NEW TOPICS & OTHER SUGGESTIONS

[Hawk]

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.

[mikesb]

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.

[Tim468]

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

[The solver]

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

[Old Man]

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

[The solver]

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.   

[Old Man]

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]

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.

[The solver]

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.
 

[Angus]

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.

[trenchy]

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.

[Christine]

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

[Iceman]

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

[Christine]

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

Thanks for your patience!!

[Iceman]

did this site go down yesterday???

[Angus]

    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.
    

[Hawk]

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.

[Iceman]

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

[Iceman]

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

[Hawk]

- 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.

[newguy]

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.

[Hawk]

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

[Tim468]

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]

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?

[Tim468]

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

[Old Man]

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

[wayne999]

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!)

[LadyGandalf]

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.

[joe]

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.   

[LadyGandalf]

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. 

[shrout]

      Fair enough...

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

[Liam]

EEEEWWWWWWW!

[shrout]

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.

[Hawk]

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.

[bodoo2u]

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.

[Steve]

No worse than picking one up on e-bay!

[bodoo2u]

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

[Steve]

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

[shrout]

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.

[Liam]

Pene = limp noodle   

Hope Not 

[ninjagaiden]

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 

[Tim468]

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

Tim

[Liam]

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.

 

[Kimo]

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.

[Old Man]

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/

[Liam]

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.

[RoyRogers]

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...

[Tim468]

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

[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 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

[Tim468]

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