up with all the criticism that you have, after putting in the many hours of work you obviously have to make this site work.

Thanks for all you do

Antonio



Old Forum

Posted: Wed Jul 06, 2005 3:49 am      

Hawkman


Antonio,

Even an ex-cop, ex-corrections, cynic appreciates a kind word. It seems like a breath of fresh air. Now that I enjoyed that for a few minutes, the truth is that all of you are the push that gives this the promise of success. You will always know you were here when it started and you breathed life into the forum. I appreciate all of you. I hope we are all beginning to appreciate and respect each other.

As far as me leaving is concerned, I have worked maximum security cell blocks in Federal Penitentiaries. I have walked like an occupying soldier in enemy territory among cells of hatred. I have had convicts with 5 life sentences threaten my life and try to intimidate me, I have had well know organized crime figures try to bribe me. I think I will withstand a bit of immature ranting on a Peyronies Disease forum. I don't share any of that to impress anyone. It is no big deal, it is just how it is. Commitment means a lot to me and I am committed. Even when I go, the forum stays, because it is not mine to take. It really never was about me.

Thanks Again Anthony for the input. I welcome positive and negative input. It is the only way we can know what you want. Offending me is of no concern, so never think twice before you spout off to me.

Hawk



Old Forum

Posted: Fri Jul 08, 2005 9:02 pm      

j


Is it just me, or are all the message times wrong for other users too? When I look at the forum all the messages are time-stamped about 4-5 hours ahead of Central Standard time. That puts this forum out in the Pacific somewhere  



Old Forum

Posted: Sat Jul 09, 2005 12:00 am      

Hawkman

J,

Here is a section from the "Read Second" post on the "Read First" forum. I cut it and pasted it. Maybe it will help. My times are correct for Eastern Daylight Savings Time.

Quote:

PROFILE: Here you can update any of your registration information and what others see when they click on Memberlist. One important item here is Timezone: near the bottom of your profile window. If you are not in the Eastern Time zone of the U.S. your forum times are probably incorrect. Put in the GMT conversion for your area. If you don't know what it is, then click on your map after you click directly on this link:

http://wwp.greenwichmeantime.com/time-zone/  



I could have just made this easy by telling your time zone is -5 GMT if you are in Central Daylight Saving Time Zone, but I really wanted to rub it in for not reading my agonizingly boring post on forum navigation.



Old Forum

Posted: Sat Jul 09, 2005 1:31 am      

j

So! It was just me. Or, me and any others who didn't read the instructions. And my times weren't 'ahead' as I said, they were 'behind'. Anyway, thanks, it's fine now.



Old Forum

Posted: Wed Jul 13, 2005 9:08 pm      

dn


hi i am only 18 years old, have no sexual experience and am seriously confused. For as long as i can remember, i have always had a scar on the bottom of my penis. Now it curves downwards about half way through (3 inches in) and points about 10-15 degrees downwards. if anyone could please answer these questions it would help me a lot
1) do i have peyronies?
2) will i physically be able to have sex? will i not last long since there will be more friction?
3) is there anything more i can do other than vitamin E supplements, which arent working by the way.
4) what kind of dr. should i see, what should i do in general. TY so much for your help



Old Forum

Posted: Wed Jul 13, 2005 9:17 pm      

j

Mechanically speaking, 10-15 degrees is not much. The human anatomy easily accomodates that much irregularity, and more. Many of the guys here would consider themselves "cured" if they could get back to 10-15 degrees.

As far as the 'scar' - Is it possible you had some sort of minor corrective surgery as an infant, which your parents haven't told you about? It's not uncommon.



Old Forum

Posted: Thu Jul 14, 2005 7:31 am      

Hawkman


Thanks for posting. In addition to J's remarks. that were right on target, I would add a question or two along with a couple comments .

Quote:
Now it curves downwards about half way through  

When you say "Now" does this reflect some sudden change, or a condition which has always more or less existed? If this represents a sudden change, you would start with a good urologist. If this represents your own natural curvature that has been with you through puberty, I would just appreciate it as a unique, normal part of who you are.

Quote:
i have always had a scar on the bottom of my penis.  
Is this an obvious scar or is it a subtle line or discoloration? If it is an obvious scar and your parents are available to ask, I would suggest you ask them. You can ask directly, or with some humor or subtle approach that works for you. It is not likely to be critical information but may be useful medical history down the road at a time when they are no longer available to ask.



Old Forum

Posted: Fri Jul 15, 2005 4:08 am      

Caspian

Happy wrote:


Do you have an opinion on wether it contributes to the progression of the disease?


I have one word for that claim: Ludicrous


_________________
You are what you iz



Old Forum

Posted: Fri Jul 15, 2005 12:21 pm      

Caspian

Hawkman wrote:
Antonio,

Even an ex-cop, ex-corrections, cynic appreciates a kind word. It seems like a breath of fresh air. Now that I enjoyed that for a few minutes, the truth is that all of you are the push that gives this the promise of success. You will always know you were here when it started and you breathed life into the forum. I appreciate all of you. I hope we are all beginning to appreciate and respect each other.

As far as me leaving is concerned, I have worked maximum security cell blocks in Federal Penitentiaries. I have walked like an occupying soldier in enemy territory among cells of hatred. I have had convicts with 5 life sentences threaten my life and try to intimidate me, I have had well know organized crime figures try to bribe me. I think I will withstand a bit of immature ranting on a Peyronies Disease forum. I don't share any of that to impress anyone. It is no big deal, it is just how it is. Commitment means a lot to me and I am committed. Even when I go, the forum stays, because it is not mine to take. It really never was about me.
Hawk


WOW! Not everyone could handle being a corrections officer or a cop. I know I couldn't. I thought you worked with animals or something?


_________________
You are what you iz



Old Forum

Posted: Fri Jul 15, 2005 12:36 pm      

Hawkman


One is an occupation, the other is a hobby.

Actually there are enough Cops / Ex-cops on this forum to question a connection with Peyronies Disease  

Strangely, Peyronies Disease stands for Police Department as well as Peyronie's Disease. I wore collar brass for years with "Peyronies Disease" on it. Never did I dream that those initials would take on a whole different meaning. In my life.



Old Forum

Posted: Fri Jul 15, 2005 1:07 pm      

Caspian


Hawkman wrote:
Actually there are enough Cops / Ex-cops on this forum to question a connection with Peyronies Disease  

Strangely, Peyronies Disease stands for Police Department as well as Peyronie's Disease. I wore collar brass for years with "Peyronies Disease" on it. Never did I dream that those initials would take on a whole different meaning. In my life.


LOL! That was way too funny.


_________________
You are what you iz



Old Forum

Posted: Fri Jul 15, 2005 3:48 pm      

DN

thanks for your help hawkman, you asked me 2 other questions, here are the answers

1)There is no sudden change, but throughout puberty i've noticed it get slightly worse as my penis got bigger. i really noticed the diff between my penis and those in pornography about 2-3 years ago and i figured it was because of the way i masturbated, i changed that, but there was no improvement. Thats why i blame it on the scar.

2) It is an ObBvious scar, its red, and its not j ust a mark, it portrudes slightly, like 1 mm or so. Maybe 2 inches in length when i'm erect. My dad who has the maturity of a teenager once slipped in that something was wrong w/ my dick when i was a kid but he said it in a way that he wanted to embarrass me :S i'm really just embarrassed to ask my parents what it is but i guess i'll have to.

its hard for me to find a urologist b/c i dont have a family dr. so i gotta do that first :S thx for the help man.



Old Forum

Posted: Fri Jul 15, 2005 4:05 pm      

Hawkman
Site Admin

DN,

You are more than welcome. I hope it all works out. I would not be too alarmed with 15degrees if it seems it has stabilized. Just consider it an enhancement. Keep us posted and in the unlikely chance it becomes an issue, you are welcome here as a member.

I will be hoping that you not have that misfortune.

If nothing else, maybe visiting the forum helps you see the penis is not indestructable as we tend to think when we are your age.

Hawk



Old Forum

Posted: Wed Jul 20, 2005 2:54 am      

dcaptain
Voting Member

Hey DN,

As to your point #2, just remember that this is your health, and that nothing is more important than that. Anyone should respect you for taking the appropriate steps to address this now; I hope you don't have to go through any similar "kidding" when you talk to your parents this time. Best of luck to you in talking to them about it and in reaching out to get a urologist. If you need any support or want to ask more questions, this is the place.

Good luckl.

dcaptain



Old Forum

Posted: Sat Jul 23, 2005 5:11 am      

Rzz

Hello everybody. I go by the name Rzz. Some of you may know me from some of the other forums. However for those that don't I'll give you a quick run down. I'm middle aged, divorced and live in the Eastern USA. I served in the Marines for 4 years and fought in Desert Storm as a reservist. I'm a district manager of 9 national known retail stores. I'm a historical author with 2 published books. Had Peyronies Disease for about 7-8 years now. Also have DC in left hand. Been to six different urologist. Two were quakes, two were so-so and 2 were very good, Dr. Levine being one of those. I've tried 4 conventional treatments (3 no success, 1 very mild success) and 3 non-conventional (2 no success, 1 some success). I've heard of just about every treatment there is. Some I know very little about, some I know fairly well and a few I'm very knowledgable about. Although I've done tons and tons of research on Peyronies Disease and Peyronies Disease related topics, I'm still learning everyday and some of that knowledge comes from these forums. I hope for this forum is that we can learn from, help each other and teach each other how to cope with this horrible disease we've been stricten with. Not only do I truly enjoy helping others with the knowledge I've gained over the years, by doing so is therapy for me and helps me cope. If I can help anybody in any way, please don't hesitate to ask. I will be more than glad to do so. So until next time. Respectfully, Rzz



Old Forum

Posted: Sat Jul 23, 2005 6:09 am      

Joshua
Moderator


Rzz,

Welcome to the forum!! I have read many of your fine posts on the BTC forum. This has allowed me to gain a great deal of respect for your general knowledge and opinions concerning Peyronies Disease issues. I am so glad you are posting here. I hope to pick your and pdftd's brain concerning DMSO treatments. I am very fascinated with the possibilities with DMSO. When you get a moment please scan the DMSO section and consider commenting on my posted questions. I would appreciate your input.

I think you will enjoy the forum! We are glad you have joined!

Joshua



Old Forum

Posted: Sat Jul 23, 2005 8:34 am      

Rzz1


Joshua,
I'd be happy to address some of your DMSO questions. Which ones on the posts did you have in mind? PDFTD has already answered many of them. He is very knowledgable on the subject. However, if you want me to address some of the question he's already addressed, I can do that, but there's very little I'd change. Maybe add a little, but I wouldn't change much. As he said, we are in 100% agreement on the mixture. As far as the rest of DMSO and Thacker's Formula, I'd say we are in agreement on about 90%-95% of it. We have some slight disagreements on exactly why it works. Also some on application. Not mixture mind you, but application. Some people get those 2 confused. In theory, mixture is indeed technically part of application, but they are still 2 seperate things. Think of application as being the whole book and mixture as being a chapter in that book.

Recently I developed a theory as to why the formula works better on some than others and why it seems to not to work at all on some. However, remember it is just a theory and nothing more. Actually it's more of an idea than a theory because a theory has to have at least some type of quantitative scientific backing.

So pick 3-4 questions you want me to address and I'll do it. After I address those questions and you have more, I'll be happy to address those as well, but for now just give me 3-4 to get the ball rolling.

By the way, I'm new to this forum and I'm still trying to figure some of it out. Does anybody know if this thing has a spell check on it?



Old Forum

Posted: Sat Jul 23, 2005 12:09 pm      

Hawkman
Site Admin

 
Joined: 20 Jun 2005

RZZ,

I along with many others have been hoping to see you here since day one. Welcome, and many thanks for joining the effort to build a functional forum. Our membership, number of posts, and member expertise has grown tremendously in just a month. Now that we have a forum where we can actually discuss Peyronies Disease, your experience is a huge asset.

Rzz wrote:
Does anybody know if this thing has a spell check on it?

There is no spell check on this forum software. A new version of this software is due to come out soon and MAY have spell check but it is only speculation what added features it may have. When the new version comes out, the members will not have to do anything. The upgrade will be automatic.

A solution to those wanting "spell check" is to cut your post and paste it into MS Word or another word processor. Correct spelling and paste it back to the post window and click on submit. Of course, you can just start in a word processor, cut the contents, open a "reply window and paste. I know this sounds like a pain but it is very easy once you get the hang of it and it only takes a couple seconds. If anyone has trouble with this just ask for more details in the "Off Topic" area or in a "private message", and I will be more specific.

Also, unlike the BTC forum. you can edit your post after making a post



Old Forum

Posted: Sun Jul 24, 2005 2:59 am      

dcaptain


Rzz,

Welcome! Awesome, it's great to have you here!

dcaptain



Old Forum

Posted: Fri Jul 29, 2005 4:34 am      

PDFTD

Hi,
Another idea to lessen the complications of writing a post full of spelling errors would be to put into your links bar on the top of your browser an online dictionary. I have one and will gladly post it for anyone who wants to use it.FYI, it's a Merriam/Webster version.


http://www.m-w.com/

Best to all,
Barry

PS: RZZ, Glad to have ya aboard. I told Hawkman that you would never join,I'm glad I was wrong.



Old Forum

Posted: Mon Aug 01, 2005 1:58 pm      

Guest

Becky wrote:
I think his case is pretty unique considering his age - 21 (I am 19). It is definitely Peyronies Disease though, he has all the classic signs. We are both holding out hope that it will get better with time. Does anyone know if there is a greater chance of it healing itself if the disease onset is at a younger age?


Becky,

His age is not necessarily "unique". Many men contract Peyronies Disease at a young age, such as 21. I have even seen cases where some even younger than that have it. I would first ask you, since you mentioned he has all the classic signs, has he gone to see a Urologist? You should encourage him to visit one if he has not. Do not make the mistake of armchair diagnosing something as serious as Peyronies Disease, either one of you. Without a confirmed diagnosis from a Urologist, it could be something else similar to Peyronies Disease. There are many other conditions that mimic the "classic signs" of Peyronies Disease.

The good news is that, yes the younger men who do have Peyronies Disease seem to be more apt to "spontaneousely resolve". As the cause of Peyronies Disease is unknown, so too the cause that some may spontaneously resolve is unknown. After being officially diagnosed, it is also recommended getting a second opinion. He must be sure he has Peyronies Disease before going forward with any type of treatments, whatever they might be.

When he knows for sure, you and he can put together a plan on how your going to deal with it. For example: no sex for at least the 1st initial stage of Peyronies Disease, maybe some minor foreplay just to keep the blood flowing. Nothing which could further injure or irritate the penis!

I commend you for coming forward and taking part in your boyfriends healing process, he already is a step ahead of most men because of it. Keep an open and postive mind with him, that will go miles in his own personal psyche. In his mind, his very manhood is at stake! Good Luck!

Mr Wizard



Old Forum

Posted: Mon Aug 01, 2005 2:07 pm      

bob
Voting Member

I agree with Mr. Wizard that Becky's boyfriend should get himself to a urologist without delay. Something besides Peyronies Disease could be the culprit. Nothing is to be gained by not confirming and/or delaying the diagnosis.

I've noticed that there seems to be a difference of opinion on whether one should be sexually active or inactive during the "acute" stage of Peyronies Disease. I was told to avoid anything that had the potential to injure myself, but to otherwise carry on as normally as I could. Some members of this forum have also taken supplements with the aim of increasing their blood flow, reasoning that this is a good thing.

On a totally unrelated subject: Anyone know what has happened to the APDA site? The domain name seems to have expired.

Bob



Old Forum

Posted: Mon Aug 01, 2005 3:10 pm      

Hawkman

bob wrote:
On a totally unrelated subject: Anyone know what has happened to the APDA site? The domain name seems to have expired.
Bob


Wow! I am sure they will be all over that as we speak and we can count on them being back up shortly.

While we are on the subject, We clearly have different formats and guidelines on our forums but we clearly have a greater common concern. I will be signing up for my membership in the next day and I encourage those that can do so to support them with a membership. Really, I see it as supporting ourselves as a Peyronies Disease community.

I can't speak for the APDA but I am sure it is possible to contribute any amount (more or less) than a membership fee. I am admittedly not the best source for discussing this. I do speak to Marty regularly and Stan on occassion. I will pass a few more details along on this topic for those interested.



Old Forum

Posted: Mon Aug 01, 2005 6:06 pm      

Marti


Thanks Hawk for the support, we do indeed share many of the same goals, and all of the concerns, and I want you to know that I appreciate this forum and what you are doing emensely. The more we speak out, the more we all claim our right to sexual health.

Any and all donations are gratefully accepted. There is a donors button on our home page. We are at a real critical time in our org right now. The opportunities are endless and we are looking at ways to take advantage of them. As you and I spoke of, the AUA convention is comming up in May of 2006..15,000 physicians and 5,000 vendors under one roof!..For the first time we have the opportunity to be seen as a physical presence speaking with one voice for Peyronies Disease patients everywhere, APDA members or not. The more members we have(note, this doesn't mean we publish names...we don't, our laws prevent that), the more credibility is given to our org in working for you. Same with the main purpose in having every man who visits our forum complete the survey. Big Pharma and the powers that be respond to numbers, the bigger the number, the more they pay attention. So thank you again for what you are doing.

Oh and one more thing (snicker)..general estimate based on the "medical consensus " that Peyronies Disease strikes between 1-5% of men" ..that may mean we possibly have approximately 13.5 million in the US alone (5%)..now that is a number we would like to have on our "membership list" hehe.

Take Care
Marti  




Old Forum

Posted: Mon Aug 01, 2005 8:04 pm      

Becky

bob wrote:
I agree with Mr. Wizard that Becky's boyfriend should get himself to a urologist without delay. Something besides Peyronies Disease could be the culprit. Nothing is to be gained by not confirming and/or delaying the diagnosis.

Bob


He told me he has gone to see two doctors about it, but that they both told him nothing was wrong without even taking a look at the problem. I told him he should go see someone else but he is discouraged. He has scoured every web site he could possibly find on Peyronies Disease and related diseases, and so have I, and we both agree that it couldn't possibly be anything else. But I agree that a doctor's diagnosis would be a good thing to have. I think I will tell him about the vitamin E treatment and try to get him started on that. He is very reluctant to take pills because he doesn't want to be dependent on them, but I think he'll be OK with vitamins =)



Old Forum

Posted: Mon Aug 01, 2005 11:10 pm      

Hawkman


Becky wrote:
He told me he has gone to see two doctors about it, but that they both told him nothing was wrong without even taking a look at the problem. .........He has scoured every web site he could possibly find on Peyronies Disease and related diseases, and so have I, and we both agree that it couldn't possibly be anything else. But I agree that a doctor's diagnosis would be a good thing to have. I think I will tell him about the vitamin E treatment and try to get him started on that. He is very reluctant to take pills because he doesn't want to be dependent on them, but I think he'll be OK with vitamins =)


Becky, there are 40 members here and many more guests. Many that have scoured web sites for years and carry the information in their heads or have posted it on a forum. Many that have been to the best Peyronies Disease doctors in the world, and many have researched and tried many alternative treatment over decades. When you feel too discouraged to do all the research, or to develop a plan of action that is when it is most important to come here and ask. Some men here have had Peyronies Disease for 50 years.

Supplements are food. Tell him is too late, he is already hooked on food  . If I were going to try alternative treatment, I would take vitamin E but it is at the bottom o[f my list of things that are likely to help. I would not try these items one at a time. There is much information here on treatments that carry very little to zero risk and have at least some studies to indicate they help.

Here are a few starters. Try to get him on the site. Actively talking and taking action are more help than most imagine until they do it.  



Old Forum

Posted: Thu Aug 04, 2005 3:31 pm      

Marti

Morning,

Just wanted to give everone a quick "heads up". Stan put up a new topic and Q&A an on the site (also several new abstracts)..you can get to them from the home page...

Dr Wayne Hellstrom, Prof of Urology, Tulane Univ. Med School, submitted them. The topic #8 "Other non surgical treatments" is really interesting. He talked about what they used to do for Peyronies Disease..my first thought (and last too) was "good grief!" . It is a wonder "IT" didnt rot off with what they used to do. It at least showed me that we have made some progress.

I think everyone here has our addy, but just in case..it is www.peyroniesassoc.org ..Stan also put up a link to the forum here so you can get back and forth easier.

Take Care



Old Forum

Posted: Thu Aug 11, 2005 8:55 pm      

Larry H

Just a quick hello at all.

I am delighted to see the the relationship develop between the PDPDF and the APDA, as it will work to the benefit of all who suffer with this disease. We all share the same goal in fighting Peyronies Disease, and the more resources available helps speed advances in education, awareness, and new treatments.

Patient advocates can, and will play a major role in moving Peyronies Disease from the closet, where it's been for too long, and out into the awareness of the general population. Perhaps we will then start to see the increase in research and improved treatments that has been so long in coming. Patient advocate support of all Peyronies Disease related forums and associations is an important factor in the overall fight against Peyronie's Disease.

My Best,

Larry H



Old Forum

Posted: Fri Aug 12, 2005 3:55 am      

Hawkman

Larry,

Welcome,

It would be difficult to over emphasize how good it is to have you here. I know you are busy, but hopefully you will not be missing for too long at a time. I know that no matter how busy you are, you will find ways to help the Peyronies Disease cause whenever and wherever you can.

I agree with your remarks about cooperation and interaction between the various components of the Peyronies Disease community. We all try to fill a niche or vacuum, and cooperate from our area of strength. It is not about competition. I see it more like the different branches of the Service supporting and complementing each other in a battle we have to win.

Thank for the post

Hawk



Old Forum

Posted: Fri Aug 12, 2005 3:02 pm      

Larry H


Hawk,

Thanks for the kind words, they are most appreciated.

You know I speak of awareness, or the lack of Peyronies Disease awareness within the general population very often. It's an issue that is very close to me. It concerns me that so many who suffer with Peyronies Disease are reluctant to discuss their condition with anyone shall we say, on the outside.

I understand the very personal and private nature of the disease, and I can understand why many would be embarrassed to discuss it. On the other hand it's a major reason why Peyronies Disease is still considered a rare or orphan disease. The NIH classifies it as an orphan diseas thus greatly hampering funding for research. As more men open up about their Peyronies Disease we realize that it affects far more then less than 3% of the male population in this country.

Personally I not ashamed of my Peyronies Disease, I did nothing wrong to get it. I look at it the same as someone who has arthritis, the condition just occured. One of our efforts must be aimed at getting men who suffer with Peyronies Disease to draw themselves up and become more open with their condition. Only in the daylight of public understand will we be able to move forward toward better treatments and a possible cure.

Just an additional thought on my previous post.

My Best,

Larry



Old Forum

Posted: Sat Aug 13, 2005 12:06 am      

Hawkman


Larry H wrote:
Hawk,
I understand the very personal and private nature of the disease, and I can understand why many would be embarrassed to discuss it. On the other hand it's a major reason why Peyronies Disease is still considered a rare or orphan disease.

Personally I not ashamed of my Peyronies Disease, I did nothing wrong to get it. I look at it the same as someone who has arthritis, the condition just occurred. One of our efforts must be aimed at getting men who suffer with Peyronies Disease to draw themselves up and become more open with their condition. Only in the daylight of public understand will we be able to move forward toward better treatments and a possible cure.
Larry


Larry, your point is well made and well taken. However, even as someone that can describe the discomfort and humor of 3 prostate biopsies in great detail with almost anyone, I have reservations about this. I hesitate to express my concerns here because I wish it would happen and I don't want to present an argument against your point. However, I have always believed that a discussion of issues only helps (that statement may have just undercut my argument)  

If I reveal my Peyronies Disease to my family and friends, along with that there is much implied information that I am giving and much speculation about the private relations in our bedroom. I am a bit uncomfortable making that a shared issue with my daughters-in-law, grandchildren, and some others. Even if I revealed, "I have Peyronies Disease", that seems to do little to educate on the far reaching, devastating effects of the disease. It was said that President Clinton had Peyronies Disease. That knowledge did nothing for me since I thought it meant is penis had a general acquired curve to the right or left, no big deal. This means that in addition to revealing it, we would be obligated to explain it and educate them. Realistically, how far can one go down that road. Also, how far would we get down the road before someone said, "ok, that's a little more information than I needed." ?

I remain conflicted because I wish everyone else would go down to the Capitol and shout, "I have Peyronies Disease and I demand a cure", or put a bumper sticker on their car. Then, I could sit home and reap the benefits. Being relatively new to the secret boys club of Peyronies Disease, it may just take some time for me to resolve the conflict in my own mind.

I suspect that discussing this issue within the safety of the forum, is exactly where it has to start.



Old Forum

Posted: Sat Aug 13, 2005 1:33 am      

Marti McKown


I have a thought for you to ponder..sort of. I am not sure it is necessary to "expose" (sorry couldn't think of another word) yourself unless you want to.  

I am also not sure a physical march on Washington so to speak is even necessary. What I do believe is necessary is grass roots advocacy, and that can take many forms...and needs many difffent types of people doing diverse jobs to accomplish it...

Some may not choose to admit or have to talk about having the disease, but can do so much behind the scenes that it makes it possible for those who choose to be seen publically to do their part in the effort.

You're right this is a great place to discuss it.

Take Care



Old Forum

Posted: Sat Aug 13, 2005 8:44 pm      

dcaptain


Marti and Hawkman, you have started an important conversation. If I can throw my two cents in on a few points...

I am also new to the Peyronies Disease world, and have yet to find the resolution in my mind to tell anyone about it. I understand your reluctance, Hawkman, and while I want to tell people so they understand certain aspects of my life, I have yet to get to the point where it is absolutely necessary. Perhaps I someday will.

That being said, advocacy is somewhat of another matter entirely. I think the nature of what is being advocated for largely determines the advocacy strategy, and whether or not that requires self-disclosure would come into play once it was decided what the goal was. Even if self-disclosure was something that would make the advocacy work be more natural or telling, I would think it could be done without sharing that information with your friends or family (outside of a spouse, say).

I guess what I'm thinking is that it takes one level of "commitment," say, to get up in front of people and say "I have Peyronies Disease" and to talk about it, and perhaps a much lesser level of commitment to sign a letter that states the same and send it to a member of Congress. I think if anything, some advocacy work could be done discreetly - I for one would find it much easier to explain Peyronies Disease (including my own) to someone I didn't know, even if it were a member of Congress, rather than a friend or family member. At least for now.

But this does bring up another point, which is what should the goals of any advocacy be? I don't know that public education *necessarily* is part of the equation - I have no doubt there are many other rare diseases that are unknown but receive attention from the *right* people. I guess what I'm thinking is that, given the possibility of most-likely limited resources, coupled with the nature of this disease and Hawkman's probably accurate read of the public's thoughts on it, spending time/money wisely is probably paramount.

I am just throwing this out there, but perhaps there are other sexual health issues that could serve as advocacy models? There has to be something else that is similarly personal, yet requires advocacy work.

Nonetheless, again, I think the biggest issue is determining what the goals would be. If it is increased funding for research, that might be one strategy. If it is something else, it might be another. Again, just my two cents and a big THANK YOU for starting this conversation.

dcaptain



Old Forum

Posted: Sat Aug 13, 2005 8:54 pm      

Larry Holcombe

Hawk,

I understand your feelings about this, you are by no means alone. I also know I'm a little different than most in my attitude with my own Peyronies Disease. I'm probably 10 years older than you and that makes a difference, as the younger you are the greater the impact, although some may disagree with this point.

Children are also an issue. They know they didn't come from under a rock. but most don't want to think about their parents having intercourse. My two grown sons know about my Peyronies Disease, as I wanted them to know that our equipment is not as tough as once thought. My daughter in laws have also read some of my posts, and know of my work as a Peyronies Disease advociate. Now, with all of that said I realize I'm in the minority in my approach to my Peyronies Disease.

The fact remains that Peyronie's disease concerns the erect penis, and the ability to engage in sexual intercourse. Even in todays open society that's a bit over the top for general discussion, and doesn't even address the stigma that most men have concerning how others will view them as being less of a man. So Peyronies Disease remains a closet disease. As such, it's not well know within the general population making very difficult to get funding for research, and the development of new treatments.

Now, my dear friend Marti makes an excellent point, as she always does, in that there is a place for all advocates to help fight Peyronies Disease, no matter the level of openess desired. Getting involved in some way, on the inside or the outside, is also excellent thearpy for the mental side of the disease.

I'll continue to encourage all who suffer with Peyronies Disease to try to become more open with their disease. However, I understand and have compassion for those who wish not to do so.

Larry