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Welcome to Dr. Landon Trost - Directly answering member questions in the "Medical Professionals" section below the Treatment boards. https://www.peyroniesforum.net/index.php/topic,16512.0.html

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Author Topic: NEW TOPICS & OTHER SUGGESTIONS  (Read 64236 times)

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Tim468

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Um, stories...?
« Reply #50 on: August 12, 2006, 01:26:52 PM »

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

BUMP

Anyone got something to send me?? Hint hint.

Tim
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52, Peyronies Disease for 30 years, upward curve and some new lesions.

Tim468

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Ahem...
« Reply #51 on: August 31, 2006, 01:24:55 PM »

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
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52, Peyronies Disease for 30 years, upward curve and some new lesions.

Tim468

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Ahem!!! Cough.. Cough... Your Stories??
« Reply #52 on: September 04, 2006, 04:21:05 PM »

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
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52, Peyronies Disease for 30 years, upward curve and some new lesions.

AlphaOmega

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Re: “Intimacy and Sexuality”
« Reply #53 on: September 13, 2006, 06:04:32 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.

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.

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.

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.

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Hawk

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Re: AlphaOmega - Intimacy & Sexuality
« Reply #54 on: September 13, 2006, 06:51:01 PM »

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

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. 

Quote
So 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.
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AlphaOmega

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Re: NEW TOPIC SUGGESTIONS/REQUESTS
« Reply #55 on: September 15, 2006, 08:44:50 AM »

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: Hawk
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.

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.

Quote
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.

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 Erectile Dysfunction 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.

Quote
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.

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.
 
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adam24

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Re: NEW TOPIC SUGGESTIONS/REQUESTS
« Reply #56 on: November 17, 2006, 12:20:17 PM »

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! :)
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Hawk

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Re: Adam - Congenital curvature Topic
« Reply #57 on: November 17, 2006, 12:53:37 PM »

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.
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adam24

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Re: NEW TOPIC SUGGESTIONS/REQUESTS
« Reply #58 on: November 17, 2006, 01:01:24 PM »

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!
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Steve

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Moving posts...
« Reply #59 on: February 17, 2007, 09:58:39 AM »

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!
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Re: Steve
« Reply #60 on: February 17, 2007, 10:58:30 AM »

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.
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brit

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Re: NEW TOPICS & OTHER SUGGESTIONS
« Reply #61 on: March 18, 2007, 12:09:51 PM »

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
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Hawk

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Re:Brit
« Reply #62 on: March 18, 2007, 09:20:16 PM »

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.  ;)
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brit

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Re: NEW TOPICS & OTHER SUGGESTIONS
« Reply #63 on: March 19, 2007, 07:05:02 AM »

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 Erectile Dysfunction 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
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Re: Brit
« Reply #64 on: March 19, 2007, 09:21:54 AM »

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
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Tim468

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New topics or not?
« Reply #65 on: March 19, 2007, 09:40:14 AM »

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 Erectile Dysfunction. 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
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Re: New topics or not?
« Reply #66 on: March 19, 2007, 06:27:39 PM »

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 Erectile Dysfunction.... 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
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Tim468

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Re: NEW TOPICS & OTHER SUGGESTIONS
« Reply #67 on: March 20, 2007, 12:25:33 PM »

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
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RoyRogers

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Re: NEW TOPICS & OTHER SUGGESTIONS
« Reply #68 on: April 05, 2007, 03:59:18 AM »

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...
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Peyronies Disease Photos
« Reply #69 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.
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Old Man

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Re: Pictures Penises with/without Peyronies Disease.
« Reply #70 on: April 05, 2007, 11:50:13 AM »

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/
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Re: Peyronies Disease Photos
« Reply #71 on: April 07, 2007, 11:30:18 PM »

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










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.
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« Reply #72 on: April 08, 2007, 09:49:31 AM »

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.

 :)
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« Reply #73 on: September 24, 2007, 08:42:10 AM »

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

Tim
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Re: NEW TOPICS & OTHER SUGGESTIONS
« Reply #74 on: September 24, 2007, 10:09:26 AM »

Quote
dolor, 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
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Liam

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Re: NEW TOPICS & OTHER SUGGESTIONS
« Reply #75 on: September 24, 2007, 09:31:19 PM »

Pene = limp noodle   :o

Hope Not  ;D
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Re:
« Reply #76 on: October 26, 2007, 01:22:25 PM »

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.
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Swap Board
« Reply #77 on: October 26, 2007, 01:56:17 PM »

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
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Swap Board
« Reply #78 on: October 26, 2007, 02:03:07 PM »

Sounds kind of unhygienic to me, but I guess the devices can be sterilized.
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Swap Board
« Reply #79 on: October 26, 2007, 02:12:49 PM »

No worse than picking one up on e-bay! ;)
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Re: Swap Board
« Reply #80 on: October 26, 2007, 02:29:08 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.
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Hawk

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Re: Swap shop area
« Reply #81 on: October 26, 2007, 02:55:59 PM »

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.
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shrout

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Re: NEW TOPICS & OTHER SUGGESTIONS
« Reply #82 on: October 26, 2007, 04:02:39 PM »

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.
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Re:
« Reply #83 on: October 26, 2007, 04:38:02 PM »

EEEEWWWWWWW!
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Re:
« Reply #84 on: October 26, 2007, 05:25:23 PM »

 ;D   :D  :D Fair enough...

It wouldn't bother me in the slightest, but each to his own, so to speak.
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Re: NEW TOPICS & OTHER SUGGESTIONS
« Reply #85 on: August 13, 2008, 06:13:13 AM »

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. 
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Re: NEW TOPICS & OTHER SUGGESTIONS
« Reply #86 on: August 13, 2008, 10:35:24 PM »

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.   ;)
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Re: NEW TOPICS & OTHER SUGGESTIONS
« Reply #87 on: August 14, 2008, 06:10:38 AM »

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.
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Iceman - Inbox PM
« Reply #88 on: September 12, 2008, 06:56:04 PM »

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!)
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Re: Limits of PMs in inboxes
« Reply #89 on: September 12, 2008, 09:10:47 PM »

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
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Re: NEW TOPICS & OTHER SUGGESTIONS
« Reply #90 on: September 14, 2008, 01:36:57 PM »

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
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Re: NEW TOPICS & OTHER SUGGESTIONS
« Reply #91 on: October 01, 2008, 05:29:20 AM »


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?
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Re: NEW TOPICS & OTHER SUGGESTIONS
« Reply #92 on: October 01, 2008, 09:17:06 AM »

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
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Hawk

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Re: NewGuy - Increasing awareness topic
« Reply #93 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.

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 http://www.peyroniesforum.net/index.php/board,11.0.html
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Re: NewGuy - Increasing awareness topic
« Reply #94 on: October 01, 2008, 11:16:05 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.
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Hawk

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Re: NewGuy - Forum layout
« Reply #95 on: October 02, 2008, 12:12:14 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.
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Re: New topic on Xiaflex
« Reply #96 on: October 12, 2008, 11:17:23 PM »

HAWK - can there be a new thread for Xiaflex trials feedback please....
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Re: NEW TOPICS & OTHER SUGGESTIONS
« Reply #97 on: October 13, 2008, 12:52:50 AM »

HAWK - do I do this or do you do it??
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Re: NEW TOPICS & OTHER SUGGESTIONS
« Reply #98 on: October 13, 2008, 01:01:43 AM »

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:
...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.
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A suggestion: searching for Xiaflex posts within a thread
« Reply #99 on: October 13, 2008, 12:23:11 PM »

    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.
    
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