Peyronies Society Forums

What new topics do you want added? Please post new topic requests here.

Maybe a link for some of the different devices out there. Like the was this one thing for traction and one thing that had these foam rollers. I saw this almost brace kind of thing. Anyway I'm curious if anyone here, as I would tend to trust the folks here a little more. Have used any of these thing and if so to what benefit.

Nick, you are requesting a topic creation for traction and stretching devices, correct?

Nick,

Would this fit under "VED's and other Devices or Contraptions ", or are you looking more for links? 

You it would just fit, I'm sorry. I'm at work and not paying attention.

No need for apology Nick,  we all do it, and I could have just as easily been misreading what you were asking.   ;)

I would love to see an area dedicated to something like this: "It's sucks that we have Peyronies Disease, but the fact is we do; now what."

It is so hard to cope!!!  I'd love to hear how others have coped, how they dealt with dating. what they say when going to bed for the first with a woman etc... I not only as a man, but as an ex-Marine have always beleived to hold on, keep focused, stay with it and you'll win the fight. I STILL BELIEVE that, but I would be interested to hear what others do to cope.       Thanks        Rzz

Quote from: Rzz on September 20, 2005, 02:01:44 AM
I would love to see an area dedicated to something like this: "It's sucks that we have Peyronies Disease, but the fact is we do; now what."

It is so hard to cope!!!  I'd love to hear how others have coped, how they dealt with dating. what they say when going to bed for the first with a woman etc... I not only as a man, but as an ex-Marine have always beleived to hold on, keep focused, stay with it and you'll win the fight. I STILL BELIEVE that, but I would be interested to hear what others do to cope.       Thanks        Rzz

Rzz:  I agree that this is a very important topic and a HUGE part of the Peyronies Disease issue, especially for single men.  We have a topic entitled "Psychological Component - Coping with Peyronies Disease"

Its description is: "What issues have you faced?  What impact has Peyronies Disease had in your life.  What has helped you cope?"

Could you pose your question there or are you looking for something different from that?

How about a topic marked "other Peyronies Disease forums". Not that there are many others worth looking at :-)

Nick,

What would we discuss under that topic?  I don't want to be critical of other forums. 

Right now there are only two operating forums out there.  BTC and Yahoo.

Give me some idea what the purpose would be.

The only purpouse would to say hey I found this forum last night, check it out. I was not aware there are only 2 forums out there. I know I have looked and not found any. I just figured I wasn't looking hard enough.

Well Nick,  First find a forum :)  I don't want a topic sitting empty for a year on the theory that we might find another forum some day.  If it is a one or two post subject we can just put it under "General Comments"

If you want, I will be glad to make that topic but I think it will just illustrate my point.

If I find one you'll be the first to know.  8)

I know that removal of the prostate sometimes causes Peyronies Disease.  What about recurring prostate infections.  Is there a relationship?  I haven't seen any responses that allude to prostatitis, even though it is a common complaint.  I was wondering if it is more frequent among Peyronies Disease  patients.

Phil, I think this would fit better in/under the open questions topic. Unless, you are requesting a topic on this matter.

Joshua,

Sure, you can place this under open questions.

Thanks,

Maybe this would be a worthwhile topic for another thread, similar to the one tracking developments in AA4500 research::

Pirfenidone is an investigational anti-fibrotic drug that was in clinical trials not long ago for use against pulmonary fibrosis.  At least one participant in those trials happened to also have Dupuytren's Contracture (a condition with links to Peyronies Disease) and he reported to a newsgroup that it resolved his DC.  Pirfenidone appeared promising and it was discussed on the BTC board last year (by Joshua, among others) but nobody has even mentioned it since then.   I was especially interested in hearing from the person who posted that he was in an upcoming trial of the drug for a fibrotic disorder and is also a Peyronies Disease sufferer, or so he says (we all know how the BTC board is).  The old thread is this one:

http://www.biospecifics.com/forum/readThread.asp?forumID=14&threadID=3434

Some studies are discussed in the following two links:
http://www.clinicaltrials.gov/ct/show/NCT00063583
http://www.keepmedia.com/pubs/PRNewswire/2005/03/29/790464

Kevin

It looks like SUNY Stony Brook is doing some work with collagenase (http://www.clinicaltrials.gov/ct/search?term=collagenase&submit=Search).  They're teaming with Biospecifics in trials for Duypuytren's and Frozen Shoulder.  Why not Peyronies Disease?  If no one on this forum tells me why not, then I'll ask the PI at Stony Brook, Why not?

Here's what I know, or think:

Something like 8 years ago (maybe more, I've lost track), Biospecifics announced they intended to get FDA approval for injectable collagenase for Dupuytren's contracture. To make a long story short, this hasn't happened despite several rounds of investment and millions of dollars spent. Along the way they licensed the product to another company, Auxilium, for use against Peyronie's disease.  Auxilium has likewise made all the right noises, but nothing visible seems to be happening. Recently, Biospecifics sold off a good part of their business, supposedly to raise more money to complete these trials. 

Auxilium renamed the product AA4500 and you'll see other posts here on this subject.  My own opionion is that it is questionable whether Auxilium and/or Biospecifics are serious, or sincere, in their statements about bringing this product to market, versus just pulling in more investment dollars as years go by. I might be overly cynical, but...  its been 8 years now, with Phase III trials perpetually just around the corner.  They do however have it tied up with a patent, so no one else can do anything with it.

Kevin:
I have always been interested in this possible treatment. There is little information on it but it does seem like a avenue that might provide real hope for us... Thanks for providing the links and bringing this important topic back into the light..

Quote from: kevin on April 09, 2006, 01:34:33 AM
Maybe this would be a worthwhile topic for another thread, similar to the one tracking developments in AA4500 research::

Pirfenidone is an investigational anti-fibrotic drug that was in clinical trials not long ago for use against pulmonary fibrosis.  At least one participant in those trials happened to also have Dupuytren's Contracture (a condition with links to Peyronies Disease) and he reported to a newsgroup that it resolved his DC.  Pirfenidone appeared promising and it was discussed on the BTC board last year (by Joshua, among others) but nobody has even mentioned it since then.   I was especially interested in hearing from the person who posted that he was in an upcoming trial of the drug for a fibrotic disorder and is also a Peyronies Disease sufferer, or so he says (we all know how the BTC board is).  The old thread is this one:

http://www.biospecifics.com/forum/readThread.asp?forumID=14&threadID=3434

Some studies are discussed in the following two links:
http://www.clinicaltrials.gov/ct/show/NCT00063583
http://www.keepmedia.com/pubs/PRNewswire/2005/03/29/790464

Kevin

If the researchers at Stony Brook are testing a treatment fo DC, they are clrearly not in the Urology department and may not even know of the connection with Peyronies Disease.  Even if they are made aware of it, I doubt they will even consider injecting collegenase where it needs to be injected for Peyronies Disease purposes.  I guess the best thing to do is make sure they do know (with links to the sources of that info) and ask they they confer with their colleagues in Urology.  In fact, if the study is large enough, there is likely to be at least a couple of test subjects who actually have both DC and Peyronies Disease.  So maybe the researchers can be convinced to include Peyronies Disease among the many other conditions they ask about in their recruiting questionairre.  That way, any incidental effect of the drug on Peyronies Disease could be noted at the end of the trials and, if it's beneficial, flagged for further study.  Enter the Urologists.....

I suppose we are getting far enough into the subject of AA4500 that this discussion ought to be placed within that topic's own thread.  Pirfenidone will also benfit from having a topic by its own name to help keep up on developments in that promising but little-reported new area.

See this press release from Auxilium:
http://biz.yahoo.com/prnews/060330/nyth034.html?.v=50

It says in part:
"Auxilium believes that AA4500, an injectable enzyme, has completed Phase II of development for the treatment of Dupuytren's Disease and is in Phase II of development for the treatment of Peyronie's Disease and Frozen Shoulder Syndrome (Adhesive Capsulitis)."

http://www.intermune.com/wt/itmn/pirfenidone

Kevin,

I support making a new topic for ANY Peyronies Disease subject that can sustain the status of a topic.  The problem is that the AS400 topic has only had 4 posts in 5 months.  Most of those posts consisted of 2 sentences.  While I agree that some day AS400 could potentially become the only thing we discuss on this forum, for right now, there is not much to say.  Is there reason to think pirfenidone is any different?

In reality i think the AS400 topic should be gone and that both, AS400 and pirfenidone could be discussed under "news" if there are any development with these two.  I am very open to a rebuttle if someone sees something I am missing.  The bottom line to any topic:  can it sustain and exchange of information.  Looking over our topics, a few of them are not supporting any conversation.

I wouldn't mind a section covering androgens (testosteone, dht). I have been doing a lot of research and that area seems as promising as anything else.

cheers.

Other things, like VED, TV, etc., are listed prominently and are discussed more because they have been around for a while and are actually available.  In the case of Pirfenidone, the lack of discussion is partly because the topic is probably unknown to newer board members unless they have read down to the bottom of every thread.   So any reader who may have encountered info about Pirfenidone, etc, (not necessarily in a Peyronies Disease context) may not realize we are following its develeopment for Peyronies Disease treatment.   Moving the posts about AA4500, Pirfenidone, et al, to "NEWS" is not bad but it may be even better to put them in a topic called "Experimental drugs/treatments", so that other worthy (but general) "News" posts don't bury them.  There aren't that many still-unapproved Peyronies Disease drugs that we can't keep such topics visible.   Besides, the number of listed topics on the forum is still quite manageable - thanks to you - even before doing the pruning that you are planning, and need not be overly streamlined.   It's not like we have thousands of ancient threads like some forums we know...

Kevin,

You make a good point.  I will change AS4500 to "Developmental Treatments.." and we will use it as you indicated.

I know next to nothing about pirfenidone. 

Check the first post of the topic and see if my wording needs tweaked.

Thanks

Thanks.  (Yes, the wording for the new topic looks just right.)   I took the liberty of re-posting two messages from this thread to the new one where they now belong - one summarizing Pirfenidone, and the other discussing a SUNY trial of Collagenase).
Kevin

Quote from: soxfan on April 16, 2006, 10:19:18 PM

I wouldn't mind a section covering androgens (testosteone, dht). I have been doing a lot of research and that area seems as promising as anything else.

Thanks for your interest and support Soxfan. My initial reaction is that the subject you are interested in fits perfectly under the topic "Alternative Treatments".  If it or any other subject becomes such an interest that it can support an exchange of information on its own, we can then give it its own topic and move all the posts to the new area.

If you think it over and conclude that my initial reaction is wrong, or if I am missing something such as a reason it would not fit under alternative treatments, let me know. 

The goal is to keep topics manageable to build a vast searchable libray of information that is quickly accessible to us and new Peyronies patients.  If the topics get too specific then it stifles normal conversation that often range a bit off of one specific issue.

I saw on the APDA newsletter that they are looking to make their website viewable in other languages.  I know this would probably be a huge task for Hawk to accomplish but it may be worth considering, because as we grow we may pick up people from other countries, especially northern Europe!  Could be helpful to maybe at least cover the main langauges such as Spanish etc.

Just a suggestion to try and help the site grow and become better, don't know how feasible this is.  The way I see it is say a chinese guy can view all our posts and just click a button and view everything in chinese and then he can post right on the forum with us, and we just see his posts in english, and he sees ours in chinese, I think there are some programs that can do this.

ComeBackid

I would like to suggest a separate topic to discuss Pentox apart from the "Oral Treatments" topic thread. I believe that of all the oral treatments, Acetyl-l-carnitine and Pentox are the two therapies out there that are having a positive impact on Peyronies Disease patients. It seems that many forum members are just initiating treatment with Pentox, and it will be interesting to track the results.

roadblock

I would like more discussion on the Pentox topic.

Joshua or Hawk-

47 Year old Peyronies Disease sufferer here.  Presented with pain and curvature about 6 months ago...perhaps after a frisky episode with the wife...although I have no specific memory of an injury.  I also suffer from Plantar Fibromatosis so I may be genetically predisposed to Peyronies Disease.  If possible, I would like to see a couple topics started.  First, the use of Pentox together with sympathetic therapies...ie. arginine and VED.  I am convinced after talking to my Uro that effective treatments for this disease will likely be a combination of oral medications and mechanical therapy...at least until the medical community can get the magic bullet out of the holster.  The other topic that I think may become useful (and much more active) is the discussion of mechanical traction devices.  My Uro, Dr. Levine in Chicago is beginning a study of mechanical traction devices to alleviate the curvature with Peyronies Disease (and potentially restore lost length and girth).  Based on my discussions with him, he sincerely feels this therapy holds some promise.  Of course, you are likely aware of the study in Spain that showed significant improvement in Peyronies Disease sufferers by using this device.  I understand Dr. Levine will begin the actual clinical study this month. 

Just as a side note, I had an appointment with him the day after he returned from the Atlanta conference and he was really quite excited by some of the activity and interest generated at the Peyronies Disease sessions.  I asked him about any new ideas that were brought forward and he said he felt there may be a new drug and protocol by the end of the year that may be "very significant".  I think it related to the collagenase treatment but I plan to inquire further at my next visit (next week)...I'll keep everyone informed.  Thanks...

Guys I appreciate all the suggestion.  Not only does it show an interest in the organization but much of what we currently have, came as a result of membership suggestions.

On the subject of language support.  First, language support for the website is do-able and I have considered it for some time.  I think having an application that gives real-time translation across multiple languages on our forum is a very different matter.  Translation is more than substituting word for word.  It requires changing everything from sentence structure to the alphabet character set.  It also does not deal with everyday slang expressions like "snap the light off". There are other non-language hurdles to such communication such as cultural barriers.  While I have set up translating programs for document translation for the government, I currently know of no application that can deal with most of these issues in a forum setting.  If anyone else does I would be interested in hearing.

I have also been.surprised at just how widespread English is.  We have at least one member from India on the forum.  Other than missing a few slang expressions, his written English is indistinguishable from that of a native speaker of the language.  When I inquired about this, he explained that due to the many languages in India, that English is the official language of all the schools in his country.   Beginning at the earliest grade it is the only language used by students and teachers.  India has over 1 billion people and ranks only behind China in population. 

I will investigate this issue further and I appreciate any insight from others.

I cannot tell you guys how much your interest in the our organization means.  Allow me to respond to your suggestions and listen for your feed-back.

In the early months of our forum, we were sometimes sniped at by those from another forum because we "limited what a person could post about".  As you know, this is totally false.  Topics have nothing to do with what a person can post, but only where to put that post.  Topics in no way limit the discussion but rather place it into categories for quick reference by us and newly diagnosed patients.

Liam commented that:

Quote from: Liam on May 30, 2006, 09:15:50 PM
I would like more discussion on the Pentox topic.

I agree,  This is a subject I am also personally interested in.  However, I see the problem not as needing a separate topic but in the fact that the knowledge base and personal experience does not exist with this oral drug for the treatment of Peyronie's Disease.   If that base existed, a discussion would break out under our current topic, "Oral treatments".  The same is true of penis stretchers.  If our membership base, or the medical community had much to contribute about penis stretchers, then a discussion would take place under "VED's and Other Mechanical Devices".  If we were to break this up into several topics, then a person using a stretcher and VED in combined treatment would only be more confused about where to make his post.  In fact, I know that some newer members sometimes miss a topic that exists because of the number of topics we have.

I am very interested in hearing back from the 3 of you as well as hearing what others have to say.

Good points all, Hawk.

I will be going to my urologist this week for a 3 month psa and plan to discuss Pentox with him.  Today, I am going to buy l-arginine.

I agree...considering the points you made it makes sense that the Pentox discussion continue under the broader topic of "Oral Therapy".  I have seen many websites that become very confusing due to the number of pages within the website and discussions get lost.

Some thoughts and ideas:

I really like the idea of making the business cards, could increase membership.

1. A new poll for topical verapamil- noting whether it was from PDL or generic
2. We should try to get some doctors involved in this organization one way or another, whether they post here or just affiliated with us
3.  Possible language translation for people viewing in other countries
4.  A new poll to calculate money spent on treatments so far
5. I dont know but if we can create a "business card" or a card that members can download and print out like 20 and we can give them to our urologists to hand out to peyronies sufferes to direct them towards this site, the card could include our web address and whatever else we decide to put on it.   
6.  Any other groups we can ally with?

*If I think of more ideas I will add them, everyone add your thoughts so we can continue to improve our forum!

ComeBackid

I think we need to add a stem cell information in our resource library.

Here is a good link to stem cell information.

http://stemcells.nih.gov/

If you go to report on stem cells there is good information on stem cells that could be added to the library.

I understand and acknowledge that Peyronies Disease affects the intimacy and sexuality of both men and their partners. I also believe that Peyronies Disease can give a relationship an intimacy it may not have had prior to Peyronies Disease. I will admit that sexuality is part of what drove me to research help for my DH. Have you considered a topic for "Intimacy and Sexuality"? Somehow lumping it "Psychological Component" or "General Comments" just isn't enough. Yes, sex is important to women too!

I have talked with some people and it is a major side effect of Peyronies Disease. I see a need for reeducation and unfortunately it appears that some people may be lacking the knowledge that will enable them to be creative.  While it may not be a heavily posted topic I believe any who are willing to post would be helping the many who are embarrassed to ask.

What a great idea. When I get back from my vacation, I will see about putting together a start for that. One thing we are trying to do for the site is to make a beginners area, and similar type of pages that have information that is distilled and accessible - and different from the forums where it can be hard to find a post, much less a certain thought you read once a week earlier.

This would be perfect for such a thing - and I would like to work on it.

Tim

   I see two distinct areas of therapy and healing. Most threads deal with the (1) Physical healing. More subjects dealing with the (2) Psychological  aspects would be a good thing, perhaps broken into some sub-components; possibly Intimacy and Sexuality, Acceptance, Talk About It  and others. If we could take it a step further and develop a multi-step program that would provide an order to the steps of acceptance, communication, trust and healing, etc. it would be easier to get started on the road to healing. As it stands, we have many wonderful thoughts and processes about psychological aspects but they are rather scattered through the threads. If a process was agreed upon, the steps and program could be located in one place where a new person could immediately see that there is in fact a process in place to help with the stages of Peyronies Disease. We already have pretty much written the book on VED therapy and it is working; we might as well roll up our sleeves and organize a multi-step approach for men and women to use as a guideline for healing, communication, adaptation, sexuality and other areas. No one has anything like this so at least we couldn't be accused of plagiarizing anyones paper.  ;D

Good comments.  Here are some very tired remarks then off to spend some spouse time.

I nice clean neat step approach would be good if such a thing is attainable. Since people come with all different issues and attitudes I am a bit skepticle but open minded.  Also, maintaining control of healthy sexual advice in a mixed sex internet forum could prove imposible.  Many guests could be put off by such.  Could it be done, anything is possible.

Sex is an important topic.  Language usage would be the biggest determinant of whether it would be acceptable by a cross section of users.  Clinical terms would have to be used. 

I agree that it would be a very beneficial thread to have.  Men need to be encouraged to learn that sexual intimacy does not need to end because of their condition. This is a big stumbling block for relationships that are dealing with this condition.   However, it must be closely monitored and guidelines established to maintain a professional and informational thread and not turn into something that would not be appropriate.    It is a fine line.   Perhaps a disclaimer would be appropriate in the Topic title??

    The thread and subject probably should deal with attitude, self esteem, learning how to communicate and similar things in lieu of being a mechanics of sex guide. The first steps are self esteem and a man changing his way of thinking, then communication. I know I know.... men changing their ways of thinking may seem to be a contradiction of terms  ;) but it is possible. And Hawk, one of the subjects should be a term you used in your last post: Spouse Time. I like that! 

Your on the right tract...... BUT "multi-step program" on sexuality? Ummmmm I will be polite and say, no, thank you very much.

What works for one couple may not work for another. I truly understand that communication is paramount in dealing with sex and Peyronies Disease. If Christine chooses to I am giving her permission to PM you a copy of the post I put in the ladies room on "Intimacy and Sexuality." I am sorry my brain is fried and I am finding today to difficult to deal with so I call a do over day for me!

I am going to leave my initial response and elaborate a bit because I have read your post numerous times. I was suggesting Intimacy and Sexuality and it appears to me you are suggesting an additional topic on communication. Communication is extremely important, without it I see little chance of a partnership surviving Peyronies Disease. Communication is  related to physical, psychological, intimacy and a plethora of other topics here. To lump it with intimacy....... Ummmmmm well, somehow it just doesn't sit right.

    Let me rephrase what I meant by replacing the term "in lieu of":

    "The thread and subject probably should deal with attitude, self esteem, learning how to communicate and similar things instead of being a mechanics of sex guide."

    My statement meant that the LAST thing we need is to have is a sex instruction thread or anything similar. Sexuality can be affected by lack of intimacy. By intimacy in this case I refer to instances that are intimate but do not involve sexuality, i.e., intimate couple of hours watching a movie, holding hands, moonlight walks and things of that nature. If we could just deal with and identify couples roadblocks and walls that prevent intimacy, which in turn prevents sexuality, then at least some type of road map would be defined.

   Couples that regain intimacy through reading others experiences could then move on to sexuality either through the internet or discovering things for themselves.
   Communication and intimacy would be two separate subjects and not lumped together, but still lend insight enough that people would realize that one cannot exist without the other.
   

   

     

Quote"The thread and subject probably should deal with attitude, self esteem, learning how to communicate and similar things instead of being a mechanics of sex guide."

I agree 100%.

Dear Folks:

I am putting together a set piece about dealing with intimacy and sexuality with Peyronies Disease. I would like to have a first part that gives an overview of what problems are often found in relationships. I will post that on the boards soon for comments and review.

I thought it would be nice to then have the piece flow into a "Our Stories" part. I thought about 5-6 brief stories might be good. I am quite blatently looking for feel-good stories; I am interested in showing a new person, either just diagnosed or just realizing what his problem is, that there are others who have walked his trail before, and survived, and sometimes even thrived.

I know we have some pretty overwhelmingly awful stories too, of abandonment or isolation. What I want is to show folks living in fear of that how the support of a partner can be asked for, and received. So I am very interested in hearing about these experiences from both men and women!!

I will add the stories to the introductory part in sequence and with a single name appended. I would prefer to use a real name like "Jim" or "Mary", than a screenname like "Bent-4-life". ;)  I believe that if anyone wants to maintain anonymity, even in the context of the boards, that would be fine. I am not as interested in drawing attention to any one person as I am in presenting stories. Thus, I may include my own lovely story but add a different name after it. OTOH, if I decide that I do not really care, I will sign it  with "Tim" (not Tim468). I want it to be clear to everyone reading this post that if they so choose, I would protect their privacy at that level here on the boards - I don't want anyone's sharing of their own story to distract them later as they continue to heal.

If people want to post a story here, that is fine too. But I am asking for PMs as well for me to review and add. If I get a hundred or so responses (!), I will not add them all, obviously. But from an editorial standpoint, the more the better.

Thanks in advance (and hopefully).

Tim

Um, ::koff:: ::koff::

BUMP

Anyone got something to send me?? Hint hint.

Tim

I have received several very good stories for addition to a piece I wrote on intimacy and Peyronies Disease. I really want a few more to add to it, as I think seeing examples of how couples or individuals deal with Peyronies Disease can and will be helpful to a newly diagnosed person with Peyronies Disease.

So lay it on me folks! I know we can get more written and added to my collection! If you are worried about revealing too much, then let me know, and we can find a way to make it more anonymous.

Tim

Those stories, folks? Some folks have promised me they were going to write someting, well, remember this ain't War and Peace time, it is "here is how we made it through this" time. I have some terrific stuff - but I am greedy - I want more to add in there. Even two more.

Tim

Quote from: BLBC on July 20, 2006, 12:58:11 PM
I understand and acknowledge that Peyronies Disease affects the intimacy and sexuality of both men and their partners. I also believe that Peyronies Disease can give a relationship an intimacy it may not have had prior to Peyronies Disease. I will admit that sexuality is part of what drove me to research help for my DH. Have you considered a topic for "Intimacy and Sexuality"? Somehow lumping it "Psychological Component" or "General Comments" just isn't enough.

I agree wholeheartedly.

Quote from: BLBC on July 20, 2006, 12:58:11 PMI have talked with some people and it is a major side effect of Peyronies Disease. I see a need for reeducation and unfortunately it appears that some people may be lacking the knowledge that will enable them to be creative.  While it may not be a heavily posted topic I believe any who are willing to post would be helping the many who are embarrassed to ask.

Firstly, nothing should be taboo in an open forum like this; that would destroy the very purpose of having the forum. Second, I bet a lot of people would be interested in that topic, by definition we all have sex problems or we wouldn't be here.

Quote from: Hawk on July 21, 2006, 07:18:03 PM
maintaining control of healthy sexual advice in a mixed sex internet forum could prove imposible.  Many guests could be put off by such.

So we should eliminate all possibility of communicating healthy sexual advice because of this?  ???

I think this begs the question: Why isn't there a men's section? It strikes me as odd that there is a women's only section and no men's only section, yet this is a male disease.

Sex and intimacy do seem like two different topics. There is the long walk on the beach or the movie date and then there is the bedroom after the date - two different kinds of interactions. I can't speak for anyone else, but I would venture to guess the vast majority of men on this board are very concerned about having enjoyable sex. If we can help each other to achieve a better sex life believe me we all will be better off for it - women included.

Welcome to the PDS forum Alpha.  A special salute for being one that contributes to the forum with questions and comments.

Quote from: AlphaOmega on September 13, 2006, 06:04:32 PM

Firstly, nothing should be taboo in an open forum like this; that would destroy the very purpose of having the forum. Second, I bet a lot of people would be interested in that topic, by definition we all have sex problems or we wouldn't be here.

The word "Nothing" covers a lot of territory.  My guess is that in reality you do feel the line has to be drawn somewhere; vulgar language, explicit accounts of intercourse, photos.  The question then becomes where to draw a line for an open forum that is crawled and ranked by our content on search engines. People that would feel repelled from the help of the forum by such content also have to be considered. 

QuoteSo we should eliminate all possibility of communicating healthy sexual advice because of this?  Huh

I think this begs the question: Why isn't there a men's section? It strikes me as odd that there is a women's only section and no men's only section, yet this is a male disease.

I think that there is "healthy general sex advice communicated" just not explicit advice since "how to" has never been identified as a problem.  I think the vast majority of us know "how to" and are far more likely to be restrained by psychological issues than mechanics.  There are few if any mechanics that are exclusive for the Peyronies Disease patient.  Most of us included them in the variety of our sex lives long before Peyronies Disease and there are no new magic techniques.  VED's, rings, loops and such are clearly discussed.

In response to a "Male Only" area, members of this forum never expressed a need either in "post" or "Private Message" to express things they felt would have a negative impact on their spouse or other women on the forum, or that they were embarrassed to express.  Since members are given a large say in such issues, I encourage members to voice any interest or lack of interest in such an area and to discuss any benefit or concern.

Welcome again, and thanks for the input AlphaOmega.

Hawk,

Thank you for responding to my inquiry so quickly. Work and other constraints prevent me from spending too much time on discussion forums in general, but this is a necessary exception.

Quote from: HawkThe word "Nothing" covers a lot of territory.  My guess is that in reality you do feel the line has to be drawn somewhere; vulgar language, explicit accounts of intercourse, photos.  The question then becomes where to draw a line for an open forum that is crawled and ranked by our content on search engines. People that would feel repelled from the help of the forum by such content also have to be considered.

Yes, there is a line. I come from the old school when you discussed on Usenet and BBSs over dial-up. Back then there was no line, but I understand the realities of today. However, it is not, IMHO, a good thing. Censorship is never a good thing.

In terms of the search engines crawling the site all you need to do is put a robots.txt file in the subdirectory of the category you don't want crawled and it won't be indexed. That goes for archive.org too, but it doesn't matter b/c this site has not been archived.

QuoteI think that there is "healthy general sex advice communicated" just not explicit advice since "how to" has never been identified as a problem.  I think the vast majority of us know "how to" and are far more likely to be restrained by psychological issues than mechanics.  There are few if any mechanics that are exclusive for the Peyronies Disease patient.  Most of us included them in the variety of our sex lives long before Peyronies Disease and there are no new magic techniques.  VED's, rings, loops and such are clearly discussed.

I have noticed that there are a number of younger men on this forum that haven't had a sex life long before Peyronies Disease. I contracted it at 25, I am now 32. There were a couple of the posts in the Psychological Component thread which I found very disheartening. These guys are young, and they have a life-long problem that if not dealt with properly could lead to suicide, drug addiction or other escapism, isolation and alienation from the opposite sex, and any number of symptoms one encounters when dealing with cases of stress disorders.

Certain positions make it worse. Several doctors have said to me, "there are other ways to pleasure a woman," to which my reply is, "it's not their pleasure I'm worried about." Nevertheless, the doctors are right, their pleasure is my pleasure, and I have had to get better at alternative forms of sex, some of which you can read about in books, etc. but not all. If your woman is multi-orgasmic and you can't give her more than one orgasm per session then she is going to be disappointed, and I don't believe it is ever necessary to disappoint a woman. Like I said, the better our sex life, the better our womens' sex lives. And BTW, people with no ED or Peyronies Disease look to improve their sex lives all the time. There is no reason to think it is abnormal to want to have better sex, nor that it is as good as it could ever be.

I see a lot of people on here who are married, have careers, have families, but what do you do if you contract this in your teens or twenties? I don't think it is reasonable to assume everyone has the same level of knowledge and experience as you do.

QuoteIn response to a "Male Only" area, members of this forum never expressed a need either in "post" or "Private Message" to express things they felt would have a negative impact on their spouse or other women on the forum, or that they were embarrassed to express.  Since members are given a large say in such issues, I encourage members to voice any interest or lack of interest in such an area and to discuss any benefit or concern.

I'm not sure why you would not want to set up a Men's Only forum. (Don't call yourself a male - roosters and bulls are males - we are MEN.) However, if it is a big deal to set it up or you have some consternation about it then maybe it would be useful to conduct a poll.

While it is true I am a new contributor, I have been reading here a little while and have gone through a lot of the threads. I have also been actively participating in other forums for several years. I have been to see some of the best doctors in the U.S. including NIH and John's Hopkins. and I have tried most of what I have seen here. I remember when Thacker originally posted his formula (I'm glad you archived it) and the flames he got for it - then he disappears into the night; almost a caricature of the Internet. Collaborative discussion, research, trial and error is the only way we are going to solve this problem. Many problems of medical and non-medical nature have been solved by discussion on the Internet. My 2¢ is you can never have too much discussion. Knowledge can't hurt you, but lack of knowledge can kill you.

Can we have a topic just for those who have congenital curvature (and not Peyronie's)? Most of us who have been "curved" our whole life are only presented with websites and forums about Peyronie's. And although the conditions and treatments are somewhat similar, it would be nice to have a little community of our own..

thanks! :)

Adam,

I have to admit some ignorance on the issue of congenital curvature.  I would think there obviously are no treatments except surgery.  I would also assume many of the psychological issues that apply to Peyronies Disease patients would also appy to men with congenital curvature but that most of our other topic would not interest you.  I am also unaware if there are other good forums that support this problem.

If I can get a little feed back, we will certainly consider it.  I would think it would be most appropriate to put it in the  "Off Topic" area.  I am interested in input from you and others.

Also Adam, check out your post about the support group meeting in NYC.  I added a link but I want to make sure that the meeting location and time are correct.

Thanks, Hawk. I think putting it in the off-topic section would make it harder for people who just pop into these forums to find. I feel there should just be one topic about it in this section. But it's up to you.
I know there are a handful (at least) of other people who have posted here with the condition that I have, so hopefully they will see this and give you their feedback as well.
Regarding the group meeting - is there a date set yet? You just posted the time.

thanks!

Hawk,

I understand why you'd move these posts to Surgery, but there's a lot of psycological components to Young's posts that I'd hate to lose.  Is there a way to either 'Copy' the posts, or leave a 'link' to the new locations?

BTW, I often get an email message about a new post, and when I look for it, there's nothing there.  I can only assume that the post has been moved somewhere, but I'm always left wondering what it said, and where it went.  Would it be possible to leave a link to the moved post in it's original forum?

Now that I think about it, this post should probably be moved to 'suggestions' ;)

Steve

ps.  You're doing a wonderful job keeping up this forum!

Steve there is no "copy" feature with this software.  I guess they drew the line somewhere and so far that is it.  I have discussed it with the developers and maybe in another version. 

I am at a loss about your notify not linking to a post, especially if it is a regular issue because I do not move many posts and when I do, they are usually several days old.  I share your feelings about the "psychological" content of the messages in question and will look at them closely.  Ultimately I have to choose however.

While there is no automatic link like there is when an entire topic is moved to another board, I can manually post a link in instances where the moved post tied into the discussion.  Thanks for that suggestion. (Occasionally post have nothing to do with the topic they are posted in).

The best way to keep from missing posts is to click on "View Most Recent posts".  You should then see them no matter where they are.

Hello folks,

I'm new to this neck of the woods and wanted to throw in my two cents to the discussion of new topics.

First, a brief introduction.  I'm 24 years old and I have had congenital corporal curvature for as long as I can remember.  I swing left about 35 to 40 degrees beginning near the base of my penis, putting me squarely in the camp of "not bad enough to require drastic surgery but not small enough to ignore" - or so I think.  The reason I can't say for sure is because I've never had sex before.  This is primarily due to faith-based reasons, but as those who live with this or similar (i.e. Peyronies Disease) conditions can attest, the thought of initiating sex with someone new is daunting to say the least.

With that, the contribution I'd like to make is this: there is a place in forums such as these for men like me who have little to no sexual experience and are deeply concerned about how to please women within the limitations of our conditions.  I have had sexual encounters in long-term loving relationships that have not involved intercourse, and considering the hardships I've read about in some of the men on this forum who are my age and younger, I count myself blessed for that.  Forums like these are great sources of information on how to cure or cope psychologically with Peyronies Disease, precisely because there is little to no reliable information outside of these communities.  For those of us who do not have the benefit of a history of sexual experience, it is all the more difficult to find frank sources of discussion on how to prevent physical pain and (more importantly) bring pleasure to our partners and ourselves. 

One of the greatest assets of this forum is the passing of life and medical wisdom from men who have been there, done that, to those who are just beginning to discover the courage, humor, patience, and motivation that this challenge will demand of them.  As one speaking from personal experience, I can tell you that the passing of sexual knowledge and wisdom from those who have been there, done that, to those who have not, would be an asset of equal importance.

One last personal detail which may give some perspective on where I'm coming from. My fiance and I will be getting married in June and then off to a week-long honeymoon where, with great joy and curiosity, we will together begin to discover the beauty of sex and how this condition will affect the rest of our lives.  I can tell you without hestitation that I am excited for this journey and also fearful for the challenges ahead.  Frank, open, and specific discussion about ways that I and young people like me can avoid pitfalls others have been through, would be a Godsend.

Thanks for reading.  If you have any specific advice, please don't hesitate to send a personal message - all thoughts and comments are greatly appreciated!

Brit

Brit,

Welcome to the forum and thanks for a good post. 

Specifically what would you suggest the the new topic be named and what kind of post do you envision there?  I am not interested it a "how to" sex site, and I am not sure we have the interest to support subtleties of the topic.  I am interested in hearing more however.

One man's opinion (thats been there, done that): I will say that my personal view is that sex is an instinctual drive.  It has been happening since the beginning.  I think much of the concern, nervousness, anxiety of men in your situation is unnecessary.  If you love this lady and she loves you, if you are both interested in the concept of an intimate encounter, I am sure that patience, consideration, trust, and instinct will dissolve all the barriers that may seem to exist from your current perspective.  I really think that a month after you are married you will wonder "why the concern" and you too would lose interest in the topic.

Enjoy this time to explore together and do what the two of you want to do, not what other think you should try.  It is an intimate spiritual sharing encounter.  Treat it as such, not the assembly of a complicated toy from poorly written instructions on Christmas morning.  ;)

Hawk,

Thanks for the quick reply. 

With regard to your comment about a "how to" sex site, I respect that the topic of sex advice is a more difficult area to jump in to than Peyronies Disease advice.  It's more personal and it's hard to draw boundaries.  But tasteful and informative instruction guides on sex education have been around for a very long time from the Kama Sutra down to modern day "Sex For Dummies" books.  I think the sheer volume of "how to" literature is a good indication of the common desire of men and women to move sex beyond an instinctual drive.  After all, athletes spend their entire lives perfecting their game, leaders never stop looking for challenges to improve themselves and their followers, students never stop learning...it seems reasonable that men and women seek not just to be driven by instinct in the bedroom, but to improve and perfect an act that they perform with (hopefully) great frequency for most of their lives. 

If my last post came across as pregame jitters, that was not my intention.  I think that young people like myself in particular have a great deal to learn, but good lovers realize that there are always better ways to please each other, and to that end a tasteful "how to" forum would be helpful for people of all ages and experiences.  I think I emphasized the inexperienced more than I should have in my last post; a forum like this ought to have applicability to anyone interested in improving in the bedroom (women included!).

Our physical predicament means we have to be more creative, in terms of what we do and how we do it.  The challenges we face are not covered anywhere.  If a man has a buckling point for instance, what affect does this have and what sorts of things can he do to avoid it being a problem during sex? What sorts of positions work for lateral bends versus dorsal bends?  It seems we can discuss vaccuum pumps with not even a hint of impropriety - why not extend the maturity and wisdom so commonly seen in this forum to areas of sexual discussion/improvement?  If people cannot come here for this kind of knowledge, with what must be one of the largest gathering of men and women who suffer from this common problem and who have discovered ways to overcome, where can they turn? 

So much of the discussion is on coping, communication, medical treatments, etc. - once those stages are passed and one has good dialogue with one's partner and good sense of acceptance, than it seems the next reasonable step is to figure out how one can best use what one has.  One of the member's handles on this forum is "Fighter" - I LIKE that name because it speaks to me of someone who isn't going to give up in the face of a difficult challenge, and it's a common sentiment here.  But champs don't just accept, they excel, and that's what a forum like this could enable.

As for your specific questions - the forum could be called "Tasteful Sex Advice" or "Sex With Peyronies Disease - A Tasteful 'How To' Discussion".  Topics of discussion could include positions that work well for different penile shapes, what challenges men who have both Peyronies Disease and ED face and how they overcome, what things to avoid in order to prevent injury (or to be more specific, cautionary tales from men with Peyronies Disease who have injured themselves during sex), bedroom aids that have proven helpful, etc.  I believe there is room for this sort of discussion and that people will find it interesting, funny (because sex often is), and informative.

In closing, I particularly appreciate your comments about not treating sex as something complicated to be put together.  I agree completely, and think it highlights a miscommunication between us.  Rather than suggesting a "how to" site as a dry substitute for natural instinct, I am suggesting a "how to" site for those of us who, in the spirit of constantly improving during a lifetime of intimate encounters, desire to learn from others who have experience and wisdom in this regard.

I hope you find these comments useful. 

Brit

Brit,

We have two discussions going on here and I want to separate them in my response. 

A person's need for tasteful information on sexual technique - I am not the last word for what others need or desire on this topic.  I do recall exploring such material 30 or 40 years ago.  I think it was more from an interest in any material dealing with sex than a real need for instruction however.  While I do not discount the position of others.  Athletes are competitors with winners and losers.  Their objective is to out do someone else.  Intimacy is not a contest.  Intimacy is not an endeavor that some can excel at because of great genetics and training while others must settle for the little league.  We don't have to recruit a talented mate, only one that enjoys intimacy.  That being said, that is only my personal opinion and other may see it differently.  I have no issue in the least with those individuals.  My response to them is - spend some time researching the ample volumes of such how-to material.

Including a tasteful how-to topic of Peyronies Disease Societies forum - Brit, if you will read or reread the posts in this topic, you will see some similar discussion and also better understand general objections that must be overcome by a subject in order to win the status of its own separate topic.  I will recap them briefly.

Hot Topic -Topics evolve by becoming a hot discussion of interest under another topic.  For instance, member discussion will break out under "General Comments" on the causes of Peyronies Disease or on the typical progression the disease takes.  As the discussion interest peaks, the need for a separate topic is recognized and i make such a topic and move the posts to that topic.  Interest on how-to has not even approached such a level.  Interestingly, we have had more discussion on the theoretical need for the topic than we have with discussion on the actual topic.  We have made a few topics based on their theoretical value rather than a demonstrated interest.  Most of those have badly languished and have been re-combined with other topics.

Readily Available Elsewhere - Many things may interest our members.  They range from weight lifting to healthy cooking.  The question becomes the need for us to try to be "all things to all people" Vs providing a service that does not exist elsewhere and that directly relates to Peyronies Disease.  In the case of "Sexual How-to", I had no trouble finding such material decades ago.  The internet, bookstores, and libraries now abound with such material.  It ranges from slutty to high-brow.  Since it is their focus, they do a much better job of offering such information than we ever could.

Search Engine Draw -Search engines constantly crawl our site for search words and search phrases.  Topics on the general discussion of sexual technique, ultimately rank us on that topic, and advertise us under those search terms on the internet.  This attracts those that have interests far different than those held by our members.  It dilutes our ability to delivery the support that has been long been absent from the internet.

These 3 issues must be answered: Is there a demonstrated interest, Is the need already being met elsewhere, will it advertise us on search engines in a way that attacks those with other than an interest in Peyronies Disease. 

My view is that the topic you suggest meets none of these 3 tests.  The discussion between us is of course open to all that are here.  If any see something I am missing, please jump in. 

Brit, I invite you to respond or to simply post any questions you have under "General Comments" or "Open Questions".  My comments do not prevent any post within reason that you wish to make.  Simply post whatever you want to say or ask under the most appropriate existing topic.  If the exchange indicates a real interest exists and it has some specificity to Peyronies Disease then it will be strongly considered.

Regards

Hi Brit and Hawk,

I think that topics do come up here that are not well covered elsewhere. For instance, I have discovered that, for me, a woman on top and getting wil position, is risky for suffering an acute bend. This is so because of mild difficulty in maintaining an erection due to mild ED. I note that it is less likely to happen after using some form of PDE2 inhibitor (ie viagra, cialis or horny goat weed).

I also note that it is nearly impossible for me to pick up my partner and impale her on me and to make love standing up. This is because A) I have lost length due to Peyronies Disease, B) I have lost length due to gaining weight over the years, C) my back and muscles are not what they used to be, D) my partner is 40 and not as easy to hoist up (praying that she is not reading this...) as she used to be...

Things change for all of us, whether or not we have Peyronie's Disease or not. I am not sure if it is that relevant for me to explain why I cannot recreate the opening scenes of "Five Easy Pieces" (but for the reasons iterated above, I don't think that Jack Nicholson could recreate that scene either).

Brit, what it boils down to is this: there is not that much that I cannot do because of Peyronie's Disease, but there are some changes over time due to aging, weight gain, flagging erection quality, etc. In a word, either one is able to insert his penis into a vagina or he is not. If the bend is so severe that he cannot, then he better decide is he is going to do something about it or not.

Otherwise, finding positions of comfort is an adventure, not a dreary or dreadful burden to be regretfully shouldered by a man alone. I am certain that you and you fiance will be able to find ways to make love comfortably and with imagination and affection. What I have gone through may or may not be that helpful, frankly.

Tim

Quote from: Tim468 on March 19, 2007, 09:40:14 AM
I think that topics do come up here that are not well covered elsewhere. For instance, I have discovered that, for me, a woman on top and getting wil position, is risky for suffering an acute bend. This is so because of mild difficulty in maintaining an erection due to mild ED.... I also note that it is nearly impossible for me to pick up my partner and impale her on me and to make love standing up. This is because A) I have lost length due to Peyronies Disease, B) I have lost length due to gaining weight over the years, C) my back and muscles are not what they used to be, D) my partner is 40 and not as easy to hoist up (praying that she is not reading this...) as she used to be...

Tim,

I sense I follow your points but then end up unsure I identify your conclusion.  If I can give a light-hearted paraphrase.  We cannot pick our mates up and impale them anymore because our arms are smaller and their asses are bigger.   As you recognize, this condition affects every couple on earth as they age and is therefore not a Peyronies Disease topic, is addressed all over the internet, and members have a low interest in discussing it.  As you point out, either you can penetrate, or you cannot.  If you can then the two of you work out the details, if you can't, you get help fixing your penis.  You also hopefully use some of the non-penetrating stimulation commonly used by the whole human race.  I know of no Peyronies Disease specific sex advice, especially since Peyronies Disease does something different to every one of us.  If there is any, it can be quickly summed up with:

1.  If it hurts, then don't
2. those with or without Peyronies Disease should be VERY cautious with a woman on top position, due to injury (not Peyronies Disease specific)
3. position yourself so your unique bend points toward her navel and away from her backbone when inserted.

I still maintain we have 3 criteria to satisfy as listed in my post below.  It is difficult for me to conclude whether you agree or disagree with that.

Cheers

I said: "...but for the reasons iterated above, I don't think that Jack Nicholson could recreate that scene either"

You have to remember the scene I guess for that to make sense. In the opening scenes they made wild love - but neither HE nor most of us are as capable of that as we used to be, for all the reasons mentioned - none of which really have to do with Peyronies.

My point is that this stuff comes up but I don't think it really needs a specific area. Whether or not we had Peyronie's Disease at an early age, all of us had to fumble our way towards ectasy that first time. Coaching is provided via the media, word of mouth, images we see - and on and on... Not always good advice either.

nevertheless, i do not think it warrants a special area for those starting out on their sexual journey. basicly, sex is sex - and a bend does not make it impossible, unless the bend is severe. i sense 9nad have had this confirmed by at least one guy here) that his concerns prior to his first sex were greater than the reality. But that is how it is for all of us. I would rather provide reassurance in an ad hoc fashion to the guys who come by and are worried about their performance than to devote a section to it.

Tim

Is there any site where there are photos of penises that have been classified as having peyronie's?

Is there a section for this on this site/forum that I am not aware of?

If not, I think this would be valued addition...

I am not  endorsing these sites.  They do have photos of Peyronies Disease.

http://www.wrongdiagnosis.com/p/peyronies_disease/wiki.htm  (deviations not Peyronies Disease)

http://www.emedicine.com/derm/topic851.htm

http://www.teknon.es/consultorio/viladoms/trastornos.htm

http://www.revistaciencias.com/publicaciones/EEElkyEkFkxaTlhnDF.php

http://www.andrologie.cz/page/687.priznaky/

I found these on Google.  Try using different search engines and vary the search terms.  This should get you started.

Note to all:

This post carries the following caveat: IT DOES NOT IN ANY WAY, SHAPE, FORM OR FASHION REFLECT THE PERSONAL POSITION OF THE WRITER AND IS TO BE USED STRICTLY UNDER THE GUIDANCE OF ONE'S OWN PERSONAL DISCRETION.

Now with that said, the following is a way to find hundreds of penis pictures that may or may not present with Peyronies Disease. This site was found by doing a search for pictures when several have asked if there existed pictures of Peyronies Disease and other related male penis problems.

This is how I found the site: 1. Do a Google Search by typing in "Penis Pictures". 2. When the search page comes up, the first site shows a Documentary of Penis Pictures, and it is a free site. 3. Click on the link and it will bring up a home page that shows many and varied links.

One can browse through the desired links and there are hundreds of pictures of penises that show various degrees of flaccid and erect. Some show symptoms of Peyronies Disease and others do not, so use this site only at one's one discretion.

Old Man

After doing the above search, the address is: www.ejacu.com/

Hey Guy's, Thanks to Liam for posting these websites, i checked them out and just wanted to let ya know the 4th one down [ revistaceincias ] has a picture of very close to what i was like when it first hit me only i would say much worse, i was bent all the way and twisted like a donut...This pic really reminds me of how bad i was, but after using the Topical V for 5 months it brought me back to about 85% straight....This was the first picture i have seen that was similiar to my case....Thanks again Liam for posting these so that the men can find comparason's, it's good reference material...........Kimo

Quote from: Liam on April 05, 2007, 06:13:32 AM

I am not  endorsing these sites.  They do have photos of Peyronies Disease.

http://www.wrongdiagnosis.com/p/peyronies_disease/wiki.htm  (deviations not Peyronies Disease)

http://www.emedicine.com/derm/topic851.htm

http://www.teknon.es/consultorio/viladoms/trastornos.htm

http://www.revistaciencias.com/publicaciones/EEElkyEkFkxaTlhnDF.php

http://www.andrologie.cz/page/687.priznaky/

I found these on Google.  Try using different search engines and vary the search terms.  This should get you started.

Sorry it was in Spanish.  But, you know about a picture speaking a thousand words.

Glad it helped.

Liam

BTW:  Quick Spanish lesson,  I bet all of us can translate this list of symptoms:

dolor, deformidad del pene en ereccion e impotencia sexual.

:)

So what happened? No cure for Peyronie's Disease yet?

Tim

Quotedolor, deformidad del pene en ereccion e impotencia sexual.

"Pene"?
Isn't it some kind of Italian pasta?  ;)
"Pene al bolognese...": I'll see them differently now  :P

Pene = limp noodle   :o

Hope Not  ;D

Guys,

I was wondering whether it might be possible to use this site as a place to organise the exchange of equipment used to combat Peyronies. I was thinking mainly of VED's and traction kit.
As we all know they're not cheap to buy, and I for one would be quite willing to use anything second-hand.
I keep reading that some treatments work for some people and not for others, so why not make it easier for us all to sample the various equipment on offer without having to shell out a fortune. The exchanges needn't even be permanent... a 6-month trial swap could be the arrangement, for example.

I'm half way through the VED protocol, and I'd like to think it might be possible for me to try traction for a few months once I've completed the 26 weeks, without having to buy the required equipment brand new.

Does anyone have any views on this? I apologise if it's already been discussed and found to be impractical. From where I'm sitting it seems to be a reasonable suggestion... postage costs would not be prohibitive for equipment of this size and weight.

Thanks

PJ.

Sounds interesting to me... kind of a 'swap board' where someone can post a request for something they're looking for, and (I'd suggest) other members can send personal messages to get the ball rolling.  Personally, I don't think that the entire conversation should be carried out in the public view  as it were.  Also, along that line, if/when someone's request is filled, their post should be removed or modified to indicate that they are no longer 'looking'.

Just a few of my thoughts on this.

Steve

Sounds kind of unhygienic to me, but I guess the devices can be sterilized.

No worse than picking one up on e-bay! ;)

Quote from: Steve on October 26, 2007, 02:12:49 PM
No worse than picking one up on e-bay! ;)

LOL. You have a point. I assumed it was brand new when I got it. It looked that way.

If I truly thought there was enough interest in this I would consider making an area on the site to list such, but I am skeptical.  Considering the different equipment,: VED's, traction, iont, etc and needing both a party that wants one and a party that has one to let go, I doubt there would be many connections made.

It doesn't necessarily have to be an exchange... unused VED's, traction or any other types of kit no longer required for whatever reason could be offered for sale second hand.

I can see the main problem might be keeping the area up-to-date, which would place a burden on the administrator. But even it it wasn't regularly maintained  a quick enquiry by PM would quickly establish whether or not the item was still available.

Just my thoughts, trying to keep the costs of combatting this stupid affliction as low as possible.

EEEEWWWWWWW!

 ;D   :D  :D Fair enough...

It wouldn't bother me in the slightest, but each to his own, so to speak.

There is so much information to trawl through on this website so could I suggest a 'what has worked for you' thread.  Somewhere that just the drugs/therapies/operations etc have either benefited or cured your peyronies.  I know that it isn't easily cured and that one thing does not work for everyone but there is SO much on this site that it is hard to pinpoint things that have helped others. 

Well there is the "Improvement - Accounts of improvement in deformity or erection" thread..   I hate to be a downer but the fact that there is so little posted there seems telling.  Although it could just be that men who have been cured no longer feel the need to post about peyronie's on the internet.   ;)

Thanks Joe.  I have just been reading that thread with interest as I am trying to do some research for MOH in what has worked for others.

The limit for PM's in the inbox needs to be upped. I'm having trouble sending to some people who have full inboxes. (ICEMAN if you read this, delete some messages!)

wayne999:

The reason there are limits on the quantity of PMs allowed in inboxes is due to the fact that the forum would become overloaded and therefore not have space for all the information, etc.

So, the administrator has placed limits so that there would be room for the many PMs that are sent each and every day. Each poster should monitor his/her inbox and delete those older or less important PMs to clear up the space alloted for each one. There is an indicator percentage shown in the inbox page of each member's message board so that it can be monitored.

Old Man

I periodically delete all the messages in my Personal Message box, but they aren't lost forever!

If you open them up, after they all load, simply go to the File menu and select "Save Page As..." option. Then you can look up old messages later off line if you need to.

Tim

Maybe we could have an "Increasing Awareness" thread, where we endeavour to enlighten people about peyronie's. This could be on a local level, where you find yourself educating a medical professional (I know it should be the other way around :)), talking to a family member etc or using a more global approach by emailing article sites, news organisations, research companies and so on. I know this area isn't exactly the be all and end up, but there's no doubt in my mind that the woeful lack of knowledge about this condition primarily, due to embarrassment, has slowed research previously. It might give suffers more hope to see that more and more people are appreciating and acknowledging their plight. What do you guys think of this suggestion?

Increasing Awareness is a good idea for a thread and for accomplishing all the tasks that you have enumerated. I think that this forum is oriented more for helping an individual know what is out there and is not good at these goals - but that could change.

Tim

NewGuy,

I never know quite how to respond when members request topics or areas we already have.  I think many people jump on the forum and habitually go to one spot without ever looking around.  We have an entire board on awareness.  I don't know what we could do to make it more visible.  I am interested in knowing how it is that you have not noticed this area.

Awareness is an area we have tried several times to get moving.  In fact we had a  "Advocacy & Awareness Director" and an assistant director, but both dropped out of participation for various reasons.

If you go to the forums main page, you will see the awareness board directly under this board (which of course is the Peyronie's Disease Discussion Forum)

this goes directly to the board https://www.peyroniesforum.net/index.php/board,11.0.html

Quote from: Hawk on October 01, 2008, 09:38:34 AM
NewGuy,

I never know quite how to respond when members request topics or areas we already have.  I think many people jump on the forum and habitually go to one spot without ever looking around.  We have an entire board on awareness.  I don't know what we could do to make it more visible.  I am interested in knowing how it is that you have not noticed this area.

Thanks both Tim and Hawk for the pointer.

1) I'm pleased that there is an existing advocacy section :)

2) I apologise for not spotting the area earlier. As for how I missed it, I think the answer is pretty much two-fold.

- Due to bulk of the sites activity taking place in the 'Peyronie's disease discussion forum' I believe that I had bookmarked this page early on. As such it became the only area of the forum that I frequented, hence I didn't ntoice the 'Advocacy' area

- Expanding on the above, the structure of the forum is non traditional in format. I would typically expect a main forum page to consist of 'all' the major categories (such as traction - ved - drugs - advocacy etc). That way, all major site topics would on featured on one page under static headings and theads would be placed within those categories. There would be no need to title posts etc because the thread title would be the title.

Ultimately though it's pretty much irrelevent really, but i'm just trying to convey why I think such mistakes occasionally come about. There are no right or wrong ways of going about these things of course. This isn't a criticism and I appreciate that an awful lot of hard work has gone into organising the content in ways which make it accessible to both old and new members.

Quote from: newguy on October 01, 2008, 11:16:05 AM
- Expanding on the above, the structure of the forum is non traditional in format. I would typically expect a main forum page to consist of 'all' the major categories (such as traction - ved - drugs - advocacy etc). That way, all major site topics would on featured on one page under static headings and theads would be placed within those categories. There would be no need to title posts etc because the thread title would be the title.... This isn't a criticism and I appreciate that an awful lot of hard work has gone into organising the content in ways which make it accessible to both old and new members.

I fully acknowledge that you are correct.  We are always open to constructive criticism.  Originally we were avoiding the 5000 unsearchable cluster of topics found on another defunct forum.  We have considered changing it but many have concluded that the current system works so leave it.

I have considered making boards out of each of our current topics.  We would have a VED Board, a Traction board, etc.  I would then move all of our existing topics with all associated posts to their new respective board.  Members would then allowed to make new topics inside of those 20 or so boards.  That would make one gigantic topic full of old posts in each board along with new topics that would only grow to relatively few posts before someone made a new topic.  The logistics and work of changing that at this point would be more time consuming than I can commit to.

Our growth does however temp me to revisit the possibility of making the change.

HAWK - can there be a new thread for Xiaflex trials feedback please....

HAWK - do I do this or do you do it??

Iceman,  I moved your request for a new topic to the "New Topics" thread.  I also put a subject line on it for you.

When you brought this up before in the "Developmental Treatment" Thread, this was the exchange:

Quote from: Hawk on October 09, 2008, 12:18:02 PM

Quote from: Iceman on October 09, 2008, 01:13:54 AM
...maybe there should be a separate thread for this as this is a major thing!!

Iceman,  This is the separate thread for developmental treatments.  Xiaflex and the trials are the primary thing discussed in this thread since developmental treatments are limited.  If we took those out, this topic would be next to dead.

I am willing to consider a new topic if you think it will get one or two posts a day.  I think it will either sit stagnant or the developmental Treatment topic will sit stagnantt.  The developmental Treatment is specifically for developmental treatments under trial. If we pull Xiaflex out of that what will that topic be for?  If someone new to the forum wants to post about Xiaflex trials wouldn't it be confusing to them that they should not post it under "Developments Treatments" ???

I for one do not see any advantage to anyone and in fact think it would be a detriment to have redundant threads that scatter posts rather than consolidate posts that are about the same issue.

    All members can use the "Search" tool to isolate subjects of interest. If one were wanting to read posts that only contain Xiaflex in the text, open the Developmental Drugs and Treatments thread and type "Xiaflex" in the "Search" box at the top-right of the page and press the Search button. Three pages (today, approximately 80 posts) will appear in chronological order from newest to oldest that have the word Xiaflex in the post. It is an easy way to isolate posts about your subject of interest quickly within a thread. If you suspect your subject of interest has posts in other threads, open and search those threads one at a time. In a matter of minutes you can easily locate posts of interest and know which thread your discussion of interest is in.
   Open the Peyronies Disease Discussion Forum main page that shows the list of topics. A search for Xiaflex with this page open will show a list of Xiaflex posts throughout the forum on many different threads. This will give you an idea of how your subject of interest is spread out. A search for Xiaflex in the forum today found Xiaflex references in THIRTEEN (13) different threads!
   Verapamil has its own thread because it is an approved drug available by prescription and used by many, and it needs a thread to chronicle its results. If and when Xiaflex is approved, maybe it should have its own thread so its results can be chronicled. Until then it is truly Developmental and should be discussed in the Developmental thread IMHO.
   

did this site go down yesterday???

It did..   But got fixed and back up as soon as possible.   

Thanks for your patience!!

it goes to show you the lifeline this site has turned out to be - with out it we are f@#$ed

Prayerfully we can all hope that some day, this site won't be needed at all!!

Hi.
I am new and can't find the women's forum. My husband got peyronies a few years into our relatively young relationship -and he is on the young side
for this disease. The only thing we learned/tried medically -before other problems 'took over' our lives- were vitamin e, paba, wait and see - none of which appear to have helped.
FURTHER - as bad as this disease is -we have had several much bigger issues in our family which have kept us from dealing with it emotionally, have hurt our intimacy and sex life, and kept us from learning about other treatments and ways of coping.

Anyway, I don't have a lot of time to spend here right now, but do have a question that I suspect the women here can help me with...but, again, can't find the women's forum -can someone please help me?
Thanks.

Welcome trenchy. Ladies who register must be approved by administration before they can see and have access to the Ladies Room. Once approved, the link to the Ladies Room should appear on your forum home page. Send a private message to Hawk if the Ladies Room link does not appear in a day or two. Here is the html message on the forum home page that is sometimes difficult to notice:''

"Welcome to all women affected by this condition.  Soon after you register and are approved,
you will be able to see and have access to the only totally private, all female forum of its kind."

If you have questions for the mens forum, find the best thread that matches the nature of your question and post away... you will receive support here.

I would like to see a topic simply labelled 'What has worked for me and what has not'.

I know that there is the improvements section, but somehow that doesnt quite fully reduce the topic to the essential questions. A lot of the posts on that topic delve into histories and then go onto dicusss various treatments tried over a period of time. I want to know what people put their faith in most or have no conviction in.

I would like to see the lists like that. It would give us more information to see if there are common treatments that work for a wider set of the population. It might give a higher confidence to try a certain treatment over another. There is a lot of information (especially on this great website) that it could help to focus our efforts and choices on those with the best chances of success.

I would add in the first post from the administrator that it should state that this topic should be just be these two simple lists (What has worked/what has not) and not a discussion of them. That can be had elsewhere.

I realise that you might feel that the improvements topic is adequate. I took care to post it here rather than dilute that board with the same message.

Lastly, I realise that this could also be designed as a poll, but I suspect that you will have an ever-ending list of treatments, so it wouldnt work.
 

Welcome Solver.

Thanks for the input.

I think your suggestion as presented has some merit.  Especially when you mention it is a place for simple lists and not for discussion on the lists.

Two questions:
If I update my list because I just decided today that 12 months of IR heat did not work, do I post that again or go back and edit my original list in my initial post.  If I do that then no one would be aware of the updated list unless they happened to reread it.  If I I just mention "IR Heat did not work" in a new post then they do not see the rest of my list and my list becomes fractured (spread all over).  I guess they could repost their list with "IR Heat" under things that did not work and I could delete the original post.  (Members can edit including deleting all the text from the post but they cannot not delete the actual post)

Next question is should these lists just be part of the "Our Histories" format rather than a new topic?

I am interested in what you and others think.

Hawk:

Based on my experience with forums and especially ours, I firmly recommend that these two subjects be left in the "Histories" thread/topic rather starting a new area topic/thread.

That way, we have a post stating where we started and then posts relating where we have or have not come with any and all treatments/therapies. We should encourage any and all members to be diligent in relating their experiences whether good or bad with whatever method they are using in order that all may have the benefit of their experience(s).

It seems that so many guys register, make a few posts, maybe get some relief and never come back to state their outcome good or bad. We need to collect any and all information relating to any therapy/treatment they used.

Old Man

Hawk:

I think you could allow people to say 'This is an update from a previous post' but not let people abuse that. I would suspect someone would have to have improved/flatlined or gone into remission/and then improved again. In other words, it shouldnt happen too often. You could include it in the our histories format, but I suspect the response will be piecemeal as you have other information in those posts that you try to gate. In short it would be better on it's own.

Old man:

I defer to your experience in these matters. However, many people dont really articulate their stories concisely and it doesn't get to the facts quickly. There is a lot of unrelated information in the histories and one has to sift through each post to gather tidbits of information. I am not suggesting that this in any way replaces the dicsussions/histories and detailed information on the other forums, rather provides a complement to them. At the moment for example, I find gems of information here and there about what has worked for people then take a note and try and unearth some more. This new topic would help cut right through that and allow me to move on to the next stage more easily, i.e. search the forums for more information or google it.

I haven't run a forum so it's really your call. Thanks for operating this one though. I'll be on it this weekend, bit easier than doing it at work!

Have a good one yourselves.   

The Solver:

This matter will re resolved by Hawk as it will be his call as to what actually happens. What I am saying about leaving the progress of ones Peyronies Disease case be left to the Histories thread is that not every one can and will write in the best manner.

Unfortunately, not all of the member of this forum can put into words exactly what they are saying. In addition, since the members come from all over the world, the differences in language meaning comes into play. What one says in the USA may mean something different in another country.

I am leaving the outcome of this discussion up to Hawk.

Old Man

Hi Old Man,

Happy to leave it to Hawk to decide. Either way is fine by me, there is a ton of good stuff on here.

Also, I have no issue with people's ability to convey themselves in English, merely that the information content of a list is distilled and therefore cuts to the point. 'Tis all.

Best, solver

If our "Histories" section had a "Here is what has helped and what has not helped" section, and one updated it, would the "New Post" format be activated? (not sure if I am saying this right - the icon is a darker color for the folder and the font is bold with a "New" button present).

That way, if someone updated their history, then others would note that change. Casual and infrequent visitors would not be able to see such evolutions I suppose, but then neither would they by a thread with "updates" scattered throughout.

I think bundling it in History works, but might limit those who participate. A separate similar folder might get others to post - my main concern is that the posts will be  a quick read: Works - nothing. Didn't work - everything else.

Tim

You know, information on successes would be great however the information would need to be detailed and rigorous to be of value. I just started Pentox 1 month ago and soon will start VED protocol (when I receive my "toolkit"). I also intend to get my vitamin D level analyzed soon. If (god willing) there is a marked improvement in my disease, I would love to share that. I intend to keep meticulous records as to all medications taken and any variations from the prescribed dosages and protocols. Only with a detailed accounting of time frames and specific improvement and all of the above can the information be of any value. For the record, if I was to/can maintain the status quo (ie no further deterioration) I will consider that success BUT will not report on that.

Mike,

keep in mind we do have a topic on stories of improvements as opposed to the discussion ye are having on lists of what has and has not worked for me.

I think a "symptons of peyronies" topic would be good.

We all know about the plaques, curvature etc. but there are also some symptons that are unique, like changing color, changes in flacid state, spots on it, discolored arteries etc.

A place where ppl can discuss these less "general" symptons might be good.

If you look at the topic "Progression of Peyronies Disease" you will see that is exactly what that topic is.  I notice you just posted there about your symptoms.  The first post at the very beginning of that topic says:

QuoteDiscuss progression of symptoms from the very first sign of Peyronies Disease to calcified plaque. This includes curvature, pain and other manifestations including improvement of these conditions. Include time frames and other relevant information.

I would like to open a discussion for gay men.

Thank you,
NYC Jake

Quote from: nycjake10002 on February 16, 2009, 11:40:31 AM
I would like to open a discussion for gay men.

Thank you,
NYC Jake

Quote from: Hawk on February 16, 2009, 10:10:32 PM
Jake,

I still am at a loss.  A gay guy can see and respond to your post as clearly on the standard topics as he can on a topic called "gay...."  .  Why would 'where he responds' on an open forum affect your ability to communicate? Are you asking for a private topic visible only to those that declare themselves to be gay? Or possibly are you asking for a topic that only gay members can respond in ??? Our topics deal with treatments of a mechanical, oral, surgical nature.  These topics all deal with studies, scientific, or rational thoughts on what may work as a treatment.  If you discuss VEDs, you can discuss that on our VED topic etc.  They have nothing to do with sexual orientation.  We do have one topic on Psychological Aspects".  Post what you want there concerning coping with such aspects.  Label it as you choose as long as it is not graphically tasteless (regardless of sexual orientation).

Additionally, you can make a topic for non-treatment issues in the "Off Topic"area of the forum. Feel free to label it 'Gay Men" or any such title YOU choose if you do not want to use the common "Psychological Aspects" topic. Every one that has psychological issues have unique issues.  Young, old, married, single, virgins, sexually addicted, suicidal.  We do not all share every aspect of another's struggles but we respectfully listen and contribute if we feel we have something meaningful to share.  That would be the same if there were 10 separate psychological aspects topics. We are not interested in trying to segment or segregate people into categories.

Additionally you can have any mutually acceptable conversation you want by secure personal messaging without furnishing email addresses.  I feel this pretty much covers every tool you need to freely communicate which anyone you choose on any topic you desire.

Hawk

Hawk, I do not think that a separate section for gay men will get much traffic, and is unlikely to serve the need that Jake wants it to serve. I agree with virtually everything that you have said in your response.

However, it might be of value to some members, and for that reason, we could certainly create a topic area for that purpose. I doubt very much if it would work if it were a "closed" board like the Women's Section, but it might form a place for folks to discuss their own issues. Other than the risk of it ending up like the "Ultrasound Therapy" sub-board (hint: no reads since December), I doubt it could hurt us to create such a place.

Tim

I have received an invitation to join a peyronies disease support group through "grouply.com". The only problem is that when I went there to see what it was all about, it asked for my yahoo ID and password.

FYI, don't do it!

Tim

I think a poll on pentox might be in order.  I"m curious how many of our members are taking pentox, what results they have seen, any side effects, especially tingling in the legs in the beginning.

Quote from: Tim468 on February 18, 2009, 08:51:34 PM
I have received an invitation to join a peyronies disease support group through "grouply.com". The only problem is that when I went there to see what it was all about, it asked for my yahoo ID and password.

FYI, don't do it!

Tim

Thanks Tim, I too think that the separate "gay men" topic will get much traffic, or at least I hope not, but it could be really useful for someone in need of understanding.

Best to you all,
NYCJake

I am in the process of choosing between Dr. Levine and Dr. Leu.  I live in the midwest.  Dr. Levine is out of my insurance network but about a 5 hour drive away.  Dr. Leu is in my insurance network, therefore 100% covered, but will require a long flight and airline tickets for myself and my wife.

I've scheduled an appointment with Levine, but it is almost 3 months away.  In the meantime, I'd be very interested to read the accounts of those who have received treatment from either of these doctors in order to understand 1) what actions I could be taking now, on my own, to improve my condition and 2) how their recommended treatment protocols differ.  It appears that Levine may be the only Uro who is recommending traction devices. 

I don't see a way to start a new topic on the general forum, and it appears that only administrators can do so.  Is this correct?  Or how do I create a new thread?

Quote from: souldigger on March 15, 2009, 09:26:07 AM
I don't see a way to start a new topic on the general forum, and it appears that only administrators can do so.  Is this correct? 

That is correct.  Only administrators can start new topics on the main forum.  That is what we take suggestions ofr new topics that are not covered by one of the other topics.  You can start new topics in the "Off Topic" area of the forum.

Hello, I'm new here... let me introduce... I'm Ronald, 44 y/o male from The Netherlands. I don't know if this is the right forum and topic to introduce, if not, I'm sorry...

I got diagnosed with Peyronie at the end of november 2008, and I am pretty much devastated about it... my dick changed in shape (45-60 degrees upward) and shortened about 2,5 cm (=1 inch). I had felt the scar tissue from about spring 2008, but had no idea what it was. I have felt, and sometimes still feel, ashamed about this condition. It's not always easy to talk about something that that takes away your balance, and makes you insecure, even about the future, like this is...

I'd like to tell a few things about myself upfront, and don't be bothered with it (feel free not to react if this ticks you off!), I'm a gay guy, happy in my relationship for over 16 years. Me and my partner engage in sex with other people at private parties. The fact that I have a loss of length from over 21 cm to 18-someting might be a reason to say I still cannot complain, but that is not the case in my feelings...

I'm here to know more about other peoples experiences, and to learn more about the disease.

Thanks for reading, Ronald

ronald
This may be off topic but if so Hawk will move it. (Thanks Hawk).

First pryronies is nothing to be ashamed of. Others like myself have the peyronies stabilize in about 18 months. And in some of us the curve corrects in about 18 months but the loss of length is still there.

The loss of length can be helped by proper VED therapy. I used the proper therapy for a year before my implant and it helped a lot for a better outcome even after almost 13 years.

We are all in the same club straight or gay makes no difference we are still men with our ego's. Your length is larger than normal but the loss is still as devastating. I went from about 5.5 inches down to almost 4 inches. VED brought me back to about 4 3/4 inches and now with the implant I am 4 5/8 inches and getting larger. Girth is almost 6 inches and pretty much stable. In my sex life I never had any complaints most women will tell you that girth is more important in sex than length. My wife of 40 years stood by me thought all this and never-ever complained, and we still had an active sex life.

Again, go to the VED thread and read about the VED. Go to the Child Boards and the proper exercise is there. If you have problems Old Man is the pro and always willing to help.

Good Luck, Keep the faith all will work out in the end.

Jackp

First, thanks, Jackp for your warm reaction!
Is there a concensus that (mild) vacuumpumping is not dangerous in this situation? I have been doing it a few times this last few weeks (even before this all happened i liked doing it), and what i liked was that my dick was straight again for a minute..!
Today, I have been reading earlier contributions on this site, and it made me mixed up and straightened me out at the same time... some answers, more questions with no answers...
In my case, Peyronie is more of a problem between my ears then it is between my legs... I can still do sexually what I want to do. But I look at my own erection in disgust. My boyfriend is great, he doesn't have a problem with my physical condition, and our other sexpartners don't seem to have, but I do..! After the first few months, with sometimes total panic, grieve, and being mad as hell, i somehow seem to accept what has happened. I had a great "thing" that only a few % of the men have, but the Ferrari is wrecked... and I am in mourning about it, and that will take time...
In about 6 weeks I have a meeting with the urologist again. I have been thinking about an operation eventually, but the type of operation that seems to be the most appropriate cannot be done (so I'm told) without also circumcise... and I absolutely don't want that..! I'm even more afraid that things go wrong due to such an operation, what are the stories of other people??
Thanks for reading! Regard, Ronald

Ronald

Go to the physiological section.

Jackp

Jack:

Do you mean psychological?

Mick

Yes, I guess I need spell check. DUH!!

Jackp

Unfortunately for Jack, "Physiological" is spelled correctly! It was just the wrong word.

But I knew what you meant.. it's almost like I'm physic.


Tim

I'm not entirely familiar with the SMF forum options, but with some forum packages, you can restrict acces to certain boards until a certain number of posts has been reached. If this is a possiblity with the SMF setup, maybe we can at least restrict the spammy posts to one area of the forum, because they won't ever reach the threshold to allow them to post elsewhere.

Should this not be an option, I guess we'll all just have to stay vigilant against spammers and accept that on occasional they will temporarily form part of our landscape.

Newguy,

If I understand.....

I can restrict members to any boards (not topics) based on their post count.  For instance "newbies" (less than 4 posts) have some restrictions and have very limited PM capability.  I could make a spam board and set it so that ids the only place a person could post until their post count is 1 or 2 posts.  The problem is that every legitimate new member would have to post one throw-away post in that topic in order to make a real post elsewhere.

It would almost be more functional to move suspected spam posts to a "spam topic" in the Off Topic board.

How about a thread relating to reliable supplement sources? If we had a list of trusted online and offline sources that would save users time and a useful resource. Many of the sites are no doubt obvious to many here, but not to those new to the site and new to peyronie's disease. Information such as site location (to aid local ordering) and any special notes about difficult to attain supplmements could be included (the herbs recently being discussed for instance).

I wouldn't mind updating a sticky post with all new information presented. Maybe as a rule a site should only be able to be added to a trusted list if multiple users have ordered from it and had a good experience (fast delivery time, high quality items), until which time they can be added to a standard or pending list, awaiting actual approval. This will also help avoid people signing up and suggesting spammy sites.

We can potentially also have a sites to avoid list too, though it may be surplus to requirements if the approved list is comprehensive.

What do people think of this idea?

Quote from: newguy on June 15, 2009, 02:38:00 PM
How about a thread relating to reliable supplement sources? If we had a list of trusted online and offline sources that would save users time and a useful resource. Many of the sites are no doubt obvious to many here, but not to those new to the site and new to peyronie's disease. Information such as site location (to aid local ordering) and any special notes about difficult to attain supplmements could be included (the herbs recently being discussed for instance)...

What do people think of this idea?

I see merit in such a topic.  My concern however is that such a topic amounts to a Peyronies Disease Society endorsement.  This could result in potential problems.

If I were to make such a topic I think I would put it in our Resource Library.

The resource library would be an ideal place for it :).   

Understandably we use a lot of acronyms and abbreviations on this forum. 

Problem: I am sure not only brand new members but even regulars have to scratch their heads remembering what ACL, TGFB-1, LDN, AGE etc. mean.  To do a test I Googled some of these and our use often does not even register.

Possible Solutions:

1. Search and replace - The forum can replace any letter combination with any substitute I designate.  You cannot write the letters "P" and "D" next to each other on this forum without the forum software substituting Peyronies Disease. I do this for search engine rankings.  It is the same with the f word.  It gets replaced with F^@%.   I could set up full replacement terms for every abbreviation.  The problem is we can never post the abbreviation if we want to.  If we try it will always get converted.  It will some what increase post length and repetition of long terms.

2. A glossary of abbreviations and acronyms in our resource library.  Someone could write a list of these and those that need to can refer to the list.  This requires a little work on the part of the reader but I think it is within reason and I lean toward that as the best choice.

any thoughts

Well, I see no one has any input on my concern.


I will deal with it.

As suggested, I am beginning a section for supplement sources.

Individuals interested in recommending a source please look at

Quote from: Hawk on August 14, 2009, 12:17:31 AM

and write up a similar description I can cut and paste to the post in our resource Library.  Please include Company name, web address, comments, and products offered.

To discourage any possible spamming, Recommendations will be taken from members with more than 75 posts.

Quote from: newguy on June 15, 2009, 02:38:00 PM
How about a thread relating to reliable supplement sources? If we had a list of trusted online and offline sources that would save users time and a useful resource.

Thanks to NewGuy for the suggestion and to George for the help.  The new topic is located in our Resource Library.  Check it out and let offer any suggestions on format.  I considered including a list of recommended supplements but due to time and other concerns I did not go through with that.

This is probably a silly suggestion, but I've been thinking it ever since going through so many threads on so many different treatment options.

How about an optimal treatment plan thread?

For instance I personally think the optimal treatment plan would involve (in no specific order):

- hyperthermia (specific temps for specific times)
- traction
- pentox
- vitamin E
- some kind of nitric oxide stimulant (viagra, argenine, horny goat weed)
- flax seed oil (it helped my erection quality)
- VED
- low dose naltrexone
- rose hip oil (topical)

Most would probably have a very different list to mine, but given time I'm sure we could all work out a certain standard list of accepted treatments, maybe even a recommended treatment protocol. Possibly even a protocol that takes into account time since injury, speed of progression etc..

At then end we'd hopefully have one thread that stated all the treatment options that have shown results for people here, with a short (paragraph) summary of the treatment and a link to the forum thread which can explain that treatment in more detail.

Skunkworks,

That probably has some merit but I am so busy working on other things that I have no tome to think about it.  I will let others hash it out.

Would it be appropriate/usefull to create a special topic area dealing with Peyronie's Disease issues as they pertain to younger men? I have noticed that a significant number of new members are under 40 and are struggling with Peyronie's in the context of dating, recent marriage/partnership or trying to have children. Obviously, this condition is not easy on any age group, but I think the sexual function and psychological aspects of Peyronie's are particularly devastating for younger men (such as myself) who may be otherwise healthy (i.e. not suffering from type II diabetes, cardiovascular problems, or prostate cancer).

My reason for mentioning this is I would expect that treatment options and indications for surgery would vary for men in different age groups. I'm also curious if the causes and progression of Peyronie's in younger men is perhaps more frequently due to acute injury rather than the gradual progression, as mentioned in some older members histories, and thus require a different treatment approach. In that same vein, I wonder if the oft-quoted ratio of disease resolution of 10% experiencing spontaneous recovery, 40% experience stabilization, and 50% get worse looks different based on age groups (or is it nonsense altogether?). Anyway, just a few thoughts and I'd like to know what everyone thinks.

Best,

Skjald

SKJALDBORG, thanks for the input.

It is important you understand that you need no permission to make a topic.  Just do it.

If you mean an entirely separate Board then I would say no.  Younger men my have specific interests under surgery , or psychological aspects but their experiences are far more similar than they are different so their interests are better served incorporated in with the other posts rather than isolated from them. 

Because something has some difference is not a reason for a separate board or we would have a board for Nesbit, one for implants, and one for plaque excision etc.  We are a community not segmented individuals ever more isolated from each other with minor variations of disease, treatment,or personal background.

Skjaldborg - Although there are bound to be teething problems, the beauty of the new board is that we new create these niche threads, that are important but perhaps not worthy of creating a specific board. I recall a few such requests in the past relating to specific groups of peyronie's sufferers and only now can this can become a reality. The topics you touch on are diverse, so I guess the thread would be best placed in either 'Psychological Component - Coping with Peyronies Disease' or 'Open Questions or General Comments (that won't fit under any other topics)'. Maybe the former choice would be best.

So anyone can create a new topic under any of the boards?  However only the administrator can make a new board (for example Oral treatments would be a board)?

Quote from: ComeBacKid on August 31, 2009, 03:25:19 AM
So anyone can create a new topic under any of the boards?  However only the administrator can make a new board (for example Oral treatments would be a board)?

With the new board format that is correct.

Is it possible for foriegn members who don't know english to get a language translation on the site?  I know we talked about this a few years ago and I forget what we concluded.  Is this possible?  Looking at our mass mailing project we really have things going now.  We still have many members in the USA and UK, i was talking to a foreign guy, only for him to tell me hes an american living abroad, not from that country.  I wonder how hard it would be to have language translation so a member could log in and see everything in their language, and how much it would expand our membership?

Comebackid

Dear all,

I am in the language business and know a little bit about this. Translation of the menu items and some of the smaller informational sections might be possible, but translating forum posts would be nearly impossible. There is the possibility of using Google translation tools or website translation services like Babel fish, but because machine translation is in its infancy, the results would be useless if not comical. Also, our forums are pretty informal so any bad spelling or poor grammar (both of which I am guilty) usually just comes out as garbage with translation software. Using human translators to translate thousands of forum responses, while accurate, would be prohibitively expensive.

It might make more sense to create a page with links to information on Peyronie's in other languages. This way you would just need a few lines of text in several major languages pointing to links on the disease in those languages (maybe French, Spanish, German, Chinese, Arabic and Persian Farsi?). There's probably a way to add some metatext to the website to get hits for these pages in other languages-I'm a little fuzzy on the technical aspects. Anyway, that could probably be done at very little or no cost.

-Skjald