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Author Topic: NEW TOPICS & OTHER SUGGESTIONS  (Read 64238 times)

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Iceman

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Re: NEW TOPICS & OTHER SUGGESTIONS
« Reply #100 on: November 18, 2008, 08:41:46 PM »

did this site go down yesterday???
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Christine

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Re: NEW TOPICS & OTHER SUGGESTIONS
« Reply #101 on: November 18, 2008, 09:04:17 PM »

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

Thanks for your patience!!
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May the Lord Bless you  :)

Iceman

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Re: NEW TOPICS & OTHER SUGGESTIONS
« Reply #102 on: November 18, 2008, 09:17:49 PM »

it goes to show you the lifeline this site has turned out to be - with out it we are [email protected]#$Erectile Dysfunction
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Christine

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Re: NEW TOPICS & OTHER SUGGESTIONS
« Reply #103 on: November 18, 2008, 09:32:34 PM »

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

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Help-New here and desperate!
« Reply #104 on: December 18, 2008, 02:22:29 PM »

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.
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Angus

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trenchy; Ladies Room
« Reply #105 on: December 18, 2008, 04:03:07 PM »

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.
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The solver

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Re: NEW TOPICS & OTHER SUGGESTIONS
« Reply #106 on: January 08, 2009, 04:24:48 PM »

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.
 
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Hawk

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Re: What has worked & What hasn't
« Reply #107 on: January 08, 2009, 06:17:54 PM »

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.
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Old Man

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Re: NEW TOPICS & OTHER SUGGESTIONS
« Reply #108 on: January 08, 2009, 07:01:48 PM »

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
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The solver

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Re: NEW TOPICS & OTHER SUGGESTIONS
« Reply #109 on: January 09, 2009, 10:40:29 AM »

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.   

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Old Man

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Re: NEW TOPICS & OTHER SUGGESTIONS
« Reply #110 on: January 09, 2009, 01:12:07 PM »

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
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The solver

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Re: NEW TOPICS & OTHER SUGGESTIONS
« Reply #111 on: January 10, 2009, 10:19:00 AM »

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
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Tim468

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Re: NEW TOPICS & OTHER SUGGESTIONS
« Reply #112 on: January 10, 2009, 11:55:01 AM »

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
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mikesb

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Re: NEW TOPICS & OTHER SUGGESTIONS
« Reply #113 on: January 10, 2009, 01:03:43 PM »

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.
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Hawk

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Re: Mikesb
« Reply #114 on: January 10, 2009, 02:18:46 PM »

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.
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Fredca

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Re: NEW TOPICS & OTHER SUGGESTIONS
« Reply #115 on: January 13, 2009, 01:28:46 PM »

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.
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Hawk

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Re: Symptoms of Peyronies Disease
« Reply #116 on: January 13, 2009, 04:27:58 PM »

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:
Quote
Discuss 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.
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nycjake10002

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Re: NEW TOPICS & OTHER SUGGESTIONS
« Reply #117 on: February 16, 2009, 11:40:31 AM »

I would like to open a discussion for gay men.

Thank you,
NYC Jake
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Hawk

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Re: NEW TOPICS & OTHER SUGGESTIONS
« Reply #118 on: February 16, 2009, 10:15:55 PM »

I would like to open a discussion for gay men.

Thank you,
NYC Jake



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
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Tim468

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Re: NEW TOPICS & OTHER SUGGESTIONS
« Reply #119 on: February 18, 2009, 08:11:57 PM »

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
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Tim468

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"GROUPLY" requests to join
« Reply #120 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
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52, Peyronies Disease for 30 years, upward curve and some new lesions.

ComeBacKid

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Pentox Poll
« Reply #121 on: February 19, 2009, 04:01:09 AM »

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.
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nycjake10002

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Re: "GROUPLY" requests to join
« Reply #122 on: February 19, 2009, 09:52:32 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
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souldigger

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Suggested new topic - Leu vs. Levine Protocals
« Reply #123 on: March 15, 2009, 09:26:07 AM »

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?
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Hawk

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Re: Suggested new topic - Leu vs. Levine Protocals
« Reply #124 on: March 15, 2009, 04:49:06 PM »

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.
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ronald

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Hello, I'm Ronald, I'm new here...
« Reply #125 on: March 16, 2009, 08:22:28 PM »

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
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jackp

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Re: NEW TOPICS & OTHER SUGGESTIONS
« Reply #126 on: March 17, 2009, 10:20:19 AM »

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

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ronald

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Re: NEW TOPICS & OTHER SUGGESTIONS
« Reply #127 on: March 17, 2009, 02:50:18 PM »

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
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jackp

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Re: NEW TOPICS & OTHER SUGGESTIONS
« Reply #128 on: March 17, 2009, 10:26:09 PM »

Ronald

Go to the physiological section.

Jackp
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Mick

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Re: Re Ronald
« Reply #129 on: March 18, 2009, 08:41:57 AM »

Jack:

Do you mean psychological?
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jackp

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Re: NEW TOPICS & OTHER SUGGESTIONS
« Reply #130 on: March 18, 2009, 03:15:19 PM »

Mick

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

Jackp
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Tim468

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spell check
« Reply #131 on: March 21, 2009, 08:47:11 AM »

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
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newguy

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Restricting Spam Posts to one topic
« Reply #132 on: April 10, 2009, 05:42:24 PM »

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.
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Hawk

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Re: NewGuy - Restricting Spam posts
« Reply #133 on: April 10, 2009, 10:28:56 PM »

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.

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Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
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newguy

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Sources
« Reply #134 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).

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?

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Hawk

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Re:Topic for Supplement sources
« Reply #135 on: June 15, 2009, 10:43:56 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.
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Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

newguy

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Re:Topic for Supplement sources
« Reply #136 on: June 16, 2009, 02:19:15 AM »


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

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Re: XYZ, ABC, @*%$
« Reply #137 on: August 10, 2009, 12:03:54 PM »

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, Low Dose Naltrexone, 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


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Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Hawk

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Re: Hmmmmmmmmmmmmm !!!!
« Reply #138 on: August 13, 2009, 08:39:39 AM »

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


I will deal with it.
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After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Hawk

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Re: Supplement sources
« Reply #139 on: August 14, 2009, 12:26:39 AM »

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

Individuals interested in recommending a source please look at
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.
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Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Hawk

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Re: Sources
« Reply #140 on: August 16, 2009, 06:39:42 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.
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Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

skunkworks

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Re: NEW TOPICS & OTHER SUGGESTIONS
« Reply #141 on: August 18, 2009, 06:26:24 AM »

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.
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This is an emotionally destructive condition, we all have it, let's be nice to each other.

Review of current treatment options by Levine and Sherer]

Hawk

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Re: Skunkworks
« Reply #142 on: August 18, 2009, 11:55:35 PM »

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.
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After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Skjaldborg

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Special area for issues particular to younger men (40 and under)?
« Reply #143 on: August 30, 2009, 05:15:59 PM »

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

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Hawk

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Re: NEW TOPICS & OTHER SUGGESTIONS
« Reply #144 on: August 30, 2009, 05:32:37 PM »

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.
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Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

newguy

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Re: NEW TOPICS & OTHER SUGGESTIONS
« Reply #145 on: August 30, 2009, 11:23:54 PM »

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.

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ComeBacKid

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Re: NEW TOPICS & OTHER SUGGESTIONS
« Reply #146 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)?
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LWillisjr

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Re: NEW TOPICS & OTHER SUGGESTIONS
« Reply #147 on: August 31, 2009, 08:27:41 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.
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Developed peyronies 2007 - 70 degree dorsal
Traction/MEDs/Injections/Surgery 2008
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ComeBacKid

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Language Translation for foriegn members
« Reply #148 on: November 11, 2009, 07:05:45 PM »

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
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Skjaldborg

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Language translation for non-English speaking members
« Reply #149 on: November 12, 2009, 07:22:36 PM »

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
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