NEW TOPICS & OTHER SUGGESTIONS

[GS]

Re: Topical Treatments

I'm seconding Slowandsteady.  I just ordered a tube of DHT topical gel; my hormone replacement doctor suggested trying it and I'm not having a lot of luck finding information about it on the internet.

[slowandsteady]

One suggestion I have is to have a place for discussion of topical treatments. There is one for DMSO, but not all topical treatments are DMSO.

[Steve]

  I just logged into this board, and lo and behold, I've got a 'Notify' Tab  

Now, I'm going to go and look at my old favorites and see if I've got the tab there too (Fingers crossed).

BTW, I heard from Kimo (I still keep in touch with him via email) and he tells me that he doesn't get any notifications either (but was without a computer for a long time, so maybe he got dropped???).

Thanks again,
Steve

I just checked my old boards YEAH!!! My Notification Tabs are back!!!!! Thanks Hawk!
Any idea why the fix didn't 'stick' last time?  I sure hope it doesn't come back.

[Hawk]

Steve, are you still having the problem?

Hawk

[Steve]

Anyone else have this problem???  Some time ago, I stopped getting email notifications of new posts in the forums.  When I log into a forum, on the tabs, this is what I see:

At one time, Hawk managed to fix it, but it's back! 

Any ideas?  As it is now, I've got to go to each forum individually, and search for any new posts (which I'll admit, I don't do very often  ).  It'd sure be nice to get emails when new posts are made and be able to jump right to the new posts.

Steve

[newguy]

Perhaps if we can find forums/communities in other languages, we can form some kind of alliance with them, where any particulalrly important news is shared across sites (by somebody fluent in both languages). It could be tricky though, and would perhaps only be relevant is there is a large foreign language peyronie's community that we don't know about.

[Skjaldborg]

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

[ComeBacKid]

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

[Old Man]

Note to all:

The new posts on my computer do not show the right date and time when I log in. Some times are several hours ahead of my CST (now = was CDT) zone. This causes some dates to show Yesterday and other Today, which may or may not be right. Have no idea what is going on either.

Old Man

[lwillisjr]

cbk,

It is working for me. Send a PM to Hawk and let him know. There have been some forum software updates but I don't see how these would impact what you are experiencing. Also let Hawk know what browser and version you are using.

Les

[ComeBacKid]

Everytime I log in I have the same "new" message that I had the last time.  Also when I click on a topic it is not updating all the new messages unless I hit refresh on my computer screen in the navigation bar.  Is anyone else having this problem? I don't know if this is my computer or the Forum?

Comebackid

[ComeBacKid]

I keep logging in and it says I have 2 newe messages, but I really only have 1, and this is an old message I already recieved, when I try to delete the message i get this error message:

An Error Has Occurred!
Session verification failed. Please try logging out and back in again, and then try again.  


Is anyone else getting this?

I also notice that in top posters it says i have 879 posts, then when you click on my profile it says i have 881, seems like the forum software is being a little funky, are we getting an upgrade or something?

Also when you click on all the users, to see their activity the time is not right, and the exact same people doing the exact same activities are the same ones 6 hours ago when I checked.

Comebackid

[lwillisjr]

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.

[ComeBacKid]

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)?

[newguy]

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.

[Hawk]

SKJALDBORG, thanks for the input.

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

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

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

[Skjaldborg]

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

[Hawk]

I see some value in new members seeing popular views on a "total treatment package without pouring over many separate boards but I am not sure it warrants an additional board.  My guess is that such a plan would be pretty consistent with:

A mechanical device
Pentox
ED drug (C, L, or V)
and combination of ALC, L-Arginine, Vit E
Maybe Horny Goat Weed, ginko, pycnogenol
Possibly some Hyper-thermia for good measure

It is hard to imagine that in 1000 different combination.  I almost think it could be a topic within general comments but I might be wrong.  I am open to thinking about it and hearing some more from you or others.

[newguy]

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?

I would think that such a thread could be placed in the oral treatments board when things have calmed down a little. Then people could link to their treatment plan posts in their signiture if they wanted. That would be useful for everybody. Alternatively people could be encouraged to place their current treatment regimen in their "Our Histories" writeup.

Hawk - Good call. With so few posts, it makes sense to combine them.

[Hawk]

We have two topics that are 5 years old and would only have 75 combined posts.  They are:
Extracorporeal Shockwave Therapy (ESWT)
Ultrasound Therapy

It is my intent to merge these into one topic.

I think these treatments are seldom used and the posts are seldom posted.  Even combined they will be our smallest topic other than Congenital Curve and Accounts of improvement.  Both of which are only about a year old.  Should they begin to draw posts we can split them again.

[Hawk]

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.

[skunkworks]

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.

[tacitus]

Sorry, I know I'm posting in the wrong place but I can't find any topic that is suitable for what I want to ask. I've read the 'Help' section on how to start a new topic but where it says the 'start new topic' option, it doesn't come up when I go to any part of the forum.
How do I start a new topic?

Thanks

Administrator PM'd this member with a link on how to post - Hawk

[Hawk]

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.

[Hawk]

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.

[cowboyfood]

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


I will deal with it.

I think the glossary idea would be significantly helpful to new and veteran members.

Following is a link to a glossary put together by a urologist in Ohio concerning Peyronie's Disease treatments.  I found this very helpful.
http://www.drleslie.org/peyronies.html

And, it may be beneficial to "order" the glossary according to the forum topics.  Or, many other configurations are also helpful.

Also, I'd like to suggest that new members use the search feature concerning terms and treatments that sound strange or unfamiliar.  Click on the "search" link, then click on the "magnifying glass" icon next to the box where you enter search terms.  Then, enter your search term, for example "ALC".  But, before you hit "enter", take advantage of the feature that allows you to limit your search results to a particular forum member.  I would suggest limiting your searches, at least initially, to posters including Hawk, George999, Tim468, Old Man, jackp and Angus.  IMO they are credible.

CF

[Hawk]

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


I will deal with it.

[Hawk]

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

[newguy]

The resource library would be an ideal place for it .   

[Hawk]

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.

[newguy]

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?

[Hawk]

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.

[newguy]

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.

[Tim468]

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

[jackp]

Mick

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

Jackp

[Mick]

Jack:

Do you mean psychological?

[jackp]

Ronald

Go to the physiological section.

Jackp

[ronald]

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

[jackp]

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

[ronald]

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

[Hawk]

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.

[souldigger]

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?

[nycjake10002]

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

[ComeBacKid]

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.

[Tim468]

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

[Tim468]

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

[Hawk]

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

[nycjake10002]

I would like to open a discussion for gay men.

Thank you,
NYC Jake

[Hawk]

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:

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.

[Fredca]

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.