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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 64237 times)

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Joshua

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NEW TOPICS & OTHER SUGGESTIONS
« on: September 17, 2005, 10:34:37 AM »

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

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Re: NEW TOPIC SUGGESTIONS/REQUESTS
« Reply #1 on: September 19, 2005, 10:14:32 AM »

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

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Re: NEW TOPIC SUGGESTIONS/REQUESTS
« Reply #2 on: September 19, 2005, 02:03:29 PM »

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

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Re: NEW TOPIC SUGGESTIONS/REQUESTS
« Reply #3 on: September 19, 2005, 04:02:50 PM »

Nick,

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

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Re: NEW TOPIC SUGGESTIONS/REQUESTS
« Reply #4 on: September 19, 2005, 05:03:45 PM »

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

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Re: NEW TOPIC SUGGESTIONS/REQUESTS
« Reply #5 on: September 19, 2005, 05:07:21 PM »

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

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living with the psychological aspects of Peyronies Disease
« Reply #6 on: September 20, 2005, 02:01:44 AM »

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

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

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Re: living with the psychological aspects of Peyronies Disease
« Reply #7 on: September 20, 2005, 10:14:11 AM »

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

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

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

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

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

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Re: NEW TOPIC SUGGESTIONS/REQUESTS
« Reply #8 on: September 21, 2005, 10:29:19 AM »

How about a topic marked "other Peyronies Disease forums". Not that there are many others worth looking at :-)
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Re: NEW TOPIC SUGGESTIONS/REQUESTS
« Reply #9 on: September 21, 2005, 11:04:45 PM »

Nick,

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

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

Give me some idea what the purpose would be.
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nick

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Re: NEW TOPIC SUGGESTIONS/REQUESTS
« Reply #10 on: September 22, 2005, 10:10:34 AM »

The only purpouse would to say hey I found this forum last night, check it out. I was not aware there are only 2 forums out there. I know I have looked and not found any. I just figured I wasn't looking hard enough.
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Re: NEW TOPIC SUGGESTIONS/REQUESTS
« Reply #11 on: September 22, 2005, 01:39:42 PM »

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

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

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Re: NEW TOPIC SUGGESTIONS/REQUESTS
« Reply #12 on: September 23, 2005, 05:00:25 PM »

If I find one you'll be the first to know.  8)
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Re: NEW TOPIC SUGGESTIONS/REQUESTS
« Reply #13 on: November 01, 2005, 08:32:47 PM »

I know that removal of the prostate sometimes causes Peyronies Disease.  What about recurring prostate infections.  Is there a relationship?  I haven't seen any responses that allude to prostatitis, even though it is a common complaint.  I was wondering if it is more frequent among Peyronies Disease  patients.
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Re: NEW TOPIC SUGGESTIONS/REQUESTS
« Reply #14 on: November 02, 2005, 07:26:33 PM »

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

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Re: NEW TOPIC SUGGESTIONS/REQUESTS
« Reply #15 on: November 02, 2005, 07:59:03 PM »

Joshua,

Sure, you can place this under open questions.

Thanks,
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kevin

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NEW TOPIC SUGGESTION: Updates on Pirfenidone
« Reply #16 on: April 09, 2006, 01:34:33 AM »

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

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

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

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

Kevin
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couldbeworse

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clinical trials, collagenase
« Reply #17 on: April 12, 2006, 07:07:36 PM »

It looks like SUNY Stony Brook is doing some work with collagenase (http://www.clinicaltrials.gov/ct/search?term=collagenase&submit=Search).  They're teaming with Biospecifics in trials for Duypuytren's and Frozen Shoulder.  Why not Peyronies Disease?  If no one on this forum tells me why not, then I'll ask the PI at Stony Brook, Why not?
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Re: NEW TOPIC SUGGESTIONS/REQUESTS
« Reply #18 on: April 12, 2006, 09:05:53 PM »

Here's what I know, or think:

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

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


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Joshua

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Re: NEW TOPIC SUGGESTION: Updates on Pirfenidone
« Reply #19 on: April 12, 2006, 10:33:51 PM »

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

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

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

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

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

Kevin
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kevin

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Re: NEW TOPIC SUGGESTIONS/REQUESTS
« Reply #20 on: April 13, 2006, 03:39:50 AM »

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

I suppose we are getting far enough into the subject of AA4500 that this discussion ought to be placed within that topic's own thread.  Pirfenidone will also benfit from having a topic by its own name to help keep up on developments in that promising but little-reported new area.
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Re: NEW TOPIC SUGGESTIONS/REQUESTS
« Reply #21 on: April 13, 2006, 10:07:59 AM »

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

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

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j

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status of pirfenidone
« Reply #22 on: April 13, 2006, 04:54:08 PM »

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Hawk

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Re:Kevin - NEW TOPIC for pirfenidone
« Reply #23 on: April 16, 2006, 05:11:18 PM »

Kevin,

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

In reality i think the AS400 topic should be gone and that both, AS400 and pirfenidone could be discussed under "news" if there are any development with these two.  I am very open to a rebuttle if someone sees something I am missing.  The bottom line to any topic:  can it sustain and exchange of information.  Looking over our topics, a few of them are not supporting any conversation.
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Re: NEW TOPIC SUGGESTIONS/REQUESTS
« Reply #24 on: April 16, 2006, 10:19:18 PM »


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

cheers.
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Re: NEW TOPIC SUGGESTIONS/REQUESTS
« Reply #25 on: April 16, 2006, 10:35:30 PM »

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

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Re:Kevin - Sold :)
« Reply #26 on: April 16, 2006, 10:47:09 PM »

Kevin,

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

I know next to nothing about pirfenidone. 

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

Thanks
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kevin

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Re: NEW TOPIC SUGGESTIONS/REQUESTS
« Reply #27 on: April 21, 2006, 03:17:07 AM »

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

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Re: Soxfan - Suggesting a new topic for androgens
« Reply #28 on: April 21, 2006, 11:09:11 AM »


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

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

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

The goal is to keep topics manageable to build a vast searchable libray of information that is quickly accessible to us and new Peyronies patients.  If the topics get too specific then it stifles normal conversation that often range a bit off of one specific issue.
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Languages
« Reply #29 on: May 30, 2006, 05:32:38 PM »

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

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

ComeBackid
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Re: NEW TOPIC SUGGESTIONS/REQUESTS
« Reply #30 on: May 30, 2006, 08:55:12 PM »

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

roadblock
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Pentox
« Reply #31 on: May 30, 2006, 09:15:50 PM »

I would like more discussion on the Pentox topic.
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Re: NEW TOPIC SUGGESTIONS/REQUESTS
« Reply #32 on: June 03, 2006, 08:58:39 AM »

Joshua or Hawk-

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

Just as a side note, I had an appointment with him the day after he returned from the Atlanta conference and he was really quite excited by some of the activity and interest generated at the Peyronies Disease sessions.  I asked him about any new ideas that were brought forward and he said he felt there may be a new drug and protocol by the end of the year that may be "very significant".  I think it related to the collagenase treatment but I plan to inquire further at my next visit (next week)...I'll keep everyone informed.  Thanks...
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Re: Language support - ComeBackid
« Reply #33 on: June 03, 2006, 10:28:57 AM »

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

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

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

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

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Re: Topic suggestions , Liam. Roadblock, Wantitstr8
« Reply #34 on: June 03, 2006, 10:52:28 AM »

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

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

Liam commented that:
I would like more discussion on the Pentox topic.

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

I am very interested in hearing back from the 3 of you as well as hearing what others have to say.
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Hawk - Updated 10/27/18 - Peyronies Society Forums

Liam

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Penox
« Reply #35 on: June 03, 2006, 12:07:21 PM »

Good points all, Hawk.

I will be going to my urologist this week for a 3 month psa and plan to discuss Pentox with him.  Today, I am going to buy l-arginine.
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Re: NEW TOPIC SUGGESTIONS/REQUESTS
« Reply #36 on: June 03, 2006, 12:30:52 PM »

I agree...considering the points you made it makes sense that the Pentox discussion continue under the broader topic of "Oral Therapy".  I have seen many websites that become very confusing due to the number of pages within the website and discussions get lost.
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Re: NEW TOPIC SUGGESTIONS/REQUESTS
« Reply #37 on: June 11, 2006, 08:59:07 PM »

Some thoughts and ideas:

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

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

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

ComeBackid
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Stem Cells
« Reply #38 on: July 20, 2006, 12:06:11 PM »

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

Here is a good link to stem cell information.

http://stemcells.nih.gov/

If you go to report on stem cells there is good information on stem cells that could be added to the library.
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“Intimacy and Sexuality”
« Reply #39 on: July 20, 2006, 12:58:11 PM »

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

I have talked with some people and it is a major side effect of Peyronies Disease. I see a need for reeducation and unfortunately it appears that some people may be lacking the knowledge that will enable them to be creative.  While it may not be a heavily posted topic I believe any who are willing to post would be helping the many who are embarrassed to ask.
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Tim468

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Re: NEW TOPIC SUGGESTIONS/REQUESTS
« Reply #40 on: July 20, 2006, 03:07:30 PM »

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

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

Tim
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How about a multi-step program?
« Reply #41 on: July 21, 2006, 07:02:35 PM »


   I see two distinct areas of therapy and healing. Most threads deal with the (1) Physical healing. More subjects dealing with the (2) Psychological aspects would be a good thing, perhaps broken into some sub-components; possibly Intimacy and Sexuality, Acceptance, Talk About It and others. If we could take it a step further and develop a multi-step program that would provide an order to the steps of acceptance, communication, trust and healing, etc. it would be easier to get started on the road to healing. As it stands, we have many wonderful thoughts and processes about psychological aspects but they are rather scattered through the threads. If a process was agreed upon, the steps and program could be located in one place where a new person could immediately see that there is in fact a process in place to help with the stages of Peyronies Disease. We already have pretty much written the book on VED therapy and it is working; we might as well roll up our sleeves and organize a multi-step approach for men and women to use as a guideline for healing, communication, adaptation, sexuality and other areas. No one has anything like this so at least we couldn't be accused of plagiarizing anyones paper.  ;D
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Re: Angus, BLBC, Tim
« Reply #42 on: July 21, 2006, 07:18:03 PM »

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

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

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Re: NEW TOPIC SUGGESTIONS/REQUESTS
« Reply #43 on: July 21, 2006, 07:59:52 PM »

Sex is an important topic.  Language usage would be the biggest determinant of whether it would be acceptable by a cross section of users.  Clinical terms would have to be used. 
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Re: NEW TOPIC SUGGESTIONS/REQUESTS
« Reply #44 on: July 21, 2006, 08:04:06 PM »

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

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Christine and others, Forum, sexuality, wording
« Reply #45 on: July 21, 2006, 08:29:43 PM »


    The thread and subject probably should deal with attitude, self esteem, learning how to communicate and similar things in lieu of being a mechanics of sex guide. The first steps are self esteem and a man changing his way of thinking, then communication. I know I know.... men changing their ways of thinking may seem to be a contradiction of terms  ;) but it is possible. And Hawk, one of the subjects should be a term you used in your last post: Spouse Time. I like that! 
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multi step program
« Reply #46 on: July 21, 2006, 10:15:01 PM »

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

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

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

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BLBC, let me re-phrase...
« Reply #47 on: July 21, 2006, 11:46:02 PM »


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

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

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

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

   

     
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Liam

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SEX Guide
« Reply #48 on: July 22, 2006, 12:24:40 AM »

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

I agree 100%.
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A call for your stories - PM me!!
« Reply #49 on: August 11, 2006, 09:41:01 AM »

Dear Folks:

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

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

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

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

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

Thanks in advance (and hopefully).

Tim

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