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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: GENERAL COMMENTS & Questions - that won't fit under any of our other topics  (Read 409013 times)

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Re: General Comments & Questions
« Reply #50 on: August 20, 2005, 10:08:18 AM »

Posted: Sat Aug 13, 2005 9:35 pm     
 
Larry H


 I wrote the above message to Hawkman and Marti, just didn't hit the right button for my name to appear. Sorry

dcaptian:

You wrote: "But this does bring up another point, which is what should the goals of any advocacy be? I don't know that public education *necessarily* is part of the equation - I have no doubt there are many other rare diseases that are unknown but receive attention from the *right* people. I guess what I'm thinking is that, given the possibility of most-likely limited resources, coupled with the nature of this disease and Hawkman's probably accurate read of the public's thoughts on it, spending time/money wisely is probably paramount. "

Public education is necessary because those of us who have worked and researched Peyronies Disease for some time feel, along with many urologists, that Peyronies Disease is not a rare disease. The NIH classifies a rare or orphan disease as affecting less than 3% of people, or group of people. There is solid evidence that Peyronies Disease affects far more than 3% of the male population in this country. Dr. John Mulhall did a study that showed an incidence of 8.9% and that is probably low.

Why is this important? If the NIH classifies Peyronies Disease as an Orphan Disease, funding for research is almost non-existent. In addition pharmaceutical companys will not spend the research dollars to develop new drugs for a rare disease that they feel drug sales will not give them a fair return on investment.

In a nutshell this is the problem we face having a disease that many don't want to acknowledge, or even bring it to the attention of a urologist. It's under reported and thus felt to be rare.

My Best,

Larry H
 
 
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Re: General Comments & Questions
« Reply #51 on: August 20, 2005, 10:09:56 AM »

Posted: Sat Aug 13, 2005 10:39 pm     
 
Wizard


 Marti said : "educate" the public that 1. it exists..2. there are at risk factors for many men 3. prevention is an issue 4. treatament is an issue 5. the public also needs to take action because Sexual Health is a Right..not a priveledge for only those who can afford it. In short it is the "Your Health, Your Life, Your Right" focus. In other words "Just cause you don't got it now, don't mean you won't get it in the future"


Now we seem to be going the right way! Marti hit it on the head with her last comment. "Just cause you don't got it now, don't mean you won't get it in the future"
Let me pose a question. How many men, if they knew about Peyronies Disease before they got it, would have been more careful while having sex? Would they have not tried hair growth products? What ever it is that may or may not cause Peyronies Disease. The key point in what is being discussed about advocacy and public education is, "If only I knew!" Hawkman himself has made this very statement, albeit about his experiences with Erectile Dysfunction drugs, but you get my point.
Some may have a problem with discussing this with their family members and that is understandable. As long as Peyronies Disease is not discussed in the open it will be pushed aside and ignored. Who continues to suffer because of this? The very men who have this debilitating disease. So we, the suffering men have a choice, status quo or do something about it. The question remains, what are we to do about it?

Wizard
 
 
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Re: General Comments & Questions
« Reply #52 on: August 20, 2005, 10:10:26 AM »

Posted: Sun Aug 14, 2005 12:30 am     
 
j

 A good discussion, and my contribution may sound like I'm once again being devil's advocate, but here it is. I see no benefit to myself, or to friends and family, from me announcing out of the blue that I have something called Peyronie's Disease.

Those of us with Peyronies Disease have had time to get used to the idea. We talk casually - if anonymously - about things like "penile curvature" and "erection quality". But for people who haven't had to deal with something like this, that discussion would be excruciating. They'd have no idea how to respond and would probably just blurt out things that made them feel foolish and embarassed later.

And why burden them? What's to be gained? I've discussed it with a doctor, and with my wife. It simply doesn't affect anyone around me - it isn't making me miss days of work, or walk with a limp, I don't have to suddenly excuse myself from the table and run to the bathroom. If it causes me some depression, frustration - everyone has their own secret sorrows and private battles. That's just part of life.

I don't mean to sound negative about this. Like most people I have a couple of family members who drone on about health problems, iincompetent doctors, the unwanted details of their last surgery. I've just decided I'm not going to be like that. When people ask me how I am, I say "fine, how are you?"
 
 
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Re: General Comments & Questions
« Reply #53 on: August 20, 2005, 10:10:55 AM »

Posted: Sun Aug 14, 2005 12:33 am     
 
dcaptain


 This is an awesome discussion and everyone is making incredibly salient points. Fantastic!

Okay, Larry H, I see your point but I would argue (and I hope you know I mean "argue" in the friendliest sense of the word!) that the public education that we get or have gotten on erectile dysfunction (since it is or at least historically has been largely stigmatized) has largely come from sources of treatment. Let's face it, Viagra has done wonders for Erectile Dysfunction and for raising the awareness of Erectile Dysfunction. So have those commercials from all the medical treatment clinics where doctors specialize in sexual functioning. It has, to a large degree, normalized the issue.

However, I feel as though you didn't see a lot of public discussion of Erectile Dysfunction before Viagra, and before treatments were available. I guess what I'm saying is that, to parallel Peyronies Disease, Erectile Dysfunction became a "public" thing once there was something to treat it. It's public because the pharmaceutical companies want to sell drugs, and there is a huge market. Similarly, docs want to treat it, and again, there's a huge market. We hear about it on TV, on the radio, in the papers.

However, it wasn't as though the Erectile Dysfunction community was creating all kinds of public education spots before Viagra. It was a very private and personal health concern. I have no doubt it was discussed with doctors all the time, but (and I may have completely missed it so correct me if I am wrong) it didn't seem as though the Erectile Dysfunction community was out there beating the drum to raise awareness. There was, however, perhaps a culmination of forces: a realization on the part of Big Pharma that Erectile Dysfunction was a potentially huge market, and the overabundant willingness of patients to address it with medication/treatment.

I guess the parallel I see for Peyronies Disease is that we most likely don't have the resources to raise the awareness of the public to the level we probably want. Your point about struggling with this for years is well taken, as it the point that it is under-reported. I've read that study and if those numbers are accurate, then there definitely is an untapped market just waiting for medicine to address.

However, it seems to me the people who need to understand the potential market is not the market itself, but the pharmaceutical companies and organized medicine. I guess what I'm saying is that the public education, in my mind, should be much more targeted toward those ends. For example, see Dr. Levine's abstract on the APDA site. Many docs don't even know about Peyronies Disease! If urologists all over the country decided to regularly screen for Peyronies Disease, it would place it in the mind of every male patient who went to see the uro. Right? I think that's where the issue of it being "preventable" comes into play. If docs started talking about the need to ensure an uninjured penis, you know guys would pay a lot more attention from the minute they figure out how to work the thing. I for one didn't even know you could get Peyronies Disease before I found myself scrambling on the Internet to figure out what the heck was going on!

Sorry if I'm rambling....

dcaptain
 
 
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Re: General Comments & Questions
« Reply #54 on: August 20, 2005, 10:11:31 AM »

Posted: Sun Aug 14, 2005 7:38 pm     
 
Marti McKown

 He, He you guys are sharp as a tack!..I love this..

Re Erectile Dysfunction..that goes back part way to the AFUD, an arm of the AUA..and you are right in many aspects, as a "public" issue it was on the back burner, until "big Pharma" got the idea, again..the AUA is lurking, Sexual Medicine. Now exactly how it came about I cant say totally, but again we deal with numbers. Physicians who study and print those studies, membership in the AUa, lobbing (in the AUA) etc..

Currently, our docs face the same problem we do..even among their peers (see Stans note on the AUA on our site)..Peyronies Disease is at the bottom of the list. Now heres the deal from our "Patients Physicians" perspective. We have the "high profile docs" as some one called it...we have the patients (at least some) we need data/ bodies to mobilize both..that creats the "lobby"..we are supporting our docs within their community to get the issue upped. I.E Dr Levines study on physician knowledge....case in point, when we get to the AUA (please God) convention..there we are with..10,000 urologists, and a lot of yakking (including press corps)..in booths and out of them..the Docs like Levine are supported by a public "lobby" (us) for lack of a better word...impression..These people are serious...they have a group represented here. This is backed up by our collateral material..surveys, studies, brochures...essentially..chatter and noise. In a back door way..public pressure become visual..they can "see it"...also Big Pharma will be there...hmmmmm anybody got a soapbox and mic I can borrow..cause believe me, I have no hesitation about grabbing a necktie and saying.."listen up"..to those guys.

Education is always the key to recognition..just depends on what the education is about..we have stuff on the site to educate the man with Peyronies Disease...we need "stuff" developed to educate the public about Peyronies Disease...both are education, but they are written differently, and targeted to the "market" we are trying to reach appropriately. You asked about money..Back door marketing..press feleases, feature articles, internet..good majority of that is free stuff and virtual reaity gets the word out fast.

The biggest stumbling block we face is "body count"...it takes more that one person doing it..it takes many, each working in a target area, and coming together and pooling ability, knowledge, interest, and as I always yak about..committment and communication.!

Thx,
Marti 
 
 
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Re: General Comments & Questions
« Reply #55 on: August 20, 2005, 10:12:02 AM »

Posted: Sun Aug 14, 2005 8:00 pm     
 
Marti McKown

 Sorry missed this and I feel it is real important, probably one of the most important things mentioned here..Response to J...The neatest thing about virtual reality, or marketing this stuff is that you (meaning the individual) definately does not have to make his condition publically known if he choses not to...the committees etc are in the background..it is the techy help that makes the difference to a broad based audience. Know anything about ad design, data bases, writing copy, researching congressional bills....lots of stuff, no public view involved, yet, without those who want to do that kind of stuff, it remains talk...and no public knowledge...

ok, I'm gonna shut up now , and yield the floor 
 
 
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Re: General Comments & Questions
« Reply #56 on: August 20, 2005, 10:12:32 AM »

Posted: Sun Aug 14, 2005 10:23 pm     
 
Larry H


 decaptain,

Don't worry about "rambling" or "arguing" as it's these types of discussion that bring ideas to the table.

I think your parallel between public knowledge of EDand Peyronies Disease is a good one because of the nature of both conditions. However, I do believe that there has been more general understand of Erectile Dysfunction over the years since there are a number of health conditions that can result in Erectile Dysfunction. We know that the VED and inplant prosthesis were developed for the Erectile Dysfunction patient. Doctors treating Erectile Dysfunction usually knew the cause, prostate surgery as an example, and could address the problem. Peyronies Disease on the other hand is such an unknown disease in all aspects of the condition. The best Peyronies Disease urologists in the world disagree on how to treat it. So you take this existing situation in the medical community, and combine it with the nature of the disease and you have a real closet issue that has all but remained stagnant for so many years. This, I think, is what we are trying to address and fight.

J, I fully understand your position, and can tell you without reservation that it makes perfect sense. You wife knows about it as does your urologist, so why bring others into this very personal matter. I think this is the mainstream view of most Peyronies Disease patients.

Your mention of your urologist perhaps hits on a workable key in this whole issue of awareness. Since most of us do have a urologist, and those that don't, should, maybe this is an area when patients in general can promote awareness, and not have to stand on a soap box and declair to all you have Peyronies Disease. In short start being a Peyronies Disease advociate with the urologists, put a little pressure on them about their understanding of the mental side of the disease. Read the Levine survey report on the APDA site and ask them the same questions the survey asked, and start pushing them, in a gentle manner, to increase their Peyronies Disease education.

I think this approach fits nicely with what Marti has said in her previous posts. There are many niches that the Peyronies Disease advociate can fill without having to "go public". The lack of awareness in the urological community is just not acceptable, so maybe pushing them a bit will help get the ball rolling. I don't think that Dr. Mulhall or Dr. Levine would take issue with this, as they know the problem, and that was the purpose of the Levine survey.

Anyway, just some additional thoughts.

My Best,

Larry
 
 
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Re: General Comments & Questions
« Reply #57 on: August 20, 2005, 10:12:57 AM »

Posted: Tue Aug 16, 2005 1:21 am     
 
Hawkman

 dcaptain wrote:
However, I feel as though you didn't see a lot of public discussion of Erectile Dysfunction before Viagra, and before treatments were available. I guess what I'm saying is that, to parallel Peyronies Disease, Erectile Dysfunction became a "public" thing once there was something to treat it. It's public because the pharmaceutical companies want to sell drugs, and there is a huge market. ...........

However, it wasn't as though the Erectile Dysfunction community was creating all kinds of public education spots before Viagra. It was a very private and personal health concern. ........................................

I guess the parallel I see for Peyronies Disease is that we most likely don't have the resources to raise the awareness of the public to the level we probably want. ..................................

However, it seems to me the people who need to understand the potential market is not the market itself, but the pharmaceutical companies and organized medicine. I guess what I'm saying is that the public education, in my mind, should be much more targeted toward those ends.

dcaptain


Even though Larry makes the valid point that Erectile Dysfunction is better understood than Peyronies Disease, I have to say dcaptain that in my mind you made a top notch annalysis and correlation. It may not be saying much, but it impressed me.
 
 
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Re: General Comments & Questions
« Reply #58 on: August 20, 2005, 10:16:40 AM »

Posted: Tue Aug 16, 2005 1:57 am     
 
j


 dcaptain is correct in saying that in our system, nothing really happens until there's a product to be sold. Let's not forget that there actually is a legitimate Peyronies Disease product currently making its way (maybe) through the system. It's AA4500/collagenase, and from my reading it seems to be on a firm basis of theory and experiment. The same enzyme has already been through Phase II trials for Dupuytren's contracture and appeared to work well; and Peyronies Disease tissue is essentially the same thing.

I think AA4500 isn't getting the attention it deserves. AA4500 essentially dissolves the form of collagen that makes up Dupuytren's cords and Peyronie's "plaques". The results of the trials on Dupuytren's were unequivocal; it works. One nice thing about Dupuytren's is that accurate, objective measurement of improvement is dead simple - the finger either straightens out or it doesn't. No placebo effect, no subjective "self-reporting".

Is there anything an individual, or the APDA, could do to move this thing ahead? Maybe not, unless generating "buzz" among urologists encourages Auxilium to spend the money and complete the trials.

I have no connection with or financial interest in Auxilium.
 
 
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Re: General Comments & Questions
« Reply #59 on: August 20, 2005, 10:17:09 AM »

Posted: Tue Aug 16, 2005 2:30 am     
 
Hawkman

 Yes j, but you do have a vested interest in straightening your penis. That destroys all your objectivity and discredits all your opinions. 

While I fully understand the point of your disclaimer, I don't fear people that make a profit. It has driven almost all the progress on almost every product. An idiot or a mistaken genius can give out information that is just as bad as that of a person with a profit motive.

So I say, critical, probing questions, patient interaction, and analysis of the studies will prevail over misinformation. I also think that while I don't fear someone with a profit motive, I do fear forming any interests that detracts from our only interest which is the Peyronies Disease Patient. I apply the same test as I did with inmates. Don't accept any minor gift or favor that would impact the way you would treat that inmate in any way. Once we do, we betray our pledged loyalties.
 
 
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Re: General Comments & Questions
« Reply #60 on: August 20, 2005, 10:17:40 AM »

Posted: Tue Aug 16, 2005 3:51 am     
 
Marti McKown


 Hawkman wrote:

So I say, critical, probing questions, patient interaction, and analysis of the studies will prevail over misinformation. I also think that while I don't fear someone with a profit motive, I do fear forming any interests that detracts from our only interest which is the Peyronies Disease Patient. I apply the same test as I did with inmates. Don't accept any minor gift or favor that would impact the way you would treat that inmate in any way. Once we do, we betray our pledged loyalties.


Hawk, would you clarify what you mean by the above...sorry I'm a little dull tonight.

thx,
Marti
 
 
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Re: General Comments & Questions
« Reply #61 on: August 20, 2005, 10:18:03 AM »

Posted: Tue Aug 16, 2005 6:13 am     
 
Hawkman


 Marti, I was afraid someone might ask because I literally fell asleep every time I tried to proof read it. However, I just slept in the chair for about 2 hours so maybe I can clarify it before I go to bed. don't expect too much though.

If a pharmacy or peddler of penis stretchers wants to join the forum, they are welcome. I have no fear of them. I have little concern that they have a profit motive behind their claim. The proof is in an examination of their claim. We have to be skeptical of every single claim regardless of the source. Misinformation is misinformation. It makes no difference if it is intentional, through ignorance, or for any other reason.

If I as administrator or moderator were to accept payment for advertising however, that is an entirely different situation. Now I may consciously or unconsciously be more interested in preserving income than in serving the forum. The only one that must be free of a profit motive is the forum leadership because we are in a position to do more than just make a false claim. We are in a position to influence the discussion.

I made the inmate comparison because of my background. If I accept anything of value from and inmate, will I be objective in enforcing rules against him? It becomes a slippery slope. That’s why I can support others with a profit motive but Joshua and I could never have profit motives of our own.

It probably is not even worthy of the space I took up with the explanation it so I may read it tomorrow and delete the entire thing. It no doubt revolves around a clarification of a stupid imposter post I read of some other forum recently.

I regret that the 2 hours in the chair didn't help much. 

Rest assured Marti, It is not your mind that isn’t working.

I think I apologize for the space taken up by the last three post due to my rambling.

Good night.
 
 
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Re: General Comments & Questions
« Reply #62 on: August 20, 2005, 10:18:30 AM »

Posted: Tue Aug 16, 2005 8:07 am     
 
Marti McKown

 One good sleepy post deserves another 

I agree a lot with what you said, my original reading was interpreted from an organizational standpoint rather than from your forum adm stand point, however our positions are not dissimilar.

J asked about Auxuillium, and from an NPO like APDA the issue is very similar. We legally cannot endorse any product or entity. Like here our concern and obligation is to the public we serve (Peyronies Disease patients, etc). However we can support their efforts and bring information about it to the membership. In re a company like Auxillium, they are a small pharma that has a niche market..sexual medicine..as to Peyronies Disease basically "they get it". I have no problem stating that they will do everthing they can to bring the product to market, conduct further research and probably look for possible participants in clinical trials. We support that effort and through our org are able to inform the membersip about what they are doing as we become aware of it. But it stops at the information given that they are looking for people, we cannot give out any contact information, and wouldn't any way. Basically they could donate to us but we cannot be influenced by them, Perhaps at some time we may even have some of their results on the site. However other than the information, we cannot endorse the product..we can't sell because that is a conflict of interest..the physician and the patient have to decide as to its use.

Same way that a physician "member" can look and have info about the product, trial results etc..however they are the ones who decide to prescribe.

Perhaps the neatest thing we are doing here, and at APDA, is that there is a central point of reference for a large audience. One of the other reasons why Big Pharma, and researchers look at us more favorably..up to now potential participants in clinical trials have been from very select and small population say 20 t0 30 men.

With an org that has a large membership, the pool is bigger and more varied. The study at that point becomes major and more representitive of the population.
In both cases the welfare of the individual comes first. Freedom of choice based on all available information we can provide.

While there is non - information all over out there, we also have internal rules regarding that to..mainly "saftey first"..perhaps that is the one area where we appear "biased"...with a medical background, and being a granny, I am perhaps over cautious when I hear discussios on "try this"..we can't stop, or muzzle the discussion, but guaranteed you'll hear me over the loud speaker saying, "be careful, boys"...

Thankzzzzzzzz
 
 
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Re: General Comments & Questions
« Reply #63 on: August 20, 2005, 10:18:54 AM »

Posted: Tue Aug 16, 2005 9:33 pm     
 
j


 If Auxilium is a small company, they'll be limited in their ability to market their product to urologists. And if they can't make enough money from their product, it will die.

If AA4500 gets through the trials and turns out to be effective, that's the point at which we (forum participants) might be able to take some meaningful actiion. To the extent we can at least make urologists aware of it so that they look at the test results and draw their own conclusions, we can help Auxilium succeed.

AA4500 isn't a sure thing. There are significant differences between Dupuytren's and Peyronie's, and the way AA4500 was used for Dupuytren's won't quite work for Peyronies Disease - we can get into that discussion later. There may be other complications or side effects. But in my opinion it's the only thing visible on the horizon. Another possibility is that some existing, approved drug - maybe an antifibrotic - is found to be effective against Peyronies Disease. A long shot at best.
 
 
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Re: General Comments & Questions
« Reply #64 on: August 20, 2005, 10:19:47 AM »

Posted: Wed Aug 17, 2005 12:22 am     
 
Marti McKown


 
Quote from: j
If Auxilium is a small company, they'll be limited in their ability to market their product to urologists. And if they can't make enough money from their product, it will die.

Hi J,

When I said Aux. was a small niche pharma I did not mean to imply they were a small company, only small in comparasion to say a Pfizer (who has their finger in every pie). Actually is is because of their "Target Market" those suffering from sexual dysfunction, that makes them a very viable player in the drug world  They have reps all over the country that distribute information, samples, etc to urologists. They also have a very savvy marketing department that knows how to encourage donors (BIG donors).

You made a very important point about our roll in assisting them to get their eventual product to those who have Peyronies Disease...we are a kind of "mini infomercial"...the power we have to inform our personal physicians is huge if we choose to use it, not just about what ever drug is available, but about Peyronies Disease its self. Back to patient advocacy 101.

If through research and development this drug proves effective then they will get the word out....and like you I'm not a rep for Aux, nor to I hold an opinion on the product. But I sure am rooting for them in their efforts, regardless of the outcome.

Leaving no stone unturned is the name of the game!

Take Care
 
 
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Re: General Comments & Questions
« Reply #65 on: August 20, 2005, 10:20:19 AM »

Posted: Wed Aug 17, 2005 9:34 pm     
 
Michael


 Hello there--

Joined up just today; new to all this (recently diagnosed-- I'm one of those "woke up one morning with a broken penis types) and I can see it's going to take some hours to catch up on the threads. I am so glad you are here... I think my biggest shock is never having heard that this condition even existed before it happened to me. If the conservative estimates are that 1% of all men are afflicted.... my simple math puts us at somewhere around 1.5 million in the US alone. If it's really 3%, make that over 4 million. Worldwide it would be what... 300 million? I could be way off, but if so, this is hardly a rare disease.

Anyway, I'll be back as often as I can-- hope to someday actually contribute something worthwhile.
 
 
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Re: General Comments & Questions
« Reply #66 on: August 20, 2005, 10:20:46 AM »

Posted: Wed Aug 17, 2005 10:01 pm     
 
Hawkman

 Michael wrote:
Anyway, I'll be back as often as I can-- hope to someday actually contribute something worthwhile.


Michael, you already did contribute something worthwhile. I hate it that you are numbered among the 3% to 9% affected by Peyronies Disease but like you, I am glad you found us.

There is a "History" topic with some of our profiles so you can have a little better idea of who we are and our Peyronies Disease background. Feel free to begin working on your history there if you like. You can edit it and add to it as you like. Also feel free to post anywhere on this forum and discuss any thing or ask any questions on your mind.

See you on the forum.
 
 
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Hawk

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You guys are the greatest!
« Reply #67 on: August 24, 2005, 01:43:42 PM »

You guys are the greatest!

I am truly moved at the community that the faithful members of this forum have put together.  Reading the posts yesterday is all it would ever take to make Joshua and  myself willing to do whatever it requires to give you a the best we can come up with.  The forum atmosphere here is truly one of a bunch of good friends sitting around, relaxed with the idea of freely discussing any concern or issue, and showing a real interest in each other.  It takes no more than this to make us feel indebted to a decent bunch of people and glad to be a part of the group.
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Hawk - Updated 10/27/18 - Peyronies Society Forums

Joshua

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Re: General Comments & Questions
« Reply #68 on: August 24, 2005, 07:50:29 PM »

I want to tell you guys that Hawk is so dedicated to this forum that it is scary! I can log on almost anytime and he is online. He really cares about this forum and takes his work on it very serious. He does not make a cent off of it and actually has cost him money. I think it is the best Peyronies Disease forum around and it will only get better and bigger. I have not found a forum that is even close simply because of the dedication and respect Hawk has for the forum and its members. His dedication to this project got me excited and involved. I am very busy but when I see what hawk does it makes me make time for a very important cause.

Thanks Hawk for your dedication to this forum!
Your friend,
Joshua
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Hawk

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Thanks for the Kind Words
« Reply #69 on: August 26, 2005, 12:39:04 AM »

Thank you for the kind words that we have seen here and on other forums.  I will share a guarded piece of my personality with you.  Public praise tends to embarrass me and leave me feeling awkward.  For some reason, I actually deal with public criticism better.  Probably because I have a lot more practice with it. :D  I thank Joshua and all of you.  There are somethings, among some people, that  don't have to be expressed.  It is very clear to me that this forum is appreciated.  Hopefully it is just as clear that I appreciate the members.  Most clear is that it is ours.  We each played a part and kept our promises to each other.  

Since I am feeling a bit corny, I will say that it was as if it was meant to be.  A lot of essential factors clicked with the right timing to make this work.  Many of the so-called bumps in the road, actually helped bring us here.  One of the many necessary things that clicked was Joshua.  If there had been two of me, we would have still been one man short.  Not only did he fill that gap, he has become a true friend.
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Hawk - Updated 10/27/18 - Peyronies Society Forums

Hawk

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A Member Moderated Forum
« Reply #70 on: August 26, 2005, 12:47:09 AM »

I could not be more cranked up that the Peyronies Disease community is getting so much benefit from this undertaking.  Yesterday we had 29 Peyronies Disease related posts with nothing but respect and a helpful attitude displayed to the other members of our forum.  Twenty nine on-topic posts in one day is note worthy for a long established forum of any size.  In fact, I have never seen half this number close to being approached by a Peyronies Disease forum.  This success means that there will be posts Joshua and I may never see.  With this group, that represents success and not a problem because this forum is set up to be member moderated and we have the caliber of members that will make it work.  This is exactly how a  forum should operate . I encourage every member to acquaint themselves with our clear guidelines in the “Read Me First” section of the forum.   We designed these guidelines specifically to promote communication on all aspects of Peyronie’s Disease, not to restrict communication.  It is obvious that these guidelines serve us well.  In the unlikely event an element creeps in that could interfere with communication.  I have faith that the members will self-correct the problem and keep their forum in order as they would their home.  We have all been there and seen the consequences of straying far in either direction from these guidelines.  In the unlikely event you need assistance, just ask for it by clicking on the “report to moderator”link at the bottom right of every post.  It takes no more than a few seconds. 

Carry On
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nick

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Re: General Comments & Questions
« Reply #71 on: August 26, 2005, 11:43:31 AM »

Hey Hawk, on was on that other site and saw the post bellow. I must be blind because I dont see this thread.

Date:   8/23/2005 8:36:33 PM
Name:   Hawkmaster 
www.peyroniesforum.net has the report and photos showing a before and after cured penis
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Hawk

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Re: General Comments & Questions
« Reply #72 on: August 26, 2005, 12:45:25 PM »

Well Nick,  I'm not sure how much of a sense of humor you have but I sense you don't offend easily.  I will only say, if you spend your time looking for things mentioned on that site, it will make the search for big foot look like a sound rational use of you time. :D
There are about 400 imposter posts made with my name alone on that site.

Also, we have many new members and it may bare repeating that :I have not posted on that site as Hawk or Hawkman for over a month and will only post there as  "admin PeyroniesForum.net"
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Re: General Comments & Questions
« Reply #73 on: August 26, 2005, 01:28:20 PM »

And that would be why I could not find anything. It seemed like a sad childish attempt to discredit or something. So are you saying that if we find Bigfoot then we'll find the cure for Peyronies Disease :-) I'll start looking.     
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Hawk

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Re: General Comments & Questions
« Reply #74 on: August 26, 2005, 02:11:18 PM »

I don't know about the cure for Peyronies Disease, but I think he has those photos. ;)
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Peyronies Disease Trials?
« Reply #75 on: August 27, 2005, 11:24:52 AM »

Anyone know of any open trials of Peyronies Disease treatments?  I was hoping to find a trial on iontophoresis as a means of adminstering Verapamil, but the one Dr I know of who was doing these trials doesn't have any openings.  Does anyone know of any open trials?
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Re: General Comments & Questions
« Reply #76 on: August 30, 2005, 04:12:06 PM »

As some of you may know, our very good and dear friend Old Man and his wife live in Mobile, AL, an area hit hard by Katrina this past Monday. I would ask all to keep his welfare and that of his family in our thoughts and prayers. I would also add  the same thought for the people living in the area of extreme devastation just south of Mobile and on to New Orleans and beyond.

Larry H
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Re: General Comments & Questions
« Reply #77 on: August 31, 2005, 11:44:51 AM »

With out doubt, best wishes to them all. Hope all is well Old Man.
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Re: General Comments & Questions
« Reply #78 on: August 31, 2005, 06:32:40 PM »

I have an idea for another topic or thread or however you guys want to do it. What about the idea of different members posting pics . One from looking down and one from the side. It may be interesting for member to have a comparison. Or new guys could see what to expect. I myself would be willing to. I think most of us are beyond shame and would be willing to for the good of us all.
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Hawk

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Re: General Comments & Questions
« Reply #79 on: August 31, 2005, 08:26:48 PM »

As some of you may know, our very good and dear friend Old Man and his wife live in Mobile, AL, an area hit hard by Katrina this past Monday. I would ask all to keep his welfare and that of his family in our thoughts and prayers. I would also add  the same thought for the people living in the area of extreme devastation just south of Mobile and on to New Orleans and beyond.

Larry H
Larry, that is a very appropriate request.  I sent him an email expressing similar sentiments and urging him to error on the side of caution.  I told him we would all anxiously await his appearance on the forum signalling all is well.  I am left wondering if he got the email or if he was so busy preparing that it is still waiting on him.
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marti

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Re: General Comments & Questions
« Reply #80 on: August 31, 2005, 10:50:18 PM »

In addition to Old Man, there is another that needs our thoughts, Dr. Wayne Hellstrom, one of our (APDA) Medical Advisors is in New Orleans and is on staff at Tulane Univ Hosp.  He just contributed to the Q&A on our site last month.  The situation at the hospital is very critical and we have no way of knowing what is happening and probably won't know for some time.  So heartfelt thoughts for all those affected by this disaster would be greatly appreciated.

Thanks Gentlemen,
Marti
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Old Man

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Re: General Comments & Questions
« Reply #81 on: September 03, 2005, 11:07:37 PM »

Update for all concerned:

The Old Man and his wife Carol came through Hurricane Katrina with flying colors! We suffered only minor landscape damage. Tree limbs, loads of leaves from everywhere, but fortunately no structural damage. Maybe some loose shingles and minor roof damage, but we were very lucky in all respects. Compared to other parts of Southwest Alabama, Coastal Mississippi and last of all, but not least New Orleans and other inland cities of LA and MS, we fared very well. It is very hard to put in words what it is like riding out 90 to 100 plus mile per hour winds, tornadoes, heavy rain and the rising tide along with the storm surge with the tide. However, I live several feet above sea level on a knoll which affords much protection from rising waters and flooding conditions.

Many thanks to all for your prayers and concern during this very, very devastating storm. I believe that it will go done in history as one of the worst to hit the Gulf Coast area in all times. Mainly because of the loss of life, property and infrastructure all over the Gulf Coast area.

Again, thanks for all of your concern.

Sincerely, Old Man
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Shoulder Nodule
« Reply #82 on: September 05, 2005, 02:45:26 AM »

Within the last week I have developed a small (slightly less than pea sized) nodule underneath the skin of my right shoulder. It is slightly sore upon manipulation and somewhat mobile. Also sort of muscle-like in texture and is visible by the naked eye.

In the past two months I have been carrying an excessively heavy briefcase to work (I dont need to anymore..) and I wonder if this could be related?

My reason for posting this here is that the nodules are often the results of fibroblast buildup... not unlike Peyronies Disease and DP.

Has anyone else had any of these nodules?


TS.

P.S. For those of you who dont know... I started experiencing some penile pain about 6 months ago after prolonged sex. No curve. Dr. Mulhall 2 months ago said he did not detect Peyronies Disease...but did notice some "thickening of the top and bottom of the penis". I have noticed tendon like things on the lower top of the shaft that I dont remember being there before onset... I also have a small painful vein like thing that runs down and across the shaft...which is my only source of pain now...
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Joshua

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Re: General Comments & Questions
« Reply #83 on: September 05, 2005, 09:31:24 AM »

It's called "frozen shoulder" it is in the same family as Peyronies Disease. My understanding is that frozen shoulder is more responsive to therapy than the others. Try to google :frozen shoulder for more info.
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ThisSux

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Re: General Comments & Questions
« Reply #84 on: September 05, 2005, 12:42:46 PM »

Thanks for the reply.

I have read up on frozen shoulder and it seems to imply a limited range of motion...which I dont have a problem with. Also a great amount of pain, which again I dont have.

My only symptom is the nodule... although perhaps this is the early stages of it?
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Joshua

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Re: General Comments & Questions
« Reply #85 on: September 06, 2005, 01:32:13 PM »

Yes, it may be an early stage. Good Luck and please keep us posted. I hope it is just a muscle knot and not the start of frozen shoulder.
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Hawk

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Re: Shoulder Nodule
« Reply #86 on: September 06, 2005, 02:57:21 PM »

Within the last week I have developed a small (slightly less than pea sized) nodule underneath the skin of my right shoulder. It is slightly sore upon manipulation and somewhat mobile. Also sort of muscle-like in texture and is visible by the naked eye.

TS, of course you are going to see a doctor.  Hopefully that will give you an answer.  I have watched two subcutaneous fatty cysts cut from the back and shoulder of two family members.  They were much as you describe the lump you have.  Obviously there are probably at least 50 other thing it could be.

Let us know!
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ThisSux

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Re: General Comments & Questions
« Reply #87 on: September 06, 2005, 04:36:03 PM »

Yes I am definitely going to a Dr. Unfortunately there is a hiccup in my insurance coverage (job change) and I can't go for about a week or so.

I am monitoring it in the meantime.
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crazymoose5000

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Re: General Comments & Questions
« Reply #88 on: September 07, 2005, 09:42:03 PM »

my penis has been curved to the left side for as long as I can remember, but never had painful erections.  Is this still considered as peyronie's disease? 

Also, what is considered as excessive curvature?  Would having a penis like the shape of a banana considered excessive?  Or would excessive be considered as those penises that bend close to a 90 degree angle?

 
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bob

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Re: General Comments & Questions
« Reply #89 on: September 08, 2005, 04:18:42 PM »

My two cents:

I was born with a 'banana' - a downward shaped one, and no, it was never considered a big deal. Most of these sites get a fair number of questions of this type. There are curvatures that are congenital and there are ones that suddenly show up, owing to Peyronies Disease and (I think) a couple of other disorders.

Lucky me, I now have both.

I never took a protractor to my congenital curvature so I couldn't really say how much exactly it drooped. I never thought twice about it until I was 13 and my cousin informed me that it was a bit abnormal. Nobody else ever said a word about it and a urologist once told me not to worry about it. I was quite content with it; so was my wife, not to mention a couple of girls from my long years as a single guy.

Now a lateral bend is an entirely different matter. Mind showed up about a year ago along with all the other Peyronies Disease symptoms (pain, a plaque, a thinning or 'waisting' right at the bend point, have a fair amount of difficulty with penetration during intercourse, and the all-time favorite, a one-inch penile shortening).

If your curve has been around for as long as you can remember, and there's no other symptoms associated with it, chances are it's not Peyronies Disease and it's not a problem.
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Re: General Comments & Questions
« Reply #90 on: September 09, 2005, 03:51:04 AM »

Crazymoose5000,

Bob seems to have hit the nail on the head. With that having been said please allow me to elaborate on a few other issues.

Congenital means that you were born with a penile curvature. From the views of doctors and those with personal knowledge, excessive curvature would be when vaginal penetration is no longer possible, or is possible but with pain.

I had a 50 plus curve to the left in the beginning years of Peyronies Disease but penetration was not impossible and not painful to my wife or me. However, I now have a 60-degree curve looking right up at me. This is "excessive" for my wife due to pain. Something that is rarely mentioned is the type of curve that we have. For example, mine is sudden just past the halfway mark of my shaft. Others are 60 degree but extend the entire length of the shaft. Big difference I'm sure you can see. I hope I was of help to you.

Barry   

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crazymoose5000

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Re: General Comments & Questions
« Reply #91 on: September 09, 2005, 11:21:44 AM »

okay, so now I'm guessing that I don't have peyronie's disease.  But I've had this curvature atleast since I was a teenager... and now I'm 27.... so is this going away and is it worth getting fixed?  A lot of what I read on Peyronie websites say that treatment should happen if it's a problem in intercourse.  Part of my worries stems from the fact that being a virgin and don't believe in pre-marital sex... so having to wait until marriage to find out if vaginal penetration is no longer possible, or is possible but with pain to determine if my curvature is excessive is somewhat troublesome for me.  I mean, I can "almost" bend the penis straight without any major discomfort... and isn't a woman's vagina pretty flexible?  So would my curvature still be a problem?

Also, what is the correct method in measuring your degree of curvature?

And just wondering... does masturbation make the curve worse?  Or is this just a myth?


thanks a bunch to those that have replied.  I appreciated the response.
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Re: General Comments & Questions
« Reply #92 on: September 09, 2005, 02:32:25 PM »

I too had something of a curvature just naturally, for as long as I could remember.  It was probably around 10-15 degrees, subjectively.  From your description, you sound pretty similar to me, before I developed Peyronie's.  Atleast I think I hadn't yet developed it at that point- but it is a little bit blurry.  That's probably due to my sketchy understanding of the development of Peyronie's itself, though-

Your concern about the pragmatics of intercourse mirrors my own concerns.  I'm not a virgin, but my condition has become acute in a period of time during which I've been abstinent- so effectively, we're in a similar boat.  I think I probably can't have intercourse...that's been my conclusion after reading some of the reports of the people that seem to be in a similar boat.  The biggest factor it would seem is the type of curve that you're talking about.  For me, mine is approx. half way down the shaft, and then bends dramatically to the left at almost 90 degrees.  If someone just had a gradual bend that started at the base of the shaft- I don't imagine it would be much of a problem.

You can subjectively approximate the degree of curvature pretty easily.  I'm guessing that you're probably alright, as far as the possibility of intercourse- if you just have a congenital curve, I don't think those get too out of control, as far as degree of bend.  Again, someone can correct me if I'm mistaken.  If you're able to straighten it without significant discomfort- I'm pretty sure you'd be fine.

I certainly sympathize with your insecurity about not knowing whether sex would be possible.  It is pretty much the theme of my existence right now.  It is having a major major impact on the quality of my life and my overall psychological health. 

In terms of the question about masturbation worsening it- I believe that's a myth. 
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Re: General Comments & Questions
« Reply #93 on: September 09, 2005, 02:59:36 PM »

Crazymoose5000

From what I read in your posts I would agree with Bob and Barry. I don't think you have a problem except for your own concern, and that's understandable. When you say you can strighten it, that to me confirms that intercourse will be no problem. And yes, the vigina can accommodate a fair amount of bend. In fact most men have some small degree of bend, very few have a penis that, when erect, is perfectly straight.

If you still have concern I suggest that you take a digital photo when erect, and let a good urologist take a look. My belief he will tell you the same thing you are hearing here. One word of caution. I would not let him/her induce an erection by injection. A healthy penis does not need that trauma.

I hope this is of some help.

My Best,

Larry H
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crazymoose5000

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Re: General Comments & Questions
« Reply #94 on: September 11, 2005, 02:38:46 PM »

thanks everyone.... you've put some of my worries to rest.  Although a straight penis is still preferable, I don't think I would risk a decrease of erection strength and shorting of penis for an already healthy penis.

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Re: General Comments (that won't fit under any of our other topics)
« Reply #95 on: October 03, 2005, 06:39:41 PM »

Hawk:
Did  I read your update correctly on members history? You no longer have any curve and your plaque nodules have reduced to tiny bb size? Also, you are using heat. I did not know you were using heat. Please update us on your treatment.

Congrats my friend on your improvement. I am very happy for you.
Joshua
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Hawk

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Re: Joshua - Hawk"s Improvement
« Reply #96 on: October 05, 2005, 11:00:57 AM »

First, my condition:  The degrees thing somewhat escapes me when we discus a curve spread over the length of the shaft but my estimate was about 25 degrees.  It was enough that it was a distraction trying to make normal intercourse work.  It was also enough to that when laying on my back that none of my penis laid against my body.  I am now so close to straight that there could be no more than a SLIGHTLY perceptible downward bow, if even that.  Before Peyronie’s I was 10 degrees (guessing again) upward curve.  I hate to complicate this but in addition, my worst downward bow was near the end of 8 months of 2 penile injections per week .  Also note that since I have Erectile Dysfunction, My curve assessment is when erect from a VED or during strong nocturnal erection (trazodone) when I am only semi-conscious.
What is clear is that there is a noticeable reduction in curve and an undisputable reduction in nodule size by 2/3rds.  I still have an indentation where the nodules are and loss of length and girth.
Why the change?  Like always, who knows. During the period just prior to and during the improvement I was haphazard with many "remedies".  Primarily I took Acetyl L-Carnitine (ACL) at 2500mg daily for over 60 days.  I used the VED erratically,  sometimes twice a day sometimes once a week.  My only heat application has been to use my handheld waterpic shower unit and direct increasing hot water on my penis.  I would make hotter every several seconds as I got used to it.  When it was to the point of slight discomfort I would stretch my flaccid penis as I directed the hot water on it.  (It helps to have 2 or 3 people helping you with this  :D  )  I am sure I only did this for 7 or 8 minutes after every shower but I used HOT water and my penis was warm to the touch and a bit pink for several minutes after I stopped.  Sometimes I would use the VED as soon as I got out of the shower.
As you can see I am a VERY poor case study.  My heat was hotter and it was every day but only for 1/4 of the time used in the study.  (but it was at the end of a long warm shower.)  It is enough that I intend to continue by increasing the heat duration and by stepping up the VED to 2 times per day.  One will be right after the heat treatment.
Sorry to say, I have no strong recommendations from this, only a report that can be filed under "for what its worth".  Is it spontaneous???
I do suspect that my Peyronies Disease is still active because at times I have some sensitivity to probing or squeezing.
PS: Strong nocturnal erections and VERY weak daytime erectins even with Viagra are beginning to irritate the hell out of me.  I have enough nerve function to get good erections or I would not get them at night.  I feel no perceptible apprehension or stress from sex.  It is a puzzle.
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Re: General Comments (that won't fit under any of our other topics)
« Reply #97 on: October 05, 2005, 04:36:23 PM »

There is fibrosis, and then there is inflammation.  Many MDs talk about the 'inflammatory phase' of Peyronies Disease, and I think I experienced some of that.  Verapamil injections can cause inflammation - one reason my uro recommended against  them (his exact words were "they just cause more nflammation"). Inflammation can go away on its own - I don't think fibrosis does. 
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my experience
« Reply #98 on: October 17, 2005, 04:22:12 AM »

Hi guys. Im new here and i stumbled on this forum on one sleepless night doing an internet search looking for a cure.  Although Im a bit let down by the fact I havent found anything conclusive, I feel there is helpful information and it's nice to know there are others experiencing something like me, and im not completely alone.

A little about me, Im in my mid 30's.  I have had this disease, along with pain for about 15 years.  When I was young I had the ability to have many orgasms on the same erection without losing it.  Although in some ways this was a blessing, the reality is that the amount of force necessary to acheive a 3rd orgasm is high enough to cause some serious trauma if something goes wrong.  I know from watching pornography that as guys we miss often. Somehow when i missed I ended up with this disease. I recall the pain at first and then going right back at it.  The next few days I remember not feeling the same, and spending one night on the floor of my room because of the incredible pain i was experiencing.

I have used smokeless tobacco for years and from some of the reading i've done here i feel that it may have contributed to my succeptability to this disease. I have pain, and have had pain for a long time. Contrary to what i've read.  I can remember being in so much pain on days that it affects the way I move and is at times so unbearable that I cant even think straight or complete sentences or thoughts. In fact, it's amazing to me that I have made it this far.

It's been a roller coaster ride for me as I have gotten to points where the pain is really low and the function is really good. What ultimately happens is I will get into a relationship and low and behold, I'll get hurt again. Usually the first or second time I have intercourse with a new partner. From there I lose my charisma and become depressed. Usually this spells the end of the relationship, although I have maintained some long relationships.  I have lost jobs because of not wanting to interact with people or even leave the house due to the suffering from this condition. Usually there's hope though and I have a few good days to encourage me.  Some full morning wood, or minimal pain. What sucks is as I've gotten older it's taken longer and longer to rebound from these traumas. Odd things like soda bottles falling off the counter can hit me just right and reaggravate everything.

I think I've done enough venting now to give back to you guys and tell you what has worked for me as I have more supplement bottles in my home than an GNC it seems. First off St. Johns wort allowed me to be in a good enough mood to keep a job for 4 years. I fear it may not be helping the actual condition and my in fact be a hindrance, but I dont know if I would have gotten this far without it.  I tried lecithin and it gave me rock hard erections. I have read the science behind it and like how the phospho-lipids soften the plaque. This could be very beneficial. Unfortunately for whatever reason I did not react to this very well. I dont know if it's a contraindication w/ the st johns wort as I have experienced similar feelings with tienchi ginseng and yohimbe. Both of which were amazingly effective for creating erections. The tienchi ginseng seemed to be incredibly beneficial. Unfortunately, I cant take it because too much activity down there causes a lot more  pain and makes lifeharder for me. I mention this because I believe it may help others.  Back to the phospholipid theory.  .. IM thinking these things may be effective if I could get off the st johns wort. I liked what I saw while using them, just couldnt deal with the mini convulsions I was experiencing. Also thought that it may have to do with all the stretching of the scar tissue really inflamming the nerves.  Hard to say, but there's definitely some results from these treatments. Not sure if the good outweighs the bad. For me, anyway

i have also tried arginine. seems to lower the blood pressure too much in high doses and cause cold sores. It has some benifit. Gingko biloba. I really noticed a difference with this. One caveat though. i was noticing such a difference that I took too much and it thinned my blood to the point where it seeped through the part of my penis that inflates. This created extreme swelling and Im almost sure did extra damage. Was a big setback, but more due to irresponsibility and overzealousness than gingko being an evil thing. Needless to say, Im very cautious with this product now.

I've tried vitamin E. Didnt notice much but seemd to get a bad feeling, like my heart was working extra hard when I took a lot so I dont take it as a staple.

Im not one for going to doctors but I did once and he gave me potaba after telling me i had a normal curve. (it's not so much the curve as it is a bottleneck and pain. the bottleneck is only starting to become visible when it's fully erect now) This may have worked or had a placebo effect. Wasnt enough to keep me taking it though.

Maybe the best thing I did, which never made sense to me before was start taking advil. I take four a day now and it makes the pain much more manageable. Was a girlfriend whom I injured myself with that told me to take this. Seems to help a lot with just getting through the day.

These are all things i've done in the past. I've probably had about 25 "setbacks" in my life.  I get to the point where I can be myself and have a healthy relationship, then bang, it gets unhealthy real quick.


This year, for example, I started taking eurycoma longifolia. This stuff raises your testostorone levels. Dont know if it helps or not because it causes insomnia and other things that cant be real good for the body since rest is essential for healing. On a sleepless night I explored the phospho-lipid theory further and started taking fish oil . Dont know if it helped but I feel that borage oil and evening primrose helped a lot. These also seemed to not go well w/ the st johns wort, but the reactions werent as harsh and I took the borage at night.  What I found was that my penis was getting erections comparable to my younger days when my nickname from my friends was the hammer due to it's significance.  Borage is a lipid, but also stimulates production of prostaglandin e1 which is very useful in the penis.

This got me to the point where I had gotten intimate with a girl who was previously a virgin in September. Well wouldnt you know it , the second time we made love I got hurt again. I turned into a total loser. (clingy, needy, not funny or upbeat) and within a week she "needed some time/space". What sucked for me is that im now in face to face sales and the same attributes that attract women are also needed to make a living. Basically, you at least have to be in a good mood.  I was bummed that I lost another relationship, but more bummed that it meant months more of suffering and not being able to be myself.

Last night I had a female friend over that I had known from the past. We were alway very attracted to one another and we ended up making love.  It was great but I felt like I ripped something and have pain similar to a cut inside my penis today. It seems to never stop.  In fact the pain is so bad that it's every other thought as I type this.

I have tried a lot of different things and really feel there is something to the phospholipid theory.  I skipped over my trials with dmso and topical lecithin. Also Shea butter fits in here.  I used this as a place to vent some as this is the first moment i have sat here and let all this come out of me. Hopefully someone will find something I wrote of value because even though I havent been able to beat this thing, I have gotten to a point where i have improved, only to encounter another devastating setback, but at least most of the setbacks came while doing what we all want to do.

Im a bit spent now but I have also tried serrapeptase and nattokinase. the Serrapeptase seems to help with the pain and both seem to create a gingko-like effect in terms of thinning the blood.  I have been my own human chemistry experiment for the past 10 years. It may not be the wisest thing but considering the suffering I've endured it was worth trying something, and based on some of night where i couldnt sleep and was in total agony I'd rather go down swinging than do nothing

I hope someone looks more into some of the things I've mentioned. The one route I can sayfor certain had no detriment to my penis was the borage oil. Lecithin and all of the EFA's may hold the key. Once I get to a point where less than half of my day consists of suffereing Im going to try some regimen including lecithin, tienchi ginseng, borage oil, evening primrose(made me sick, but may have merit), fish oil, healthy eating, and hopefully ridding myself of tobacco and st johns wort.

I dont know if we have any doctors here or if this is too long for most to read. I will say that I have suffered for a long time with this and although i've acheived some material things, i feel my youth and enjoyment of life has been incredibly hampered by this and every day I dream, hope and pray that there is a way to rid myself of this horrible disease once and for all.


Hope this isnt too long or that i didnt say too much, and i hope that this helps someone and you can share your experiences with some of the things I've mentioned. I also really needed to get some of that out. Thanks for listening and good luck to all.


Pete
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bob

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Re: my experience (Whyme)
« Reply #99 on: October 18, 2005, 09:36:28 AM »

Pete:
Don't ever worry about saying too much or composing a post that's too long. On this forum you needent ever worry about being censored.

That said, it kind of baffles me how anybody could endure constant pain for as long as you... and be presented with rampant sexual opportunities no less (my single days were never that good).... and not be under the constant care and supervision of a doctor. Find one. I know the conventional wisdom is that there isn't a whole lot of hope to be offered by the medical community - particularly, urologists. But, they might at least be able to vanquish the pain. For all you know, you have some kind of cancer. (It does happen.)

I'm very bummed that the APDA took its site offline several months ago and promised something new and improved... and it hasn't happened. Nonetheless, the site still does have a useful directory of doctors in most regions of the US. The address is www.peyroniesassoc.org.

Bob

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