Peyronies Society Forums

What issues have you faced?  What impact has Peyronies Disease had in your life.  What has helped you cope?  

dcaptain   Posted: Sun Jun 26, 2005    3:05 am   

Hey, it's dcaptain. I don't know if what I have is Peyronies Disease, but I definitely have something NOT GOOD going on. I have to admit, it's sucked. Basically, I don't think I remember what it was like before all of this. The only thing that has really kept me going though, is: 1) realizing that it really could be a lot worse. By that, I mean, for example, I was walking home a few weeks ago, and was all depressed over everything that's been going on. I was feeling really sorry for myself, really willing to let myself feel bad. Then literally 10 seconds later, walking down across the block was this other guy, probably in his 30s. I noticed he was talking to himself and gesturing, and then I realized - he has tourette syndrome. He could barely control himself. I have to admit that my heart went out to the guy, because I know how bad it is to feel like I have a problem, but here's this guy, who can probably not even talk to people without showing them his disability. I can't imagine the strength it would need to be able to do that day in and day out. After that, I didn't feel as bad.

2) A sense of humor. Let's face it, life will knock you down with things you don't even see coming. This is part of it. I have no idea how I'm going to deal with it in the future, but I guess I just have to laugh at it for now. It seems to help.

Nothing but the best to everyone out there dealing with Peyronies Disease or anything like it. I wish you well, a million times over.

Joshua, Global Administrator       Posted: Sun Jun 26, 2005       11:15 am   

When my Peyronies Disease was at its worst, I was really down. Thinking about Peyronies Disease consumed me. The worse part of the disease for me (I hate calling it that) is not knowing where it ends or just how bad is it going to get. Is my penis going to corkscrew? Am I going to loose it to ed? Will it flare up? Will it get better?

I was scared and down until I started seeing some gradual improvement. That motivated me to keep working to fight this disease. I am determined not to let it get me. I feel it is so important to keep up your sex life (gently and safely) and live healthy.

dcaptain         Posted: Sun Jul 24, 2005        8:57 pm   

Hey guys, I don't know if anyone else is single as I am, but I have to admit finding out I probably have Peyronies Disease (as still no one told me I have, but I'm assuming I do) hasn't been easy when it comes to dating. I'd be interested in hearing about how single guys have dealt with Peyronies Disease and the whole issue of dating. I honestly can't imagine talking to a girl about this; but it's sorta gotten to the point where I can't imagine dating either. I have to admit I don't have it in me right now. Any thoughts/comments/advice? Thanks fellas in advance.

Old Man     Posted: Sun Jul 24, 2005       11:35 pm   

dcaptain:
I know the feeling that you must be having at this point because of the sexual thing. Having had Peyronies Disease since an early age, have been through the stages of having sex, not having sex, developing a bad curve and finally the inability to even think about having sex.

It became an obsession and finally in desperation when one of my girl friends asked what was wrong, I decided to confide my problem with her. She laughed for a while and said "let's try to do something about that!" After several nights of trying we were able to have success. Having gotten over that hurdle, I have not had an erection problem until after prostate cancer surgery.

Sometimes, one must find an understanding and willing partner to work with and through a problem such as this. You might be surprised what will happen if you do confide in a trusted partner and together work through the situation.

This is offered only as a suggestion for what it is worth. Glad to be of any help if I can.

Old Man

dcaptain      Posted: Mon Jul 25, 2005      2:23 am   

Old Man,

I have to say an enormous 'thank you' to you! That response pretty much made my night. It's good to know that I'm not the only one who has had to go through this whole thing while single. Not that it's any easier on the guys who are married or dating someone, because I know it's not. I think your advice about just being upfront about it is probably best. The truth is always the best medicine, as they say. I guess it's sometimes less easy to have the courage to actually live that way - talking a good game is always easier than doing. Admitting something is wrong with your most personal body part is 10 times harder. Kudos to you for doing so.

Thanks again,

dcaptain

ps: If anyone else is going through this while single, I'd love to hear from you.

Old Man       Posted: Mon Jul 25, 2005        3:58 pm   

dcaptain:

No problem, glad to be able to help out. That is what this forum is all about, helping each other when all possible.

Thanks for the kudos, but this is just what I do. When someone needs help and I am able to furnish the correct info, I do. If I don't know the answer, will do my best to find out and pass it along whenever possible.

Have devoted a good portion of my adult life to helping others with men's health problems. As a counselor for the American Cancer Society in Alabama, I get to meet a lot of guys and gals with sexual problems, prostate cancer and in general just plain men's problems. We have four or five of us that do this on a volunteer basis, receive no pay, just the pleasure of knowing that we were able to be of some help to someone in need. We all work under the auspices of a local urology group who sponsors each of us. They keep us to date on the latest information in urology, etc.

Just one request, pass any information you receive about Peyronies Disease and ED problems on to anyone else who needs it. That is the way that good information is spread to those in need.

Old Man

this condition has me so messed up that I am pretty much rarely willing to have sex. I want to all the time. Before this happened it was like 3 times a week to nothing. It been 3 months with none. it's just to embarrasing. My fiance says it's o.k. and she doesn't feel the diference, I say BULL. I can't have oral because of the potential of more damage being done. Our relationship hasn't suffered. I suppose it much like being with a post menopausel woman. We just kind of moved on and talk alot more.

Nick, I have a feeling that your lady is telling the truth when she say she can't feel the difference.   I know I couldn't..we are built to expand, contract and accommodate..(try having a kid snicker..now thats accommodation).

Granted sometimes in certain positions it was uncomfortable, due to the degree of curvature, but he was more frustrated than I was...gotta remember the female anatomy that most don't talk about..the actual "feeling" extends only about 2" inside..the rest is pressure and accommodation...so we changed positions ..worked for me!

The other thing is your worry about oral sex...sorry not to be more delicate, but injury occurs from trauma..soo unless her nick name is "Jaws" you should be pretty safe...I usually don't give advice, but all I can say is if it works, enjoy each other.  The more you worry about what isn't there, the more you miss what is...

Funny one for you gentlemen..I was at my hairdressers the other day and she knows about my involvement with APDA so we were yakking about Peyronies Disease (the rumors about ladies at beauty parlors are true)..she said "ya know ultil you told me what it was I just figured that some guys were naturally shaped that way, didn't make any difference to me!".... ;D

Thank you Marti for the kind words. What you said all makes sense. She says the same kind of thing, to some degree. What I tell her is imagine if you had one breast a B cup and the other a D cup and every time you get aroused the vagina aches and throbs in pain. What you want to have sex then / What she says at that point is "oh". :-)  I know what you mean with what your friend said. I have had women (friends) in the past ask me if it is normal for men to be bent a bit. I myself have seen a few adult movies and notice many guys with curves and bends. I suppose for me it depends on how much the curve is. 80 degrees sucks ass. Maybe 10 degrees wouldn't be so bad. My whole life I have never been totally straight. My thought was allways , that I " dressed left" so it made sense to curve a bit to the left. 

I think those were very wise and hopefully encouraging words from Marti. I have read many posts on here and other Peyronies Disease forums where single men that have developed Peyronies Disease and either have not had the opportunity to have sex since the curve developed or have been scared to try it out.

Mind you, I am not knocking a guy that is fearful the curve would be a problem. However, I encourage you guys to try it when and if the opportunity presents itself. Don't let this disease beat you before you even really know what the situation is.  It is better than the not knowing. Also, like "J" said on one post somewhere on here, There are a lot of issues that need to be accounted for like where the curve is, which direction the curve goes in, and of course the degree.  My curve is slight now but even at its worse it was from the base and didn't cause intercourse to ever become even a slight problem. I think curves starting from the base would be much less a problem. Also, just as Marti pointed out the vagina can obviously adjust; the penis will give a little as well during intercourse.

I hope this is not too vulgar but I want to share this. My wife's G spot is near the back top and it used to almost be impossible for me to "hit" that spot. I could but it required unique positions. The slight upward curve allows me to easily hit that spot now. I am aware many women actually prefer an upward curve.

I'm just curious, does anyone else have any contingency plans to escape from society...etc?

I often times think that if the worse case scenario comes to exist, I will just join some Buddhist monastery Dharamsala and try to not forget about being with a woman...

I think this is the most depressing part for me. I am a hopeless romantic and i can't imagine living without female companionship.

This disease scares the hell out of me.

Quote from: ThisSux on September 05, 2005, 03:47:03 PM
I'm just curious, does anyone else have any contingency plans to escape from society...etc?

I often times think that if the worse case scenario comes to exist, I will just join some Buddhist monastery Dharamsala and try to not forget about being with a woman...

I think this is the most depressing part for me. I am a hopeless romantic and i can't imagine living without female companionship.

This disease scares the hell out of me.

This is the first time I've really had to directly face the problem, since my Peyronies Disease went severe.  I find myself doing something similar to what you're describing, in trying to find ways to change ones life-view to be able to be happy with the disease.  It is very, very difficult, and psychologically destructive. 

Instead of doing stuff extreme, like your monestary idea, I find that I tell myself I've got to prioritize my school studies.  Basically trying to prioritize everything but relationships with potential partners.  Like putting an emphasis on friendships, that sort of thing, socially.  It's very difficult, because it is so unnatural to tune-out of that aspect of your being.  I don't know how successful I'm going to be with it.

What I find particularly difficult, is the mental 'reverse-engineering' way that something as personal as a problem with ones sexual organ finds itself into your basic social outlook.  What I mean by that, is that sex is a very intimate and highly personal disclosure of oneself.  It is at that level that the insecurity is born.  But what happens is that highly personal level of social contact starts to creep its way into your most casual social perceptions and responses.  If I see a hot girl at the supermarket, and there's some casual conversation, or even just eye contact- immediately the insecurity about my unit colors my perception of the purpose of that flirtation. 

Even the most surface of social interactions becomes influenced by the awareness that the ultimate 'point' of that surface interaction is empty...from a sexual standpoint.  It causes one to be psychologically impotent, if not physically. 

For me, if it was just the 'unpleasantness' of having to acknowledge or deal with the fact that I had a 30 degree curve- I honestly don't think it would be THAT big a deal, although I'm not trying to trivialize anyone's emotions or experience.   It's the prospect of having to unveil a 90 degree bend, which I'm not even sure allows sex to be physically possible or comfortable for the woman, that causes me to have to ponder surgery, or a very unnatural period of sustained abstinence.  I've already been close to 2 years without sex, at age 25, so that in itself is very unhealthy, as far as I'm concerned.   

I find myself concentrating on everything BUT my condition these days, because I am having a hard time accepting that this just may be "all she wrote!"  I want to seek out the best medical help I can, but I'm also afraid to do so, because the grim reality of never having that particular connection with my wife (not to mention any other woman, EVER, if for some reason my marriage doesn't make it through this) is still too much to handle, and I'm afraid that's what I'll find out.  There are dozens of men on the forum who have researched exhaustively, and tried everything, with little to no success... and I'm having trouble understanding how so many doctors know so little about Peyronies Disease.  I'm still feeling lost, I guess, and I need a good kick in the pants to get going and become proactive.

 Opinions differ but here's mine: there are currently 3 lines of attack that have a chance of panning out.

1. AA4500, an injectable enzyme that breaks down the bad collagen, hopefully restoring some elasticity.

2. Mechanical therapies like the VED or (possibly) traction. But, urologists won't go near this  - too much potential liablity.

3. Peyronies Disease is a fibrotic disorder. There are many others - some are life-threatening - and research on those might result in a systemic treatment that works for Peyronies Disease too.

Of course some new treatment could come out of the blue at any time. It wouldn't come from the litigation-crazed U.S.  More likely from some MD in Europe who's willing to think on his own and experiment a bit in hopes of helping his patients. 

Michael,

Your post is directed at the area of Peyronie's that is hardest to attack, and to conuncil. Since each of us has our own set of circumstances that effects the mental side of the disease, these circumstances must be taken into consideration to attack the psychological impact on each man and his wife or partner.

Some men are in denial and their wives seek help. Others want the support of their wives, but the wives want to ignore the problem. A man that has the desire to fight his Peyronies Disease, and has the support of his wife is certainly ahead of the game. Of course there are so many other factors including age, marital status, financial condition, and on and on.

Peyronie's can be devistating, that's for sure, but you must remember that many men have improved. Some with various types of treatments, and others with spontaneous reversal. Also, lurking in the background is the last resort of surgery, it has helped many who fit the profile.

If I am correct you mentioned in an earlier post that you were near Dr. Lue. If I were in your position I wouldn't walk, I would run to Tom Lue. Nothing helps the mental side of Peyronies Disease like actively fighting the disease.

You said that you don't understand why so many urologists have such little understanding of of Peyronie's. I think the answer is that they simply don't know, or have given little thought to the devastating psychological impact this disease has on men, their wives, and their families. One of the goals that many of us have is to bring awareness to the urological community as a whole. There are simply too many who are concerned with such things as prostate cancer and the like, and view Peyronies Disease as an irritant. They simply don't understand for whatever reason, the mental side of Peyronies Disease. There are a few, like Tom Lue, who do understand, but they are in the minority.

Michael, gather yourself up and get on with the fight, I think you'll be glad did.

My Best,

Larry H

hey, im new here, not sure if im posting this in the right place but it seems like it. i've had peyronies for a while now, about 4 years id say, and im almost 21 now.  just reading that sentence is so depressing. i feel like ive missed out on my teenage years, i never got to date around and just have fun. im very shy, and when i think about it, i wasnt always this way. but now its really so hard for me to talk to a girl. this is somewhat due to the fact that i dont really go barhopping, not a big drinker really, and i dont go clubbing, dont like the music and i dont dance. so its not as easy for me to pick up girls in the first place, and my peyronies has pretty much drained me of any confidence i once had.  im about to be 21 years old, and im a virgin whos never had a real girlfriend and can hardly hold an interesting conversation with a girl, in fact i dont even try anymore.

a girl has given me oral sex once, she was bad at it and i didnt even finish, and i kinda think my peyronies freaked her out and she wasnt as into it as she would have been.  so basically, im rather unexperienced, not a smooth talker, and i have a "medium" case of peyronies. i can have sex, although sometimes some of the bumps do get irritated (masturbating) and red and swollen and can hurt. my whole situation really makes me feel hopeless. i dont go out like a normal guy and look for girls. i feel like no girl would really wana just have casual sex with me once they see what i have, maybe fearing they would get some disease. i dread thinking about explaining it to a girl in the middle of a kind of heat of the moment type of thing, and if i explain before hand i doubt it will ever reach that point to begin with.

ive researched my options, went to my doctor, and ive come to the conclusion im pretty much stuck with it. i was wondering if i could have some of the larger plaques removed though. well thats my situation, i decided to find a forum just to talk to some other people with peyronies and maybe get some kind of information, or any support, any kind of advice on explaining what i have to a girl.

thanks

This is probably sounds lame but here is a thought or two.  You must be interested in talking to family or friends or someone about something.  If so, those are the same things you can talk to a girl about.  The idea is to establish a friendship with a person that happens to be a female.  It is not, how to act cool to a chick and move into sex.  If you build a friendship, it will be much easier to discuss serious issues once you get to that point.  You may be surprised at how understanding a friend (female or otherwise) can be.


Best Wishes

Paul,

A lot of curves aren't that abnormal, a curve of 15 - 20 degress left or right isn't too bad and you can have sex and most girls wouldn't think that is a disease, just a natural curve.  A downward curve is also very normal and sex is very possible.  I was born with a pretty big downward curve, and never a problem.

Any change in the penis will freak out any person, and we can make a mountain out of a molehill if we don't talk about it.  If your curve isn't that bad, its possible a girl may not even notice it as being a disease, most girls in their teens or early 20s haven't seen more than 3 or 4 penis (in my day anyway)
If the curve is very pronounced, I think Hawk's advice is very good advice.
Steven

yea i know that, but the thing is the curve doesnt bother me much, its the bumps. theres alot, and some are kind of big, and they just dont look very aesthically pleasing. dont get me wrong i know it could be alot worse. but trust me its very obvious its not a natural curve.

to hawk...actually i have never talked about this with my friends, i highly doubt any of them know. i rarely talk of it with my family either, they didnt even know up until maybe a year ago. and yes of course i want to establish a friendship first with a girl, but if i didnt have this condition i feel like id have more options. sometimes a long term relationship isnt exactly what you want at the time, sometimes when you fall into the friend category, you never come out of it. thanks for the advice, but its not something i havent already thought of.

Paul:

Maybe I'm asking the obvious here, but have you been diagnosed with Peyronies Disease by a urologist? If not, you should get yourself to one. What you are saying about visibly-apparent bumps doesn't sound much like Peyronies Disease. I know what my case looks like - there's a plaque on the side, but you have to prod to feel it. It's not visible. I don't think I'm just talking out of ignorance, either - there's a Yahoo Peyronies Disease website, with a digital photos section. It contains about 100 photos. There are penises with extreme bends, some not so extreme, and some I wonder why they're there (exhibitionism?). But nothing in the way of visible bumps.

On the other hand, I do have bumps... little dark-red pinheaded ones. There's a name for them, and I don't remember what they're called but they're benign. They never caused me a moment's concern in my sex life - they've gone unnoticed by others!

I don't mean to minimize your pain, but I was once a shy 21 year old virgin myself. I worried about everything. It must go with the age: I remember snagging my sister's Seventeen or Glamour magazines around that time, and reading the advice column. There were girls who were writing in with such earth shattering concerns as: scuffy elbows and ankle bones that stuck out too much. So my advice is to just try to be natural, don't even think about sex just yet... just strike up friendships and see where they lead. You'll get lucky sometime when you meet someone who thinks, "Gee I feel so comfortable around this guy, I'm not even thinking about my scuffy elbows and bony ankles..." Then, when you do manage to get naked, chances are, she'll be kind of worried about how SHE looks... not the aesthetic condition of your unit.

Bob

yes i have been diagnosed by my uroligist,  he said he felt a little scarring. the bumps are like rings of tiny white bumps that go up the shaft, and theres larger ones sporatically placed along the shaft. oral sex is my concern really, otherwise id be using a condom and you wouldnt be able to see it.

Paul, I still think this future girlfriend is unlikely to inquire about what the bumps are, if she even notices. My advice is, don't worry about it until it happens. And if you just can't get over the thought of being embarrassed by it, maybe you should just make regular intercourse your goal.

To Paul, I was in a similar situation as you. I was diagnosed when I was 19. I could barely get an erection and I was just going out with a girl, she didn't notice for ages, then when she did notice the lump  she didn't care or pay them much attention.
From 22 to 28 I just gave up on the prospect of relationships or sex. Then I met a girl, we built up a friendship, and then started dating.
The guys are right. SHe didnt notice the lumps at first, or the curve. SHe still doesn't really notice the curve, she noticed the lumps but was like, oh whats that, huh, mmm, ok and that was that. To be honest if I hadn't told her that I wasn't getting a really good, full on erection, she wouldn't have n oticed that either.
So, all i can say is what everyone else has said. IF you meet someone, strike up a friendship the rest will take care of itself. I know it sounds impossible,  but it happens.
Besides, when you first get naked, she will be  so busy worrying about the size of her bum, her thighs, her tits, her stomach... to focus on you.

Quote from: furtil66 on November 19, 2005, 07:54:55 PM

Besides, when you first get naked, she will be  so busy worrying about the size of her bum, her thighs, her tits, her stomach... to focus on you.

Let me just say that I don't know much about women, but this is absolutely 100% true.
:D

It's interesting that most men develop Peyronies Disease in their mid-50's, but most of the posts in this psychological component section come from young men. Just an observation, no judgement intended.

Yep, when I developed Peyronies Disease about 9 months ago, I was devastated. My wife of 35 years said it was perfectly ok with her - we just have to patiently adapt to the changes required in our love-making. Somehow that acceptance escaped me and I have spent a lot of time pondering the "new, curly, deformed me".

When I was really feeling badly last week, we had a long talk about it, and followed it with a warm, passionate evening, including trying different positions.

I believe all those who've commented about having a caring partner are right - she probably understands and accepts the new twist on life far better than we ever will. I am grateful to my loving wife for her support and have a much better outlook on my whole life as a result.

Best of luck to everyone as we look for solutons that will really straighten things out for us!

Herk

I too am sooo fortunate to have a loving and caring wife who quite frankly doesn't care to much about my bend, "totheleft", hence my online name. She was more concerned that i was more depressed, my sexual appetite diminished, and the fact that she didn't have to fight me off of her. She obviously wants me to get better for my sake, but stated, for whatever reason with my bend totheleft i sometimes hit points i hadn't before........I love my wife

A loving, understanding and supporting wife or partner is a real blessing.  Like herk and totheleft my wife seemed to have less of a problem with my Peyronies Disease than I did.  I really think that the psychological effect of the disease is almost as devastating as the physical effects.  After the pain was gone I was still able to have satisfying sex although the erections are not as hard.  And like totheleft it seems that my sexual appetite is not anything like it was before.  My wife said that she did not think she would ever see the day like it is now when she is prodding me to have sex.  I did not think it would ever happen either.

I am just thankful for you guys at this forum because it really helps to hear from others that are in the same boat as you are and I would encourage all of you that are reading and not posting to go ahead and post.  It really helps!

I don't think there is any single component to this disease as important as a caring and understanding partner. The devastation of the psychological side of the disease cannot be overstated, and it's what the urological community seems to understand the least. To have a caring wife or partner in our fight is an immense resource.

Larry

Hello everybody :) Been some time since I last posted. As I told Hawkman in our emails, I've had 2 things going on. One is a big project I've been working on for several years now and I'm just now wrapping it up. It had nothing to do with Peyronies Disease.

Second, I just felt I was getting way to wrapped up in the Peyronies Disease issue. Don't misunderstand, I've never forgot I have Peyronies Disease and I think about it every day. I still deal with the emotions of and it and it still hurts to think about sometimes. It's just that it seemed like it had become (Peyronies Disease this and Peyronies Disease that). On forums daily, doing tons of research etc..  I think it was becoming psychologically unhealthy for me to be so constantly wrapped up in it. Peyronies Disease is part of my life now and I know that, but I just refuse to let it be a controling factor in my life. I know this is hard for the newbies to understand, because when you first learn that you have it it's devastating and hard to think about anything else. Trust me, I know! Been there, done that! I'm not going to tell you newbies that the day will come when you won't think about your Peyronies Disease. Because I don't believe that day will come. However, I can tell you that with time your Peyronies Disease will not be such a devastating controling factor as it may be today. Hopefully we will see a cure or some type of relief for our Peyronies Disease and then all this will be a thing of the past. Believe or not, they are making progress. Anyway, just wanted to say hi to everybody and let you know I'm still here and that I'll be making some post again.   Best regards,     Rzz

Nothing has improved.  Doesn't look like it's going to, I guess.  And over the last few days, I have become incredibly depressed and defeated.  I'm just short of a year in, so I probably sound like a big weenie, but my condition and prognosis just seemed to hit me full force lately.  This condition makes me feel, for a lack of a better word, lost.  I logically know I am not alone, but emotionally I am suffering.  Don't exactly know where to turn next.  I am not generally a defeatist or negative person and I have tried, but damn.  Looking down at what appears to me to be a deformed and ill-functioning penis has wiped me out of late.  Sorry gentlemen, I probably shouldn't have posted this, but I just needed to vent....or whine....as the case may be. 

SteveW,
Don't worry my friend, venting is one of the many reasons this forum exists. You are NOT a big weenie.........you are hurting and had something to say. Where else can you go and find compassion and understanding? I am moved by your words because they express my very thoughts too. Thank you for your sincere post.

Regards,
Barry

SteveW
Ditto...I'd like to say I've had my highs and lows, but they've mostly been lows and lowers :(  I've been at this for a year, with first topical and now up to 9 VI's with 0 results (other than the bruising!).  I'm going to look into VED's rather than take the step my Uro suggests -- surgery :o  As Barry said, you're certainly not alone!

SteveW, I echo Barry's on-target comments.  I moved all those posts here to drive the point home that that is a main reason for this forum and the entire point of this topic.  If this forum is not a place you can unload, then we need to pull the plug.  You have often welcomed and encouraged others.  You are a big contributor to what goes on here.  You have every right to expect that you can say what is on your mind and expect support.

Rzz made a statement below that I agree with: 

QuoteI'm not going to tell you newbies that the day will come when you won't think about your Peyronies Disease. Because I don't believe that day will come. However, I can tell you that with time your Peyronies Disease will not be such a devastating controlling factor as it may be today.

Try to focus on what you can change and not "dwell" on what you can't.  I am not going overboard but the AA creed or prayer that says something to the effect "God help me to change the things i can, accept the things I cannot change, and the wisdom to know the difference"  That is a sound principle for every aspect of life.  At times it just requires us to look up and not look down.  With Peyronies Disease that often means both literally and figuratively.

;)

SteveW:

I too will echo all the previous posts with their many good comments. You probably know this already, but I developed Peyronies Disease at the early age of 24 as the result of a bad sexual encounter. The details don't matter, but the result was a very badly deformed penis. Picture this as 1950s scenario with little being known about Peyronies Disease. The nasty stuff has receded and come back several times since that first episode.

In 1995 a radical prostatectomy left me impotent and with more Peyronies Disease. Resultant "so called treatments" did nothing. The pills did nothing and the rest is history.

I am relating all this so that you might understand that over the past 50 odd years, this mess has given me reason to do many things all the way from thinking suicide to a very high, etc. Anyway, don't despair as it is not the end of the world. It just means that things in your life have to be adjusted to cope with what has been dealt to you.

Keep the faith, try anything that you might think would help, rely on the help of others and seek professional help when needed. Hope this helps in some way. If ever I can be of further help, just let me know

Sincerely, Old Man

SteveW, also remember that you're far from alone. You're not even 1 in 1000. Current estimates range all the way up to several percent of the male population, to one degree or another. So, many of the guys you see on the street every day, and very likely some that you know, are dealing with this.

Also, although you see a lot of discouragement on this forum, and cynicism about the medical profession, the bottom line is that there is real research going on regarding fibrotic disorders and eventually this is probably going to be solved. We just don't know if that might be in 1 year, or 10.

There are also a couple of wild cards to be played.  VED therapy might go mainstream, and urologists may start to get involved and find ways to make it work even better.  AA4500 - the collagen-dissolving enzyme - is still slowly working its way through the FDA system. Recently Biospecifics (its originator) sold a good chunk of their business, supposedly to raise money to assist their licensing partner Auxilium in getting the FDA trials moving again. Several million new dollars are now becoming available, which might break the logjam. And, at least one urologist (Lue) is actively looking for a simpler, short-term solution such as perforating the fibrotic tissue to allow it to stretch.

Bottom line, hang in there and see if life doesn't surprise us somehow.

I am truly glad I found this forum. The previous posts here today are the reason why. We are not alone but this is how this disorder is and plays on our masculine pride, causing depression and anxiety. I am a little more than a year into the my Peyronies Disease, and absolutely nothing has worked. I also have to admit that many times I am torn that I too want to come on line and read on the forum but at the same time you don't want to be reminded of your "bend", "plaque",etc. I am a physician and I too am very frustrated at the minimal information/ research/ and treatment options afforded to the typical urologist. I am not a urologist, but I will also confide that one my best friends and old medical school roommates is a urologist and I have not been able to bring myself to confide in him and ask him for advice. I am thankful for the posts here. Several months  ago, treatments that I thought were ridiculous, or unfounded may add some benefit for some and none for others however those possibilities are brought to us in this forum and I can guarantee you will be getting more bang for your buck with an hour of reading on this forum, than you would at a uro's out of pocket consultation . I believe myself to be an optimist. I am going to keep trying....whatever the approach. I too will be looking into VED's if my current regimen doesn't show promise. You need to keep an open mind. No doubt there will be up and downs, but as an old coach once said it is not the size of the guy in the fight but the size of the fight in the guy....haha.....i know really cliche....... my best to all

Friends,

I couldn't begin to express my total gratitude for all of your kind words.  So I will simply say, "thank you."
It's been tough of late and immediately after sending last nights message, I was regretting it.  Now I don't.  It is very apparent to me...why we are all here.  It does make a difference and hope I can offer my support back to all of you.  Again, thanks to Hawk and each of you.

SteveW

SteveW,

Reading your post and the responses by the other guys here has encouraged my quite a bit. After seeing 3 different Uro's who all had nothing to offer me I decided that there was nothing I could do either. Looking down at a not so functional penis has definately caused me my share of anxiety and depression - but nothing will change if I continue to do nothing. I am scared to try something like a VED but maybe I need to just jump in and try something. 
So you probably didn't think that you would encourage anyone by your post but you did and I appreciate it as do others.
DavidW

SteveW, Hang in there. I've had this stuff since late 97 early 98 and I'm only 51..
But be thankful you're not way up ther in Alaska, where there are no Doc's who know a whole hell of a lot about this stuff.
But I keep trying!!
Have found some women who just love the bend, others, well it want a pretty picture. LOL.. But life goes on

Not sure geography has much to do with the lack of medical knowledge regarding Peyronies Disease.  What they hey, at least Alaska is beautiful!  Since you mention sex, I think (OK, I know) the last few attempts resulting in uncomfortable, painful, unsucessful, incomplete, failed attempts at intercourse brought on my latest bout of whining and self pity. 

  I agree that a loving wife or partner is a blessing. Peyronies Disease is a couples condition, not just a man's condition or problem, etc. If someone had told me a several years ago that I would soon be married to the smartest, most understanding woman in the world (slightly biased opinion  ;D) and that we would talk about Peyronies Disease and research it together, I would have told them they were nuts. For me the early stage of Peyronies Disease was hush hush, stay out of the limelight and feed my denial. I finally opened up to a MD friend who referred me to a decent urologist and 1 steroid injection was tried, and years passed with little resolution to the curve. Years later, the day she had some kind words that encouraged me to talk about my Peyronies Disease is a day I shall never forget. A tremendous weight was lifted from me that day... we talked for hours upon the subject. After that, I couldn't say enough about it and how I felt. She would share thoughts, and we would search the web for hours for Peyronies Disease treatments and solutions. I've dealt with Peyronies Disease now for almost 15 years, most of them alone with no one to confide in and it was tough beyond belief in the beginning. You are not alone in this; we may be scattered across the globe, but we have a voice in this forum, and I encourage dialogue with your partner. Solutions are slow to come about, but they are happening.
   And for understanding wives and partners who might be looking over his shoulder and reading this: bless every one of ya.
 

As you are all aware and my recent posts can confirm...we have good days, bad days.  Good weeks, bad weeks.  Good sexual experiences and bad because of, or in spite of Peyronies Disease.  My latest psychological pity party was brought on by 3 consecutive failed, painful and somehow embarrassing sexual attempts.  Male ego really bruised.  I lived.  I will continue to be loved and to love.  Especially if everyone here lets me whine and complain every now and then.   ;)

Jim,
You are so right that the emotional and psychological component of our disease is often the most difficult and challenging.  I am "partnered" so I can't address the "first date" issue, but when this affliction suddenly hit me, I found it difficult to discuss even with my partner of 9+ years. Our communication has improved and we often have an open honest dialogue regarding my penis; still I can relate to where you are coming from.
Male ego, pride and all that BS.  Men just can't have sexual, organ or performance issues.  It isn't allowed.

You know what I have found?  Honesty works every time.  I don't think you need to address the status of your penis early on.  Wait till you actually are intimate and should the size/shape of your unit becomes an issue, then explain, if it should it become an issue at all.  You are more focused on your unit than she is.  If she questions or the situation prompts discussion, then you can tell her what is going on.  It is usually a bigger issue for us guys than for our partners.

SteveW, Jim,

I had a girl that I was on the verge of becoming intimate with and not even my gf, I brought up the topic, and she didn't seem to care at all, shes been very supportive and feels sad that my penis may not workat all someday, but hopes there is a cure, she said she could go out with sex for six months at a time and doesnt need it.  It really depends on the girl, but it is true that us guys focus much more on our penises then women do, if you treat your lady right she wont care what your penis looks like, even if its green!  I know this is hard to cope and deal with, especally for me, as even if a girl accepted my penis shrinking I simply can't accept this.  I try to clear my mind a little bit everyday and think about whats really important to women and think about how I'm doing in other departments besides the penis/sex department in my relationships with women. 

ComeBackid

Welcome JD. I too am having severe emotional trauma right now. Yesterday, I finalized my divorce and am on a rollercoaster now. I have had this Peyronies Disease since Dec 05. I agree with these guys. It's too easy to sit and feel sorry for yourself. At first, I was so devastated, I pretty much turned into an introvert and drank a whole lot. With this forum, and a nurse friend whom Iv'e known since High school, I have slowly become my old self again as well as gaining valuable knowledge. More positive outlook, a good Urologist who seems to care and is willing to try/prescribe just about anything to beat this crap. I wonder also how I would approach the next lady in my life with this"condition".I don't like calling it a disease personally. At my age(47) I believe I have a good chance of finding a partner who probably won't care so much anyway and will be very supportive. That's my hope! There was some very good advice that I agree with. Get as much knowledge about treatments for this, don't focus so much on wondering if you will or can "please" your next partner, but focus on your positive attributes and qualities that you do have to offer. I truly believe that a Good woman will be very supportive, and accept you for who you are, not what you can do. Remember, there are many ways to satisfy a woman.Anyway, thought I'd throw my 2 cents in. Good Luck and again Welcome. Zig The Twig Gotta go slap some TV on the monkey :D

I think Peyronies Disease is more common then we think. I think alot of guys might have a slight case of it. The scariest thing about it is knowing it can get alot worse. When I read on all the health sites it goes stable within 12-18 months I was releived since ive already had it I think for like 6-8. It wasnt until I visited some of these forums that I realized it keeps getting worse forever for some people. Thats the worst fear in my mind right now as im fine sexually and no girls would even notice my problem. I just start thinking this is just the begginning man, sure your fine right now but what about in 2 years. Its that thought that really scares me, I wanted to move out to California this summer and get into comedy and acting but this thought has kept me back as its just too scary. I just feel like Peyronies Disease has took all my dreams away you know. I wish I knew how bad its gonna get or if its going to get better even. I just think to myself if I go find a girlfriend and get frequent erections during the day and forget about this Peyronies Disease it will stay the same or get better. Anyways another point im getting too like some of the girls posted under this topic is Peyronies Disease isnt always that bad, if you got a mild case most girls wont even notice and you can have sex fine. A girl I know says she perfers a curve as long as its not too bad, so a mild curve is actually good I think too some girls. Its when you get into the servere cases and have ED that its a problem. I dont know, just trying to say a few positive things,lol.

howcanthisbe,
6-8 months may be a little early, but once you stabilize, it maybe, most likely will not get worse.  Stabilization I think varies from man to man.  The effects, mass size and feelings may change somewhat over time, but many, many men report that after the disease goes stabile, it doesn't seem to get worse, but doesn't get better either.  Don't freak yourself out.  You may very well be at the worst and if your current condition is manageable and sex/pain etc., don't prevent performance, don't fear what may never come.

I would like to add that for me, the psychological aspect of this has been the most damaging.  At this point I am seeing a doctor to learn to cope with various stresses.  My performance anxiety has reached a point that I cannot have sex with my 28 year old fiance.  I had Peyronies Disease for two years before I started experiencing any ED and it has been purely psychological.  I have nocturnals and have no problems masturbating.  But when it comes time to do the real thing I get stage fright.  I have scared the crap out of myself the past few months about my Peyronies Disease getting worse.  I recently came to the conclusion that the damage I have caused worrying about Peyronies Disease is worse than the Peyronies Disease itself. 

It has also been said that the brain is the larges sex organ there is. That may vary from man to man  :)

I wish i had words of advice, but not knowing you or you fiancee, it is difficult. 

If she is understanding, and you can actually get to the point of having no feeling of expectations.  A setting of  just intimacy, just mental snuggling bedroom intimacy where you feel as safe and as in control of what is expected, as you do when you are alone.  A time and place where you can decide to perform or not, go 3/4 of the way and quit, or quit and then slowly restart.  Experiment and see what will work and what doesn't.  Enjoying a trusted best friend which I hope she is.

I don't know what else to say, except if you can envision the scene, and if she can envision the scene, then you can work toward reproducing it.

Note to all:

As many of you know and others may not know, I have battled Peyronies Disease for over 50 years now. My first episode (have had 4 or 5 total) occurred at age 24 when sex was foremost on my mind. Dealing with that episode took its toll on my mind as well as the body. Vitamin E was prescribed as the only known treatment for Peyronies Disease in 1954, and I took thousands of the gels it seems like.

Then, with the second episode years later, the first having seemingly gone away on its own, many and varied treatments were prescribed one of which was Potaba. I took over 13,000 of these pills, 6 at a time four times a day which did absolutely nothing for the symptoms. Later, x-ray therapy did nothing and I suffered through that episode and it finally receded to a tolerable state.

Later, more episodes came and went. Finally, prostate cancer required a prostatectomy in 1995. Nerve sparing surgery was not possible due to the enlarged state of the gland. Fortunately, the surgeon was able to get all the cancer, but in doing so, I was left impotent. Recovery from this surgery alone took its heavy toll on my body as well as my mind. However, I had to overcome this and carry on with my life.

I am sure that the rest of my story is contained in the posts on this topic and others spread throughout this forum. I am relating the above again for those new guys who may not have had the time to read up on past history of some of us who have been around for a while.

The above is intended to relate how I have coped with many medical problems in my life. (Have had many surgeries in my life with most of them major.) The main reason that this has been possible is that I have kept my faith in God and relied on His power to heal when I called upon Him in difficult times of surgery and other medical problems. He has come through for me in all that I have asked of Him. So, bottom line here is that one must keep their faith and believe that there is a Higher Power that can and will intervene for them if they only believe and ask. One of my mottos is: Doctors treat, but God heals!

Good luck to any and all who are suffering from this crazy mess called Peyronies Disease. I enjoy being what I call Peyronies Disease free at the moment. Do not look forward to it striking again, but I am ready psychologically ready for it if it occurs. So must each and every one who suffers from its devastating claws! May God bless you all and take care!!!!

Regards to all, Old Man

my greatest battle with Peyronies Disease is in my mind and my pride i fight this battle every day and so far i am losing but i have found new strength in been here and just reading what you guys have to say

I've heard different versions of this.  For the last year, I have had to test the theory.  It is true.  Keep an "open mind".  Realizing the whole point of sex is pleasure and fun and is not limited to a particular act opens you up to a new and better world of intimacy.

Thanks guys.  I have always been a huge advocate of anti-whinning.  But I have been the biggest candy-ass when it comes to this.  My fiance tells me that she doesnt think it looks abnormal at all.  She claims to have been with a guy who had a congenital curve greater than mine (I am at 45 deg).  I guess my biggest problem is the unknown.  If God came to me and said I would have active Peyronies Disease for the rest of my life and by the time I died my penis was going to look like a used peice of bubble gum then I would be okay with it.  Its the speculating, checking it every 5 minutes to see if it's changed, wondering if I just found a new bump or has it always been there.  Thats what drives me crazy.  Like I said in another post.  My Peyronies Disease is better now than it has been in 3 years.  But as soon as I started researching it in depth, the more concerned I became about re-activation.  Maybe I shouldn't read the posts here anymore..... :D

LB,

A powerful, true statement that has almost been turned into a cliche' is the AA prayer that goes something like:

God grant me the power to change what I can
The strength to accept which I can not change
And the wisdom to know the difference.

The behavior you are describing could be somewhat obsessive/compulsive.  In the context of the wisdom above, what can you do if you find a little  new lump?  What will you do differently?  All you can do is assess the reasonable things that may help.  When you do, you do them as maintenance.  To me that is ALC, some natural anti-inflammatories, A hot soak, and or some gentle VED use. and if you have ED issues L-Arginine,  maybe a 1/2 of a trazodone at bedtime.

If you clearly have an active bout you may try adding Pentox.   Your list may be different, but develop that list and and continue to educate yourself and don't dwell on it.  Ahaaaa you say, but there in lies the problem.  If that is true then you must turn you attention from your penis to fixing your thought processes.

Remember that the biggest problem that needs your attention is not your penis.  Your penis works and is all your fiance' wants it to be.  An imperfect penis will not destroy your relationship or your life.  The psychological aspects of this may.  Make a decent attempt to set time aside to do some positive imaging.  Spend time in open communication with your partner.  If you believe in prayer then apply it.  You will soon know if you have the tools to make the necessary progress.  If you find you need a bit of help, then seek that help as fast as you would chase a new breakthrough cure for Peyronies.  Move your energy from obscessing to finding a GOOD psychologist for some counseling.  It is likely to give you much more of your life back than anything in a urologist's bag of tricks.

Good Luck and keep us posted, not on your penis, but on the real issue.

    Accepting our condition is not easy. Understanding how men are "wired" in this respect is not easy, but can be done.
    I broke a finger playing softball in grade school on my throwing hand; I shrugged it off and didn't say anything to mom nor did I have it looked at and set. To this day, that finger is bent; the last joint points down at about a 30 degree angle. I worried about that finger for a while, then I discovered that even though I hold a pen differently than before, alas, I can still write. I can still throw a ball. I can still function with this hand and even hold a guitar pick and play. I haven't thought about it until a few minutes ago because I discovered long ago that the bent finger wasn't an issue in the big picture because life went on and I could do things with this hand just by changing and adapting the ways to hold things and do things. If I could have applied this quick recognition and acceptance years ago when Peyronies Disease came about I may have been able to skip the years of worry, obsession, fear of rejection and all the associated emotions of Peyronies Disease.
    But we aren't quite wired that way. We all probably know many friends that have broken fingers, toes, arms, legs and so on that have healed with some form of bend or abnormal appearance, yet little if anything is ever mentioned about it because the owner has adapted to it and does not make a mis-shapen appendage an issue. We are wired in such a way that if anything happens to our penis, our symbol of all that is manly, the world stops turning and we will be shunned and ridiculed by some women, because a mans view of himself now with Peyronies Disease represents some horrid Frankenstein or Hunchback of Notre Dame image. This is not the case; we are still whole, we still have the blessings of being able to walk, talk and enjoy life. We are still men in every sense of the word. To my wife, I have two slightly bent appendages now, but they are both seen essentially as non-issues. The need to obsess about either one of them does not exist. This was not the case with me years ago, but with her support these things slowly came to me.
   We are still men; we are whole; we will continue on. Our broken, bent fingers won't stop us from doing things, and neither should Peyronies Disease.
   
   

there is no improvement in my bodyand no light at the end of the tunnel, i tell myself that it can only get better but the deep dark parts of my mind laughs and tells me I'm kidding myself we all fight the darkside..(damn star wars) but my own fight is still losing i hope one day i will win this battle that goes on in my head and over come what has happend to me

englishsyr,
Believe me when I say...there can be a lot of things worse than having a crooked dick.  This condition has been the central, overwhelming focus of my life and existence for a year.  Guess what?  I found out quite recently in fact, that I am and have been blessed.  I was and I am loved and that the size/shape/function/appearance of my penis is really, really the least of the challenges, problems and emotional crisis that a man can face.

I am the one who made this paamount in my life.  I did it.  No one else.  Right now, I am trying to heal and repair myself on many, many other levels.  My dick now seems to be a little lower on the list of what is really vital and important. 

Perspective and self awareness, are incredible and empowering. 

If we make up our mind to forge ahead...in love.

Well said, Steve! 

Dear English:

You are not your dick. You are much more than that. Persevering in the face of a distracting illness like Peyronies Disease is tough, but it is not impossible. Sexuality has been (FAR too much) the most important part of my life in many ways. This challenges me at my core and that is as frightening as it gets. So for me this journey is about finding wholeness in myself as a man, and not merely determining my value by the shape of my penis. or even by the ability to have intercourse.

If you want to believe that all that is valuable to you is determined by your penis, you are shortchanging yourself. Our worth is determined by what we choose - completely. Even our sexuality is - I am eternally grateful for having had the opportunity to learn that my mouth and toys could complement my penis in the bed - and I can still use those quite well! I am glad that I have a career that helps me find value in my day to day existence and productivity. I am blessed that I am learning - even now! - to reach out to others for help and support when I feel so alone.

That is the way to get through this - by ending your isolation in your marriage and your life and by talking to your wife and to others about what is happening. That is how to get through this - so why not try it?

Hang in there...  Tim

I'm 26, I have Peyronies disease, and need some advice.

I've had it since around November 2005 - I have the pain and the curve, which is actually quite severe as my penis looks deformed to be honest.

Ever since I noticed it I got concerned naturally, and looked on the net for what I could find. I was relieved to see that it's not cancer related, which was a small plus - but for someone in their early 20's etc. Anyway, I then found it out was Peyronies - I have the pain, the bend and the hard bit in the shaft of my penis which is called a 'plaque' from what I read. It bends to the right.

I have been using 1 400ie Vitamin E per day for around 6 month now. I still have pain when erect.

The thing is, I also have MPB hair loss and use various hair related medications such as Minoxidil, Finasteride etc, so basically my 20's have been dominated by problems. Naturally I have no girlfriend and progress in life has really stopped for me. I spent he best part of my early 20's dealing with mpb hair loss and worrying about losing it - as well know your twenties is supped to be an enjoyable time and a time where you find yourself in life and plan a family.

Well, at 25 years old, last year - I noticed a pain in my penis and the bend. The bend has got worse, and I'm just waiting for the year mark right now. I use Vitamin E but I'm reluctant to touch other drugs for Peyronies as I hear most of them have side effects that give you hair loss - which is the main reason my life has gone down this difficult path, so I don't really want to go there if possible.

I see so many refer to the wait and see approach - that's my plan. Is this a good thing? Maybe not. I haven't been to a doctor, because for one - I'm binding my time. I'm not an expert with dealing with embarrassing situations, although being a guy in his early 20's with hair loss, I've got used to it to an extent.

I plan to see the doctor at the year mark, because this can't continue otherwise I will get no where.

I won't be very comfortable talking about it. I see many people my age making progress in life and having a good time, where I spend a lot of my time up in my room. This is not good at 26.

As most of you can really relate, peyronies has made me depressed - especially being a guy in his early 20's. I've never had a girlfriend, mainly due to the depressing (MPB) male pattern baldness has brought, and with peyronies disease, this had made things worse. They say you can't make another person happy if you're not happy yourself, and this applies to me. At this time, I see myself as a proverbial mile away from dating a woman or making real progress in life, right now.

All I want is solution to my peyronies, so I can at least find some motivation to sort out my other problems.

What would your advice be? I do have time to enjoy some of my 20's at least, so it's not over yet. I will be 27 in January though, so times ticking by quick.

I haven't been myself or felt any enjoyment since I was around 21 -around 2001. This is where it stopped for me, with the progression of Male pattern baldness etc, and then last November - Peyronies disease - both in which have no cure for them.

When I do see the doctor, I will have to take polaroid of my bent penis for him to see. This is going to be excruciating for me, but I realise I need to be strong when talking to him, whilst trying to express myself at the same time.

On a side note, I have a funny feeling the reason I have peyronies is because of Finasteride/Dutasteride I have taken which are medications for hair loss. I have never smoked or drink and I'm quite healthy. All in all, I am naturally young looking and feel I would never have got peyronies if I wasn't taking these hair drugs, but I can't stop taking them, as this is the main reason why I am depressed in the first place - hair loss.

I just have these 2 problems that are preventing me from making any progress in life, and more importantly, they have taken away my happiness.

I'd appreciate any advise as this is quite difficult to deal with mentally. Especially as I don't want to come across as a depressed person all the time, because we know this  major turn off. I mean - who wants to be friends with someone who's depressed.

Thanks for reading, any advice would be appreciated.

Dear Gunner:

I have thought about your post for a while. You have asked for advice, and I am going to give it. It may not be what you wanted or expected to hear, though, but please remember that it is given with compassion for your fears and hopes in this world.

Let me tackle this... um, see my advice below to English.. Jus as he is not his dick, you are not your hair. If you believe that your baldness determines your lovability, then you are simply incorrect. That is faulty and distorted thinking. There is certainly enough evidence in the world around you to demonstrate that balding men are lovable and loved.

I reread your post and saw 8 separate references to hair loss. Most are accompanied by clear-cut erroneous thinking. But how dare he call my thinking "erroneous" you may exclaim! Well - it is. If the truth behind a thought can be demonstrated to be one way or the other, then the mood that accompaies it may change.

Here are some examples:

"I also have MPB hair loss and use various hair related medications such as Minoxidil, Finasteride etc, so basically my 20's have been dominated by problems."

Error: Hair loss equals a problem. It is felt to be a problem by YOU, but for many it is nothing more than simply how they look - and many look pretty damn good bald too.

"Naturally I have no girlfriend..."

Error: No woman would love a bald man - simply untrue.

"I hear most of them have side effects that give you hair loss - which is the main reason my life has gone down this difficult path"

Error: Most people who are bald are happy and satisfied in their life, so it is not "natural" that you feel this way.

"...being a guy in his early 20's with hair loss, I've got used to it (embarrassing situations) ..."

Error: YOU feel embarrassed. Most bald men are not embarrassed about it, and so are not "used to it".

"All in all, I am naturally young looking and feel I would never have got peyronies if I wasn't taking these hair drugs, but I can't stop taking them, as this is the main reason why I am depressed in the first place - hair loss."

Critical Error! Hair loss is not why you are depressed. Simply put - you just are depressed, and as part of that process of depression, you have distorted thinking about baldness. You have given baldness a power over you that it does not possess of it's own accord - it is nothing more than a pattern of how your hair grows. Your hair has not inherent qualities of goodness or badness at all - it is just hair.

Rather, it is you that has a problem and the problem is depression, not baldness. Based on the enormous number of seriously distorted impressions of how baldness controls you in just this one post; based on the sheer number of VERY negative self statements you make, it seems like an extremely serious problem, and one that goes far deeper than a hair follicle.

I do not know if hair enhancement products are a trigger for Peyronies Disease. I know of no reported evidence that this is true. But if I thought it were true, I would not hesitate to stop taking them if I thought it would fix my Peyronies Disease. But if I were you, I would start by seeking help from a GOOD therapist for depression, and I would strongly consider the use of an SSRI anti-depressant (either prozac or celexa or bupropion - less potential side effects for the penis). I would tackle why you are isolated emotionally and socially over a trifle like the hairs on your head, and then see where you are. Of course, during all that time, there is no reason not to go to work on your Peyronies Disease, using the tools that you can acquire here.

Tim

Attached are some images of men to make my point:

Good looking bald man:
http://www.focusonstyle.com/stylething/images/BaldGuyzAA025244sw.gif

Bald man with good-looking woman:
http://www.baldrus.com/images/tenney_amy.jpg

Balding man who is not a "loser":
http://www.speedtv.com/_assets/library/img/large/39351_michael.jordan.hs3.web.jpg

I could go on, but I shall stop right there.

I know how you feel.  When I was 20 I went through an episode of Alopecia Areata (sp?).  Basically my hair feel out is big clumps for no apparent reason.  The doctors couldnt do anything and didnt really care.  And in hind sight they shouldn't have cared, it's just hair.  I'm not trying to belittle your situation but hear me out.  My hair eventaully grew back, but it took about 3 years.  At first I was depressed and would wear a hat all the time.  I eventually shaved my head and started working out.  Those were probably the best 3 years of my life.  I had a shiny head and but on about 30 pounds of pure muscle.  I have met so many women who love a built bald guy.  As for the hair, my suggestion is to stop worrying about growing it back.  Shave it bald and start lifting.  Join a gym and try to get a gym partner that is huge and start working out with him.  Pretty soon you will start wondering why you didnt always shave your head.  Show off your baldness.  Women dont care about looks so much as they do confidence.  Ever wonder why there are so many fat ugly guys with fine women, confidence.  This will also get your mind off of your Peyronies Disease and give you some goals to focus on.  By the time you start noticing alot of changes in your build will be about the time your Peyronies Disease is stabilizing.  And remember, your deformed dick is only a big deal if you make it one, just like your hair.

At 18 my MPB started.  Today, bald is in.  Go for the shaved look.  Embrace the baldness.  Be the baldness.  Grow a Van Dyke (mustache and goatie).  It is a very manly look and chicks dig it  :::sounding like Sammy Davis Jr.::::  Make sure to get a good tan including your head.  Go to the gym.  Reinvent yourself.

I did this.  It helped me sooooo much.

So true about the confidence, LB.  Our stories sound so similar.  At 36, I had high school girls flirting with me (until I told them my age).  I was big, bald, and confident.

God made a few perfect heads.  The rest he put hair on. ;)  Old line, I know.

Good Luck,
Liam

   
         Gunner.

         Tim, Lunchbox and Liam are right on the mark, so I will eschew obfuscation and not re-state those thoughts here.
         
         I left my hair in the drain of the shower at the university I attended. Dad was bald, brothers are bald, grampas were bald.

         Spent fortunes on hairpieces.

         Shave it completely. Use the Gillette Fusion 5 blade razor or other good multi-blade.

         Read and re-read Liam, Lunchbox and Tims posts. They know of what they speak.

         I still get asked for ID sometimes, and a high school age checkout girl at a grocery store once said "Cool... you look like one of those NBA basketball player guys..."

         Let the healing begin. You're going to be fine, friend.

         

         

10 Reasons to love a bald man

1.   They take less time occupying the bathroom
2.    They are easier to find in a crowd
3.   They don't leave hair all over the sink
4.   Their hair-do isn't better than mine
5.   He will never have a middle age crisis and get a Mohawk
6.   I never have to wonder if its real or fake
7.   Can't get my rings tangled up
8.   It is easier to give him a scalp massage
9.   Never has a bad hair day
10.    I get all the shelves in the shower

Caring,

Somebody gave my wife and me caps.  Hers says, "Bad Hair Day".  Mine says, "No Hair Day".

I always tell my wife she leaves more hair in the drain than I ever had on my head

Liam,
Save that drain hair, someone may need it. Like  everything else that goes in a garage sale.

Love the hats.

Have to throw my 2 cents in. When I was 29, and knowing I would become Bald I was devastated. I cashed in some 401 K and within a 5 year period, spent about $18,000 on a Hair Transplant job. I,m 47 now, and yes the hair doesn't look bad at all, but had I to do it all over again, with compounding interest on a decent investment(12%) plus the Penalty taxes I had to pay on the 401 K default, I'd probably  have in the neighborhood of 125-135 K extra retirement right now. And yes, I'd be bald, but the funny thing is,my last wife and girlfriend after that, asked me to shave my head.They said it was sexy on other men. Listen to what these guys have to say. I am off to the Gym. Just had my first date in 2 1/2 yrs because I finally refused to let this Peyronies Disease crap control my life. For the first time, I wanted to get to know the lady as a person and human being 1st, without the pressures of letting the little head rule. Zig The Twig out Thanks Guys

Guys, thanks for the replies.

I'd prefer not to talk about the hair situation as there are other forums to discuss that and guys, I've worn that subject out for the last 5 years. I know a lot of it is psychological, but a lot of it does matter, especially to a guy in his 20's.

I'm not imagining the negativity I see on a daily basis that mocks hair loss.  A young girl isn't going to go for the guy with hair loss.

I'm not Vin Diesel and I'm naturally skinny - gym or no gym.

A concern for my right now is Peyronies. I'm 26 and my Penis bends to the right and its painful in both ways. A psychological obstacle.

How should I approach this? being 26 years old. I've had it for around 8 months now. I take Vitamin E.

I see some sites recommending the wait and see approach with others not preferring this route.

Sometime in the future I'd like to maybe start a family, but I'm a mile away from this at the moment. For example, a young 24 year old female. Paris Hilton - she kind of represents the youth of today. If she saw my penis, she'd probably squeal and it will be a humiliating situation.

I wouldn't expect any less to be honest.

Just what would you say to woman who isn't old enough (anyone under 29 basically) to understand this? A 24 year old girl isn't going to sit there and take in my story on Peyronies disease.

I know this is probably false hope, but what are the chances that is resolves itself? If you can give me an honest answer, I'd appreciate it.

What other options does a person have? What way would a guy in his mid 20's go in a situation like this?

Sometimes my confidence goes to pot - especially with routine telephone conversations, and I've been unemployed for around 6 months now.

Anyone else in my situation with regards to the peyronies?

Thanks again

Gunner,

I can totally relate to you and your situation as I'm 22, I understand your paris hilton analogy.  In fact, I thought just like that for awhile, to my surprise, there are nice girls out there who simply don't care about peyronies, or will show you compassion about it.  Dont' get me wrong, your not going to find these girls at frat parties, clubs, or bars, I'll be straight up honest with you.  In fact if your doing the one night stand ordeal and you pull out a bent penis, you may get some crazy reactions from girls.  However, I don't want to put a sweeping generalization on clubs, bars, and frat parties!  I know how you feel cause I've felt the same way, seemingly hopeless in finding an attractive, smart, and compassionate mate.  You need to redirect your energy on what qualities you have other than your penis.  Suprisingly a lot of girls will like you for more than just your penis. I know you may think I'm bullshitting you, but I"m not, the women are out there, its not always easy to find them.

As far as treatments, Ill just tell you what I take and what I believe to be effective, I do take vitamin E, however its not really proven to do much at all.  Acetyl L Carnitine is good to take away the pain and possibly reduce the bend, I take this twice daily after meals, 1000 mg each dosage.  I also take 1000mg of L Arginine , two and three times daily, randomly.  Besides this I use IONOtophoresis treatments which drive liquid verapamil into the plaque to try to dissolve it, and I also use the VED to try and straighten my bend and regain lost size by slowly stretching the plaque over time, following Augusta Medical Systems routine, with guidance from Old Man, a member on our forum.  If you have any questions about my routine feel free to PM anytime.

ComeBackid

Gunner, There could be things much more serious wrong with you than peyronies. Be thankful for that. I know that there is a lot of thoughts racing through your head. Being unemployed doesn't help, it gives you more time to obsess about your condition. Just as ComeBackid stated; if you are looking for a one night stand, forget it. When you meet a nice girl, who likes you for you, she really won't be too concerned about your penis. If that is all a girl has on her mind, I'd say that she is pretty shallow. Think about all of the other ways that you could please your honey sexually. If you talk to women they will tell you that the penis is only a small part of sexual gratification for them. Women don't react the same as men do when it comes to orgasim. We poke it in and stir it around and then bam! All done. It takes a woman a lot longer to get off. Use your imagination, and you will have the happiest honey around! I still take vitamin E, but not as much as I did at first. I'm going to do old man's prescribed method with a VED. I'm waiting for mine to come in the mail. I will take some other supplements along with the VED usage. I will let you know what I'm taking next week. I was using so many differant things, that I lost track in what I was doing. I'm going to start over. I think that heat will help. Even if it doesn't, it sure feels good soaking in a hot tub. If you add some epsom salts, it helps to relax you. Epsom salts is cheap, and can be bought at any drug store. I've also noticed that people use antioxidants. There are a lot of them out there. I haven't chosen the ones I'm gonna use yet. They will be good because they cleanse the body of unnecessary stuff left over after your body processes food and the such. Even if that doesn't work, It'll make me feel better physically. The most important thing of all is, to stay out of your head! Go back through the threads and research treatments that others have used. Go to websites and read about the disease. Keep yourself busy. You could be really worse off than you are. The world isn't over because your dick is crooked. You just have to adapt until the disease settles down, or they find a cure. And just remember this; if you want a family, and you can't do it with your penis, you can always use insemination. Use your own sperm and make babies! Relax, join the club, and get ready for an adventure. Keep the faith!   Blink

Gunner,

I know what you are going through.  As this Web site has proven, you are not alone.  There are guys of all ages on this forum, and while I'm not in my mid-twenties, I'm only 31 and found out I had Peyronies Disease last year shortly after my 30th birthday.  I was single, and I thought my relationship-life was essentially over. Here's what I can say from my experience:.

Your relationship-life is no where near over.  Not at all.  Everything is how you look at it.  And that's no pun intended here!  I spent 6 months of my life following my diagnosis of Peyronies Disease FREAKING OUT, having panic attacks, spending tons of time generally depressed, not going out, not seeing friends, scaring the crap out of my parents (I wouldn't tell them what was wrong), and basically being a lunatic nutjob, spending all available time researching Peyronies Disease and what I could do about it.  I was basically at rock bottom.  I thought I'd never meet anyone, never have kids, never have sex again in my life.  But then I did something that helped - I started doing something about it.  I joined this forum, started taking crazy supplements (which, for me, didn't help), and went to see an expert urologist. This didn't cure anything - I still have it, but it helped because it made me feel like I was at least doing something about it.  If it didn't give me hope for a cure, it gave me hope that I could feel better about the whole thing, that maybe what I was doing was stopping any progression of the disease, and that I had a resource to whatever was "next" in treatment of Peyronies Disease.

The other thing I have to say is that girls don't stare at penises all day long.  I know that's hard to believe being a Peyronies Disease person such as yourself (and don't tell me you haven't looked at it more now than you ever have in your entire life), it's true!  Any flaw you have is going to be magnified to you, but to a girl believe me that they won't notice it NEARLY AS MUCH as you do. 

As for meeting girls, it's what these guys say - it's all confidence.  A lot of that will come with time as you get used to having Peyronies Disease, to it just being another part of your life.  If you can still have an erection, sex is still probably a possibility.  And girls aren't as vapid as some of them may seem - there are a lot of nice, normal, caring women out there who are not only going to accept you for who you are, they aren't going to care nearly as much as you do.  It's true.  Women are probably more worried about their own bodies than yours.  Remember, they get bombarded with imagery constantly that makes them try to measure up to some impossible Hollywood standard.  (Imagine if we had the same for penises.  A penis on the cover of every People magazine - ooh, look how straight it is!  Never.)

Anyways, hang in there - you will get through this and I can say from experience that the mental side of this gets a lot better as you get a chance to absorb it all.  The great thing too is that you have a whole cadre of guys on this board who are here to help.

Best,
dcaptain

I'm a 21 year old male who believes he has peyronie's (I say believes cause I've never been diagnosed by a Urologist).

When lying down, the little guy used to point towards the ceiling when erect, now he points at my head... Tilting it far forwards causes pain. My erection still becomes rock hard, but is incredibly inflexible, pushing it down when standing up becomes painful.

I have the hourglass shape when flaccid, particularly after bouts of hard exercise... Its not always prevalent, but it can definitley be seen at times.

I think this disorder came from when I was younger and was depressed and would jerk it endlessly thinking I would never have sex. 21 years old and still a virgin.

On the real, I go to a VERY superficial college, probably one of the most stereotypical in North America.  I don't want to not be able to perform in the moment because my penis causes me or her pain... Especially because It will be all over campus 2 hours later and I will hear about it for the rest of my life.

I wish these women weren't attracted to me, because the fact that I want them but can't have them because of this mental block is making me so depressed its unbelievable.

And you know what? It's easy to say "you need to find a nice girl who will wait and talk about it with you" blah blah blah, but it's just not realistic. I'm an amateur fighter so I'm in great shape, and apparently I am good-looking, so women throw themselves at me... When I don't try to bang them right away, or I try to tell them I've never had sex before, they think I'm full of crap and don't want any part of me... When I was a kid I always wanted girls to like me, and now that they do, and I can't take advantage of it is the worst. It's actually killing me inside.

Comments? Suggestions? Anything?

"Pointing to your head" sounds normal to me.  Bite the bullet and pull the trigger.  (I had to do it.)  Catch one of these girls that throw themselves at you.  I think anyone who pushes down would experience pain.  But, see a urologist to be sure.

You and Howcanthisbe should correspond (similar age and situation).

Rico is a professional fighter, I believe.

You are in good company

To the best of my knowledge, the plaque (nodule ,knot, etc.) is the defining symptom for Peyronies Disease.  Hourglass shape, hinging, bending and ED are secondary symptoms.  No plaque;  No Peyronies Disease.
In previous discussions, I don't think we've acknowledged this.

If this is wrong, let me know,

Definitions of peyronie's disease on the Web:

A plaque, or hard lump, that forms on the erection tissue of the penis. The plaque often begins as an inflammation that may develop into a fibrous tissue.
http://medicalcenter.osu.edu/patientcare/healthinformation/glossary/p.cfm

A deposit of scar tissue or plaque in the erectile tissue in the penis, sometimes causing painful and curved erections.
www.malehealth.com/HTML/B9_print.html

Curvature of the penis, usually during erection, caused by plaque (hardened or calcified tissues).
www.erection-disfunction.biz/glossary.html

Peyronie's disease is a rare connective tissue disorder involving the growth of fibrous plaques in the soft tissue of the penis affecting as much as 1% of men. The exact cause is not known, although it is thought to be caused by injury to the internal cavity of the penis, which results in bleeding and later scar tissue formation at the tunica albuginea of the corpora cavernosa. It may cause pain, cord-like lesions, or abnormal curvature of the penis when erect. ...
http://en.wikipedia.org/wiki/Peyronie's_disease

Source:  http://www.google.com/search?hl=en&lr=&safe=off&rls=GGLG,GGLG:2005-42,GGLG:en&oi=definer&q=define:peyronie%27s+disease&defl=en

I would argue that a *change* in the shape of the penis ina fully grown man is relatd to Peyronies Disease pathology until proven otherwise. Secondly, the finding of a "placque" is not so easy. Many men have reported here that doctors have palpated their penis only to pronounce it "fine" when the patient still had a bent penis!

The curving upwards sounds to me like it *may* be related to the development of fibrotic changes ("placque" if you must...) on the dorsum of the penis, right near the base. That might account for a bit of an effect of limiting downward mobility - it sure sounds like his penis is newly tethered at the dorsal base. The new-found pain is also quite concerning to him, I am sure. The hourglass deformity that "fills out" with a full erection is also described by others here. I, for instance, have a dent on the left side that causes an about 20 degree deviation - until I am fully erect upon which it disappears. Thi is new within the last three months and came after a sudden bend during intercourse.

All in all, I do believe that his symptoms are strongly suggestive of early Peyronies Disease, and he is smart to start looking for support and help now.

RoyRogers (if that really *is* your name...)(insert some joke about "Trigger" here), you are in the right place. Here you will find out that you can do something about this. And although it is easy for me to say "find a quality woman" now, from my perspective, when I was twenty, ANY woman seemed magical enough to warrant having sex with - if she was willing, I became willing.

This - so far - does not change the equation too much for you. You may find that anti-inflammatory drugs like advil can help reduce the pain, and may even block some of the changes of Peyronies Disease (my speculation based on personal experience) - and that may make intercourse bearable (if it hurts now). Pointing up is not a bad thing, unless she wants it to be pointing South during sex. As you describe it, I would be willing to bet that a woman would not think it was "abnormal" if she saw it hard.

Finally, if the women around you are shallow, then look for other women. Go to bookstores, join a White water rafting club or hiking club, volunteer at a homeless shelter, join the board of trustees for a local art society... I dunno.. think about what YOU want in your life when it comes to a woman and go where women like that are. Than I bet things will fall into place.

FWIW, I do not know of any men who met the woman of their dreams at a frat party, dance club, or bar. But in a campus/college organization? You bet. How about a health and fitness group at the campus?

Tim

Tim:

Right on! Very good advice.

BTW, I personally know a guy whose name is really Roy Rogers. Also, we have a Billy Graham and a Gene Autrey in our local church.

Regards, Old Man

If thats your real name, I apologize for the cracks with the name.  I always loved the famous one.

Basically what you are saying, Tim, is that the fibrotic change is there.  It is just hard to find.

I remember when I was at my sexual peek.  An erection was straight up, standing or lying.  Sex was not a problem.  After sex, trying to urinate in the toilet, was an adventure.  Pushing down to aim at the toilet hurt.  ;)  I think everyone (at least the guys, sorry ladies) can relate.

Roy,  I hope you are encouraged to seek help from a doctor.  Just don't jump to conclusions.  Where it is possible you have Peyronie's, it is not a given by any means.  See a doctor, first.  If, then, you have it, the world has not ended.  If you have an erection and only a minor curve, you can still have sex.

There is a webpage called "The Penis Website".  I am not linking to it because it is borderline porn (at least the ads).  It does have pictures of normal erections.  Many point straight up. Many curve like a banana.  Some have dings and bumps and ridges.  Normal is a range of size, shape and curve.  The site also mentions they get emails from guys thinking their penis is too hard.

I only recommend this page because us guys don't have a large frame of reference about what is normal.  (Neither do college females for that matter.)  This is a discreet way to assess what is normal or not.

Where it is good to investigate possibilities.  Without a diagnosis, don't get worked up.

my own experience is that the psychological component of the disease was the crippler - it had a very profound impact on my psychology for a couple of years.  i had no idea how to deal with it psychologically.  I had a lot of prejudices about what the impact would be on me in the future and how others might take it - most of which proved dead wrong.  The experience has actually proved a gift to me as it allowed me to move onto a different orientation with sexual relations.  Actually i'm sure i've become a better 'lover' becuase of it, as that role of swashbuckling pirate and sport f'^+'ing gymnastics, is no longer an option.  It forced me to think about the other, and building the erotic nature of the interactions, etc.   

my last girlfriend of several years didn't mind, in fact her response after my informing me of the issue was "if we never have intercouse it is ok with me."   Now this is a gal that i've experienced the very best loving making wtih.  That is not to say that it would be acceptable to others.   she actually loved that it bent up, as her lying on her back with her head tilted back over the bed allowed the ol' elbow joint to slip right down her throat.  She could suck a golf ball through 20 feet of garden hose.

And you've got a tongue, and fingers so use them. caress, hold, bit the back of their neck.   If you still think that the ol in-out, in-out is all there is to sex then peyronies or not, your never gonna really satisfy your partner.

Resolve not to F^@% on the first date or second, once there is a relationship, then when making out or lying on the couch watching TV or whatever, have a discussion that goes like this"

    "i want to talk about something with you.  And i don't want you to take this wrong or think that i'm implying anything by it, but it may come up later if we continue seeing each other.  And it's really akward for me to talk about, but for the last decade and half i've been dealing with a condition that causes scar tissue to developed on the interior of my penis and affects my erections and quality of love making to some extent.  it's fairly uncommon, though Clinton was accused by Lewinsky of having the condition.  It's kinda analagous to one of those long balloons and before inflating it you put some tape on it at certain points.  then when you try to blow it up it doesn't streatch at the points where the tape is and causes it to bend or change shape.  It bends up and to the left and doesn't have as much turger pressure where the bends are.  After so many years the scar tissue has affected almost the entire length of the penis.  it's kinda my own crookeder-than-a-politician.  It used to hurt badly when it first developed, and today it limits some positions and the vigourness of intercouse - so if we go further, there's never gonna be any "sport' f'^+'ing.  It's never really been an issue to other partners, though i've had a difficult time dealing with it personally and the change at times, especially early on.  It's nothing that you can catch . . . . you won't develop a bent hoo-hoo.  They are not sure why some men get it, and they continue to work on cures but nothing yet.  I just wanted you to know what's up should our relationship go further.  Okay?  Do you have any questions about it?  Is there any awkward issue that you want to discuss with me and that i should know about?"

I've had to have the discussion many times. . . . i'm always surprised by the non-issue that it is.

What is really left is for me to "accept" what it is, the change, the limitations.  My biggest problem about it continues to be how i think about it.  This doesn't mean that you don't keep your eye out for developments in treatments, but you get out of being emotional tied to the results to said treatments or the status of the Peyronies. 

I cannot more highly recommend The Sedona Method to help work through your resistance to it.   You can generally pick you the book in the library and scan though it.   It is basically a series of 4 questions that you ask of yourself and then answer yes or no to. - helps to get unstuck.  You've got to surrender the self-pity, and trying to control others reactions.   There is nothing you can do to effect others reactions . . . either it is going to be ok or not.  . . if not, so what.   If you don't have resistance to the condition, then there are no problems with it.

Some good points, Naples. Thanks for contributing. 

I changed my profile picture in your honor.  I think we have this, as well as Peyronies Disease in common :).

Liam

Gentleman, I apologize for being away, but have been trying to deal with this psychological component of this cursed "condition" Have been throwing almost everything at it.Supplements, TV, VED, infrared lamp therapy, etc. I finally came to the realization that life must go on. I would like to share some Very good news. Even at 47 yrs of age, I have finally realized that a woman can be pleased and pleasured in so many ways. I sought to read and gain as much knowledge as possible in this area as well as the romance of a new relationship. Alot of men continue to believe that the only way to please a woman is through the penile penetration into her vagina. I am here today to convey that NOTHING could be further from the truth. After yet another divorce, stints in the Emergency room ,a Hernia surgery gone wrong, as well as the emotional distress that this has caused, I have finally gone through the process of healing emotionally,spiritually and physically. I prayed for strength and the wisdom to carry this through and I know it will be a struggle, but I have met the most wonderful woman I only thought was possible in a dream. It's very interesting on how we found each other through the internet. We actually went to school together in High school 30 yrs ago. It seems like I've known her all my life and even possibly in another time if that's possible. From the very first moment I saw her I knew she was the one that I've waited for all my life. We are connecting on such a Deep emotional level that I feel only a small percentage of couples can be blessed with.I wonder who I would be had I not gotten this "condition".It has allowed and forced me to explore a part of me I never knew existed.I now know that if men could just somehow find a way to the realization that there is much more to romance and intimacy with a woman than penile penetration, there woould be alot less divorce and more happiness in this world of ours. I got up the courage to share this with her and was slightly shocked and at the same time relieved to know that she understood with compassion and that she would support me in this endeaver and be there in anyway for me.I am looking forward to the rest of my life with this angel for this is truly my destiny. Alas, I would like to share something as well with you men that has made all the difference in our romance that I feel will continue for all of eternity. Treat your woman with appreciation. Try and achieve that Deep emotional connection with her that so  many man fail at. Let her know on a Daily basis that she is the most Beautiful and sexiest woman in the world to you. And last, Explore all levels of intimacy in the Bedroom with her. I would like to Thank you men, Nay Brothers, for being there in my time of need. Zigwyth out!

   Zig, I can't tell ya how happy I am reading your post! Blessings to you both!
   That post should be required reading.
   

Zig, what an uplifting story. I too wish you and your honey the very best. My prayers will be with you. It is so nice to read happy and positive stories. Life is not over because we have peyronies, you are living proof. I too have learned much more about myself. I hope that one day I will find the joy and happiness that you have. Thank you for sharing with us. Peace.......Out!      Blink

Roy, yea it does suck to have this at such a young age. I just turned 23 and think I have Peyronies Disease. I got it from some blood pressure meds my crappy doc put me on without informing me of any possible sexual side effects. Anyways dealing with this sucks. I too am in college. The whole not meeting girls at bars thing is right. I met 2 and both turned out bad. The first was at a frat party at she unzipped my pants to see it only like half erect, the second was sex and it wasnt fully erect. Although both of these times I had 25 plus beers each night so that effected my erection problem. Anyways I dont know if thats related to Peyronies Disease or beer. The point is dont look for girls at bars and all because they are all shallow little sluts. Anyways right now im like you, my erections are still hard and all. I dont think a girl would notice my problem as I have a slight bend and a dent which is getting bigger. Anyways dealing with this is horrible, but I have faith I will heal over time since im so young. I havent even really worried about it in the last week, I was amazingly depressed at first which is so unlike me because nothing can bring me down ever. Anyways im feeling a little down today because I noticed that my dent is growing and I had a slight pain today. Im just gonna forget about it and find a girlfriend and have sex at least once a day. I really think man having good hard erections without you phyiscally inducing it will help. Always remember that VED seems to be a popular treatment in here if worse comes to worse. I know if my erection gets bad or deformed im going straight to VED. Like all the others are saying in here, find a good girlfriend that wont mind if your erections are a little softer or bent. Thats what I got to do fast. Anyways hope I helped you, dont give up hope as things can get better or even go back to near normal. If you can still get a hard erection then your good right now if you stablize. Anyways good luck man.

Your the only dude I know who can drink 25 beers in a night and live to talk about it the next day!  ;)

 ;D :) ;) ::) :-*

Erection problems might be related to 25+ beers.  DO YA THINK?

QuoteThe point is dont look for girls at bars and all because they are all shallow little sluts.

Except the ones that go just because they like to dance.  And there are some deep ones  :o

howcanthisbe

Since you appear to have such a low opinion of women, then perhaps we (women) are better off that you get drunk and can't  bring out the Louisville Slugger that you were so accustomed to in high school.
Do you not read the posts here that talk about relationships and what is important?
Search out these posts and read them...twice. Calm down/slow down and try to understand that what these posts say about the male/female relationships are true.
If you truly want to learn how to deepen relationships with women, I suggest you start with a resolution to reduce the beer consumption form 25  to 2.
I don't mean to sound hurtful, but with all due respects... damn.

HCTB,

While I do think you were a bit over the top buddy, I can relate and verfiy that some of what you say about "shallow little sluts," is true.  In our age group there does seem to be many more shallow women who are more interested in money and looks, however this does go both ways, and perhaps it was even us males who made the females that way.  I think it can be harder for a baby boomer or older individual to understand our age group and the "new social order," than one thinks. 

Caring is right on.  On the whole, men are far more "slutty" than women. 

HCTB.Perhaps you didn't read my post in this section from yesterday?? I can't imagine how I would have felt at your age with this crap. So therefore I feel compassion for you and what you're going through.However, I urge you to read my post. There are many young ladies out there that would love to find a decent young man who has virtues of honesty, loyalty, appreciation, passion for romance, sense of humor, compassion for your fellow man/woman, etc. My suggestion would be to take a hard look at yourself and ask if there is anything you can do to be a better man. I guarantee you will be much more happier with whom you shall become. Also, the sooner you quit letting the "little head" be in control, the better. Just my thoughts. Zig

I think Caring made a good point and made it well.  In fact, I was thinking the same thing when reading HCTB's post but it was late and I did not take time to post.  We are fortunate to have such women here.

I have lived long enough and carefully observed enough to know that you find what you look for in people and in life.  You can go to a city and find culture, fine museums, great food, and great company.  You can also find drugs, prostitution, gangs, and squalor. In law enforcement I  have seen this both on the street and in prisons.  You can do your time and get out, or hang with an element that will plunge you into prison violence and a degraded life.

I teach at a 4 year college.  My wife teaches older teenage girls at church.  I see females in their teens and early 20's that are as grounded as any generation has ever produced. Their standards are absolutely uncompromising and their goal it to sort through the crud and find an equally uncompromising eternal companion.  You will never meet these women at a mindless beer bash.  To one that hangs out bars and frat parties, they just don't exist.  They are invisible.  You do not qualify as someone they would talk too because you are being shallow.  You can not expect a girl to unzip your pants at a party and pull out a simi-erect penis and say, "But I love you for who your are inside" ???  If you are wasted letting strange girls unzip your pants then you are acting shallow and are a shallow-Chick magnet.  If a woman lays down spread eagle and nude at a frat part, she will only meet shallow men in the line that forms.  For her to then conclude all men in this generation are shallow, would only show her immaturity at understanding life and how it works.

If I were single, I would avoid such places when looking for people of substance.   I would strike up conversations with women at grocery stores, museums, church activities, and community volunteer projects or political rallies (that I agreed with).  I would then conclude what an inspiration it is to find that there are so many compassionate women of substance.  Life being what it is, many will shrug this little bit of wisdom off as the babblings of some old man caught in a generational warp.  I understand and accept that.  I also understand that in a decade or two, they will look back and wish they had done it differently.  The payback unfortunately comes when everything they have learned gets shrugged off by the generation behind them that just seem to see the modern generation a bit more clearly.

The endless cycle continues except for those few that can learn from the lessons of others.

Rest assured, there was an unlimited supply of shallow girls when I was a teen.  I am sure Old Man would say the same.  When we acted the part, I am sure we both met many of them.

Note to all:

I won't bore the forum with my past history of riotous living before being converted into a life as a Christian. Being raised on a farm in the 1930s in a very rural area, sex education for us boys was at the hands of observing the farm animals in their reproductive life. So, I won't go there. Our parents were very prudish about sex and never mentioned the subject.

After leaving the farm, entering the U.S. Navy, and suddenly was thrust into the world of drinking, sex and other lewd worldy things, I soon became a part of it. This continued for years until I met the "right" person for me. Since that time we have shared 43 wonderful years of married life, raised three children and now have 8 grand children. (Note: I am over 13 years older than my wife which has caused no problems in our marriage, so age does not always enter into the equation.)

Bottom line, one can make what they want to of their life. But, they must make the effort to do that. There is a saying that says: Faith without works becomes void and empty.

The above is just MHO about the philosophy of life as a Christian. So, be aware that aa person must make his own life.

Regards to all, Old Man

PS: Yes Hawk, I agree with your post 110%.

Quoteshe will only meet shallow men in the line that forms.

Well said!!!!  Most of the time you find what you are looking for.


Caring,

"Damn" fine post. :)

Although I think that Old Man has said it well, I would like to add a few points here.

We who are Christians view marriage as a commitment, rather than as a means of simply fullfilling our carnal lusts.  That certainly leaves plenty of room for romance and physical pleasure, but those are not the driving issues.  It is commitment to each other on a deep level, in service to Christ, that drives our marriages and gives them stability.  Having said that, I think that actually most women are more committed to their husbands than the other way around.  God made women with some powerful maternal instincts that extend even to us as husbands.  When it comes to sexual issues, most women are far more understanding than most men are.  In my case, my wife has gone through everything from hysterectomy to mastectomy and that has not detracted from our sexual relationship one whit.  But I can tell you of too many cases where beautiful women have been abruptly dumped by their brutal mates over just those issues.  Those people who receive the most fullfillment from their sexual relationships know that that fullfillment is not dependent on physical perfection.  Those who find physical imperfections sexually troubling with go through life jumping from one relationship to another and never finding satisfaction, because sexual relationships in and of themselves do not provide a stable foundation for living.  I am thankful for a wonderful marriage, a caring wife and children, and caring doctors who have blessed my life beyond what I could ever have immagined.  And I wish the same for all of you.

- George

Wow George,  You could not have said that any better. 

The relationship between a man and a women was meant to be fulfilling and supportive on so many levels.  Sexual pleasure was far down on that list.  It so unfortunate that many put it at the top and keep it there not even entertaining the thought that there is so much more to be had between each other.

I hope that for you young guys out there searching for a mate, that you try to keep that concept in mind when searching for someone to give your heart to for if you base a relationship on the physical aspect of compatatbility, you will ultimately be let down in the end. Those are the components of a relationship that are the least important when the rubber meets the road and hard times meet you (as you can be sure that they will).

im not labeling girls as shallow little sluts. Im just telling you what kind of girls your gonna meet at bars that wanna have a one night stand. Most of them are sluts that want sex because they are in the mood etc. So all I was saying is those type of girls expect a hard erection and might be mean about it when they see your problem. I was just trying to tell Roy to avoid those types in fear he might get some nasty feedback from those type of girls. ComeBackid, you have never seen a guy drink 25 beers in one night and live? I know people who can drink alot more then 25 beers in one night and live to tell about it the next day,lol. Anyways sorry if it sounded like im labeling all girls as shallow sluts because im not. I just said he needs to try to meet some decent girls and yes there are some at the bars but I think there are more at church groups, volunteer places, work etc. I just wanted to say avoid the one night stand type girls because like 70% of them can be mean about this kind of stuff. I know im sterotyping and alot can be nice. Anyways sorry again..... its just from my experience. I had one girl laugh at me and leave, and the other I never heard back from her.

Thanks for clearing that up HCTB.  I would hate to think that you have that low of an opinion of women in general.    There are plenty of us out here that care more about the man's intelligence, sense of humor, compassion, gentleness, sincerity, spiritual life, etc...  than what is in his pants.   The challenge is to find them.  The same challenge is present for women in that case.   I am sure the right gal is out there for each and every one of you out looking for that perfect mate.  You just need to be patient and aware of where you are and how you present yourself in order to catch their eye.  Take it slow and be real with them and you will be surprised how far it will take you.

HCTB,

I've partied with the craziest of crazy people that would be camped out in front of Beaver Stadium drinking beers at 7am, when you say you are drinking 25 in a night, I assume you mean you go out around 10pm or 11pm and come back at like 4am and you've drank 25 in that time period, averaging about 4 or 5 per hour, if you do this more than once a week, this might be why you have erection problems!  Not to say the peyronies isn't causing them, but I would try to lay off the alcohol as much as possible, binge drinking certainly will not help anything at all.  You are right in saying that there are some nice girls out at clubs and bars, but I'd have to say from personal experience the slight majority of the girls out there are kind of shallow, not to mention the slight majority of men out there are kind of shallow to. Do you honestly just go out and meet a girl and try to have a one night stand with her that much? You should focus more on trying to please her and sensual touching with her, don't go straight to sex.

ComeBackid

Very good advise Christine,,,and the others too. A good place to find a wife is in church..I met my wife at church youth camp, she was 13yrs old and i was 15yrs..That was 45 yrs ago, we just had our 42nd anniv...Raised 3 children and a lot of others foster and day care, a average of 9 to 12 children in home all the time for a few years.Now we have 8 grandchildren, almost all grown and on their own....At 15yrs old i ask God for a girl friend who would be a good wife and he answered my request...When i came down with this peyronies disease she didn't walk out on me but helped me thru it...I know there are still a lot of good women out there and when you find one a man should go out of his way to treat them right, and always remember your marriage vows...Treat a woman good and she will take care of you...Marriage is a sacred thing not to be taken lightly,,,you can tell i love my wife more now than when we got married 42 yrs ago...If you want a good woman then you have to look in the right places...

Thats just my 2 cents worth,,blessings to all of you.......kimo

My female cousin had some styrofoam cups with S L U T S printed on them.

Southern  Ladies  Under  Temendous  Stress.

HCTB,
On a more serious note, I think worrying that one day you may have a curve and one day you may not be able to have sex is unhealthy.  Counseling is a wonderful profession that may help you cope with your stress and conern about your health.  It could also help you tackle binge drinking.

HCTB,

I too think you should seek a counselor, mainly one that is willing to listen, not just prescribe you pills, be very weary of those doctors.  Are you on ALC?  I've read somewhere in the literature that it can help people with the urge to drink so often, this will be something that will be hard to get done by quiting cold turkey, but rather slowly taking yourself off yoru alcohol binges.  I would try to cut down one night a week to start, do that for a month, then cut down another night.  I know this disease can really take an emotional toll on you, just hang in there and keep fighting until you beat this crap!

ComeBackid

hey thanks all for understanding. Yes ComeBackid I do drink 25 beers from say 6pm to 6 am.... thats what I call one night but alot of times I do it from 10 pm to 2 am, so yea sometimes I get very very sick. Im not trying to obsess over this, im going to let it heal. I firmly believe I will heal one day over time..... im too young to have this forever or it will get better. Anyways im trying to cut down on drinking, thanks alot for the positive support everyone as its great to have this forum to talk about this.

BTW,

Did you ever see a urologist?  What did he say?

Liam

That is what we are here for HCTB.  Support and encouragment are the most important reason for this forum altogether.  I just pray that you heed some of the comments that were given to you and seek the professional help that is obviously needed for your emotional as well as your physical needs.  Always remember that if you need a sounding board that we are always here to listen!!

God Bless.   Chris

HCTB, I agree with the rest here that you need to get help on the drinking issue.  The amount you are consuming is just hugely too much for both your physical and mental health.  There are a number of different avenues of obtaining that help as a number of us have suggested.  Some of us here have found an immense degree of help and healing just from reading the Bible and hearing the preaching of its message.  We have come to the point of confessing to God that we cannot adequately manage our lives and we have cried out to him for help and he has answered that plea.  We have come to the understanding that the root of the problem is us and we need to hand our lives over to God.  It can be that simple.  On the other hand, not all can accept that understanding.  So, of course, there are a number of different levels of professional counseling available that provides a great deal of help to many.  Your personal physician can no doubt help you to sort out things on that level.  And of course, there are a number of programs, from 12 step to AA, that offer other forms of help for folks like you.  But what you really need to understand here, is that unless you get some form of external help for your problem, you are at risk for problems that willl make peyronies seem like a cakewalk.  There is a lot of REALLY bad stuff out there just waiting for someone practicing your lifestyle.  We really don't want to see something like that happen to you.  You just have too much to offer to those around you for your life to be cut short early by a series of bad choices.  So we are praying that you will do the right thing here and find the help you need.

- George

thanks all. I will try to cut my drinking down. I never went to see a Uro but im pretty much certain I have Peyronies Disease because nothing else can make dents from what I understand. Anyways I dont wanna get into that,lol. I will see a uro once I get some money up, I know the uro cant help me anymore then this place if I do have Peyronies Disease. Anyways im off to a party and I promise I wont drink over 12 beers tonight,lol. Have a great night everyone, see ya

Do you guys actually think there is any point in seeing a urologist about it?

I mean, he isn't going to be able to do anything to help me is he?

Yes, see a urologist.  Your symptoms are not overwhelmingly screaming Peyronies Disease.  Telling you what you have for sure is a big help.  What you describe as hourglass may be different than what I call hourglass.  But, a doctor has a better perspective.

This board is not here, in any way, to discourage you seeing a urologist.  If anything, the board should encourage you to communicate with your urologist.

Sometimes we get carried away.  But, every one of the regular participants have been diagnosed, at least.

Its your penis and your decision.  Don't gamble.

Good Luck!

Liam

"I think it can be harder for a baby boomer or older individual to understand our age group and the "new social order," than one thinks."

ComeBackid
I have tried to ignore what you said but it has weighed on my mind and I feel I must address it. I will state this, and forevermore be quiet about it.

While I may be just an aging hippy, things are not so different now than they have ever been. Review history and you will see that Sex has always been sex, respect has always been respect.
Todays lost youth are the result of my generations desire for freedoms which we thought the world had never been seen before. For that, I take partial responsibility. Free love, answer to no one, defy authority....
As a generation, we took full liberties in the free love thing, orgies, drugs, drunk beyond knowledge for days, ...took our lumps in the STD's  and paid the price. Granted we didn't have AIDS to deal with, but we had plenty of centuries old STD's and the consequences can be just as devastating.
There is no  "new social order", it's just.. same old thing, different day.
We understand completely and better than you do, since we are the ones who put your age group on that path. We have already done it, and learned it doesn't work.


"and perhaps it was even us males who made the females that way"

Yes, I think you are correct on this one. Some man in a woman's life caused her to be the cheap acting person she may be today. Some man totally dis-respected her in some way. That man may not have been the one who De-flowered her, but he destroyed her just the same. However, it is  man's responsibility to value, respect and love  her for what God intended her to be. If men treated women with respect, you would see a big difference in our reactions to your treatment.
Oh how I wish that women and men would realize the damage they do to each other when they use one another for personal selfish desires.

I'd highly (highly!) recommend the book Grace and Grit to anyone suffering from Peyronies.  It's the story of a husband and wife and their five-year ordeal with cancer.  I think it could be helpful to those here for the following reasons:

1.  It covers a lot on the mind-body connection of illness and explores a lot of different ways for attacking disease.

2.  The psychological aspects of illness are discussed in depth.  Very good for those of us dealing with that aspect of Peyronies Disease.

3.  It'll help to put things in perspective.  Even though Peyronies Disease can wreak much havoc on our lives for most of us it's not as severe as deal with late-stage cancer.  This book is a reminder of that.

Anyway, just thought I'd offer the suggestion as it has been very helpful for me!

Thanks,

I'm going to check it out (from the library).


Liam

BTW, should we picture Frank or George?  :)

Since I haven't seen the original yet I guess I'll have to go with George. :)

Welcome my friend, Paul. Guys, even though most of you know now I have met a wonderful woman who is fighting this battle with me, I still feel isolated, angry, bitter and depressed from time to time about this. Just wanted to say thank you guys, especially Hawk for being there. Just had to say that.
Zig

Quote from: BLBC on August 16, 2006, 07:29:20 PM
Zig it is beyond me why any man, once he accepts he has Peyronies Disease would be embarrassed to talk about Peyronies Disease. I suppose I can only write it off to hormones. I know that if women were to have a similar disease they would be vocal and demanding a resolution. Trust me they would! Personally I do not see Peyronies Disease as a "man's" disease it effects me TOO, so by gawsh (I really cleaned THAT up) I am doing everything I can think of to get the medical – pharmaceutical community to open their eyes about Peyronies Disease!   

I see why my wife was pissed off at me tonight......

Both sexes see it so differently.....

Mr.BLBC

Sorry your wife was pissed off. The fact of the matter is, I feel that although our women can be very supportive, and I do appreciate them, my mother could probably relate the best to this. She lost both breasts to cancer and didn't feel like a complete woman ever again, even though my Dad told her it didn't matter to him. All I'm simply asking, is for women and others who can't "understand" the emotional trauma behind Peyronies Disease, to be a little more compassionate.Simple and to the point.
Zig The Twig

The way men are. The subject of multiple quadzillion internet jokes, cartoons and the front cover subject on countless womens magazines (10 secrets he wish you knew about men, The things he REALLY wants you to do, What he REALLY wants, What he THINKS but will never tell you,, yada yada yada yada.....). The titles literally scream out the dissemination of mens deep, dark hidden secrets, wishes and thoughts! Result: magazine sales in the millions. (FYI to women: the articles are usually way off base and don't represent what lots of us fellas really think).
    Women are much more likely to talk about urological issues, sexuality and related below the belt subjects than men are. Men think about it; women talk about it. I used to wonder why some ladies rooms have the "powder" room just inside the door with sofas and chairs; I think I get it now: they want to chat a bit. I used to wonder why women would go to the restroom in pairs; they wanted to chat a bit. There are no powder rooms in mens rooms because there is nothing to say in there! There are rules... rarely, if ever, will you see two men head to the restroom together unless by pure chance. And while in the restroom, no eye contact is made between men usually; we're in there for one thing and one thing only; ya wanna talk? Step out of the bathroom and we'll talk your leg off! But the bathroom is the inner sanctum, the room of biological functions only. Oh, best friends might make a weather comment or two in there, but little else. Another rule: while standing there, it's eyes front and center, not looking around. Attend to ones business quietly then exit. Plain and simple.
    Women are much more likely to talk about urological issues; you generally won't find men talking about healthy or problem peni, testes, urethras and associated parts. The consensus of some articles I've brushed over lay blame on the fragile male ego. If there is a health problem there is hesitation from many men to go to the doctor. If there is a urological problem (Peyronies Disease, ED, etc.) then there is the additional threat of discovering a condition that could attack the patients manliness. I think a lot of us fellas judge our aging with sexuality; if we are still functioning sexually then our aging has maybe stopped or at least slowed down. As nuts as that may sound to some, it's the way a lot of us think. It is an extension of behavior from childhood: Little boy cuts a finger scenario. Women nearby may inspect the injured digit and may suggest a trip to town and stitches to ensure proper healing. Men nearby may suggest cleaning it up and application of a plastic bandage with the final statement "There now... he'll be good as new... it's nothing." Doctor Avoidance 101. Do anything possible to patch up and go on without heading to an MD. If there is any way possible to fix something with a bandage or pill, we'll take that any day over heading to the doctor. We are men: we must provide; must work; must kill beasts and bring them home for dinner; how can I do this if I'm tied up at the doctors office and he or she puts me down a day or two for treatment? Solution: bandage and hydrogen pyroxide, end of problem.
    We hear the urologist is our friend; we hear that uros have seen and probed it all; we've heard that there is nothing they haven't seen before, and that ours is just like the thousands they've seen. So be it. We acknowledge that; but we still reserve the right to not want to go  ;D.
    Zillions of years of evolution and male training have us petrified of the thought of talking to our uros, girlfriends, wives and S.O's about Peyronies Disease, Erectile Dysfunction, enlarged prostates and countless other conditions. As a man, all I can say is... we're working on it. We have a message board here for sounding off. Step one: typing our thoughts. Step two: communicate verbally! The guys on this board have paused the fragile male ego destruction process and are active in communication about this incredibly mystifying Peyronies mess. The women on this board are doing exactly what us fellas are learning to do: talking about it and getting it out of the closet. Hats off to all of you here who contribute so much to breaking the ice on this mind numbing disease.
     So for now... men, start talking to your significant other. It won't hurt a bit. And it will heal more than any bandage could.
     And men if you haven't already, get thee to a urologist for an evaluation.
     You'll be in good hands.
     Pun intended.

Amazing incite Angus.
The only thing you left out is cleaning that cut with spit. That's faster and worked just as well until Mom could get you home for a better fix. You ( boys) always winced  then too, knowing something stronger was about to be unleashed on your person. Some things never change. Mom's, wives, girlfriends... we are always after you for one thing or another. Teehee.

I see women are just as hard to figure out as men! Never understood the reason women go to the restroom in pairs myself..and I'm a female  ;).

I see peyronies the same way I see any other disease that has an impact on the well bieng of a couples intimate life. Intimacy is a personal connection none of us ever thinks about unless it's being threatened. When something threatens our most personal space, both partners are affected. Clearly, the one with the condition suffers additionally but both suffer together. Sometimes it is hard to seperate the two.

Women are not fixers, we're problems solvers. Men are fixers. Men want things to work right when their done..like a car engine. Our idea of solving the problem is to go to one who can fix what's broken. Women know not everything can be solved but can it be better? We sure seek to find out; sometimes going a little too far, becoming a little too anxious. So many emotions merge and being that women are problem solvers I think we try to solve the one that appears the most easily solved...intimacy. Most women want the connection maintained with our men because we love our guys! Emotions will sometimes clash and we need to take a step back to regroup. Thanks for the reminder!

I will be the first to admit women are different. Our lives begin to alter with that first conception. We're programmed to accept change more readily than men are
under most conditons. Not all though. Our body changes earlier and more acutely in life so we adapt and change with it. Men understand this too. Men know very early in life that women change. It's expected although not clearly understood ;)
We were never given any advanced warning that a man's body might change!
That part got left out of my health classes...or I fell asleep and missed it. It's been one big learning curve (no pun intended) for me at least. Falls under the momma never told me category.

I am learning a lot just by listening to you men discuss the in's and out's of dealing with the effects of having peyronies. Thanks for sharing.  Swimfly

I see an issue as I read posts and PM's as well as from decades of personal conversations.  It has been on my mind for several weeks and i just want to toss it out since we are discussing differences in the sexes and how that sometimes manifests with Peyronies Disease.

I an sure women tend more to see intimacy and sex as seperate issues, but that line is very blurred, if it even exists for many men.  This is of course a very general statement that does not apply to all.  I have known women that were much more highly sexed than their mate, wanted sex, and were outspoken about it.  No quiet talk and hug in the moonlight was going to fill the demand.

I do think that most men would say that hugging, kissing, or a slow embracing walks  naturally progress to sex.  All our lives men have made it our sole focus to advance these activities to what we see as completion.  In fact, men often see these as more subtle forms of foreplay.  That does not mean men don't enjoy walks or hugs, we do.  However, if a man is at the stage that he cannot bear sex because of physical or psychological pain, then intimacy is naturally avoided because of the instinct to finess those activities to sex.  Part of the age old mating drive includes persuing intimate settings BECAUSE they break down inhibitions to what naturally follows.  If women are not keenly aware of that, you can be sure that men are.  I could compare it to trying to avoid eating, yet going to a restaraunt, laying a napkin over your knee, and reading the menu.  If you are trying to avoid dining, you would avoid the thrings that  precede and naturally conclude with dining.

I think it is an uphill battle to expect intimacy out of a man trying to avoid sex.  Rather, the reasons for avoidance must be addressed, whether those reasons are physical or psychological.

I could say more but it might give the impression that men in general or me specifically have a one track mind.  Since it would take far more typing than I can endure to explain it properly, I will leave it as it is.

    Excellent points, Hawk. This series should be required reading IMHO.

Hawk,
You do make some valid statements. Now, for the rest...suggestions on what a man as you have described, can do and..... what his partner can do. One would think that if two people communicated that would be enough but it sounds like one may be communicating in sign language while the other is blind sometimes.
Elaborate. Keep this great line open. Maybe it'll unlock a vault of good information!
Swimfly

Smimfly, I have a lot of conflict about being detailed on open forum for a couple of reason.  I need to work through the validity of those reason. 

First, much of it is intimate and personal and obviously involves my spouse.  I struggle with being open Vs. being public with intimate issues that include another person.

Secondly,  I think I can make a case for why men with Peyronies Disease avoid intimacy.  If I can be very frank, I think women often over simplify this while at the same time, buying the cliche that men are simple while women are complex.  The last thing I want to do is make a case for something that couples must overcome in order to have a marriage.  I don't want to furnish arguments for NOT being intimate.  I do however feel that understanding these issues help women and men overcome them.

If that made any sense, that is the quandary I need to work through. 

Also, our open, public forum must exhibit good taste and restraint on issues of sexual intimacy.  There are several ways we would actually undermine our Internet presence if we didn't.  I have considered making a "Intimacy" board that is off limits to search engines and guests.  In fact even members would have to request access to this area so that none would be offended and it would not attract an inappropriate element through search engines.

Hawk,

I am very sorry but I think I misled you into thinking the wrong thing. I wasn't asking for details on what a man likes but more of an insight to understanding the some of the thought processes so we don't make too many critical mistakes..and we do make them! Males are very complex. I personally simplify nothing when it comes to the human personality, man or woman. Didn't mean to cause an issue...sorry about the misunderstanding.

Rico,
You did a wonderful job of expalining some things that are often hard for a female to relaize about the man inside the suit. While everyone is uniquely his own, the pieces of the puzzle eventually still come together. Thank you for taking a moment to give some amazing insights. I appreciate your contribution.
Swimfly

Swimfly,  I completely understood.  It is just that the discussion is intricately tangled up in the other details.

I am thinking about this and if i have time, i will try to untagle it in a way I can post.

Hawk & Swimfly,

I want to thank you both for your recent posts. I am one of those who will read but rarely post. You have both made some excellent points and Hawk - I must say that reading your explanation as to why a man with Peyronies Disease would avoid intimacy just hit the nail on the head for me. That is exactly what I have found myself doing with my wife for the past two years. It has had a very negative impact on our relationship and my wife is struggling to understand it as am I. I will avoid most every form of intimacy because I feel so inadequate to perform and so I don't even want to go down that road. This has led to distance, misunderstanding and some lonliness in our marriage of 26 years and I am at a loss as to how to gain back the ground that has been lost.
Also - I think the idea of a seperate board where folks would share details etc  is a good one and to be honest I have been embarrassed at times just reading some of what has been posted but then again I could be just old fashioned.  Swimfly - I truly appreciate hearing a womens point of view on this as it helps me in learning how to deal with my wife on this and I know that she would do anything to help me with this and if I only knew what to tell her I would be better off.
thank you both for your insights and the others as well - don't want to leave anybody out ;)
DavidW

First to DavidW, thanks for the kind words David.  I think formulating our thoughts to make a post, and exchanging ideas is what helps us work through many of these issues. 

Since avoiding intimacy is usually about avoiding the drive that leads to sex, the question is why do men with Peyronies Disease often avoid that journey.

I am going to try this on open forum and see how it goes.  I tried to keep it acceptable for a general audience.  As I mentioned, men are geared to progress intimacy toward the act of sex.  Intimacy is a subtle form of foreplay.  It is not just a psychological drive but also awakens biological drives.  As a result, a man avoiding sex due to psychological or physical pain is likely to avoid intimacy.  The solution is to understand and deal with the underlying problem.  I want to make it clear that I think these can and should be dealt with and overcome by a couple.  I also believe the first step is clearly understanding the real issues.  It is obvious that a man having very painful erections cannot engage in any psychologically or physically stimulating activity.

First, let me present a male perspective.  This perspective does not represent every male or every situation.  People are far more complex than that, but I think it is common and worth consideration.  A woman may ask a question, that on the surface, seems to be an obvious and fair question.  "OK, so he might not be able to have good old fashioned intercourse as it was.  He has other body parts that work as good as any other man's.  These body parts of his work  as well as they ever did.  I have desires, why doesn't he use what he has?  Doesn't he care?"  The female anatomy being what it is, I suspect that most women have willingly engaged in sex when less than fully into the mood, at least at the onset.  Female equipment really does not require arousal in order to work.  Since a man also has some body parts that work without arousal, then he could do the same for his lady even if he were not fully in to the moment.  Sounds reasonable on the surface, and it sounds like comparing apples to apples.  This simplified view could also make a man appear less caring, less giving, than his female counter part.  One could also conclude he is just too narrow-minded to see the options available.  Lets look closer, making a better comparison that properly frames the issue. 

A male that has functioned flawlessly for decades cannot even comprehend that the system no longer works.  The act is now compromised.  He feels compromised psychologically as a person.  He wrestles as he tries to draw a new,  accurate image of   his own body since his body no longer looks or acts like it belongs to him.  He knows at critical moments during sex, he will call on his body to adjust this way or that and it will fail leaving two people frustrated.  One will be shutdown both physically and mentally.  Often a big part of male sexuality is visual stimulation.  What once was very stimulating, now is about as arousing as looking down and seeing a loop of your intestines hanging out and still trying to stay psycologically aroused.  I can only equate it to a woman who always felt her breasts were one of her greatest sexual assets and one she used to her and her husband's pleasure.  Imagine she found herself with a double mastectomy, and found her breasts replaced with scar tissue.  Think of her as she is then called upon to expose herself flat on her back in the full light of day during sex.  For an accurate comparison, it would have to be a requirement that she had to block out thoughts of grief at loss, concern of spouse, questions of desirability.  To compare further,  her partner would have to focus his foreplay upon her  "flawed" breast area, the very area that made her so aware of her loss.  Amid fighting this flood of negative thoughts, she would have to produce the equivalent to a male erection.  Her visible arousal or lack of it would be the expected objective.  A man must allow his disfigurement to be fondled and get aroused by that.

The above scenario would be traumatic and near impossible for any woman until she felt confidence that comes from totally trusting her spouse with this new situation.  Even after she was sure he accepted her and desired and appreciated her as she now is, she would have to come to accept herself.

This is a long post.  This is my best attempt to explain what often goes on.  It is not an exact comparison because men and women are different in more than physical anatomy.  Men and women think and process information differently.  Society treats us differently.  Most women here would not want a female with a penis.  We are attracted to our psychological differences even though they frustrate us at times.

There is much to say about how the process of overcoming takes place.  My purpose in this post is to just have the women that read this, spend a lot of time trying to place themselves in a truly similar scenario.  To have them compare apples to apples.  It involves much more for a man than, "I can't have intercourse, so why don't I just do this instead.  Encounters are reminders of loss. Floods of grief, frustration, threaten to push pleasure and arousal aside.  Unlike the above example a man may in fact only have to face his new body in the midst of these encounters.  Acceptance and resolve are difficult to pull off at the same time he is focusing on giving or receiving intimate pleasure.  Higher thought processes and passion are contrary states of mind.  The one pushes the other aside. These issues can be worked through once we grasp the problem but we must grasp the real problem and not over simplify it.  Just how we work through the problem will have to be the subject of some other posts.

PS:  I want to add that by nature, men often snuggle, kiss, embrace etc to advance intimacy to the conclusion of intercourse.  Women often reward kissing, embracing, etc with intercourse.  It is a difference that complements each other under normal circumstances.  In fact we seldom think about it, but once Peyronies Disease hits the difference in these approaches can be glaring.

Hawk, I think you have hit the nail on the head.

Men are suffering a huge loss with the development of Peyronies Disease. There is a simultaneous gratefulness that your partner says "That doesn't matter to me so much", and a continued sense of disbelief that such a thought could be even true. Your comments on the natural progression of intimacy into intercourse is really true for most men. Even when we do not think that way, we still realize that such is often the case, and want to believe it *could* go that direction. Alternatives are fun when you know that you still have access to the usual way to express sexuality together. When that is gone or damaged, the alternatives serve as painful reminders of what you do not have or can not do.

Hopefully realizing this can help women to support their partners through the initial phases of Peyronies Disease. Setting aside their sex life for a while as they focus on recovery might make more sense. Oddly, I think of women as better able to do this than men - and perhaps for many couples neither of them realize that they actually have that option - to detach just a bit from sexuality while they adjust, discuss, grieve and recover together. Certainly men are just as lost in this regard as women are. While women may not realize the extent to which their husbands are suffering, it is also true that the men may not realize how much they need help with that process.

You have really stimulated a lot in me in terms of thinking about this process. Hopefully in turn we can find ways to help others to deal with this frustrating and painful process, and to come through to a new place.

Tim

Hey I don't want to change the topic a little bit from the current stream of recent posts, but does anyone have any advice for the younger guys...way younger.  I've noticed a lot of peopel here are way older than me, and a lot of this is great stuff for explaining it to your wife/fiance.  But, i'm 19.  And I have congenital curvature, which I guess is a good thing because I don't know any different.  However, as they say it's better to have love than lost than never loved at all...and I've never looked down and not hated myself for what was there.

I posted part of this on the surgery post, but I'll say it again.  Due to this condition I've never had a girlfriend, after 2 dates I always break it off because I'm too afraid of the idea of her seeing it.  I don't think a teenage girl is as forgiving as others...but maybe I'm wrong.

Anyway due to all this, I decided to go for the surgery.  However (again a lot of this I've posted before so sorry if you've read it) I'm not sure how it went.  I hope its too soon to tell (4 days) but the erections (pain...) don't look good.  So I still have the same question.

Any advice for a young person with the condition who the only person who sees it (if I get the cajones....no put intended) is a first time, teen-age, college chick.  The youngest I've ever seen anyone on here is someone saying they got it at 24, when they were already married.  Anyone else get it younger and have some advice for a fellow under-age-experiencer?

Thanks to all you guys for putting your private lives just out there.  It's already helped me a lot to realize there are other people in the world who have this.


Topic moved from:  Psychological Component - Coping with Peyronies Disease

There have been several posts from younger adults with curvatures or Peyronies Disease-like conditions.  This topic will focus on their unique situation. 

Hey ocdirishboy, early twenties here, and I have devastating effects from this disease, think yourself lucky you only have curvature.

I know exactly why I have it, it is self inflicted, not sure if a lot of men know why they have it but I do and it ruins my life completely so I know what you must have been going through...

I was honestly running out of all hope lately and was a bad day away from suicide but now I've found this place hopefully this is the beginning of something good.

You are not alone my friend.

Dear Deformed,

It sounds like you have been through the ringer. Even if you were not depressed, I and others would offer to you our support and hopefully guideance about what to DO for yourself. However, your sadness makes me hurt all the more for you.

I was young when I got Peyronies Disease. I was about 20, and was scared witless by it. I did go on to keep having sex (the curve allowed it for me thank god), and my fears subsided. If it had been worse, who knows what I might have felt like doing.

Even at 20, and embarrassed beyond belief, I went to my Dad (a doc) and told him what was happening. He got me into a urologist, who was only sort of helpful. But I took that first step.

Since I know nothing of your situation, I will make no assumptions. However, I hope that you have been seen by a doctor and evaluated. I do not know what you mean by "I did it to myself", and you need not feel compelled to post about that in an open forum. But it is possible that you may be wrong about that (not knowing the details of your case); I have read posts of guys convinced of that, who felt they "masturbated too much" (nope - doesn't do it), or played too rough (not likely to have done it).

If there was a trauma to your penis, then that may mean that you do NOT have a "predisposition" to Peyronies Disease (like I have). In that situation, one tends to get worse gradually over time. I would do anything to have had a major trauma causing this - it would mean I was less likely to get worse later, and make a surgical fix more appealing to me.

This is a complicated problem, with multiple causes and treatments. Nothing is perfect, but men with Peyronies Disease can get better one way or another. Hang in there and do not hesitate to contact me via PM if you would like to discuss this more.

And BTW, if I had killed myself over this in the year I was diagnosed, I would have missed some of the most mind-blowing sex one could have that has occured over the past 30 years of my life. And some of us - even at the ANCIENT age of 51 - still like to have sex!

Tim

Hawk,

Thank you for such an insightful post. You express your thoughts very well & there is little I can add. Like Tim said - it has stirred up a lot inside of me as to how I am dealing with this and how I can better deal with this. I really did not know just how much of my own indentity as a man was wrapped up in my penis until Peyronies Disease came along. I thought I knew who I was as a man and thought I had thoroughly dealt with my identity issues but I had not. Now for the last 2 years I am struggling through it again. My wife and I have talked about Peyronies Disease a lot and how it has affected me physically and emotionally and she has said all the right things to assure me that it is OK - yes she admits it's not what is was but there are other things besides intercourse. I think what I realized tonight as I read through your post again was that I have not been able to accept her words as being true, because I have not accepted myself the way I am now. I must accept it myself before I can accept it from her. No one can do this part for me so I am figuring it out. My belief and faith in God has helped me through many difficulties and I know that it will with this one as well.

DavidW

David said: "I think what I realized tonight as I read through your post again was that I have not been able to accept her words as being true, because I have not accepted myself the way I am now. I must accept it myself before I can accept it from her."

Truer words could not be written here. Thanks for that.

Tim

I think this is the PRIMARY area where we can change the devastating impact of Peyronies Disease.  Two men have Peyronies Disease, one's marriage and personal joy for life fall apart and another flourishes.  Is it the degree of curve that makes the difference?  Possibly, but it is much more likely the psychological approach.  A guy that shrinks from 8" to 5 1/2" inches can be mentally crippled, but many guys that started with 4 1/2" have a happy intimate sex life.  Is it length?  Clearly not. 

We must pursue education, awareness, lotions, potions, and surgical wonders, but gentlemen, this topic is the battleground upon which Peyronies Disease will destroy us and our loved ones, or upon which we will apply the treatment needed to be victorious.  While we are pursuing a 10% reduction in the curve of a piece of tissue we may be ignoring the only meaningful help we will ever find, or need for that matter.  I am glad to see that at least a couple guys have recently spoken up on this topic.

I certainly do not have all the answers and I can not even began to address the few I might have in one post.  I have thought about this for a couple years.  In this post I want to throw out some scrambled thoughts in no particular order.

"Time heals" - Actually my experience in life is that time doesn't give a damn about healing or about you or your spouse.  Time rots away opportunities for us to be about the business of healing ourselves and leaves us with unnecessary loss.

"I will respond to intimacy when I work through this." - Well, that's just never going to happen because it puts the cart before the horse.  Intimacy will cause one to face and work through issues that can never be faced while in our hiding place.  You must have a problem in front of you to work on a solution.  In training to diffuse potentially deadly situations I learned and often applied a technique that amazed me.  You could see a person with tense clenched muscles and say, "It would help the situation if you would relax".  Often they would almost shout, "I am relaxed".  The next calmly asked question was, "then why are you clenching your fists?".  The person would almost always relax their fists as if to deny they were clenching them.  This change in body posture would calm them so dramatically I never ceased to marvel at it.  What an eye opener.  I think we must involve our body in what we CLAIM our mind is working on.  Our body sends signals to our mind in ways I do not fully understand.  Often instead of our body reacting to our brain, it becomes a cycle where our mind is really reacting to our body.  Put that body on the shelf and we shut down all sexuality and intimacy.  As one person here said, and I am sure many have experienced, "I don't even have sex in my dreams any more"

We must touch before we want to touch, kiss before we want to kiss, or these will never begin.  Our body will open up psychologically healing pathways if we have a relationship we can expose our vulnerabilities in.  Clearly a one night stand or a rocky marriage is not the place this is likely to happen.

Maybe the best advice comes from a marketing ad "Just do it".  There will be psychological pain.  You may have to to push a wave of grief away as your destructive self tries to make you focus on what isn't instead of what is possible.  With a understanding spouse you can make it past these times when you can only lay there and psychologically tread water.  I hope all of you find someone you can trust exposing your vulnerabilities to during these times.  If you have such a person, "just do it".

hey all, im 23 and got Peyronies Disease from a blood pressure med the doc told me to take. It sucks being so young and having this condition. I think mines slowly getting worse, but my erection strength is only slightly effected so far. Anyways I wish I could go back in time and never take those meds as they greatly lowered my libido also that seems to be permanent. Thinking back on it only makes me mad, if the doctor only informed me of the possible sexual side effects I would have seek natural alternatives for treatment. Anyways, I firmly believe us young guys can be greatly improved. I think the VED is something im going to look into when things get too bad if they do. If your young and dealing with this crap your not alone, just remember to hold on to hope because I think things will get better.

Most 23 year old men are not hypertensive, and do not need blood pressure medications. it occurs to me that you may have a real problem with your vascular system, and that this may be why you are having the "side effects" of the medication - IOW, it has nothing to do with the meds, and everything to do with the disease.

Actually, I am not saying this is "how it is". rather, what I am asking you to do is to realize that what appear to be clear connections are not always that clear. If your libido is decreased (or you have ED), you need to find out why. It seems more likely that the development of Peyronies Disease (which may be due to the medication) has caused depression and that is the cause of your ED.

To find out why this is true, you have to go to someone who understands this stuff and can evaluate you. I would start over with a new urologist, and a good internist, and try to find out if yo uare clinically depressed, or if you have lowered teststerone levels, or what. I struggled for a long time with lowered T levels Before I realized where my "get up and go", had got up and gone to.

I have noted several of the younger posters here talking about their lesions, but still not getting a good medical evaluation.

Tim

Just when I think that I should stop coming here so frequently, and instead just check up for new potions every month, a post like this one comes along and reminds me of why I seek help here. Bygiving help to others, I calm my own mind, and by opening up to the help so generously offered to others in posts like yours, Hawk, I receive great benefits. Thanks.

Tim

I am an old guy (58) who has both Peyronies and Hypertension.  My heart goes out to all of you younger people dealing with either one or both of these afflictions.  But the good news that I have discovered is that there are ways to effectively treat both at the same time.  One thing that hasn't been mentioned, at least recently, anywhere on this forum, except perhaps by rico (bless his soul),  is something that I think is VERY important and even more important for you younger guys.  That is excercise.  It is good for your peyronies and, if you have hypertension, it is good for that as well.  I recently started increasing my walks to approximately three miles a day.  And, since winter is coming, I have a high quality, professional treadmill on the way.  If you spend a lot of time sitting or lying around, just thinking about your problems, you have no idea what stoking up on some L-arginine, horny goat weed, maca, vitamin c and L-lysine, and then taking a good long walk, can do for you.  It can not only help straighten out your vascular problems, it can also go along way toward making you feel better about yourself.  So feed your body well, feed your soul well, get into some good supplements (see the supplements section), and get plenty of excercise, and it will revolutionize your life.  And by all means, do your best to find a supportive urologist who will encourage and counsel you in your efforts to get your health restored.  And by the way, I can easily say, even at my age, that I did it to myself.  But the reality is, as Tim has said better than I can, Peyronies Disease is an extremely complicated thing and is likely not caused by one thoughtless action, but rather by a confluence of unfortunate situations.  But the best way to overcome it is by having a positive attitude and realizing, that in what ever situation we are in, our situation is not incurrable.  Perhaps a cure hasn't yet been discovered for your particular situation, but it could happen tomorrow.  Also, Peyronies (and post op penis surgeries)  has a habit of seeming horrendous and then remarkably getting better at times.  So if I were your age (teens/20s), I would rejoice to have a long life ahead full of potential for good things INCLUDING improvement or even a cure for my penis problem.  Its all just so worth living for.  In the mean time, do your body a favor.  Stay away from unhealthy stuff like tobacco products, alcholic products, recreational drugs, etc. and go for the good stuff and you will find plenty of ideas for that on the various threads of this forum.  When I was young, I had a debilitating urinary tract stricture that required constant office surgeries just to enable me to urinate.  At times I was VERY depressed by this.  I had constant infections and was constantly taking tons of sulfa drugs to fend them off.  But I waited patiently on God.  And he provided me a wife that was totally understanding when I repeatedly pee'd blood in the toilet and was not very functional sexually.  At one point, we were told point blank by our medical doctors that due to our problems (my wife had some issues as well), we would never be able to have children.  Well, now we have two children, one working in the dental field, and one finishing a masters degree in college.  And, due to the advance in medical technology, my problem is fixed permenantly, and with that, along with some good traditional medicine and some good non traditional medicine (herbs and supplements), my wife and I are enjoying the best sexual relationship one could imagine.  Am I ever glad that I didn't freak out and do something really stupid in my younger years that would have deprived me of all I am enjoying now, even with the peyronies and hypertension.  So hang in there guys!  Good things are ahead for you!  Advancing medical technology and the power of the Internet to dispense information at lightspeed are on your side, and God can be on your side as well if you give that a chance.  So let it rip and enjoy life!  There is more to life than sexual gratification, but most likely you can have that as well.  It just requires patience.

George999:

George, way to go man! You said a whole lot of truth in your post. At age 77 now, I have been through somewhat or maybe more of the things you mentioned. My latest medical challenge was bypass surgery two years ago. The one before that was a radical prostatectomy for cancer which took its toll also.

Anyway, just wanted to add my support to your position in life. Keep the faith and your trust in the Lord and good things can only happen!!!

Old Man

I know I'm not really old enough to post advice right here (hell I'm probably the youngest person here), I have nothing to say next to these wise men,  but I can speak from experience.  Trust in God, don't blame him for the situation.  I blamed him at first, got really angry, yelled alot, punched a brick wall and almost broke a few knuckles.  And whaddya know....it's still curved and I was still angry.  Then I realized what I was doing and started to trust in him more and now I'm more posative about it and not being all manic-depresive.  As a seminary student, and soon (hopefully) to be pastor if I can make this mistake than anyone can.

So listen to these wise men, and trust in God.

Tim said it best.  Thanks Hawk, it's stuff like this that makes  me realize why I came here in the first place.  And what you said...yah.  I have never had a girlfriend becuase of the condition because I'm too afraid of what will happen and I assume I will eventually break it off anyway.  But...what you said makes so much sense.

And I can say from experience that its true how much it helps to tell someone.  I told my best friend (possibly one of the hardest thing I've ever done.  I bought him a cigar and told him we needed to talk about something...it was burning my hand before I started talking. lol.)  but the best thing I've ever done.  He was more understanding and helpful thatn I ever thought anyone could be.  He's been there to keep me from going Manic Depressive about it lol, and speant 4 days hanging out at my house after I had the surgery ignoring his other friends.  lol it's hilarious he even gave me rides places, and avoided all bumps in the road and slowed down over hills (said he felt like his was dodging land mines).  It's made us better friends, and I owe so much to him right now.

So yah listen to  hawk.  If you've kept this to yourself, tell someone.  If you don't have a girlfriend, then tell your best bud (I didn't think my friend could handle this the way he did, but he matured so much (fyi I'm 19, and my friend is 17 lol so anyone can be mature enough to be a help lol))  its embarrassing but worth it.

Thanks hawk!  your awesome

Irish,

The friend who helps also benefits by becoming a better person from the experience.  Your friend is lucky to have you, too!

Liam

ocdirishboy:

Yes, you have stated a whole lot of truth in a very few words. I have trusted in the Lord and God for many of my operations to be successful. HE has delivered in all cases, even to the point of healing my migraine headaches after my bypass surgery. Some say that it was the operation that did it, but I know better from previous experiences.

Good luck to you and hope that you pass all your subjects in the seminary and go on to be a very successful pastor of a church. My son-in-law is a graduate of the Southwestern Baptist Seminary in Fort Worth, TX and now has his own church as the senior pastor. And, I know the drill of a pastor's life so you must be totally prepared for a very vigorious life in the future.

Keep the faith and good things will happen for you soon. Letting your anger out is the human side of life and it seems that you have learned that lesson early.

Good luck to you and if we can ever help in any way, just let us know.

Sincerely, Old Man

I'm 30 and was recently diagnosed after having this condition for a little over a year. My curve is to the left, don't know the exact degree. The doctor said it may not get worse and I should still be able to have intercourse. Yeah, right.....can't have intercourse if you can't find a willing partner. I was already cursed size wise and now I'll only cause women pain. Where am I supposed to find someone who wants a guy like that? All day and night I think about how many lonely years I have ahead. All I ever wanted in this life was to have a loving wife and a family of my own and now no one will ever accept me. Great.

Misterb,

I feel your pain man, as my penis has shrunk, bent and hardened.  I've been talking to a girl for awhile that soon may become my girlfriend(we are more than friends).  I told her about my condition and how someday I may not be able to have sex at all, she didn't even care.  In fact she told me with her last boyfriend she never had any orgasms anyway from sex and isn't even really interested in sex, she told me she could go 8 months without sex at a time.  Foreplay and oral sex would probably be enough for her and she doesnt even want that, she just wants someone who won't lie to her and throw her cat against the wall when he is angry... ???

I won't blow smoke up your ass, this condition is depressing, it sucks, its unlucky, unfair, and flat out depressing.  Initially I think one needs to let out their pain, but what good will it do to sit around and obsess over it?  Blink a member of this forum summed it up to me when he said " yeah I got a bent dick! my dick is bent so what there are much worse things in life!!!!!" 

You will be surprised that there are caring compassionate women out there, some that don't even care about sex surprisingly, they aren't everywhere, but they are there. 

You seem to have deemed yourself cureless, what treatments have you tried?  How do you know you wont' get better?  Theres all kinds... pentox, alc, l arginine, Iontophoresis, Verapamil injections, VED etc....  I would pick a treatment course and stick with it, and keep trying things.  Meanwhile in your life focus on non sexual ways to please women and try to pick up a hobby like model planes, bird watching, gardening, cooking, mountain biking, or card collecting etc...

Keep the faith and good things will happen man, feel free to PM me if you need a morale boost.

ComeBackid

"I will respond to intimacy when I work through this."  [Hawk]

Dead right Hawk,
Or,
"I can't work through this, till I achieve intimacy." That's the hard part for us.

How to achieve intimacy when we perceive ourselves as being deformed and are embarrassed to "get it out" [the prelude to "sexual intimacy", as opposed to just your "emotional" intimacy].

It may sound a bit shallow, but for those of us who aren't lucky enough to have partners - every encounter means a baring of the soul and our perceived imperfections!

Time to bite the bullet, face the Dragon - you're a long time dead - take a chance - I intend to - given the opportunity. Will update if it ever happens.

Thanks for saving my sanity guys.

Iacomus

Thanks for you concern. I've been taking Vitamin E since the onset just over a year ago. I started ALC about three weeks ago and arginine today. I knew it was Peyronie's and had already done more research than most urologists so I skipped over the small timers and made the trip the #2 urologic center in the U.S. to be examined and formally diagnosed. I was offered nothing in the way of treatment. In fact, I was told point blank that nothing works except surgery and my condition isn't severe enough to warrant an operation. I didn't want the surgery anyway because I'm already too small but I was hoping they would try something else. It's very reassuring to know the medical community could care less about helping men with Peyronies Disease. I don't want to be restricted to only pleasing women in non-sexual ways, I want to be normal. I love women. Being with a woman is almost a spiritual thing for me, always has been. I can't just give that up forever and carry on. I used to have several hobbies, but I've lost interest in everything. I'm so broken down right now I rarely leave the house. I've been seeing a counselor for months but it's not helping at all. I'm no angel but I haven't done anything to deserve this.

If the doc made the statement nothing works except surgery, he is wrong on multiple levels.  There are many treatments which have caused "improvement".  On the other hand surgery is not a cure.  It only attempts to correct the bend, not the underlying condition.  Until a "cure" is found, the goal for me is the ability to function (reducing the curve and maintaining an erection).

As far as hurting a woman (because of the curve), you may be pleasantly surprised.  Without getting to graphic, there is a certain amount of stretchability involved.  ;)

Dear MisterB

You have my sympathy. It is tough to have Peyronies Disease, and it can really affect your self esteem. Every time I look at my penis and think (or really find) that there is something worse, my hopes for improvement sink and my emotions go rolling along.

That said, there are limits. Your doctor has told you that "there is nothing other than surgery"... I even wonder if that is true, or if what he said might have been subtly different and that is what you heard. Might he have said that the only definitive treatment is surgery, and that no medical regimen helps everyone? For that would be more true, and you should know that if you have been reading here.

And if you have been reading here, then you know that some of us (like me) have had girlfriends for years, and had families, and had sex, and did all the things that you are bemoaning as lost to you forever.

You are engaging in black and white thinking, and in catastrophization. These thoughts and feelings are signs of depression, and are treatable. They are not signs that your thinking is grounded in facts, though.

So I have some advice for you. I know it is unsolicited, but here it is anyway. Get off your butt and get out there in the world and start living. If you have a penis that is not bent enough for surgery, then go ahead and use it. Feel sorry for yourself all you want, but do not pretend that you are unable to do the things in life that you want. You are not unable. Perhaps unwilling (right now), but not unable.

Find out if you should be on an antidepressant (and think of wellbutrin, not the other SSRI's). Get a new therapist if the one that you have is not helpful. Eat well. Start to sleep well. Exercise. Do something to help yourself, because the problems that you have are not restricted to your penis - they reside firmly (but I hope not too firmly) in your head. Good things will not happen overnight, but they will happen if you start - just for today - to try to approach this differently.

Good luck - it does get better.

Tim

Hey MisterB,
You should not be thinking this is the end of your sex life!!!! Let me tell you what you need to do.
1.) You need to start working out 3-4 days a week. Weights, Aerobics, Running... this will help with your sexual performace and you will feel good about yourself.
2.) Take supplements like ALC, Arginine,Tribulus,Protein, Vit E...
3.) Start eating and sleeping right. Do not party like a rock star. You can go out and have fun just don't over do it week in and week out. Once in a while won't hurt but not all the time.
4.) Don't worry about the curve it really does not hurt a woman (I have the same curve to the left) and to be honest with you most woman won't even notice it. My wife and I did not notice it until I read about Peyronies Disease and then we both looked and said yea it is curved... how about that? Really did not effect our sex life at all. My biggest thing for me was getting hard and maintaining but when I started working out and taking these supplements I have no problems in that area and now my wife runs from me (LOL)! I am 49 years old and I truly believe even without Peyronies Disease you need to keep in shape if you want to have a healthy sex life.

DON'T GIVE UP!!! KEEP FIGHTING!!! That is why my screen name is FIGHTER...I will not GIVE UP... I WILL KEEP FIGHTING... Your mind is a Strong tool...use it.

Note to all:

Recently, Liam and I attended a prostate cancer support group meeting with our local chapter of the US TOO.

Our featured speaker for the evening was a pastor at a local church whose job there is working with the older adults. His topic for the evening dealt with the type of intimacy. He outlined a number of them, of course my old mnd doesn't remember all of them, but I do remember three of them. They are outlined here in no particular order as he presented them though. Liam can correct me when he has the time.

The three that stood out for me are: Personal intimacy, spiritual intimacy and last, but not least sexual intimacy. He spoke on how these affected a person's life and how to deal with them. Personal intimacy occurs when one deals with another friend on a very close personal basis, revealing very private matters and how they apply to each. Spiritual intimacy deals with ones relationship with God and how this applies to their individual life. Sexual intimacy deals with how one interacts with his/her sexual partner, and we know the rest of the story there.

The above is presented in hopes that someone might benefit from the comments. Just wish that I could remember more of the good pastor's presentation as it was well done and applied to all walks of life.

Regards to all, Old Man

Liam: Help me out here!

     If you have been reading this forum before joining and posting as I suspect many here have done, you must realize that you are not alone. Your fellow members may not be sitting across the room from you or across the street; some of us are half-way around the world from you. But the internet is your connection... you have found a group that listens when you talk and will talk when you listen.
     Your presence here is affirmation that you have acknowleged a physical and psychological wound. This forum is a living, breathing thing that exists for your support. You know you have something going on and that you feel terrible. This forum is your ER... your emergency room; a place you go to stop the bleeding and contain the wound. This is your triage; you have found a place where help can be found.
     There isn't a man or woman on this forum who doesn't know how hard it is to open up and talk about their condition. Even coming to this forum and typing thoughts can be psychologically wrenching. But, this is something that you must do as your first step to getting your balance back. The first couple of times will be difficult, but talk until you're blue in the face. No one will object if your post is a single line or a multi-paragraph dissertation! If you have no one near you to talk to in person just yet, type out what you feel here. You have quite a large group of listening ears here.
      This is also a good time to keep things like alcohol or drug consumption, over-eating, under-eating and other destructive things to a minimum or eliminate them. We are here to help and we will, but these are things that you must do right away as an individual. You need all your thought processing skills to be sharp right now... binging on booze or anything like that knocks rationality down quickly. Plus it makes it very hard to find your car keys!
      You can start to calm down now. You've found your first source of help. You've made it to the emergency room (this forum) and you're getting stable. The healing will follow. We, the forum members, aren't going anywhere... we'll be here to listen to you. We've been down this road and we speak from experience and we know a thing or two about how to begin the road to healing.
      So when you have a burning question or thought about Peyronies Disease and its effects, start typing and talking here no matter how trivial you think the subject is.
      Congratulations! You have landed in the Safety Net and we've gotcha!

Angus:

Just read your post and it could not have been said any better. You are dead on with the advise to this young fellow. As you said, we might be oceans apart, but by way of the forum we are just as close as the keyboard on your computer. Once a person has started posting here, things do get easier to handle each and every day, I know, have been there and done that.

Keep up the good work!

Sincerely, Old Man

I have a little difficulty getting and maintaining erections but I'm fairly certain that it's a psychological thing at this point because there are times when I don't have any trouble at all. I think that if I had a willing and ready woman lying naked in the bed that it will stand up and stay that way although performance anxiety and fear of rejection may stand in the way. It's been a long time and my confidence has been totally wiped out. As for the curve, it's definitely not going to go unnoticed as I have an obvious bend. I hope you guys are right about it not hurting women because I'm scared to death that it will. It gets hard as a rock when I'm really excited, so it doesn't give at all and I can just visualize it poking into the side and causing them pain. I didn't misinterpret what the doctor said, he wasn't subtle at all. He told me that in the past doctors threw everything at this condition but now that they know more about it they have concluded that all non-surgical treatments are ineffective because scarring cannot be reversed. This guy is a highly respected urologist at one of the finest medical centers in America, and I left very disappointed. I desperately want to attempt some of these treatments and I'm trying to figure out where I can go to get them. In the meantime, I will continue with the Vitamin E, ALC, and Arginine. I don't smoke, rarely drink alcohol, and I don't use drugs. I definitely need to eat healthier foods and start exercising again. The problem is that I just don't feel like it and have not been able to force myself, even though I know how how important it is. I was already depressed and suffering from low self esteem before I was hit with Peyronies Disease, so this has complicated matters in a very big way. I get migraines and occasional migraine related dizziness and have been advised against taking all SSRIs, Wellbutrin, and Effexor, as they are all triggers for those conditions, and the other antidepressants I've researched have so many awful side effects they shouldn't even be on the market. So I'm kind of in a bind as far as taking medicines to help me feel better. I just feel so overwhelmed by everything right now and I can't seem to catch a break. Fortunately I'm not ashamed to talk about it and you guys are listening.

misterb, I want to tell you point blank that women worth your time are far more interested in other aspects of your person than your penis.  If you really want to have a "loving wife and family", you will definately want to avoid the type of women who would be concerned about either the size or the condition of your penis.  Do you really think that women don't have problems with their sex organs?  I can tell you that they most certainly do, and if you really want that "loving wife and family", you had better be able to accept whatever baggage your spouse comes with, just as she will likely accept your baggage.  As far as your specialist doc is concerned, he may have the best of medical credentials, but if he really told you what you say he told you, I think he is entirely to negative on non-surgical proceedures.  I can tell you that vitamin E has worked well for me, but not the synthetic stuff they sell cheap in all the pharmacies.  The stuff that works the best is the full spectrum kind that has all the pherols and all the trienols.  I use this product: http://www.natural-complementary-medicine.com/Detail.bok?no=2 (http://www.natural-complementary-medicine.com/Detail.bok?no=2)

There are many other helpful supplements as well as the VED than can be very helpful to you reqardless of what that doctor told you.  There are also at least one very promising non-surgical treatment on the way that I think may wipe out most cases of peyronies within a few years.  So I think you are being extremely negative and have had the misfortune on visiting a doctor who reinforced that mindset.  If you are patient and willing to continue to learn, I think you can likely have this problem fixed within a few years.

Guys, I came here to reach out and get some support. But I get the feeling that some of you think I'm not being truthful about what I was told by the doctor and quite frankly, that's bull- (fill in the blank). I've been open and honest with you in every post. The doctor stated his position on non-surgical therapies and I simply related it. Do I agree with him? Nope, not at all. I've read the Italian study using ALC, I think it's indisputable evidence that there are other options for treating this condition and I've started taking the same dosage as the test subjects. I'm sure I find it just as disturbing as you that a supposed top specialist in the field chooses to disregard such studies and do nothing but nevertheless, he does. I want another opinion and the option of pursuing treatment and I won't stop until I get it. It's tough because I live in a rural area and local options are non-existant, but I traveled to see him and I'll do so again and again until I find an obliging physician or go broke. Yes, I am very negative about this right now. I'm scared, angry, depressed, frustrated, and feeling rather hopeless. It's no fun thinking that the life I wanted for myself might be out of reach for me now. I'm going to keep on telling it like it is here because I can't just lock it away and let it eat at me. If you choose not to believe me, that's your problem.

Misterb,

If your doctor told you there is no non-surgicial treatment for peyronies in my opinion he is crazy, I'd get as far away from him as fast as possible, he probably won't hesitate to cut up your dick and bill out to your insurance.

I've talked to 5 men on here now who have seen results from the VED, maybe some plaques or scars or whatever you want to call them can't be healed, but who says you can't stretch tissues?  Hell you can stretch bones and ears out, why not penis tissue?  You already are on a good set of pills, but I think many will agree, the vitamin E won't do a thing, I was on that for a long time, like a year it didn't do a thing, high doses can cause your arteries to harden and give you problems.  I would add in a good quality vitamin, I take centrum.  The VED's seem to be the hot thing right now, a few guys are using traction devices but I don't think we've heard any convincing clear positive results from those yet, as we have from the VEDs.  

Be careful with the anti depressants, they can lower your sex drive by reducing your seratonin levels, which happened to me.  I just today got a total testosterone test done to see if thats why I get no daily erections, or if the plaque is causing it.  Keep your head up and dont' EVER give up the fight on this disease, if you need a morale boost PM me, DON'T GIVE UP YOU CAN'T, YOU CAN BEAT THIS CRAP!

ComeBackid

FWIW, I don't think that you are being dishonest. But I do think that it is possible that you are capable of filtering what you hear through the depression filter. Communication is not always straightforward. My point is that yo seem so down that it is hard for me to imagine you completely hearing what a doctor said in a the tension of a visit, perhaps rushed. I say that because, again and again, when I have dealt with patients in highly stressful matters, I have learned that about 90% of what I say they do not retain - at all. In fact, when I am discussing something like a newly diagnosed case of cystic fibrosis (a life shortening disease), I tell parents that I expect that they will not remember most of what we talk about, and to feel free to call me back - even on the way home - if they want to go over something again. I remind them that this is our expectation of them, and to not feel stupid (and there are no dumb questions) if they think they are supposed to remember something.

It is that experience that makes me question how you are processing what you are being told. All I know is what you tell me - I have no reason to doubt its truthfulness. But the picture that you paint of yourself is of a very depressed young man who is bordering on hopelessness, but who is also reading, and has accurate information about Peyronies Disease. So the sense of hopelessness is disproportionate to the facts (IMO).

Look - you get to be depressed. Most of us are or have been depressed about our Peyronies Disease. What I am saying is that you also have the opportunity and ability to change that. So when you post things like "the therapist didn't help", I hear futility. I would strongly suggest seeing a cognitive behavioral therapist for help, especially in terms of figuring out what the thinking is behind your feelings. What we can do here - and it is a VERY important role, IMHO - is to provide reality checks when your tendency to think in black and white starts to get the best of you. An example is "... the life I wanted for myself might be out of reach for me now. "

I am submitting to you that it might be out of reach completely - if you remain depressed. But many of us with Peyronies Disease have found healthy and loving relationships that were started with Peyronies Disease already present (like me). So, in fact, it is not out of reach. The fact of our existence proves it is not out of reach.

So stick around - it might help you find a path that will help you emerge from a sad fog of hopelessness and into a bright sun of hope and love.

Tim

Guess I just filtered out all those other treatments he didn't offer me.  ??? 

Quote from: misterb on September 20, 2006, 03:13:51 PM
in the past doctors threw everything at this condition but now that they know more about it they have concluded that all non-surgical treatments are ineffective because scarring cannot be reversed

Insert "but the kitchen sink" after the word "everything" and change "they" to "we" in the above quote and you'll have a verbatim account of what I was told by this physician. My judgement may be clouded but my hearing and my memory are not.

misterb:

I would like to add my 2 cents worth to the comments that Tim made about entering into a relationship AFTER he had "acquired" peyronies disease. My case of Peyronies Disease struck at the age of 23 plus and I too thought that any marriage for me was over. WRONG, after trying desperately for years back in the 1950s for some sort of "cure" and finding none, I decided to move on with my life. At the age of 33 plus years of age, I met my wife and we have had a great union ever since. We have three children and eight grand children, with my oldest (daughter) now at age 42.

Peyronies Disease and other physical/medical problems have never caused any difficulty in our marriage. So, bottom line, take all the advice/comments that have been offered you in the previous posts, sort through them and decide on a plan of action that best suits your situation. You can do it, just settle down, get help for your depression (we all have had it at one time or another) take a deep breath, and then jump into action.

We are all here to help each other in any way possible, so feel free to post, write PMs to individuals, and above all get into a schedule in your life to look up instead of down. Believe me, all of us have been in similar situations that you find yourself now and we have survived!

Sincerely, Old Man

Are you sure you're not a Pastor yourself Old Man?

"There are a number of different Greek words for love, as the Greek language distinguishes several different senses in which the word "love" is used.

For example, Ancient Greek used the words philia, eros, agape, and storge to refer to different aspects of love."

[source] http://en.wikipedia.org/wiki/Greek_words_for_love

[I seem to recall saturnalia and platonic as well - but maybe they're Latin!! <source - me>]

Hope this helps jog your memory - are you sure you shouldn't start an Altz Forum?  :o

Iacomus-Magus
[a young man from Tashkent - in a new identity - how's your Latin?]

Iacomus-Magus:

Appreciate the promotion to a pastor, but I really am not one. Don't have the background nor education to be one.

I have been educated from what I call SHK, the school of hard knocks. My personal experiences during my fairly long life have given me the benefit of many contacts with the world of business. There I have learned from my mistakes and used that knowledge to promote myself to the point that I am today. My background in the business world covers many and varied enterprises.

No, I do not read, write or understand Latin. Never had the opportunity nor the need to learn it. However, it is very important to all the other lanquages of the world. Many words are derived from the basis of Latin.

Again, thanks for the vote of confidence.

Old Man

I was examining myself this morning and I discovered what feels like a new plaque. It's further up on the same side as the old one. Does that mean I'm going to start bending there now too?

That happen to me also and my bend did not get any worse. But every case is different. My plaque is located on the right side near the gland and under the bottom side right next to the gland almost in the gland. Do you have pain?

I only experience pain if I press on the original area of indentation while erect.

I had pain for the first 10 - 11 months then it went away but sometimes it still hurts... once in a while??? But for the most part... no pain. In the early stages I would get pain when I was hard right at the gland and I think because my plaque is so close to the gland it caused more pain than normal. They say ALC helps with the pain and that is what I take and it seems to help? Keep Fighting...

Fighter

Tim, I know whats wrong with me. I have been on a diet of eating nothing but pizz, double cheeseburgers and macaroni for my whole life. I do not ever ever eat any fruits or vegtables and this includes juices. I only eat junk food and lots of it. Last night I ate two large papa Johns Pizzas for instance. Anyways I gotta change my lifestyle I know to get my blood pressure down. Anyways before I took the meds my libido was out of control, I mean I thought about sex every second of the day. My erections were 100% fine, in fact I remember reading about people with erection problems and thought how could this be, that seems impossible. If I just thought about a girl I got a perfect erection. Anyways so yea when I took the meds I noticed it all happening, then I looked it up and sure enough it was a side effect. I didnt however know both the erection problem and libido were permanent. It seems I get increases in my libido from time to time to where I was like before the meds, but then it goes away for weeks. Anyways I wish I never touched the meds and just ate right. Im hoping things will change or something, ive been off the meds now for 2 years I believe.... or it could be almost 3 im no sure.

HCTB,  You know dude that a side effect of uncontrolled hypertension can also do nasty things to your libido (and worse).  From what I know about hypertension medication, when you stop taking the medication, the side effects usually do not continue on for two years.  I think that what is effecting you could very well have to do with your hypertension.  And yes, your diet can very well be driving your hypertension.  So lets continue to discuss that via private message.  Another thing to think about is that you are at the age when there is often a very normal drop off in libido.  And their are some natural supplements out there that can address that.  Wishing you the best.

- George

George and Tim thanks for the great detailed replys. I know I need to do something about my BP. I dont know whats wrong with me but im a nervous wreck when I get my blood pressure checked. My eyes go blood shot red, I sweat, my heart beat goes crazy up. Im scared of getting a high reading and it makes me so nervous, this is my main problem. My first doc wrote it off as white coat syndrome. I will tell you this, I get extremely nervous when I do a speech in front of a class, my voice trembles and I cannot even speak sometimes its so bad. I dont know why I get so nervous over a little speech, sometimes I do it fine. When im nervous its bad, I start sweating, tremling etc. I feel this exact same nervousness when I take my blood pressure, im so nervous when I talk my voice breaks up. My heartbeat is so hard and fast im just like vibrating. Anyways I got a serious nervousness problem on taking my blood pressure, I can take it anywhere, I still get the same nervous. Im not talking a little nervous, im talking more nervous then anything in life has ever made me. I know I got a problem, and I cant seem to fix it and it only gets worse the harder I try not to get nervous when im taking my blood pressure. Now I know I could need meds, I know one thing I think changing my diet would make a good impact. I really dont wanna take prescription meds unless all else fails. I know I sound like a idiot when I say prescription meds are harmful, but I saw quite a few docs that also agree with me and say they do more harm then good often.
Take a look at this article:
http://www.westonaprice.org/moderndiseases/bpdrugs.html
Now as far as the libido or erection problems being due to hypertension alone I know thats not the case for me. Now my libido problem is complicated as im not even sure if it exist because im paranoid about it never coming back which could be my mind playing tricks on me. The erection problem is real because I noticed it at a party one night with a girl and thought well this is weird. I looked it up the next day and found it to be a side effect. Lately in the last 3 days my libido has been good for some reason, im hoping the trend continues. Now why are my erections still not 100% after nearly 3 years off the med? It took me a while to figure that out, its because the meds gave me peyronies and thats not going to go away. Anyways im sorry if I sound uneducated on this topic because I actually am educated on blood pressure meds and alternative treatments. It just makes me so angry that I could of avoided getting Peyronies Disease if the doc just mentioned and slight risk of Peyronies Disease. I would have switched to another drug or tried natural alternatives before taking it. George and Tim, I know both of you are very well educated on blood pressure meds so im not trying to disrespect you in any way. I dont know what to do honestly, they are going to have to take my blood pressure when im sleeping is the only way I can come up with, even then I will be worked up all that day and it could give me false readings even that night. I know your wondering why I get so nervous over a simple blood pressure reading, well its because if its not normal I know theres a chance I will have to go on blood pressure meds. Im a nervous wreck when it comes to taking my blood pressure. I know natural alternatives dont lowrer your bp enough for alot of people, but I think a huge problem for me is my diet. I also had alot of test to rule out secondary hypertension. Anyways do you guys know of any natural alternatives that really work good? I read of a 8 day fast with only water that seems to give people a good building foundation to start out with lower blood pressure and keep it down with the right diet. Thanks again Tim and George, im not trying to say anyone is wrong here, im just scared to take meds before I try changing my diet. I know if I do not fix this problem soon im going to have some serious health problems in the near future.

Howcanthisbe,

It is VERY NORMAL to have this kind of problem with taking your BP readings.  If you are afraid your blood pressure might be high when you take the reading IT WILL BE, GUARANTEED!  But there are solutions to this problem. One is wearing a 24hr monitor.  Another is that you just get into a routine of taking your blood pressure and you do it on such a routine schedule that you get used to seeing it high all the time and suddenly, it isn't so high anymore.  But you need to get a handle on what your BP is doing.  You need to approach it with curiosity, not fear.

I read over the article by Dr. William Campbell Douglass.  And on some points he is right.  On others he is wrong.  Dead wrong.  He maintains that since hypertension is a symptom and not a disease (and in that he is correct, that is why I refer to it as a 'syndrome', it is really a composite of a number of underlying symptoms), it should not be treated.  But I can tell you that symptoms ALONE can kill you.  You can have an infection.  The solution of course is antibiotics to fight the infection.  But you may need medication to reduce life threatening fever as well.  Often the bodies attempts to fight a problem get out of control.  We see that with peyronies.  The same is true with hypertension.  In that case we need to make intervention and purposely disrupt the bodies responses in order to restore the bodies balance.  This is the purpose of blood pressure meds.  I would agree that many of these meds can have significant side effects, but I can tell you that ACE-Inhibitors and especially ARBs, which Dr. Douglass doesn't even mention, are exceptionally safe medications.  And since secondary hypertension has been ruled out in your case, the most likely cause of your hypertension is elevated levels of renin.  In simple terms, this is caused because the kidneys get starved for blood due to vascular problems and attempt to get more blood flow by secreting renin which causes the vascular system to constrict and raises blood pressure.  And this actually works well for a time.  But eventually the kidneys are no longer able to 'self regulate' and the same vascular contriction that increases blood pressure starts to actually further starve the kidneys by restricting the renal arteries as well.  ACE-Inhibitors and ARBs reverse this action, and not only lower blood pressure (which by the way is pounding on your kidneys causing further damage), but also cause the arteries in the kidneys themselves to dialate renewing the lifegiving flow of blood to your kidneys WITHOUT the pounding of elevated blood pressure.  The kidneys location directly under the heart makes them exceptionally prone to damage from elevated blood pressure, and you definately want to stop that damaging effect as quickly as possible.  When it comes to blood pressure information, I urge you to read the link I sent you to an article by two of the top blood pressure experts in the world.  I can assure you, when it comes to understanding blood pressure and its treatment, Dr. Douglass, as well intentioned as he might be, doesn't hold a candle to them.  These are two of the world's top experts.  Pay attention to their advice.

You also need to do something about your anxiety issues.  Aloe Vera softgels twice a day were a great help for me in this regard and they also will lower your BP, bad cholesterol, blood sugar and do other good things for you, fish oil (one softgel a day) is also good for anxiety in that it lowers inflamation in the body.  You might want to give them a try.  Actually right now, I am also taking a little bit of clonazepam, a prescription drug to lower my own anxiety level, by choice, because it makes life easier for me and is assisting me in my plan to control my BP using natural approaches.  Prescription meds are only bad if they are abused, in the hands of a caring and compitent doctor, they can be great tools to restoring your health.  So don't believe all the scary hype you read on the Internet and in the news.  The Internet is a great tool for learning, but it has lots of bad and even dangerous 'information' on it as well.  Those who insist on ONLY conventional medicine are just wrong. And those who insist on ONLY natural treatments are just as wrong.  The plain fact is, natural treatments that work alter the body's metabolism just like prescription drugs do.  And when things go wrong in our bodies we have to intervine to set things straight and thats where the logic of folks like Dr. Douglass just loses it.

I agree with you that a big part of your problem is 1) your lousy diet and 2) you probably have a lousy lifestyle with regard to exercise and who knows what all else.  So please do yourself a favor and order a copy of the book I recommended to you and try to follow its advice.  Tim and I are here to try to help you.  Believe me there is a lot of bad advice out there on the Internet from people who are either ill informed themselves or even some with malicious intent.  Don't believe everything you read that puts down conventional medicine.  Conventional medicine has plenty of problems, but some of these sites, like the one you linked are giving you really bad advice.  Even the site I linked with the article by the two BP specialists has some bad advice. You have to filter everything by what you know to be true, and that takes a lot of knowing.  Tim and I have a lot of years of experience in that regard and Tim has a considerable amount of serious training.  So take advantage of that.

If I were you, I would skip the fasting and try to get on some medication to lower your anxiety level (if aloe vera and fish oil don't do it for you) and see what effect that has on your BP.  I would then try to get on a good BP medication (ACEI or ARB).  At the same time you can get on a healthy diet and exercise routine.  Remember, these prescription medications may (hopefully) be only temporary and can allow you to get a good shot at actually curing the underlying problem.  At this point I am convinced that a lot of the stuff that is good for peyronies is also good for hypertension.  Stuff like Vitamin C (use ONLY the time release type), CoQ10, Vitamin E (use only the full spectrum type), and horny goat weed.  But use your head, don't OD on any of these.  You can take lots of time release C up to 6 to 8 g per day, I really like the 8hr stuff you can get at Walgreens and you can take lots of CoQ10 up to 300mg per day, its terribly expensive, the best source is Costco if you have access to them.  But I would limit the E to 800IU and the horny goat weed to the max on the label.  You might also try maca tablets, their actually made from food, so no real limit on how much you can take other than what your pocket book can afford.  But all of these are no substitute for sound medical advice from a good internal medical doctor.  So get yourself to a new doctor, write down everything you've posted here and more and take it with you and explain everything to him including all your fears and concerns and you will be amazed at how much help you can receive.  Take advantage of it.

Wishing you the very best from the bottom of my heart,

-George

George, thanks for the great reply. I will surely check out those links you provided. I gotta get my blood pressure down, I just keep putting it off and think well I will take care of it after college but I cannot wait any longer. I am going to take action. I will check those out and thanks alot for the advice, im sorry for going off topic here. Thanks again.

Dear HCTB:

Thank you for being so honest - it can't be easy to open up about such stuff that is so embarrassing. I have struggled with anxiety in my life, and have been a "responder" my whole life to situations. When I did an exercise test at 30, my BP was highest when I was standing there waiting to start!

Your responses that you describe are more than simple anxiety, though. It sounds like a crippling disorder as you describe it, and this is your life. This is not "anxiety", or "hypertension" or "Peyronie's". This is how you are and who you are. And the wonderful thing about what you are struggling with is that it is something that can be fixed. But this is your life here, not "college" or "just for now".

Do you want to be like this forever? It won't last that long with luck and work, but why wait around?

So, IMHO, you need to get some real help. You need someone to comprehensively help you - meaning not start you on an SSRI that might worsen PB or Peyronies Disease. (I'd start with bupropion)(wellbutrin). A therapist. Find out what is available for free through the local campus clinic. You might find other local sources of free care for mental health help. Look for it and you will find it. I have a friend who is seeing a therapist at the local gay health center (which is primarily focused on helping indigent people with HIV/AIDS) because he found a great therapist there, and they were willing to see him for 5$ a week. If you look you can find help. I am unconvinced that you are looking - but I hope you hear what we are saying to you to get you moving.

Tim

Thanks Tim. Im really calm though in tough situations and im not paranoid. Its only the BP thing and speaking,lol. Im gonna seek help and take your advice.

I am not sure how many members regularly surf our website for updates, but Tim wrote a great article on Peyronies Disease, Sexuality, & Intimacy thathas been added to our site.  I suggest that everyone read read it.

It links off of several pages including the home page, News, and the Disease page as well as our site map, but here is a direct link.

http://www.peyroniessociety.org/intimacy.htm

Hey guys I've been reading through a lot of this topic and this subject has been slightly touched on a lot but not quite so specifically.

I am having severe depression issues with all this.  Where I used to just sort of let it bug me and I hated it, and it wore on me, but I never let it take control.  But now it's literally all I think about.  I literally walk around looking at every guy that passes telling myself how his package is perfect and how ugly I am for having this disease.  And not only have I been blaming myself, but I started blaming God.

I know I got chastised before for talking about religion but it can be majorly affected by Peyronie's, and I'll only be on this for a sec.  I used to be hugely involved with church and I wanted to be a pastor.  but now cause of all this I've started blaming God.  He gave it too me, I've prayed about this and theres no response.  No healing that people always talk about, he doesn't care.

Sorry off toppic.

Point being.  Even my best friend, which if you read from earlier in this topic, has always been there for me and has been the best support that I could ever ask for (besides you guys ;) ) has seen a change in my mood due to this and I can tell he's getting annoyed with it ...a lot so I'm trying not to talk about it.

So any ideas for what you do to keep the knife away from your wrist (ok I've never actually written a note but the thought has crossed my mind a few times this semester and that's never happened before in my life...)

Thanks

If I recall back to April, when my peyronies worsened, I was feeling the same as you are man.  Your surgery is done, there is nothing you can do about this.  I would let everything heal then get very aggressive with treatments, pentox seems to look really good, a lot of people on here report results from the VED, and Iontophoresis can work for some people, I'm actually looking to sell my unit at a really discounted price to anyone who is interested.  The most important thing is to get healthy... work out, eat right, lift some weights, and try to pick up some new hobbies.  It may benefit you to see a counselor, I was seeing one for awhile but he got depressed himself from his bladder cancer.  Finally you have to try to think in terms that your penis is not the most important part of your body, sex is not everything my friend.  Things could be a lot worse, I thought peyronies was the worst thing that could happen to me, then I had a life changing event and suddenly peyronies is second on the list for me my friend.  What if you didn't have a leg, or an arm?  What if you had no penis at all?  What if you were paralyzed, or a had a chronic progressive deadly disease?  There is hope, your penis is not broken for good, but you must take it easy on it, your most recent problem sounds like it came from you not laying off your penis, you got to do this until it is fully healed, then attack peyronies with everything.  Many treatments out there, alc, pentox, ved, iontophoresis, supplements, viagra, l arginine, hit it hard.  4.5 inches will still get the job done.  I think when unlucky things happen to one, it is natural to be angry, I've felt the same way, why would god allow such a thing to happen?  Keep the faith my brother, it could be a lot worse.  Here in pennsylvania there was a fellow who was angry at god for his daughters death at birth, he lived about 18 miles from my house.  He never sought help and got so angry he walked into an amish school house and blew some innocent girls away, then he turned the gun on himself...

I sent a PM to ocdirishboy because I wanted to avoid a religious post from my one point of view that may spark controversy.  Our rules indicate that such remarks should be limited and confined to this topic or the "Off Topic" area.  After sending the PM I decided that maybe I should post a modified version here.  This version is a bit scrubbed of specific doctrine but still delivers the concept I wanted to share.  If any find this controversial just send me a PM and I will delete it without ever indicating who may have had  an issue with it.  If it sparks a discussion of controversy on religion or doctrine, I will delete this post and any posts that address this post.  I consider this post pushing the edge of the line if not over the line and I acknowledge that it may be a mistake.  I guess the verdict will be by determined by the reaction of the members.   

A few thoughts on your post.

I am a slow typist and in the midst of a few family situations that need my time so I will be blunt and direct to save time.

You express a feeling of total abandonment and a loss of a sense of value for life because of your problems.  This expresses a total misunderstanding of faith and God's plan.  Bad things do not just happen to Godless people who do not pray.  What faith would it take to believe, if religious people were the only ones not being blown to bits on the battle field, rotting away from cancer, or getting raped?  The scriptures teach us by example.  The example is that even when we do what is good, trials abound.  The example is to do what is right in the midst of trials, to find peace in a closer relationship with God, to be a follower even when life is not running smoothly.  Are we more special than the apostle Paul who was stoned, and beaten within an inch of his life many times while preaching.  He was shipwrecked 3 times and floated at sea for days on one occasion, and was finally executed.  John the baptist who Christ said was the most worthy of men, was beheaded.  According to tradition, when the apostle Peter was crucified he asked to be hung upside down because he felt unworthy to die in the same manner as his Saviour.  He did not get mad at God for not saving him from adversity.  One can not have a passing acquaintance with scripture and not see that there has never been a hint of promise that the Godly would have an easy life.

We came here for trials, to prove our faithfulness amid trials, to serve others as Christ did, to show our love of God and gratitude for all that is good and right in our lives not to obsess over the part that is not perfect.  God did not send a penis to earth and say " go forth and have a great time with the chics".  He sent a man to earth and said "Come follow me".  You are that man.  You are not your penis.  To devalue all that you are by obsessing on your penis, is to have misplaced values and a misdirected life.  Joy and peace amid trials come as a result of having Godly values.

I find when I feel sorry for myself for any reason that it is usually a sign of selfish egocentric behaviour.  Go to a children's hospital or a cancer center, or an old folks home today and say, "I need to help someone".  Lose yourself in service to others.  Lead a rich life of lightening others load, and you will gain some perspective.

You asked for input, this is mine.  I promise that it works.

Good luck my friend.

PS: "Be kinder than necessary, for everyone you meet is fighting some kind of battle"  You are not unique in your struggle with problems.  As yours are hidden from others, theirs are often hidden from you.

Hawk:

In view of the post made by Ocdirishboy I think your reply to him was absolutely proper, and beautifully written. Everyone who comes here for support will be different, with a different set of circumstances and fighting different demons. To have a policy so strict that it imposes restrictions on a proper response to a particular post would make the forum sterile and disfunctional.

I think you made a post that will give comfort to Ocdirishboy and I second every word of it.

Larry

Hawk:

I can say AMEN to your post several times. Right on with the advice to ocirishboy. I sent him a PM also.

Old Man

Hawk,

I loved that quote "Be kinder than necessary, for everyone you meet is fighting some kind of battle".  If it is yours, could I use it?  If not, do you know where it came from?  That's basically how I've tried to live my life, but this quote expresses it wonderfully,

Steve

Hawk,

I cannot imagine anyone finding fault with your words of encouragent.  Your words are even more inspiring given in spite of the trials you are facing now.

Liam

Hawk,,your response was right on in every way to ocdirishboy, and very well written..I say Amen to it and i also have sent him a PM saying about the same thing....Not sure if he know's about the private message button on his screen though....

Kimo

The phrase inside of quotes is not mine.  I do not know who originated it but it was on one of the many emails that those with good intentions send all over the internet.  It phrased a philosopy I have often heard and thought about in a way that is easy to remember.  It does so with a powerful ring of truth.

I think the author is unknown.

Thank you all so much.  I left to go out of town almost immediatly after my last post so I did not get a chance to get back on until tonight.  However, I have read every one of your pm's several times as well as all of the posts here.  thank you all for your words of encouragement , I can't believe the responce and how much you all have been there.  I'm gonna take a day or two and think a little bit because I want to give all of your thoughtful posts/messages the thought out responses that they deserve, and I need to clear my head a little.  But I will be responding to all of you, especially Kobold.  thank you so much, you all mean more to me than I even thought possible.

This is kinda freaky!  After asking Hawk about his quote a couple of days ago (Be kinder than necessary...), I was sent the following by a business friend of mine...

QuoteJust up the road from my home is a field, with two horses in it.  From a distance, each looks like every other horse. But if you stop your car, or are walking by, you will notice something quite amazing.

Looking into the eyes of one horse will disclose that he is blind. His owner has chosen not to have him put down, but has made a good home for him. This alone is amazing.

If nearby and listening, you will hear the sound of a bell. Looking around for the source of the sound, you will see that it comes from the smaller horse in the field.

Attached to her halter is a small bell. It lets her blind friend know where she is, so he can follow her.

As you stand and watch these two friends, you'll see how she is always checking on him, and that he will listen for her bell and then slowly walk to where she is, trusting that she will not lead him astray. When she returns to the shelter of the barn each evening, she stops occasionally and looks back, making sure her friend isn't too far behind to hear the bell.

Like the owner of these two horses, God does not throw us away just because we are not perfect or because we have problems or challenges. He watches over us and even brings others into our lives to help us when we are in need.

Sometimes we are the blind horse being guided by the little ringing bell of those who God places in our lives. Other times we are the guide horse, helping others see.

Good friends are like this......You don't always see them, but you know they are always there.

Please listen for my bell, and I'll listen for yours.

"Be kinder than necessary, for everyone you meet is fighting some kind of 'battle'."

This sounds a LOT like us all here on the forum...

I'll ring my bell and listen for yours.

Steve,, would you be so kind as to e-mail this to my private e-mail,,this is really great......My e-mail is    kauaiman005@yahoo.com

And thank you for posting it , what a message......Kimo

So it's been a week... a little longer than I promised for my reply to your guys's great posts.  Sorry.

I realized the point when this became an issue for me.  At some point several months I stopped asking for God to heal me.  Instead I grabbed hold of a phrase and let it ruin me.  "Normal".  I stopped asking for healing, and started asking to be normal.  This immediately game be the feeling of....I can't think of the word but deserving works.  I was owed something.  I deserved to be given the same "member" as everyone else.  And instead of feeling down and deppressed by this I got angry.  I felt like God owed me something because I've spent my whole life (I know not that long, but it's everything to me) either working for him or preparing for a career of working for Him.  So i felt like I didn't deserve this.  It's not that I didn't believe in him, I was pissed at him.

When I let these feelings start, they took over and grew and grew.  I ran with that phrase and just kept thinking "All I want is to be normal, that shouldn't be to hard!" angrily.

Then this weekend I'm at a worship conference.  Something that I signed up for long before any of this happened and there was no getting out of it.  And I've kind of realized the immaturity of my thoughts and actions and am trying to change.  Here in lies my current struggle.

I realize now that my penis is not worth throwing my life away.  And this is part of the reason (as Old man and Hawk put it so well) that I have felt like God doesn't care.  He created a penis to be used for pro-creation, the orgasm is just a nice side affect.  And if I'm close enough to a woman to marry her, then she obviously won't care about something like this.  So God doesn't care, he cares about me, but he doesn't care if I embarass myself in front of a girlfriend on the second date (I didn't ...but go read "Women Speak out about Peyronnies if your curious about that one...oops ya'll were right.)  because I'm trying to have sex.  Because he wants me to wait anyway.

So help me.  I'm still struggling with anger.  Even though I realize it's wrong and I don't deserve anything, I don't even deserve the salvation and the cross (much more important than a penis).  I'm at this conference (second day is tomorrow) trying to worship, wanting to worship, it;s a worship conference lol.  But i keep getting reminded of this and getting angry.  I try to block it but the anger is still there.  I feel like I need to forgive God to get closure on the anger but that's bad for two reasons.  One I can't do it because I'm still angry, two even I'm smart enough to know that I should never be thinking of forgiving God; He's perfect.

It's like I have two halves of my person fighting each other...one's intelligent enough to know the truth...the other is just angry at the world... Help! (any help tonight would be awesome so I can check this tomorrow before the conference...but if not I undrestand its 140 in the morning (here))

Hello Ocdirishboy, just a note to say your on the right track,,it's ok to get mad at God and tell him so, he's a big boy and can handle it....The important thing is that your talking to him, he wants you to talk to him....He created you for his pleasure. He also is the one who created you and he knows how to fix you...I am an artist,and when something breaks that i have made i know how to go back and fix it,,same thing goes for us, he can fix us, but you have to ask and have faith and be patient too...Somethings happen right away and somethings take time...So, keep the faith and keep trusting, He never fails.............He also expects us to do our part by being part of this forum where you can get counseling and support from a bunch of great men, we will all be praying for you, blessings to ya man,,,Kimo

hi everyone. i was wondering if anyone would be willing to correspond with me through PM's about their experiences with Peyronies Disease and to hear mine. i feel like it would help me out psychologically to tell someone the things i have never told anyone and to hear first hand that they may be feeling the same exact way. i understand that this is what this section of the forum is intended for, but i'm not as courageous as all of you in telling my story so openly to the forum, even if it is anonymous. i would really appreciate it. and if any of you would like to tell me anything that's difficult for you to deal with, im a pretty good listener. keep fighting the good fight. -DS

DS:

I would be glad to work with you in any way possible with your Peyronies Disease. Have had the mess for over 50 years myself and seen many things up and down with it.

Just PM me or email me at the address shown in my profile and I will be glad to assist you in any way.

Sincerely, Old Man

I've been struggling with Peyronies for almost three years now and at this point I am seeing really great progress.  At this point, if things keep progressing the way they are, I hope to be free of this problem six months from now.  What is really working for me:

1)  Lifestyle adjustments ... avoiding things that are just bad for my general health.
2)  Diet adjustments ... I have found DASH diet recommended by my doctor to be a great place to start.
3)  Research based supplements ... I have found broad spectrum E especially effective and also stuff that stops inflammation in its tracks.
4)  Endurance (aerobic) exercise ... strength type exercise like weigh lifting doesn't work and may actually be bad for peyronies.

There are other effective strategies including VED right here on this website, but I am sharing what is working (and working well) for me.  I am also convinced that Pentox is absolutely the best drug ever for Peyronies and if you have a severe case, you should pursue it.  In any case, I am simply here to tell all of you posting on this thread that this is not a hopeless condition.  I am getting control over this disease and I know you can too.  You don't have to pay a lot of money to people promising instant cures, those are all just a bunch of BS.  All the information you need is right here on this forum.  All you need is determination and patience.  For people with more severe cases it will take longer, but most of you can knock this thing out with all the information and effective solutions that are available these days.  I wish you all the very best and pray that you will not listen to the gloom and doom crowd or the rip off artists, but that you will simply use the information at your fingertips on this very forum to defeat this ugly disease.

- George

Added By Hawk: If you wish to respond to the diet of exercise portion on this post, do so at this link https://www.peyroniesforum.net/index.php/topic,488.0.html

I think I've figured out why this desiease has had such a huge affect on me personally, and most others as well.

It's the hopeless feeling.

When I was younger, I never let it really get me down beacuse I knew, well I thought I knew, that I could always do something about it.  I knew I could try some of the treatments (Vit. E or whatev), and if that work that surgery was always a good last resort.

But now.  I've exhausted every other option.  I've had the sugery, there's no where else for me to go.  And I know that many of you haven't had the surgery, but still many of you do not want it.  And even so it's not a guarantee (obviously), and it won't make it perfect.  It makes it better.

There is no oral treatment that works for everyone, the creams and VED are sort of successful for some.  But there is no answer.  I am, like most men, a doer.  When I don't like something I change it.  When someone bothers me I tell them.  When something needs fixing, I fix it.  This is one of my most admirable qualities, and one of my biggest faults.  But now, I have probably one of the bigger problems I will face in my life and there's nothing I can do about it.  So, now not only do I have this issue which is depressing enough, but I'm not happy because there's nothing I can do about it.  So I feel completely hopeless.  All I want is to be normal like the other 99% of men (Acutally I figurd out today I'm in the bottom .03% of men.  Because I'm the 1/100 with this issue, the 1/10 with congenital rather than peyronie's, and the 1 in 30 who have a failed surgery lol).  But there's really nothing I can do about it.

Not sure why I wrote this.  I don't really have a question or something to tell you guys.  This has just been on my mind and I was curious what others thought about it.

Irish

Irish:

You have now arrived at a point that you can admit you have a problem and seemingly cannot help it in anyway, that is good. Opening up and talking about it is one of the best forms of therapy for Peyronies Disease that one can do. I have been through most the things you talk about except for the surgery. Having had so many surgeries on other parts of my body though has taught me that bringing the problems out in the open helps more than anything. It also helps to know that others are in the same "boat" and know what you are going though.

So, hang in there, you never know when something will come along that works for you. Just keep trying things.

Old Man

Irish OCD,

I have the same exact feeling as you my friend, the hopelessness hurts me severly each and every day I wake up, Peyronies Disease is the first thing that pops into my mind.  I do however hold onto hope in the form of future treatments such as Auxillium, Stem Cells, and the VED I'm currently using.  With everything seeming so far away its like a challenge of simply lasting long enough to be around to try the new treatments.  Fighting off the feelings of hopelessness each and every day.  I've found the best way to do this is to try and keep as busy as possible and have a very active and aggressive protocol to attack peyronies so you can at least say you are doing everything you can do!  Besides this I've been volunteering to help others who are in need and have less than I do- this is a good way to feel like you are giving back to a community in need and see that some people have it much worse than you do my friend.  The pentox is the newst thing I am now trying I've seen encouraging results with this so I'm going to stick with it, and keep my positive forward looking attitude!

ComeBackid

Ya, that's part of whats killing.  None of that will help me.  I don't have peyronies.  My penis was built wrong.  It's supposed to be way curved.  No pill will fix it cause theres no scar.  And no doctor will do a second surgery because they're all afraid of shortening and loss of sensitivity.  So theres nothing to fight for.

Well as they move forward with advancments in the stem cell arena and other surgical processes a cure or the possibility of improvment may emerge for you there.  So there is still something to pray and hope for my friend.  There will also be future advances in ED drugs to if your having any problems with that.  If you can have sex fine, no doctor would do surgery on you anyway to be honest, most good doctors aren't quick to do surgery... key word there GOOD.

ComeBackid

Jon,

I have been thinking about your post a long time.  We on the forum have seen this story repeated many times.  One of the younger members picks up a girl for a one-nighter and the equipment fails (usually a surprise).

I'm not going to try and interpret the meaning.  I don't know if this is unique to men with Peyronies-like symptoms. I'm just going to "put it out there".  You can know it happens frequently to other guys. 

What I don't hear (I can't say it doesn't happen) is of this particular type of ED in a committed relationship.  Maybe anxiety?  Who knows?

What would you do?

I will provide a bit of background about myself :

I am almost 33 years old. I've had severe peyronies from the age of 30 (almost 3 years).my penis is pretty much with lumps and progressive fibrosys.

the last year or so I have lost length and girth (from 16.5 cm I have been left with about 14 or less and still in a progressive sate - and in girth as well).I am about 80%-85% impotent. it means I can have an erection (a weak one) only by constant stimulation by my hand, I lose it very quickly if the stimulation stops even for a moment.intercourse is absolutely impossible - I can not maintain it.I still have pains in the left side of my testicles .especially when masturbating more then 10 minutes.

I have lost A girlfriend and many more potential girlfriends. I am  ironicly very good looking, (it is like a joke of the destiny - being handsome and having skills like good education and so - but not being able to be with girls who hit on me all the time).

In the past I had many girls. I used to be very active sexually.and had huge sex drive. it seems that in many aspects my sexuality used to be my drive and motivation for many other goals in life (even things like work and study ).I used to be the orginizer of parties,and the one who gather the gang. my friends used to be jelous about my role in social life and about the girls.

Now - for more then 2 years I am kind of outcasted.
I avoided social life,as I was reluctant to tell people about it.I was so ashamed.I lost many oportunities regarding career options for I was too depressed.in about a bit more then 2 years I have lost everything I have had,including great deal of money in my savings (about 30,000 US $),as I used to be self employed,and haven't been working since the deterioration of the Peyronies Disease.

I have spent thousands of dollars visiting many doctors ,so called "experts",whom have provided me with nothing but a gloom or temporary illusions whatsoever.

Have been through all medications - pills,injections,tried the tension ring which was painfull for me and might have worsen my condition. nothing was really helpfull. haven't been dating for almost two years of loneliness.

At the end of the day,the bottom line of my case,being 33 years old and single,and having this severe condition,I have basicly 3 options :
1.to live all my life alone
2.to live with a woman without sex - which is kind of silly to me.
3.to make an implant which will cut me off to about 11 cm in the best case (if there are no complications or so),plus it may cost about 10k in dollars all together.
4.to use the ved (vacuum erection device),in front of a new girl - an option that I can't emotionaly use.

Needles to say,I am totally depressed and helpless consequently. I am kind of in a deadlock.I do not know what to do.

Socially it kills you as well : how to explain to your friends why you are not dating anymore ? how to see healthy people without putting yourself down immediately ? how to answer when people want to introduce me to a nice girl ?

I would appriciate any input from someone who is about my age more or less,about the same marital state (single like me) and same severity of peyronies (impotence,fibrosys).

In addition I would like to ask another question :


Simple but hard question (happened to me yesterday):

Again I made a silly thing. I happened to talk with a very pretty girl yesterday (she started to talk with me). she gave me a phone number.

I don't know what to do. I would be dying to be with her but what can I do ?

to go for a date and then even if she likes me,what shell I say after 3 dates ?

To tell her : I had a terrible disease - my penis is full of fibrosys,short - 14 cm or a bit less,and not lasting for more then a minute without constant hand stimulation?. I can have only soft erection - not all the time.doesn't last long.no sponteous erections at all today anymore.if I get arosed with the girl - there is no erection at all when I hug a girl for instance -not close to like it was before.
I just get some liquid out when I am arosed.when I masturbate,my weak erection doesn't last long without constant intensive stimulation by my hand.
so what can I do ,in order not to stay alone for life ? to tell a girl about all this matter which will be deteriorating more like usually it happens with peyronies ? (not that it's not severe enough today).and how can you  tell her: in addition I am not well established financially like most people my age and not earninig so much like I used to,because I am so depressed over my Peyronies Disease ?

I do not know. maybe some girls could come to terms with it ? maybe yes maybe no (to live with 30 years old guy who is impotent?)? I am pretty scared and shiverring of telling a girl about all this .

on the other hand I am dying to be with a girl again - even with my current non-functional penis. even in my poor condition . what shell I do ? implant ? (11 cm pump in this case)? go and tell a girl (without any pump) ? be frustrated forever without any intimacy ? I have to solve it somehow.

Being alone is so bad.I don't care anymore about my own pleasure. I care about being with a woman .intimacy. I don't know how to unrevel this frustrating cycle.

If I knew (in advance...)that a girl is tolerant and she knows about stuff like my disease in advance,maybe I would tell or something - I am pretty locked - like in being in jail ,without people knowing that I am so f'~c<+d up over this.

My problem is that girls are hitiing on me and I am so used to what I was once,I want it so much so I can't help talking with girls flirting like in the past. wanting to be with a girl desperatelly.



Dunno what to do. I dunno how to wake up of this nightmare .

There got to be something in this bloody world. it is so unfair.

Give me an input if you can
my e-mail is : anipurim@yahoo.com

Best regards
Thank you in advance

YoungPD

man.. I feel your pain. believe me I do. Young guy, fairly attractive, used to have a huge sex drive, life of the party etc.. that's all me too.
Depressed? yeah. I'm in therapy and on antidepressants, and there still isn't a day that goes by I don't think about sticking a gun in my mouth.
Single. Yep. Got divorced last year, my girlfriend just broke up with me a couple weeks ago. Am I lonely? Yeah I am.
Here's the thing tho, the girls understand, unless they're complete bi+If what you want is intimacy, you can still have that. Intercourse isn't required. It's a bonus, to be sure, but not a requirement. And like I said, there's ways to work with too. It takes some openness, honesty and creativity, but it can be done.
So flirt with those girls, have a good time. There's no way to know in advance. And if it's an issue, well, they weren't good enough for you anyway, and it's their loss. For F^@%'s sake, I know it feels like the end of the world, and that no one is going to want you. But that's simply not the case.
I don't know what else to say. But when a divorced quasi-suicidal, depressed, Peyronies Disease/DC, diabetic 28 year old tells you that life will be ok and that you'll be fine and that there are women out there who will be with you, you really ought to pay attention. He knows what he's talking about because he's living through it the same as you.

That's all I've got. Now go have some fun.

feel free to shoot me an email or YIM anytime
djdissent@yahoo.com

-jon

YoungPD,

Thanks for the post.  I hope the wisdom available for exchange on the forum will not be hidden in email were they will deprive others that are too shy or deprssed to post. 

You are in the right place and rest assured, it will get better.

Hi again and thank you all,you are so supportive and wonderful. maybe nobody like us knows how valuable can it be for a victim of this disease to have some emotional support,especially as we are all men in a world in which weakness of a man is often left not mantioned. especially in this perticular pain which none of us ,I guess, can expose openly,in front of his friends or so.

To Jon : I  really appriciate your efforts to help and your genuine kindness ,being so frank and sharing your own experience with this damn curse with which we are dealing .I feel your pain too. don't ever put the gun there.it is one way ticket.I have been suicidal myself for the last year and still have many days like that,however I know I wont do it as I am afraid,and besides ,it's a strange basic instinct,that people ,at least the lion part of them,will prefer living ,rather then dying,even while facing the most devastating moments in their whole lives.some people are paralized but they keep a good grip of life.sometimes it's a mistery for me.as a matter of a fact there are many days I keep asking myself why am I still here. one wise man (one "internet friend" of mine who suffers severe peyronies as well) has told me once ,when I asked him wether he had ever considered that option of suicide ,he said: I prefer being in a long bitter hopeless struggle but staying alive,then being dead. I guess it is just a basic instinct.

I admire you (Jon) for being able to be with a girl even in this condition ,nonetheless, I can't say I can come to terms with my own condition,nor can I concieve or bear ,at least at this point of my life,the possibility to confess my tragidy in front of a girl,though I know you are absolutely right : some women may actually live with it peacefully.

Yes,mate,it's frankly all about us - a tragidy of having a man's pattern of thinking.stiff, or rigid attitude.however ,we (as men ) have a full "moral" right and 'liscence' to feel angry,miserable,cursed,frustrated and ..every thing else - you name it.

It is only natural for a man ,especially a party guy like you or me,to find it extremely awkward to alter sharply,abraptly, the whole of your well built  conception regarding sex,relationship,and all that surrounds your social life.
I mean ,to think from now on so differently about women. instead of shiverring with all your body and having at least good sex,you have to start thinking of a woman in such an quasi a-sexual way or the like. almost as if I were a convict ,hermit or so,let alone the inferiority sense and helplessness which are a sense of impotence by themselves for a man.

I Used to orginize parties and had girls around in every ocasion ,some were having fun with me in very wierd places in a bar.I was a real man - I have been in those far days so proud ,and never afraid of any ocasion that might has ended up all of a sudden in the girl's bed.I could trust my manhood without any excuse or tears or inferiority complex.

Today ,if a girl flirt with me , my mind goes like in cycles - the previous "me" is kind of still there saying : "hey - she is so sexy,gorgeous ,she wants you.you can have fun together-real sex and fun, like old times " ,and then - like a waking up from a dream (a nightmare - to put it in a better word),I remembers too damn clear and eloquently that I am impotent ,so obviously the  "glory days" are gone. like a 90 years old speaking with gloomy eyes about his lost youth. but hey ,I am so young.too young for this.just turning 33 soon.It so unfair.it shouldn't be like that. I should have been in my best years now.

And if that's not enough I lost all my money and "proffessional" prestige,let alone social life.I am crashed here too...

Even if women will want "just to cuddle" (or with some foreplay I can do for her ,something I used to do just in order to wait for the "real show" but I was doing it as well.I knew ofcourse what you have said about making it the other way around for a girl...).but anyhow , comparing to normal relationship,for me it feels like,coming to a restaurant without being able really to eat,except for some small bites that someone chew for the person (as he can't eat).

On one hand, I would like to have a girlfriend,but its kind of not the real thing.one of the most bonding thing in my previous relationships was sex.it was so importent . being a stud once,and being used to my previous pretty high self esteem, feeling like a real proud man,the one who can have a real party joy and fun in life with girls and social life, I am now in a pool of agony darkness shame and despair.

When I go to a club today ,I am not happy anymore,unless I use some alcohol or so.Without it I just fake smiles. if a girl comes to me, I sometimes avoid the situation,since she knows me from other days,consequently it can end up with sex which I have to avoid now. what a world ... never have I thought I would have to avoid sex.

Even if she does understand, I will still be,all my life with a fair amount of insecurities either regarding her,or with my new social abilities.

I am kind of  locked in a cage. inside I am the same party boy.same boy who liked the good life with all the happy hours.now I can't even smile.it has been more then a year since I lately had a real happy smile on my face. I wont have one anymore whatsoever.

And in my home town ,there is always a possible "bonus" I have to mantion. I'll explain what I mean by a little story I had: a year before my Peyronies Disease started,I have been with a girl for some nights. in one of our sessions,we were speaking about her x-boyfriend. apparently ,he was in the bar the same night.and while we were in bed she was telling me deep into details,openly,that her x-boyfriend was an impotent (even though I knew who he was from the bar,she didn't mind). similar cases of "confessions" happened to me as well.girls talk.they talk about everything,more then us,I know.
so thats another thing here,except for unbearable confession in front of a new girl that I can't either perform or funcion as a normal man.and then illusing myself as if I am in a real relationship with a woman. me and my shattered ego.I don't know what to do about it.

I admire you Jon.I just don't know if I could or would do the same. some people say that if a person was once,one hell of a chess player, for example,and all of a sudden he became very very bad one,he might give up the game in advance.not playing a game he is a shame when he plays it today.

I appriciate what everybody say.you are great friends,and a wonderfull forum.
I am sharing my feelings and hope it's not too much for somone,if so I deeply appologize for it.
All the best
I will keep everyone informed.       

Young Peyronies Disease,

You mention that you cannot keep an erection without constant masturbation.  You do not offer any evidence that you could not keep one during intercourse.
Also, you do not mention if you have tried any ED drugs.

It almost sounds like you are stressing so much about what you think will happen that you are causing it.

I suggest you read the entire "Erectile Dysfunction" topic or the one in our "Newly Diagnosed" board that can be found immediately under this board on our forum's home page.

I was at a seminar this weekend, and heard a fascinating story. The presenter had worked to help heal the pain and suffering of a young woman from Rwanda. She had hidden in a cupboard while listening to men kill her three children, then her husband, and then her brother.

He said that she was not mad at the men who had done this, but instead wanted to understand it so that she could work to prevent such horrors from ever occuring again in her country.

She wasn't mad...

He said pointedly: "If this did not 'make her mad', then surely nothing can 'make us mad'. Nothing can make you mad."

I think of that story when I hear about how others go through this disease. Young Peyronies Disease - I hope that you can hear something in the messages that you are getting. There are others who are going through something a lot like what you are, but they are not suffering so much.

So I think you have a choice. I think the choice is more than killing yourself versus not killing yourself. Instead of finding a way to survive - which may be all that you can do right now - I hope for you that you can be able to thrive.

Good luck.

Tim

First of all,thank you all again.

Tim,I am in the seminars business as well,and I have to agree with you it is quite helpfull.my sister runs coaching seminars in which I take part as a lecturer sometimes.it helps encouraging oneself.

I have days in which I tell myself : "I have to fight back even though there is quite nothung to do in order to fix it",and then,there are days I see a pretty woman and I collapse for 2-3 days again,knowing again what I have lost in life.

It is indeed a daily fight. in my age and marital state,it's a fight to convince myself to smile.to convince myself I might be one day close to "happy" ,like I have been once.I am not talking about surviving ,because suicide,today, is out of the equation for me.I wont do it.I just want to be happy again which seems quite difficult for me today.

To Hawk : I have of course strong evidence that I can't have any intercourse.  I am not that quitter as it seems here....I am just at my lowest point.
I have tried almost everything and went to every expert,until I have found out ,(in any scientific source)that once your tunica is pretty destroyed and full with fibrosis,in our days ,there is quite nothing to do to restore it. (except the implant or VED before each and any intercourse )

I have indeed tried to go to bed while having peyronies. I have my own experience with pills (Viagra,Cialis and so),nonetheless I haven't tried (except for once - while having echo-Doppler test),the injections of trimix and the like,as I have heard from doctors,it is not highly recommended for people having progressive fibrosis in the penis,since it is more likely to worsen it.

I went to bed with some girls while taking pills,and my penis lasted for about 2 or 3 minutes or so,before collapsing again.that was almost a year ago.since then my Peyronies Disease has deteriorated sharply.

I have tried at home the tension rings. it was painfull for me,and besides, I had problems with coming to a girl with it.in addition it can harm your penis as well ,as some uros told me.

Sorry to say,today I am quite expert(more then all doctors...) for the entire mechanism of erection ,how exactly does it work,and consequently,what may or may not help improving it.

Once the tunica (the sponge tissues) is full of fibrosis,the only possible solution provided by the science or the doctors today is the implant or the VED which is quite humiliating especially with a new girl.
You have to be very brave and tough to use the VED for dating. I don't know how people can pass this stage of pumping in front of a new girl,however I admire the courage.

All of us are really long enough in this damn boat ,scoring the internet and reading every single available detail about Peyronies Disease and ED, to know that unless one can still have erections somehow,or is in a long term marriage with kids or so,we are quite doomed for life to,having no real choice but accepting the new condition and trying to live with it,without expacting much to change.
I will provide you soon with my own conception and analysis regarding the question : why after 400 years of it we are still with vit. E and tension rings. (will be provided later...)


Talking about happiness? I don't really know .it differs from one to another and depends really on one's perception ,auto-suggestion and inner mental strength.

If someone here is impotent,young and single and still 100% as happy as before,I would like to hear about it ,so that I will learn the magic...and I will give this person all I have ever gained in life.

In my case ,I have lost at the same time some financial abilities,ambitions,lust for life and much more. for instance,it is very difficult for me today to motivate myself to make money.from a very ambitious person I have become a person that his spirit shows constantly deep reluctance to take part in many other aspects of life.

Generally you are all right.your attitude us the only possible attitude in order to cope with it.I truly know that.

It reminds me the remarkable book of Albert Camus "The myth of Sisyphus" -in which the author claims that the hope and despair grow on the same ground,meaning sometimes ,giving up the fight,even though it might seem lost in advance,is like a "philosophic suicide",like losing the right for hope as a person. (sorry for being too philosophic...).

And in order to finish this post in a positive way ,I will tell you about an interview I have read lately :
Some journalist have asked Larry Flint a question (Larry Flint is the founder of the porn magazine "Hasler". when Flint was 27 y/o someone tried to kill him by a gun and consequently Flint became paralyzed for life ,from the belt and downwards). so the interviewer asked him : "how do you cope with the fact you are phisically so disabled ?" so Flint said : "I try not to deal with things I can't change or control in my life".
I think it is a hell of remarkable point of view.I want to clap my hands for that (seriously.I am not cynical here). I wish I could think like him.

I am sending my appreciation and may god bless you all.

I will keep posting (if you can still stand me......)

YoungPD


The last thing I figured out i

I'm bummed. I posted a long post, and since it had too large an attachment, it did not post, but when I followed the link "back", my words had gone...

Well, too bad Young Peyronies Disease, 'cause I had answers to all your problems!

First off I had a picture of the repair job that could fix the severely fibrotic penis - but it was too big.

Then I had all sorts of good advice, but if I was not meant to give advice today, well darn.

But I can post a summary of the abstract that is relevant to you. Here is the safety net that you have - a repair job for the severely fibrotic penis. It can be fixed it appears. So you have the safety net under you.  Now all you have to do is work on your happiness and well being. Tough work in my opinion.

Tim

Here is part of the picture...

Here is the summary of the article:

Journal of Urology, Vol. 166, 1782–1786, November 2001

RECONFIGURATION OF THE SEVERELY FIBROTIC PENIS WITH A PENILE IMPLANT

FRANCESCO MONTORSI, ANDREA SALONIA, TOMMASO MAGA, RENZO COLOMBO, ANDREA CESTARI, GIORGIO GUAZZONI AND PATRIZIO RIGATTI

From the Department of Urology, University "Vita e Salute-San Raffaele," Milan, Italy

Purpose: Using evidence based methods we prospectively evaluated the impact of a new surgical procedure on penile deformity caused by severe cavernous fibrosis.
Materials and Methods: In 10 patients with severe penile curvature, shortening and impaired penile rigidity due to fibrosis of the corpora cavernosa we made multiple relaxing incisions of the tunica albuginea and subsequently placed a 3-piece inflatable penile implant. Patients were evaluated before and after the procedure by the International Index of Erectile Function and several general assessment questions. Preoperatively and postoperatively we measured flaccid and erect penile length.
Results: At the 6-month followup all International Index of Erectile Function domains were significantly improved compared with preoperative values. Average penile length was increased 2.3 and 3 cm. while flaccid and erect, respectively, compared with before surgery. Complete penile straightening was achieved in 9 of 10 cases (90%). Surgical reoperation was performed in 1 patient (10%) in whom the implant was removed due to scrotal infection and in another (10%) in whom a further single relaxing incision of the fibrotic plaque was needed to attain complete penile straightening.
Conclusions: Patients with severe penile curvature, shortening and impaired penile rigidity due to penile fibrosis may be offered this surgical alternative, which proved to be effective and safe in our preliminary series.

Yikes Tim!  :o

What a high impact dinner-time read!  Thanks for sparing the color photos!


To your previous post on choosing our attitude and response, thanks for the great post Tim.

Thank you ever so much Tim.
It is kind of stunning information for me,as previously I have been in touch in another forum, for people who had undergone penile implants.all of then reported they have lost about an inch more or less ,after the process,comparing to previous state.

So ,this report with which you have provided me,contradict all my previous info.

Maybe the others were misjudging the results? I do not know.
Further investigation is surely needed ,in order to check the disability of this option for me.

However ,in my case ,since I don't have any extra single inch to lose,if I would like to function again,it is highly important wether you lose some or you stay at least the same as you were before this operation.

I have to investigate it a bit more to be sure.but it is indeed a step forward if it does regain lost size or at least keeps my current size.

If we have some people in the forum who can provide me with some more solid facts regarding this option (examples,experience and the like),it can be more then a help.

Moreover,does someone have a clue about costs of it and well known doctor who operate it ?

Thank you for th help.my dearest appreciation here.
One more thing : as an answer for you Tim,I am a happy person by nature,if somehow I would be able to restore my sexual ability (not with a 10 cm or so...),it may bring back my happiness too. that's the way it works for me ,mate.

By the way : would you go for it ?

Best wishes
YoungPD

youngPD:

Look for a PM from me that I sent earlier this date. Would like to add my 2 cents worth on the subject of implants. There is a rule of thumb on this forum and others that an implant procedure is the "last resort" toward correcting Peyronies Disease. Since the procedure is not reversible, make definitely sure that you actually need the implant before proceeding. In addition, get one, two or three opinions from qualified uros first, then decide if it is for you.

In my work as a counselor for prostate cancer as well as Peyronies Disease in patients referred to the American Cancer Society in my hometown by local uros, I get to talk to a lot of guys with varying Peyronies Disease, ED and other men's health problems. Have had access to at least 5 guys who had the implants done and none of them reported any major problems. Also, none reported loss of size in either length or girth. You have mentioned that you had seen that loss of dimensions was a problem, but I have not seen that in my work, etc.

My mother-in-law's last husband had an implant done at age 75 and he reported great success with the surgery with no loss of dimensions and it worked perfectly for him. However, he did not as far as I know, have Peyronies Disease, only ED. The known ED pills did not work for him. It was decision to have the surgery done so that they could enjoy a sex life again. This is only one instance, so again, be careful in making your decision should you go for an implant.

Old Man

Thank you sir ("old man").
Your work is quite relevant to this topic.
What would you do having 14 CM (after shrinkage,had 16 once) with severe fibrosis. would you go for implant even knowing you might end up with 10-11 ?(can a woman be pleased with such ?). I am afraid to lose additional size as well.

Thanks in advance

Young Peyronies Disease,

My point is not that you should run out and get the implant. My point is that you have options.

Now, I argue that your work is to start to heal your wounded heart, and not to "fix" your penis. Sure, try some of the options we are proposing to heal - it might work! But no VED, pill or surgery would make you feel whole again.

Frankly, if I were a surgeon, I would be very reluctant to operate on you because of the high likelihood of disatisfaction with the result. Think of a woman who "has to have" breast implants. Many of us might think "well she really could have been fine if she has just learned to love her small breasts". Yet when it is our own penis, we lose such a perspective.

So my point is that there is a surgical option for you if you HAVE to have surgery. Now that the "safety net" is there, why not try to figure out how to have a relationship with a woman?

I am with a delightful woman and she would be willing to stand by me while I had such a surgery if I needed it. I feel great sadness that she never got to make love to me when I was "whole", and could do more than I can really do now.

I think your first need is to go after the erectile dysfunction very aggresively to find out why you have a problem. If it is profound and real (ie untreatable with medications), that might help you make a choice to go for a more surgical answer sooner. If you want a surgeon for your problem consider the first author of the article I referenced.

Tim

Hi Tim
Thanks again.
About the psychological issue you are quite right.however I DO have REAL SEVERE ORGANIC ED (AS A RESULT OF THE Peyronies Disease).I have been to urologists and have undergone tests to prove it.believe me I am not that quitter.....

As to now,except for the psychological affect (of which you are 100% correct),there are the following options for me :
1.to have a relationship under those circumstances ,which underlines that I would have to pass the stage of telling a woman about it and coping with what  I have lost,while I am with her.

2.The implant option (coping with the size issue and to come to terms with the fact I would have a kind of a pump inside my body - but this is the least to deal with comparing to the fears of a failure of the process or the healing process),

3.VED  (and coping with the need to pump in front of a new girl - which I don't know how pass this , i.e how to pass the embarrassment )

I do not discharge your claim about the emotional issues at all. it is a challenge to go through,I am not underestimating it. it is one of the biggest problems.

My main issue is what to do next. I will go to a psychologist soon.then again I have to figure out what to do about the options I have mentioned above,which is an awkward issue by itself.

Best wishes,and thanks again
YoungPD

youngPD:

Well now, size does not always mean satisfaction to a woman. I once had my girl friend tell me that she would rather die "reaching up for it" instead of dying backing away from it. The moral of her statement is that in an old Southern USA term, it is how you use what you brought to the party. Size has become a dominant feature of most men's idea about sex, their ability to perform and what size they have.

I am here to tell you that size has its place, but should not be the dominant factor in one's sexual life. Of course, it is our nature to want bigger and better penises, but you have to be satisfied with with was given you. Losing some of it due to Peyronies Disease can be devastating to one's ego, but you have to overcome that too and move on.

Now to answer you about the implant. Again, I would highly recommend that you get at least two opinions from the best qualified Peyronies Disease surgeons available before making a final decision. I have only been affiliated with guys who had great success with their implants. Others have stated that it was the worst decision they ever made. Since it is not reversible, you should make a very careful decision about that surgery.

Hope this helps, but you have to make the final best decision and probably the gravest one you will ever need to make. We are here to help, so feel free to let us know if there is anything we can do.

Old Man

I think I am going to move the last several posts to "Surgery".

Thank you Old man.
The way through which you always offer a shoulder and help people like me (in many forums),with such a great listening ability and patient,  is really admireable.I appreciate it.

I am going to see another expert soon.
By the way,did you have serious fibrosis when you started using the VED for sex.can it worsen the progression of the Peyronies Disease ?
I Have some pains in the left side of the testicles sac if I masturbate more then few minutes. do you have an idea how to fight that part ?
Thanks for everything
YoungPD

youngPD:

Yes, I had serious fibrosis and a very bad curve downward and to the right when I started using the VED. It took a bit more than 6 months to get rid of most all the sypmtoms. Was left with only a small area that is hardly noticeable by examining the area. I have no problem with erections using the VED. Since I have had a radical prostotectomy that left me impotent, I can only achieve erections with the VED.

The pain in the testicles can be caused by many factors, so it can be related to the Peyronies Disease symptom or it cannot be related. Only a qualified uro with experience with Peyronies Disease and related sypmtoms would be able to diagnose the problem. In my case I had pain in the testicles, but it went away when I started the VED exercises, but I am not sure what made the change.

You will just have to experiment with various treatments in that area to determine if you can find something that will work for you.

Old Man

youngPD

DON'T DO IT

Let me just throw out another idea that may not have been thought of yet.  Yes the implant's seem to be primarily successful.  But......even if you have a successful surgery you will still have to get it changed out.  Even successful implants have to be changed every 10 years or so.  If your young....that could be 7-8-9 times that you have to get surgery again.

Now I'm not saying that implant is a bad idea because of that, but by all means do your list 1-3-2 (Tell a girl, show her the VED, then consider surgery) but explore ALL of your options first.  Let me tell you, having had a worthless surgery, paying over 10 thousand dollars I didn't have for nothing, losing like an inch and a half for no good reason, having my skin re-attached crooked (which pulls my flaccid penis crooked), having an extremely poor-ugly-obvious scar line, a bad suture which ruptured causing a ridiculous amount of pain, and i still have some pain during erections and can play with the broken suture as it hangs around inside of my penis.

I don't say all of that to complain randomly.  When I finished the doctor said that a majority of the problems came because I had the wrong surgery.  I've eexperienced all of this when I didn't need to, and because I had the wrong surgery.  I'm no better of because of this.

While the implant surgery may be fairly simple and successful quite often.  You might be happy right now.  But what happens if they cure this crap 30 years from now?  There is NO going back from any surgery.  I'd give either (not both) of my testicles to go back and cancel the surgery, and I'm not being sarcastic, but I can't do that.  if they cure it in the future, you will be stuck with the implant and be kicking your self.

SO long story...long....I'm not saying never do the surgery, but at least try first.  In this case you will have to either: Explain Peyronies Disease, Show her the VED, or show her the pump which is inside you.  IT's gonna bee awkward no matter what.  So at least go out with ONE girl.

I don't care (and I shouldn't say this as a pastor, and much of the men here will disagree, but it's I'm only half serious.  My intention is what matters)  if you have to go pick up some drunk girl at a bar.  Or take out that fugly who sits behind you in math class who's been in love with you since high school.  Whatever you need to do to try.  Either with or without the VED.  But at least try once before the surgery.  It may be hard, but if the surgery is unsuccessful you will regret not tryign for the rest of your life.

I know I'm opiniated.  Sorry.  but from my experience.  I don't care if you get the surgery....just TRY AHEAD OF TIME, and do all of your research!

Hope that helped in some way...

let me know if i mis spoke or if you wanna know abotu something....that i might know about lol

Dear readers,
     I'm only an 18-year old High School senior, and I have recently had suspicions that I might have Peyronie's Disease.  I have not been clinically diagnosed by a Urologist yet, but I have an appointment in two days to confirm my depressing hunches.
     My ex-gf and I were on the verge of becoming very intimate (NOTE: I'm still a virgin), but I was soon to find out it wasn't even possible for me to perform intercourse.  This threw me into an acute and short bout of depression, in which I furiously researched the internet for answers to my problem.  I ended up learning of something called "Peyronie's Disease".  Well, this was a few months ago, and ever since I've still been researching day and night or whenever I really have the time.
     Thinking about a dark and very unintimate future makes me feel depressed and occassionally consider doing things very irrational and unreasonable.  I've been accepted to UMiami and will hear from UFlorida in a month, but college sounds like it will be filled with unfulfilled dreams and just observing my friends with their "great" successes with women.  I'm too embarrassed to tell my parents, friends, or anyone about my possible diagnosis of Peyronie's Disease, possible ED and Impotence, and some sort of congenital curvature that may or may not be caused by Peyronies Disease.  I did tell my mom, which is the first step to betterment.  She's scheduled an appointment with a Urologist, although, I was too embarrassed to even tell her why and was hesitant to make an appointment, but I convinced her eventually to have me go this Wednesday...
     It sucks to find out there is NO cure or treatment that is effective for Peyronies Disease, ED/Impotence, or congenital curvature (I have a very sharp degree of curvature going downwards; 60degrees downwards if "straight out" were to be 0degrees).  Actually, it's really depressing to think about how f'~c<+d up my future will be if I am plagued with all of these, which at the moment, I DO have 2 out of the 3 listed above (Peyronies Disease, ED/Impotence, and curvature).
     After a recollection of my thoughts and what I've typed so far, it seems like this has been a waste and I'm just a bleeding heart venting my feelings and story...  Well, that is the point of this forum, yes?  Well, I guess I feel a little better reading everyone elses depressing stories of Peyronies Disease, but I'M ONLY 18 YEARS OLD!   :'(  I thought I was normal ever since I was 12-years old, but I was to soon find out I am abnormal --- downward 60degree curvature, can't hold an erection unless constant stimulation, and I can't even have sex.  I hear sex can make or break relationships.  I hear it doesn't matter.  I don't know.  I'm young, unexperienced, naieve, and stupid compared to older and wiser men who have years of knowledge compared to my mere 18 years of existence.
    If I have Peyronie's Disease, then I'd most likely get the surgery as if it were a cure-all panacea/supplement that does godly things to your body (crappy analogy/simile).  I just want to be normal and HAPPY.  I guess I have a sufficient length (7in.) and girth (idk and idcare), but what's the point of having anything if it's not useable.  Life is cruel, but, then again, maybe I'm just acting extremely irrational due to my situation and the possible threats assumed onto my "Male Ego".
     Thanks for letting me vent.  I really appreciate it!  Hopefully my Urologist on Wednesday will have some sort of guidance for me...
                                                                                           Sincerely,
                                                                                           NickD

Dear KU

See what the uro says, and if he is a lout, then go to another one.

It is unlikely that it is all over for you in the sex department. Many men "fail" on their first attemopts to have sex, but in your case, you have a difference that seems to be the cause - but it might not be.


Hang in there and see what happens. I doubt that you will be disappointed ultimately.

Tim

You don't say a lot about yourself here but let me tell you what I know from your letter: You are very intelligent; you have good problem solving abilities; you have the support of your family; and overall from this brief letter I would guess that you are one very together 18 year old.
Educate yourself as you are doing. Keep doing everything that your instincts have lead you to.

KuMe,

One other thing to remember...nowhere is it written in stone that you have to have sex when you're 18 (or 19 or 20).  Believe it or not, there are some of us (my hand is up) who for reasons other than Peyronies Disease (shyness for instance) who never had sex until they were 30 (go see 30 Year Old Virgin for the funny version).

Don't feel rushed!  Do your research, become friends with girls (sex isn't always a requirement for a friendship) and keep a level head on your shoulders.

best wishes,
Steve

KuMe,

My young friend, welcome to the forum.  You are correct, there is wisdom here.  Not only about Peyronies Disease but about life.  It did not come easy so listen to it carefully. 

First, if you have been this way since 12 years old, it is very likely that you do not have Peyronies Disease.  You possibly have congenital curvature which is not a progressive or worsening condition.  It is important that you see a very good urologist.  While you look at the depressing aspects of your age, it also works in your favor.  You have a lot of time to resolve this.  Your lack of maintaining an erection my have nothing to do with your physical condition.  The normal stress of a first attempt may have lead to many of your difficulties.

Your greatest threat to happiness and peace of mind is suffering alone in silence as you research every worst case scenario.  I have been there and done that in my youth.  I won't bore you with details, but as a young teenager I convinced myself I had syphilis with no real evidence.  My shallow exploit was not even worthy of an STD  :D  I then read pre-cure era medical journals (antiques) and looked at the photos of advanced brain lesions.  I was afraid to confide in anyone.  With intense research, I succeeded in making my life a hell that overshadowed every joyful moment for two years or more.  I was robbed because I got pulled into a fanatical, self-defeating cycle.

Do not suffer this in silence - You have made good first steps.
Do not rush to find a quick medical solution from a mediocre urologist.
Do not assume you know your fate, your prognosis, your options, or even your actual current condition.

Even with a worst case scenario, you have tremendous life options to bring total fulfillment and joy.
You have real hope of huge medical advances.
You have options for intimacy that you cannot even imagine at this point.
Focus and prioritize.

You are clearly intelligent.  Make this work for you, not against you. Do not allow a physical problem become a psychological catastrophe.  This is a time in which you have many important areas to focus on in your life while this is calmly sorted out.  Excel in these areas and refrain from a defeatist attitude that becomes far worse, and is a far bigger threat to you than your condition.  If it so happens that you have to refrain from shallow college sex, you will survive.  If you refrain from study, social interaction, and building relationships you will not fare so well.

Best regards

Hawk

All I need and want to say for now is, "WOW".  You guys are great...  A really hastey and friendly response.  I think I was just having an overly dramatic phase/bout of depression...  Today I feel pretty happy, I guess.  And, if I really think about it there probably isn't anything REALLY wronog with me.  I could probably ahve sex, but it would be extremely difficult and painful, lol.  Actually, after typing that sentence that sounds like it sucks.  damit.  Thanks for all the support and friendliness...  I'll be back on later.  Cya.
                                                                                                   -KuMe988

Dear Kume

All the other wonderful guys here have already done the job for me,nonetheless,as someone who has been coping with severe peyronie for more then 2 years,though not always successfully, I have to tell you : thats not an easy game to play, but you got to be strong and tough here - you have no choice,mate,otherwise it will eat you alive.you got to fight back every day.depression is the main enemy,not impotence,believe me.being impotent in my case,wasn't as harmfull as the following deep depression I had to carry along with me.

Sorry to repeat the good old proverb : "when the going gets tough,the toughs get going".speaking about being a man ,this is our real challenge in life.the place and time to show we can really represent with respect and honor all the hidden meanings the word "man" stands for ,and it has nothing to do with our penises.

Most admirable men of whom I have studids in my life ,were men with brave spirit who went through miseries which are ten times worst then ours.
Look at Stephen Hoking. he is a real man for me. look at many others,they are coping ,struggling ,never give up the fight.
Yes mate .it's indeed a tough one.you here it from a guy who lost everything in 2 years .I lost the parties,the girls,my business,huge savings - everything. but guess what ,my friend : I have never lost my spirit. yes,I have moaned some days,I have asked the stupid questions of : "why me ?" or "what have I done to deserve this " or other self pity patterns that leads you to absolutely nothing but a gloom at the end of the day.

As someone who can not have a firm erection without constant hand stimulation ,as someone who has lost more then an inch in length and the like in girth ,I will give you some very important advices how to run this battle:

1.NEVER, I REPEAT, NEVER isolate yourself from society. I did it at the beginning. but not anymore.it is a life killer to do so. go out and see some friends to keep your mind busy and normal and healthy,as your mind is basically what you are ,not your penis.your mind is your existence.
1.1 - KEEP YOURSELF AS BUSY AS POSSIBLE.it will first of all provide you with a sense of vitality and may regain your youth spirit. moreover,it will keep you on track regarding other issues in your life,rather then halting it all.

2. Focus on a "can-do" attitude. many many people are mainly moaning (like myself...at least until lately) about the things they can't do,and thereby they lose the vision of real other optional routes they can still chose and enjoy.
For example you may not see all your other great options in life.

Yes,mate,some DAYS IT IS REALY DEVASTATING,but then again,this is your chance in life to prove yourself what you are made of,and I am not kidding.you couldn't have had tougher challenge then this.

Today I tell myself what I ask you to tell yourself too,whenever you are in  depression (try to apply this formula in your life) :"to make your best effort to change things which are changeable in your life,accept things which are not changeable,and I wish you would have the wisdom to distinguish between the two" - this is kind of a very well known proverb.some will say it's a slogan,however it indeed helped me thinking at the right direction whenever I have been down.

3.Last advice I can give you is to help others. it does help when you do it.I volunteer in a place in which I help people with learning difficulties and somehow it helps me to see that I still have a good roll in this world.


Your life may be different then before but not necessarily with less value .

You are mostly invited to write to my personal e-mail whenever you want to vent or even to have a chat.

My e-mail: anipurim@yahoo.com

Best regards and keep your head up
YoungPd

One comment:  GO GATORS!

Good Luck!  You will love Gainesville.  Forget that "M" University ;).

BTW, see a urologist before getting too worried.

Liam

Hello,
I've contemplated over the last week or so as to whether I should even write this post, but I thought, "Hell if I can't talk to you guys about it, then who can I talk to." Let me explain. Those of you who've known me for a while know my situation, but for those who don't I'll briefly explain. First, I'm single, in mid forties and not dating anybody. Almost from the onset of my Peyronies Disease, curvature was never really a major problem. I had some curvature, but nothing major. After about 1-2 years from the onset of Peyronies Disease, it started becoming apparent erection quality was going to be the main problem with my Peyronies Disease and has continued. I'm basing my lack of erection quality on morning erection and masturbation. Based on these two things, my erections are not good at all. Not enough to have intercourse! Since it has been some time since I've actually had sex, I actually really don't know how my erection quality would be. I don't know if the erection quality would be better if I were with a woman. I just don't know?

The reason I've not had sex for so long is due to a few things, but the major factor is anxiety (what if I can't perform) caused by my Peyronies Disease. Also embarrassment (how big or should I say small will I be) also caused by my Peyronies Disease. Before I got this nasty-cruel-screwed- up disease, I was quite the Playboy or Casanova. No problems bedding the women!! And I was with many. Sometime I think this is why I got this disease, God is punishing me for my promiscuous ways. But that's for another post. Back to what I was talking about.

Here's the deal. There is a girl named Debbie I've known for about 3 1/2 years. It is very apparent to me and to others she has a thing for me. To make a long story short, we made a bet on a football game last year. Whoever won would have to take the other to dinner of their choice. I won and just kidding chose a restaurant that is about 150 miles from where we live. However she agreed and said no problem. Even though it's been a year since the bet, she brings it up every 3-4 weeks and says, "when are we going?" This would obviously be an overnight stay and well I don't have to tell you the rest. Now to let you know, I strongly believe she would have no problem just having a casual night of sex with no attachments afterwards. I would make sure of this before hand, but as I said I'm sure she would be fine with it. Yes, I do think she would like it if something did develop out of it, but it is not something she would assume. In case you are wondering, no she's not a whore or loose or anything. We're just friends and she as a thing for me. Here's my dilemma:

Here are the scenarios if I go on the trip.
1) **GOOD**    I surprise myself and perform and learn I can at least achieve a strong enough erection to have sex. Not like before my Peyronies Disease, but better than I expected. Everything between Debbie and me is fine, we had a nice time and who knows maybe will do it again. This way I get some confidence back and know my lack of erection quality based on morning erections or masturbation was incorrect.

2) ** BAD**  I'm not able to perform; however, I won't know if the reason was because of
    a] my Peyronies Disease -or-
    b] was it because I don't really have a strong attraction to Debbie including sexual
        attraction (which I don't, but she's OK ) combined with this kind of "it's time to
        perform pressure on myself." Anotherwords, I was not relaxed and enjoying it,
        but instead thinking will I be able to or won't I. We all pressure is not a good
        thing in the sex department.
   c]  a combination of both a & b

If I were not able to perform I might be risking coming back more screwed up psychologically than before. On the other hand, it may turn out good and I'll come back feeling great. If your wondering about how I would handle it with Debbie if I was not able to have sex. I don't know, I can't lie to the forum, I'd probably just tell her I think it was because of some medication I was taking. Plus, let's not kid ourselves, it's not a rare thing for a guy in his mid-forties to have some performance problems from time to time and she's just 3 years younger than me and I'm sure she has experienced it before. I can't say I'm not concerned about that at all; being in that situation and not being able to perform. Of course I am, what guy wouldn't be. But I could handle that. My main issue is how it would possibly compound my psychological Peyronies Disease issues. This could really help me or it could be bad. I don't know!!

For any of you guys who may be thinking, "You mean you are just going to use this girl?" NO I'm not. I would not do that to a friend. As I said, I would make sure she understood before we leave or do anything that is does not mean I'm interested in a relationship with her. That she knows we are just going to have some fun and we'll see what happens. Trust me, I know her and I'm about 95% sure she'll be fine with that.

SO I NEED SOME ADVICE HERE GUYS!!!. SHOULD I CHANCE IT AND GO ON THIS TRIP OR WHAT?

Rzz:

Debbie sounds like a good friend and a nice person.

If not now, when?  If not with Debbie, then with who?

Rzz my friend, my above statement pretty much says it all except; since ED is your biggest concern, it is the most easily treatable.  Take a levitra and it will enhance your erection (call your doc and get a sample).  If you cannot get a levitra, then take:

2 Horny Goat weed capsules and 3000 mg of L-arginine.  It will have a subtle but noticeable effect on your erection and is very safe. (Assuming your ticker can stand sex)

I agree with Hawk.  If not now, with an understanding and willing friend, then you'll never get the courage with a 'casual stranger'.  I say go for it and let the chips fall as they may.  I'll be willing to bet that she'll have a very positive attitude that'll put your concern to rest.  As for the Levitra/Horny Goat Weed  (do goats get horny on weed?)...it couldn't hurt!

   Gas up the 'Vette and go! Leave the performance anxiety at home (I know, I know... easy to say, hard to do) and enjoy the company of this gal. This sounds like two friends taking off on a cool road trip... it's not a study on your ability to perform (damn, I wish we could call it something besides "perform"... we're not in a circus for cryin' out loud). Go. Enjoy! She's not going to have a performance report card tucked somewhere to be filled out later. I think you have a blessing waiting 150 miles away!

Angus:

We could call it "successfully making out".

Old Man

I'm not going to pretend to know the pressure you are putting on yourself in the "performance" area, but I do know a thing or two about how this woman would react if things did not turn out if you weren't able to achieve your goal.
The words that stood out the most to me in your post were "If your wondering about how I would handle it with Debbie if I was not able to have sex. I don't know, I can't lie to the forum, I'd probably just tell her I think it was because of some medication I was taking." Why lie to her? If she is as good a friend as you state, she can handle the truth.
Secondly, I'm not passing judgment in any way,  so please don't take this in that way, but...
I don't care how old women are, if we are attracted to a man,  we don't appreciate a guy trying out his magic wand on us with no thought to our feelings. Women who have an " attraction" may say they are fine with a one nighter, with no commitments, but it isn't true, not down deep where the emotions reach our soul.
Having said that, if my husband had not been willing to drive 750 miles, many times,  he wouldn't have me as his wife today, no matter how much I love him. So I say be up front with her before you ever leave, then if she still wants to, go have a fun dinner/weekend, enjoy each others company and see what evolves.

Changes in the size of the penis can happen with Peyronies Disease over time.  We all know the different treatments. 

One thing that cannot happen is instantaneous, or even overnight, shrinkage.  We all worry about it and gradual size loss may happen, God forbid.  But, if you think you noticed it get smaller, in a very short time, its temporary.  There is no way for tissue to permanently change size (mass) quickly.

I hope this eases some minds.

Liam

I want this to come across in a kind way.  I honestly want to help.

Organic ED means there is a physical reason an erection cannot be achieved or maintained.  In numerous posts you have stated "manual" stimulation will maintain your erection.  If you can maintain an erection during masturbation, the cause of your ED is more than likely psychological.  A physical (organic) cause would not discriminate as to the source of the stimulation.  However, your mind will.  This is why some women are considered "sexy".  That concept is in your mind as  all women have the same physical parts.

Almost all your posts have mentioned masturbation or self stimulation.  You seem, to the outside observer, to be obsessed (and possibly compulsive) with it.  A good psychologist or psychiatrist can be of great help.  Even if you don't think this applies to you, a mental health professional will help.  I have included an article from the Mayo Clinic (I underlined parts):

Compulsive sexual behavior

ARTICLE SECTIONS
Introduction
Signs and symptoms
Causes
When to seek medical advice
Complications
Treatment


Signs and symptoms
Sexual behavior becomes a problem and is considered compulsive when it's repeated often enough to interfere with your normal daily living and with your relationships. If your sexual behavior is compulsive, you may display it in a number of ways, including:

Having multiple sexual partners or extramarital affairs
Having sex with a succession of anonymous partners or prostitutes and treating them as objects to be used for sex
Using commercial sexually explicit phone lines and Internet chat rooms
Engaging in excessive masturbation
Using pornographic materials frequently
Engaging in masochistic or sadistic sex, such as experiencing sexual excitement by inflicting or receiving pain during sex
Exposing yourself in public
Often feeling compelled to engage in sexual activity when you're stressed, anxious or depressed
People who are sexually obsessed can be married and appear to live otherwise normal lives, though they may have difficulty establishing and maintaining emotional intimacy.

Sexually obsessive behavior tends to be chronic, intense and beyond your control. Although you may seek gratification through sexually compulsive behavior, you're unlikely to achieve fulfillment over the long term. In fact, you may feel that your life is becoming increasingly empty. People with compulsive sexual behavior often use sex as an escape from other problems, such as loneliness, depression, anxiety or stress.

http://www.mayoclinic.com/health/compulsive-sexual-behavior/DS00144/DSECTION=2

YoungPD, I am also young and have Peyronies Disease at the age of 23. My Peyronies Disease might not be as severe as yours but I think Peyronies Disease has taught me a few lessons. For instance im not just looking for the next hot girl at a party to hook up with because im embarrassed. In some ways I think God may have gave me this so I could find a girl that truely accepts me. I think at your age a girl that really likes you will accept your condition because true love is hard to find. If I was you I would not dwell on your Peyronies Disease as it tends to make it worse, try some different treatments but do not focus everything around Peyronies Disease. When I first truely knew I had Peyronies Disease (when my growing dent started appearing) I was really depressed and thought my life was over. Now I just pray for a cure and im about to try VED treatment. I myself really want to find a good girl but im certainly not looking because of my Peyronies Disease, I figure I will find the right girl by accident and things will work out if its mean't to be. This condition has really changed me in many ways, in good ways actually. I feel if I can get rid of my Peyronies Disease that I can do anything. Most guys would go crazy with something like this man, so if we can figure out a effective treatment then we will be way stronger mentally then alot of guys. I got Peyronies Disease as a side effect from a medication many years ago. Anyways man I know you have heard this before but if a girl really likes you then she will accept your condition, if shes shallow she will not. Thats the way im thinking right now and it has helped my mental health greatly. Just know nothing is uncurable and we just got to put together the puzzle. Hope this helped a little.

Fellas,

Believe me when I tell you that Peyronies disease is no easier on a 40-something male than it is on you guys. I guess a good way to explain it is to imagine if a sibling close to you in age died in your 20s vs. it happening in your 40s; it would still be an awful hurt. Sure, I may have had the opportunity to experience more sexual encounters than you have in the additional 20 years, and I have been married, but Peyronies Disease is a life-altering disease no matter when it strikes.

Let me tell you guys and others my recent experience: My wife filed for divorce and I quit my job and left town (it was her hometown). I went to live with my sister who thought I was depressed because of the divorce, and she was constantly trying to hook me up with groups of friends when I wanted to take some time to myself. They were mainly church groups and believe me; the women in church like sex as much as those who don't attend.

Of course my sister didn't know about my Peyronies Disease. I'm guarding that secret with my life.

Things soured after a couple of months of me hibernating and failing to find what I thought was a suitable job for a man with my experience. I went to visit other relatives on a Holiday and they invited me to stay with them in one of the nation's most progressive metro areas. What did I do that for? I was related to the female in the couple and her husband took me to every strip club in town. He was always taking me bars and although he is a professional man, he talked sex all the time. I guess he figured that a handsome, recently divorced man should be pursuing women. His wife's best friend was available and he tried his darndest to hook us up. He had a gorgeous cousin he was always pushing me to take out. I would make excuses such as, "They are too close to the family and I wouldn't want the relationship to sour and have it affect you all". Actually, I didn't want them to tell him and his wife that they weren't interested because I have a 70-80 degree right-bend with a calcified plaque that doesn't allow my penis to penetrate very far and hurts when they thrash, because it pulls the plaque. 

All of this pressure to date/mate (the women were menless and sex would have been inevitable) affected my relationship with them. I went there because I have a very good relationship with my cousin and I wanted to get to know her children from her second marriage, and to begin life anew.

Soon, they apparently came to the conclusion that I was gay and they began to make little remarks about people on the down-low and things like that. I left when that kind of stuff begain. I'm still unemployed (you wouldn't believe how hard it is to get a job after 40 if you don't already have one).

So here I am with a divorce not even a year old, jobless and living off 401-k money and afraid to go home because the men in my family are absolute cavemen. They would harass me to no end about not pursuing women (we have a couple of gay male relatives and they are always the topic of discussion). I guess I could tell them about my Peyronies Disease, but it's too embarassing. I also feel like my medical conditions are my own and I should be able to keep them private if I choose to do so.

I'm presently living with a woman whom I met through the job while I was married, and though we have become intimate I can tell that it's not a situation that she will want to maintain long-term. In other words, she is being nice until I get my employment situation together.

Anyway, I just wanted to share my experience. I guess none of us has it easy because in this society so much of our manhood is tied to our penises.

We're still luckier than a lot of people; at least Peyronies Disease is not fatal like cancer or HIV. 

Boodoo.

Don't lose hope on finding a relationship with a female who will consider the more important things in a man that what he can give to her sexually.  We are out there....you just have to find us!

If you are honest, open, loving, and genuine with the right women in ALL areas (again, not just speaking of sexual matters), you will find the right one and a truly loving relationship will grow and bring happiness you your life once again.  You just have to have the faith that it will happen.

I will keep you in prayer for the employement situiation as well, as you are right.....after 40 it is a hard thing to start over in the workplace if you dont' have an established reputation in your trade.    Hope something breaks for you soon in that arena.

Blessings to you.

Christine

Bodoo, I really want to tell you that Christine is right on the mark in her advice.  I would further add that in any setting, but especially in a church setting, you should ONLY have to tell people that "you are not interested in entering a relationship" at this point in your life, no further explanation necessary.  Anyone pressing for a further explanation HAS A PROBLEM and DOES NOT DESERVE AN ANSWER.  If a significant number of people at the church in question bother you in this way, YOU NEED TO LOOK FOR ANOTHER CHURCH.  Those who attend church in order to find mates and/or matchmake people are there for all the wrong reasons and no church should pander to these people.  Church is a place people go to find spiritual nourishment.  If one finds other blessings there, thats OK of course, but it IS NOT the purpose and those who try to make it the purpose are in need of correction.  IT IS OK TO BE SINGLE AND TO DESIRE TO BE SINGLE AND IT DOESN'T INDICATE THAT ONE IS 'GAY'.   You very correctly point out the pain that older men experience as a result of Peyronies and also how cruel spouses and women in general can be to them.  I would add that women face much the same problem in our sex crazed world.  How often do women have problems during menopause, only to be dumped by the brute they made the mistake of marrying?  It should really make us all examine ourselves in terms of where our values are.  Sometimes the way we act when we are 'whole' does not take into account the fact that what we have can quickly be taken away by a cruel turn of fate and leave us the victim.  Only then do we realize the abuse and pain we perhaps inflicted on others before we ourselves fell victim to it.  But there are men and women out there, as Christine notes, that are able to love you for who you are, without regard to your disabilities.  They are worth waiting for.  Ignore the rest, they are not worth a response.

- George

BoDoo,,,George is right and and it couldn't have been said or put any better. You are also getting good advise from Christine....Here we are all talking from experience, it's our place here as the older generation to help counsel the younger men with good sound advise...We do it because we care, a lot of us we're given wise counsel when we we're young and now it's our turn to do the same....

I was married at 18 and my wife was 16 and next month we will celebrate our 43rd yr together,,,we have been through a lot and have stayed the course. By the way,,i met my wife at church camp when she was 13 and started going with her and 3 yrs later we got married and we're both virgins..

I guess i'm trying to say,,be patient and ask God for the right person and he will provide and you will know that it will last....Also,,put your trust in God for your employment,,"He created you and he always makes provision for everything he creates"....

Hang in there, it's gonna get better,,,,,,,,,,,,,,,,,,kimo

Dar Bodoo (for some reason, I hear Peter Sellers saying "...if that really is your name...")

You have been given good advice. Moreover, you are doing better than many men in your position would do. You have insight and compassion, most of all for yourself, and that will stand you in good stead. Time will heal your heart, and a year after a divorce is too early to plan or try for an intimate relationship.

In terms of young men thinking about starting a relationship, I find it interesting that you state that you have "become intimate" with the woman with whom you now live. I take it that you mean that you have had sex, but that you do not see that persisting past the time that you stay with her. So it seems that on some level you have gambled (perhaps you started for "lowered stakes" by getting together with someone you did not think would last forever) and taken a chance and revealed your Peyronies to a woman. That is brave! (but not that brave...)

I would like to hear more about that if you would care to share. It seems guys are forever stating that they cannot imagine starting a romantic relationship (ie sex), and yet somehow we do. If you were able to become sexual with this woman, how did it affect your thoughts about other women? Again, I am not arguing that you should get back in a marriage - just wanting to hear more about how it felt and how it worked for you in this romantic realm.

For me, here is how it went. I have a 20-30 degree upward bend in the last third. *I* know my penis is about 1.5-2.0 inches shorter, and thinner, than it was when I was twenty - but when I got naked with my current partner for the first time, she did not know that. So I was in a position of dealing with the emotional response of and to a woman, naked (and may I say that she was and is hot!) for the first time, who disrobed her man and found a 5.5-6.0 inch long penis with a curve.

And do you know what happened? We made love and it was incredible. Later, maybe weeks later, I told her my story. I felt a bit weird, like I was a surfer saying "You shoulda been here last week when the surf was REALLY good!". But, nevertheless, she listened, and felt my pain, and reassured me that I was all she had ever wanted in her life. I can still believe that I can be me, and with a bigger and straighter dick, and I will be better. But I also have to live with what is - and that says I have a penis that works (for now) and that can allow me to please and be pleased sexually with my partner. That first time, it made me nervous, but I dealt with that by turning the lights out and making sure she was, um, ready.

So, Bodoo, I am interested in how it was that you have struggled (as any recently divorced man would) with avoiding sex with potential "perfect partners" but did start an intimate relationship with a woman with whom you were comfortable. How did that feel? Is that something that you would be willing to share with others?

Tim

Tim,

The woman/good friend is allowing me to pay room and board while I study for a certification, which means I do not have to spend hours everyday sending out resumes and cover letters like I did when I stayed with family. My family didn't understand what I was trying to do. They thought I was being lazy, despite the fact that I have a 27-year work history.

She is a really good friend and I trusted her enough to tell her about my Peyronies Disease. We have become intimate, but of course it is not like the sex I had before Peyronies Disease. I hesitate to use the term casual sex, because I have known her for years and we were friends long before the intimacy.

My intentions were to live with her while I study for my certification, pass it and find a job. In other words, I never intended to have relations or a relationship with her, but that is what sometimes happens when consenting adults live together.

She said that I don't have anything to worry about sexually, but I think she is being nice. 


The other, younger women that I mentioned in the previous email are another story. They were too close to the family for my liking. Suppose the sexual part of the relationship wasn't satisfying and my relatives wanted to know why things did not work out? I was worried that the women would reveal my situation to my cousins (in confidence of course  ;) ) and I was trying to guard against that. The women in church groups also tend to gossip; it's human nature and I was trying protect myself there too. I'm sure you can understand that from a man who is new to the disease.

In short, I just don't want people in my inner circle to know about my Peyronies Disease yet. I want to suffer in silence while I try to figure out this life-altering condition. I also don't want anyone to label me as "pitiful" and feel sorry for me. 


I can't wait for my Bostonpump to arrive (how long did yours take to arrive).

Thanks for the support.

Your words are very comforting.

Dear Bodoo

I have had to change my inner circle of friends when it did not meet my needs. I have distanced myself from toxic family members when they prevented me from meeting my own needs.

It is encouraging that you are able to have sex with your friend. You might want to reassess what she says, and ask yourself if it is true that she is lying to you when she says that you have nothing to worry about sexually - it might be true! Why tell yourself something negative when she is saying something positive? (Answer - it is called depression).

Hang in there.

Tim

Thanks Tim,

Do you mind telling me if you had to change your circle of friends because of Peyronies Disease, and if so, why?

Dear Bodoo,

At first glance, I thought, well, no, I did not have to change my circle of friends because of Peyronie's Disease. Certainly not in the way that you are talking about - for you I meant that you might need to work on spending time with people who are real and kind and alert and mindful to reality, instead of people who are focused on "making you feel better".

When I got divorced, I had friends who tried to set me up, and I was nervous as hell. My ex-wife was understanding, but a NEW woman? Yikes! So I over compensated as I have often done in my life. I sought out mindless sex out of a fear that I could not get anything. I had to finally reject those in my life who were shallow and supported that lifestyle, to find those with whom I could connect on a deeper basis. So in a way, I have gradually changed with whom I associate, because I do not have time to live life with those who are not life affirming and positive.

Tim

Even thouugh I haven't been asked to answer ,I will contribute my opinion and experience ,at least regarding to social issues like friends circle.

I think it's an individual based decision which depends on the severity of your Peyronies Disease and the extent to which one may be already impotent or intimidated when it comes to being with a woman in bed provided he couldn't perform. some will still go for it ,regardless to their impotence whatsoever ,and some wouldn't.

Those questions may definitely play a major role in determining whether one will keep his previous life style and friends or not ,especially in cases of which most of his friends were into parties ,hooking up ,bars ,clubs and the like.
especially if friends used to see you every now and then surrounded with nice girls.(like in my case before having had Peyronies Disease)

When my Peyronies Disease has come to the stage of impotence and a fair amount of fibrosis ,I have indeed had to gradually avoid,in a more or less evasive ways, the people who used to surround me. I became less friendly and less of a party boy,so to speak.

I kind of lost the lion part of my stamina and joy.
I still have some friends in front of whom I will never confess my issue ,so it really is kind of a weird ridiculous "fake and make"  friendship ,while I tell lies and avoid  situations ,in which my real secret may be exposed in public (when chances with girls are all around my space).many times during those years I have thought of telling about it to someone, but then again ,I figured out I would never be able to expose my state of impotence to nobody ,no matter how close he might be,let alone the reluctance to get the pity sight of people. no thank you - I can do without.

This is only my life and point of view ,not implying in any sort of way to be either righteous or to say this is the way to cope. it's just my never-chosen but constrained way to react to this realm of living with Peyronies Disease and impotence.

Best wishes to you all

I am NOT trying to be insulting.  You should seek a professional in the mental health field.  Your recent post are absurd.  The symptoms you describe need to be addressed by a psychiatrist or phychologist.  Please get help.  This is the same advice I would give a family member.  We want you to take care of yourself physically and mentally.

Good Luck!

Liam

Does anyone have a wife or girlfriend that has a really high sex drive?

I know this sounds like a stupid thing to complain about but sometimes i wish my longtime girlfriend was like the stereotypical married woman, only wanting it once a month etc. My gf would have it every day if she could.

I have had  peyronies for two years with no ED and no curve, my condition is not stable as I have a new plaque and always have pain during/after sex.

This worries me because although she is understanding of my condition now, what if we get married and then several years down the line my Peyronies Disease progresses to impotence...? How can I possibly know she will stick with me?

We are coming to the time where we need to get married or split up. I just hate that Peyronies influences this type of decision making.

Is anyone in a similar situation?

Actually, yes, I am familiar with your dilemma.

I have already (last year) lost a romantic relationship with a woman &, while I can't say that Peyronies Disease was the cause, it certainly played into her decision to start seeing other men. All of the platitudes in the world about "if she loves you it won't matter" don't mean a thing when you are hurting from a situation like that.

So the bad news is that there are women who will be sympathetic to our plight but are too fearful of its consequences to pursue a quasi-sexual life style in hopes of things changing. I can't blame them, personally. Its one thing to stay with someone that you have married or grown old together with but quite another to see that the future holds little opportunity for good old screwing on demand.

Currently, I have been dating a woman for about 5 months now who also has a very strong sex drive. She has had a history of great encounters & I would probably be intimidated even if everything worked. But the wonderful thing is, she has stayed by my side with full realization of what she must give up as much as I. Its not easy & I can tell you honestly that every time a week or so goes by that I don't see or hear from her, my paranoia kicks in & I begin thinking that she has found a lover to provide her with what I can't. Not to mention the fact that I have already been "dumped" by my previous partner when I developed Peyronies Disease. I never thought that I would have the courage it took just to tell her.

I think that the best thing you can do is to be honest with her & do your best to find other means of pleasing each other in order to satisfy that sexual hunger. In our case, we went together & picked out a few sex toys &, as humiliating as it was, I am determined for her to know that I recognize the sacrifice that she is making for me.

Frankly, I don't know what our future will be. There is no question that she wants a man who can be strong & aggresive & be inside of her regardless of the alternatives available. But she also knows that I want that equally. I have finally come to believe, however, what women have been telling us guys for centuries (probably)... "Its not the penis, dummy. Its who its attached to."

Good luck.

QuoteI have finally come to believe, however, what women have been telling us guys for centuries (probably)... "Its not the penis, dummy. Its who its attached to."

To that I say AMEN brother!!    It's a very true statement for many more women out there than you men realize. 

Reach out and touch her heart, and connect with her soul and you will be quite surprised how close that will bring the two of you and how much more satisfying your relationship will be.

In comparison to that....sexual intercourse is highly overrated in my opinion.

Blessings to you,

Christine

I hear what you are saying Christine but I am afraid my girlfriend is not typical.

We often say that she is the stereotypical man in the relationship when it comes to emotions and sex and I think it is true.

She doesn't like talking about problems.
She tends to shut down emotionally when things are tough.
She will get pissed off or frustrated if I am not into sex on a certain day.

Don't get me wrong, she is very affectionate its just that she is not emotional in the way you depict. She would NEVER say anything like "touch my heart".

On the other hand I am the exact opposite, which makes things tough. I always want to talk out problems etc...

If she is more like the stereotypical man, just ask her.  Thats what I would want.  "If I become impotent will you stay with me?"  The question will not change what happens.  If her answer is yes, great!  If it is no, you are just finding out earlier.

However, having said that, I probably would say nothing and enjoy what I have.  I just find it easier to take things as they come and try to roll with the punches.  Worrying never changes anything.  Yes, communicate if there is a problem. 

QuoteThis worries me because although she is understanding of my condition now, what if we get married and then several years down the line my Peyronies Disease progresses to impotence...? How can I possibly know she will stick with me?

But, don't manufacture a problem where one doesn't exist.  Playing "what if" will make you crazy.

Liam

Thanks Liam,

For the past two years I have been going with the idea you express here. I just told her that I had an injury and that we have to be careful. She can't be on top...no rodeo style sex...etc

I don't think she really understands that things could get worse.

In a way I do think just asking her would be the right idea except that she has had a pretty rough life and I don't really want to affect her overall well-being by giving her something else to worry about.

It is a careful line to walk...but I DO need to know. I am actually thinking of seeing a therapist to discuss these issues (mostly the relationship). I just have this overwhelming feeling that if she is not going to be okay then we should end it

TS,

I think I can kind of feel your dilemma.  I am thinking out-loud here more than I am taking a stand.  I think both you and Liam make good points.  It does somewhat seem however that your position is : If there is a chance the relationship could end over this in the future then lets end it for certain right now.  How certainly can she even know the answer to your question?  Maybe in  5 years you will grow so close and mature in different ways that she would never leave.  Possibly you will have other issues undermining your relationship and break-up could follow even without Peyronies Disease being added to the mix.  Half the people that expect to stay together forever don't.  Should they all just end the relationship now because of the potential for breakup?

Garth Brooks had an old song out that expressed a sentiment something like: "life, is better left to chance, I could have missed the pain, But then I would have had to miss, the dance " 

Doesn't covering all bases to protect ourselves from future pain, also ensure we will never live and experience any real joy?  Like you and most people, I like to be sure of what I can and cannot count on, but somethings have value for what they were, for the joy and experiences that existed, not just for the unpredictable way in which they ended.

Any of us can wake up to find it all interrupted because of any one of a thousand events.  Even if she stays through Peyronies Disease, should you check to see if a nuclear holocaust with anarchy would drive her away?  What about dementia, incontinence, cancer, stroke, accident, or financial disaster? 

We have to strike a balance between living in the moment and deferring our gratification.  All of either extreme can make for an unsuccessful life.  Bask in the joy you have. 


Hawk

TS,

One thought on the topic.....

If the roles were reversed and it was SHE that was suffering from a condition that "could" "possibly" in "in the future" render her unable to have normal intercourse.... but she would still be able to love you.have intimacy in other ways, and generally engage in an honest, committed and loving relationship.

Would you consider leaving her now?

I guess the question you need to ask yourself is how committed are you to her?  Are you willing to be upfront, honest, and forthcoming about your feelings and willing to let her share in your life completely and together work though the good AND bad times as they come in life?

You are young and Hawk is very correct.  There will be many many things that will befall you and cause you to pause in life.  Are you sure that you want to allow Peyronies Disease to control your path in this way?

The good thing is that you are not married at this time so you can really soul search your hearts and come to that conclusion and go forward in whatever way you decide your path should lead.

Don't let something that "may happen" destroy what you have today especially when you are not sure how the person you love feels about it.

Think about it.

Christine

Christine,

Thanks for your insight. I have thought about this many times myself but the problem is that she and I are both very different. Sex to me is something that is great but not a deal-breaker. I would not leave her and would probably just stick to masturbation.

We have had a very unusual relationship... basically we had sex many years ago and were intimate etc... then we didn't see each other for years. When we restarted the relationship we were together for only a couple of times, and then I had had this injury.

We didn't have sex for an entire year after my injury. I was just very freaked out, worried, embarrassed etc. I am sure many guys here can relate. During this time, she was a wreck. She began to seriously resent me for it and in general did not act very compassionate and understanding. I wanted to go to couples counseling and she refused. She told me at one point that if we didn't have sex soon she would sleep with someone else. Note that I have no reason to suspect she would cheat or has cheated in general. It was a very shocking thing for her to say.

Eventually I overcame many of the issues I was dealing with and we did start having sex again (been about 9 months now). This was NOT a result of her threat, but just my coming to terms with things. I am sure she has forgotten that she said such a thing, but I have not.

Part of me wants to believe that what she was really upset about was a lack of intimacy, but it is hard for me to know for sure. For me intimacy can be sitting on the couch next to each other, but she has more physical needs. I do admit that we didn't even really "make out" or kiss much during this time.


-M

Quote from: Christine on July 18, 2007, 11:21:10 PM

If the roles were reversed and it was SHE that was suffering from a condition that "could" "possibly" in "in the future" render her unable to have normal intercourse.... but she would still be able to love you.have intimacy in other ways, and generally engage in an honest, committed and loving relationship.

Would you consider leaving her now?

Think about it.

Christine

It seems if she had the desire to to sleep with someone else, she would have just done it.  I mean.... after a year....and you are not married or anything.

QuoteIt was a very shocking thing for her to say.

Going a whole year without sex even though you had the ability to is shocking, too.

She probably was not serious with the threat.  I bet she didn't even intend for you to take it seriously.  She was probably trying to shake you out of the funk you had gotten yourself into.  BTW, if she was serious, thats nuts.  Just dump her.  I don't think she was, though.

You have marginal symptoms of Peyronies Disease at the worst.  I mean you are still "functional" sexually.  You are worrying for nothing.  I fear your anxiety is a worse problem than anything happening with your penis.  The anxiety is making you dysfunctional and may become the reason for her leaving.  If you treat the psychological, the physical will not seem so much of a problem.

Good Luck!

Hello everybody, I am new to this forum and I'd like to first give thanks to all those who have made it easier to discuss peyronie's disease in an open forum.  I am a 22 year old male who has been suffering with this condition for the greater part of my life and this is one of the few outlets I've come across to discuss both the physiological and psychological components of the illness. The disease has had a very debilitating influence on my life so far, and I'd like to share my problem and would appreciate any advise.  The whole left side of my shaft is very scarred and can not maintain rigidity during an erection. There is a bend in the left shaft also and it causes my penis to hang down and curve to the left, what I believe is called the hinge effect?  This makes intercourse difficult to impossible because of the lack of rigidity.  Psychologically, this is very hard on me because I believe myself to be a good looking and good natured guy, but this disease really affects my confidence in everyday life.  I can't compartmentalize the anxiety, it seeps into my everyday life like a poison and really brings me down.

With this said, I decided that I can not continue to let this disease ruin my life and emotions and am taking the steps to try and fix it.  Overall, I can say I'm pretty happy with my life except when it comes to girls and relationships, which is obviously the hardest things to deal with with this disease.  I had a steady girlfriend for a couple of years who I was completely open with about the disease, and she was very accepting and we dealt with it the best we could.  However, I am now single and into the dating scene, and this is where alot of my anxiety comes from.  I have girls interested in me but I many times don't pursue them because in the past I have gotten into intimate situations with women and not been able to perform.  This makes me feel horribly inadequite and completely destroys the thrill and excitement that one should feel when in an intimate situation.  Currently I started seeing this girl for a couple of months now, and we've successfully had sex in the past, but recently I havn't been able to perform and I'm running out of exscuses why we dont have sex.  I've read the advise posted by people on this forum about what to do in this situation, it seems that the general consensus is to trust in your partner and if she's willing, work through it.  I believe this to be good advise, but not necessarily for someone in my position who isn't ready to settle down or be in a serious relationship.  To explain further, I like this girl and she likes me, but I don't feel ready enough to trust her with such sensitive information that could get around to others in my college community because I have no idea how she would react.  Does anyone have advise on how to handle dating situations with peyronies disease?  What is a good way to tell someone that there is a problem in the sexual arena without revealing too much information that could possibly be leaked?

The second question I have is more important.  I just started seeing a urologist in order to begin my treatment.  After the first session he concluded right away that I would need surgery, despite his reluctance because of it being the last option.  I have read some of the postings on this website and others that state that if surgery is needed, a patient should seek a uro who specializes in it, rather than a general uro.  Does anyone have any advise on the steps that should be taken by the uro before surgery, such as xrays, ultrasounds, or anything like that? I"m very new to this so any suggestions would be helpful.  Also, does anyone know any surgeons in the Southern California area that specialize in surgical procedures to correct peyronies disease?  It gives me hope to know that I'm not alone in this fight like I believed myself to be for a lot of years, and I'd like to thank everyone in advance for being able to honestly and openly discuss their illness and the pains associated with it. God bless.

Hello Jandro,  A warm welcome to the PDS forum.

Your post was articulate.  It is clear you have the attitude and skills necessary to successfully confront these challenges.

I am not being hard on you here, I may just be out of touch.  I am not sure I have the advice on how to  reveal enough to an uncommitted partner to explain the situation and yet have assurance that only comes with intimate trust.  It seems you may be asking to attain 2 mutually exclusive situations to say, lets have recreational or casual sex but I must be able to have intimate trust that you will keep my "secret" so I can date other women.  Others may have better advice.

I do however have 2 names in Calif for you.  My guess is that either would be sound choices but i would tend toward the one furthest from you.  Others here may have personal experience and I would suggest that you do a forum search of these doctor's last name to see any posts that may mention them by name.  Most members that have experience will gladly be very frank with you by post or in a Personal Message.  If you have specific questions on these doctors you can post it under. "urologists and Other Doctors" https://www.peyroniesforum.net/index.php/topic,21.0.html

Welcome again and I look forward to your posts and interaction on the forum.

Martin Gelbard
Urology Associates Medical Group
2601 West Alameda Avenue Suite 416
Burbank, CA 91505
Phone: (818)843-1700
Burbank Urology Associates Medical Group


Dr. Tom Lue
Department of Urology, UCSF
http://urology.ucsf.edu/faculty/facLue.html

Hi Jandro,

A quick note. Because of the problems that you are dealing with, you are going to lose out on some of the common experiences of men growing up. That is something to grieve - for it is a loss. As an older man who went through Peyronie's at 20, I understand how that feels.

But it is important to remember that what you are losing is not catastrophic. You are losing the ability to easily engage in mindless and disconnected sex with women that you barely know. And in fact, if you are desparate, why you can do it anyway-  just at a price in self-esteem.

So, though it is absolutely true that you "ought" to be having sex only with women with whom you are ready to be truly intimate (and thus willing to share secrets with), it is a reality at your age that men and women are willing (and interested) in doing more than just that. So feel sad about that loss.

However, that does not mean that you cannot have mind-blowing sex, that you cannot heal, that you cannot be fixed surgically if need be, or that you can never be happy. All of that is within your grasp. So, you ar right to start with an aggressive workup to decide what is wrongm and how to fix it. You are right to seek out very skilled help. Hawk gave you some good names. Good luck with this.

Tim

Jandro:

I believe that Hawk is right on in distinguishing your Peyronies Disease issue from your desire to "not settle down." We can't have it both ways.

I have been with 2 women since becoming affected. Both were & are very understanding & both did their best to support my decreasing libido. In the end, however, the relationships failed BUT neither are out there passing on intimate information. Why? Because I never treated them in anything but a respectful manner & we parted ways on a cordial basis.

In other words, if you are honest upfront about both your Peyronies Disease and your reluctance to enter into a long term relationship, I doubt that you will be a point of ridicule or abuse. Yes, there are women who will share information about lovers indiscriminately but that happens to men regularly, with or without Peyronies Disease. As a rule, I must say that women are way less prone to spread ugly personal gossip. It usually occurs when there is a need to "get back" at someone who has hurt them first.

Wow, I fell on the hardcore theme, the psychological part of the disease...

Some people react better than others when challenged by life, some take their sword and stand up (and stand really erect  ;D, sorry for the joke, but we're all more or left in the same boat) and they consider this as a challenge in their life that they have to overcome...
And some sit down and cry...

But at some point anyway these 2 kind of people probably share their respective attitude... cause you can't always fight, and you can't always cry, right?

So if you love the girl and think she can bring you true love, just go for it. Otherwise, what are you gonna do? Sit down in a corner and wait for the girl to go away? In the end no one is made for loneliness...  You'll miss lots of good moments in order to protect yourself from being hurt... And maybe one will don't care about this problem and if can't perform maybe she won't mind because she won't be a sex--driven woman...

Also for the "I can't perform sex" stuff, I believe that a girl who love you (if she knows what it means) will accept that you're not a sex-machine or some king of ever-ready porn actor. For my part, I've been almost ridiculous on the first night with my girlfriends (especially the first 2, couldn't get it hard out of stress  ::)  :D) So don't worry, she'll take you as you are, and if it doesn't work sometimes, she won't leave you for that, you know. Unless she is what we call a bitch, and that's not the kind of girl you need...

So don't let the good ones go away, and stay away from the girls that you feel they won't understand you... Cause these ones won't be there to raise you up when things turn sour (not talking about peyronies but also the other challenges in life...).

You can also get run over by a car at any stage of your life, or get you dick chewed off by an aggressive pitbull  :D so don't think you'll only have this peyronies problem to deal with in your life,
so go for it and stop asking yourself the "what if" questions. Take the good moments while they're here...

Normally my intimate POV in not so optimistic, but I hate seeing people down. Cheer up and catch a nice, kind girl...
And send us a picture of her! ha ha  ;D
Take care, mate.

Ninja,

You are wise beyond your years!

That's why I'm a ninja!!
Otherwise I would have chosen "dumbass gladiator" as a nickname  :D

Sorry... just being childish  :)

But I think a smart and compassionate woman will understand problems like that... At least better than a girl who looks for
college sex and "have fuuuuuuun!!!!".
At least when a good girl is around, give it a try... She may not stay with you forever, but they're are so many "parameters" in life and so many reasons why she would stick to you or leave you... The sex matter is probably important for young women, but I guess some women are not so much driven by it later on (in their 30s) and it may be other factors (like having low self-esteem, being pessimistic, or being "bad company" in a word) that may make her leave you...

The psychological consequences of this disease might be the reason why she leaves you, not the disease in itself...

I know it's full of cliché, romanticism, and general common sense, but I'm just 25, I can't tell more than that... I'm not experienced enough to know the women and their deep nature (but can any guy do it??  :D :D :D)

I tell you, they're all crazy, bottom line! So pick the less crazy and love her!  ;D
At least you would have taken the chance... and not just have sit on your ass...
At some point we might take some time to stop and consider the risks and the "what if" questions, but we all know, again, that we're not meant to be alone, so we have to go forward and find the right person...
...

CRAZY, all of them!!!

The French must be born with something that helps them understand women  :o

Welcome to the forum again Ninja.  You have good posts plus they make me smile.

Hawk

Thanks, Hawk.
I try to be as cheerful as I can be in my situation (we're all in the same boat, no good to bring the others down).
I won't be like that all the time, but I'll try to avoid the pessimistic stuff as much as possible, since pessimism leads to nowhere.

Good to know I can talk a bit to people who're living the same things (I don't talk about this to my family, no need to make them worry about me).

So YOU guys will be worried about me, ha ha ha, I'm not leaving this place, you got to bear me till the End of Time  ;D
Joking if course...

Thanks to Hawk, Tim468, voulezvous, and ninjagaiden for all your insights and encouraging words.  They really are empowering and I'm going to keep them in my mind and make better decisions when the chances arise. In other words you guys rock and thanks for all the information and advise!

The following quote was inserted by Hawk to put this post by Ninja in context.  The quote is from the "Erectile Dysfunction" topic. Everything below the quote is the untouched response by Ninja as he wrote it.  You can click on the quote header to go to Tim's entire post and the posts that preceded it on the ED topic.

Quote from: Tim468 on August 25, 2007, 05:55:44 PM
Antony,

... So, you say that you will "ask about" pentox, but I suggest that you READ about it using the articles that I posted for you over two weeks ago. I am sorry to sound so blunt - for I have great feelings of empathy and sorrow for what you have suffered. But I have also suffered, as have many men here who can no longer have intercourse either. You are not alone. Instead of listing how many ways in which you are different (and therefore "worse") I hope you can start to see how you are not so isolated or alone. You are not the only guy whose life is altered in a way that is depressing and frustrating. Yet you will see, along with the depression, signs of hope and optimism here as well - and that is not because they "don't have it as bad as you". It is due to doing the work of recovery that we must all do to heal our hearts. And if you listen long enough you will also hear the words of the women who love men despite their failure to have a perfect penis any more.

You can heal either medically or surgically - that is a fact - though it may entail spending time and money and feeling sad. But for now, it may be of more help to get going on the "recovery" part of what you are facing.

Tim

Hi guys,

Been away a few days (doing brickwork in my house :)), I've just read the last days' posts, and to me Tim,you're a bit tough on Antony. To me, we're all in the same boat living positive and negative things because of our "functional" problems...

But I think that some people do live harder situations than others (when you face total sexual disfunction at 25, it's different from telling that you slept with Tons of women by the age of 30. You wanna kill the kid mentally? or make him envious?

I know that's not what you intend to say, but man, it's not good telling a young guy that (despite your problems) you could get lots of ladies in your bed (or car, or wherever, that's not the matter  :D).

But I agree with you, it may take Antony time to recover (1-2 years according to you), but don't blame him for talking about his feelings, since contrary to you, he can't be sexually active, where you were sexually active at his age...     >that's 2 completely different situations<

You said you wanted to prove things to women when you were his age...
Ok, now, if we told you that you could not perform anylonger (sorry, I hate the word impotent) at 25, right in the middle of your women-hunting game, would you have smiled and said "no problem"?
I guess not. But correct me if I'm wrong. :)

Please don't take offence Tim, I take all your other advice as good advice, but the telling-off part was not cool on this young guy.

By the way Antony, what are the docs names? (the Monday appointment + the November specialist). And again, take your treatment, I'm sure your situation will improve.

Hello Ninja ,

Don't know how old are you, but you exactly understood how i can feel, and what i live, and since the begining of this fuking problem,  i argued severly even with my own father who had told me (before realizing it was really serious, then he apologized) 'it's ok , if it was me i  would live it diferently' and i answered f**k, you are 60 and you tell me that, but when you were 25, you loved have sex or catch girls, the same as me, how would you have react at my age????'
Some days later he really realized about what was my situation.

Everybody is like he is, as for me until January i'd like a lot go to parties, going out with girls, it was cool, no problem, and SUDENLY, i become TOTALLY impotent (coz that's the word). It's more than everybody of this age who dont live it can think. It means really more than what people who dont live it can imagine. It's your life who disapears, exactly as the same way of somedody who lose one arm, one leg, his eyes, or have a serious disease. I lost one part of my body, and the part of both pleasure and life.

By this problem, it's a whole life and its future which is sudenly in question. It's a personality which is destroyed. It's a way of life that can't exist anymore. It's your activities and pleasures that die. It's all your proaches who feel bad and you see less. It's a physical apearance which becomes crap ( eat few, sleep few, etc). It's your money who disapeared in so many useless very expensive apointements. It's your nervous capacity which is ataked when you listen to stupid doctors say 'nothing important', it's hatred when some months later they say 'ok it's serious and definitive', that's the envy of suicide when you know that normally today i should earn my money by doing my passion, my dream,and finally i live like a sh..t, and i still don't understand how it could happen, how all was destroyed in one night. It's the madness when you realize you have become the oposite of what you are normally (i.e, used to have lots of nice girlfriends, now avoid a girl, used to go out a lot, now stay alone in my room, used to be sportive, now dont go out at football matches anymore, etc etc etc). If you just don't understand how it can have so bad and numerous consequences, i would just say that the few other people of my age who have that problem, react exactly the same way and live it exactly the same....

So, telling it doesn't change my situation, but it was to say that you're right ninja. After it's no matter if Tim tells what he thinks, and give good advice, but by living what i live at this age, and in that way of total impotence (and other numerous horible symptoms i told ), only the people who live it can realise how it is (by the way i know 2 other people in france who have that and have the same dark ideas, and i would add lots have dark ideas for really less important than that).

Yep, Liam's right, I believe depression makes things worse (both psychologically and physically, it cause worse erections, so it's harder to recover...

Take the Welbutrin for your mind, + psychologist if you feel the need. The advice :"exercise", is good, but I know that with a depressed mood, it's even harder practicing... I myself have hard time practicing because of the mood, but I force myself, and it does more good than it does harm.


So you have to start from "healing your mind", and then you exercise in order to get in better shape, more testosteron release, better erections, and so on...
Hey, another Rocky quote, I know you guys love them : "There's no eaaaasy way ouuuut!" (Rocky 4 soundtrack).
I think that's true, there is indeed no easy way out for us, but there is a way out, and that's whatever it takes , even if it means penile prosthesis. But you're not there yet, continue with your treatment.

I understand you cause I'm 25 too, even though my problems are not severe.
I looove people who talk about suicide (let's be frank with the words) when all they have to worry about is a mild depression... >:(
They don't know how lucky they are. It's like the 70 year-old guys that you talked about, who complain about less rigidity in their toy...
Man, what a hard life they have.

My dad knows "a bit" of my problem, he had a similar reaction to your dad. It took a little while to sink in, and then he seemed to understand. But that did not improve our relationship for more than a week, people have short memories  :D

It is important to know this.   You cannot make reasonable decisions about life and death (or anything major) while depressed.  It is like asking a blind person about what color something is.  Drinking will make your depression worse.  Most illegal drugs make it worse in the long run.

Bottom line, if you are thinking about suicide (or even just morbid thoughts), GET MEDICAL HELP NOW!  It is an illness, not a weakness!

If you have threatened suicide (even not seriously) get help now.

Sorry if I seemed tough. My point is that I too developed Peyronie's at a young age (20), so I do not need to hear about how much "worse" it is to get it young - that already happened to me - that was my experience.

My point about my sexual history was lost I guess. It is that by acting in crazy ways, we hurt ourself emotionally. Yes, I was still able to get an erection, but it was more difficult and it seemed to me to be deformed as well (but at least it worked). But I made myself crazy trying to get more sex, desperate to use it before it was gone.

I now see that I wasted time at twenty that could have been spent in taking care of myself in more healthy ways.

That is my point.

Taking care of ourselves does not mean never feeling sorry for ourselves, but not living there in sorrow forever either. I believe that Antony has a choice to make. He can either seek healing and start the work of healing, or he can quit trying. But through trying to get better, we heal in many other ways. If a career, and earning capacity, and a job, and all semblance of affection and love of the company of women is gone, then that is a dysfunctional response (dysfunctional in that it does not promote healing). For Antony's sake, I hope that changes. But severe ED, at any age does not cause the loss of, say, a job. Depression and withdrawal causes that to happen. Not to say that one should feel rosy and cheerful, but Peyronie's does not "make that happen" - not at any age.

So while I am very sympathetic to his plight, and perhaps some have missed how I have tried to point out that some of us have shared his plight, I feel like he would benefit more from honesty and direction. I have given the best advice I can about how to start to get better, in terms of self care of the heart, in terms of medicines and drugs (and the reasons behind that) - and what anyone does with any advice is up to them, not me. I just hope that, Antony, you do not fail to see what is right out in front of you being offered, just because of your sorrow and grief.

Tim

Anthony,

I will be brief.  Both you and Ninja talk about how people get depressed from little problems and it makes you laugh.  You say that you have to have a big problem to even understand.

I suggest to you that our problems would make some laugh, laugh for joy.  Spend a day in a big city cancer hospital where every soul there has cancer and many hundreds of people your age are holding on to an IV cart trying to get the strength to walk down the hall.  Go to a children's ward where Tim works and watch parents suffer as they watch their children suffer and die.  Go to a hospital where men your age have no legs or are paralyzed.  Ask any of them how serious they think our problems are.  Some will get mad, some will laugh, some will look in your eyes and tell you to focus on what you have and be happy.

It is scary, but in an instant you could be pleading to just turn the clock back to where you are today. In an instant we could all plead just to have the problems we now curse. 

It is all about attitude.  It is all about perspective.  It is all about what you choose to dwell on.

PS: You say this is not a psychological forum.  You are wrong.  In truth it is only the psychological aspects of this disease that can destroy us and our loved ones.  It is only the psychological aspects of this disease for which there is proven, reliable help.

Just wanted  to say my POV about the attitude that I think is best to adopt when facing a guy in distress... (the attitude facing a damsel in distress varies greatly, so let's stick to the 1st example ::)):

I think indifference, partial or total, only raises bad feelings for the guy who suffers. Either pseudo-indifference is given in return, or more usually anger. If the anger can't be turned outwards (like cursing the advisor), it's I think automatically turned inwards, and I think we all agree that it's no good (to say it simply).

The best docs I've seen were the ones who showed they understood my situation (of they faked damn well understanding :D) . Even if they didn't heal me, at least they were not cold-hearted fools waiting for my banknotes.
I always take the advice better when it's said with understanding of my condition. But maybe it's the way I am, maybe some people need indifference and coldness in order to take action.

I take care of myself, and I don't need people to bring me up (really), I always keep my self-esteem low, and I like it this way (it makes oneself more humble I think), but for some reason, if a friend comes to me and complain, I try the harder I can to cheer him up. Because as long as he's down, he's not likely to take action to improve his situation.

The guy who tells me, "hey why d'you complain? You still got your 2 legs!",
well, I tend to disrespect his next advice for some reason.

So let's not be mellow, but let's show compassion and a guy will listen to our avice and then he'll take action. Beat a dog and it'll bite you.

Ok, I stop here with my preaching. Have a nice day you all!

I guess the written word loses something at times such as the exchanged eye contact, the hand on the shoulder.  However, I believe that true compassion means doing what it takes to deliver the message of relief.

At about 13 yrs old I mentioned to a teacher how my oldest sister was somewhat stern and that my other older sister was my favorite because she always seemed to understand me.  I will never forget the teacher saying. "do you mean she always understands you or that she always agrees with you?  They are very different things you know."  It was one those enlightening moments that I thought about many many times.  After a bit of pondering I came to the conclusion that you have already guessed.  Most often, my oldest sister disagreed with me precisely because she understood me better than my "favorite' and agreeable sister.  While I love them both, you can also guess which one I call if I need some practical advice.

The worst thing we can do to a child with a handicap is to make them feel dependent and sorry for the tough breaks life has dealt them.  It is also the worst thing we can do for ourselves and for each other.  Agreement and a listening soul are great, but there is also the time for those that exactly understand our struggles to show the way to peace and improvement.  To do less would be cruel.  I view Tim's advice as the highest form of compassion.  He sees suffering and people fighting against adversity every day of his life yet he takes the time to share what he has learned from life and decades with Peyronies Disease.

There comes a time when you have to trust the wisdom of those that walked the road and who are miles ahead of you on the journey, especially when everything you are trying brings no psychological relief.

I think all of these posts are worth rereading.

Dear Hawk,

I didn't see some of the posts, I've just read them now.

I guess it's all about perspective as you said. Each of us has his opinion, his life experience and I have to respect them. But still I disagree with them.

First, I want to  say that I understand that children afflicted with cancer is devastating for the parents and unfair to the kids. There are many more people living real dramas out there, and I understand that.
I'm usually a guy who weighs his words before talking, we were just talking about how some people come to you and complain about their job, their life (I mean, not serious matters). Some people go to the doctor 3 times a month for no reason, just in order to reassure themselves.

In short, some people are professionnal whiners, if you know what I mean... Some people spend their life complaining, while they are healthy. And I just told Antony to avoid such company, because these people will make him go angry inside, because they don't have life-shattering problems like, in Antony's case, impotence.
 
Hawk I understand now, that Tim must see very worse cases than Antony's, I don't question that.

But when you tell a guy, "I've been there at 20", you should talk about the same thing. Peyronies at 20 (curvature) and impotence (at about the same age) are to me 2 completely different life experiences.

So if I'm to tell a guy "I've been there, that's not the end of the world", I make sure I'm talking about the same matter. Like a one legged man who tells off a man with no legs.

I understand that some people can be a bit straigthforward because they see harder things in their daily life (like Tim's experience with kids and cancer), but in the end, that's not showing understanding.

Sorry for my words, and again, please don't take offence, that's not my intention. That's also the opinion of a 25 year old unexperienced kid, so in the end, my opinion does not weigh much compared to yours who have seen probably more things than I have.
I've just reread my post and I don't think it's even worth a reply. Sorry but I could not resist replying to what was said.

In the end, Hawk, I agree with your conclusion. We, as young guys, may not see the way you see life because you have more experience. So that's why I tend to disagree, but maybe at 50 I'll agree with you... Again, it's a problem of perspective...

Thanks for your wise words, and to Tim for sharing his experience.

Bye.

I almost have to wonder if we have either a language barrier or a culture barrier here because Tim certainly never sounded like he was telling anyone off to me.  Maybe as you said, the way you read that revolves around unresolved issues in your own childhood.  For the record, I just happened to send Tim a pm just the other day thanking him for several things.  Chief on the list was his compassion that has helped me tap into my own compassion a little more.  I never suggested his work or his life made him a bit more blunt, but rather given him a well developed sense of compassion and perspective on successfully battling life's many problems.

Children may or may not see the big complex picture but I just watched a 9 year old go through gut wrenching chemo and passing his intestinal lining with his bowl movements.  At one very bad point he said, "Mom, you don't know what it is like to have cancer" .  His tearful mother replied, " You are right Joseph, I don't know what it is like, but I do know what it is like to have a little boy that has cancer.  Parents know the complexity of life and suffering and would trade any hope of ever having another sexual experience to free their children from such suffering.  I was very much speaking of adult suffering and illustrating millions of people that face challenges of a greater magnitude and how they cope.

You are new to the forum so I want you to know my opinion carries no more weight than your opinion here.  Unless I sign a post as the administrator, I speak as a member just like you.  I appreciate your posts, your point of view, and your conviction.  I find agreement that one should not hang around whiners.  My only point is that we can learn that just as they are blind to perspective often we likewise are blind.  We all see our plight but seldom see our gifts and opportunity.  So it is with the man with a blister, the guy with hair loss, the one with Peyronies Disease, the the young man with paralaysis, and the mother with a suffering son.  Often we are no different than the whiner.  We are only on a different level.  We gain nothing if we don't learn that always what seems unsurmountable to one seems like a bright and shinny life to another. 

I prefer to think that I was paralyzed from the neck down and a doctor just walked in the room and said, Hawk, I have great news.  I can restore use of your arms.  I can give you bowel and bladder control.  I can even completely restore use of your legs.  You will also now be able to have an orgasm and to feel touch on your body and on your penis.  You can wrap your arms around a friend, a wife, some small child.  All will be as it was except your penis will not work very well.  You may have to find an understanding women and use a VED or have a prosthesis, or enjoy other forms of sex.  I leap from my bed with profound joy, even though the same condition depresses so many.  Why ?

It is perspective. Mine is that I an thankful for what I have.  I an determined to make each day better.  I vow to live a full life and concentrate on what I can change both physically and emotionally.  I will not fill my head with destructive self-talk that will destroy me.

I have known men that their penis has gone from 8" to 5 1/2 inches that were
destroyed, lost their job, lost their wife from depression not penis size, considered suicide.  I know there are also men that never had a penis as large as 5 1/2 inches that live successful happy married lives.  None of this depression has to do directly with how our penis works or how it is shaped.  It has to do with our attitude about those things.  Of all the problems of Peyronies Disease.  We are in total control of our attitude.  I want Anthony to learn that he can be happy.  I want him to understand her is in charge of fixing his attitude.  I want to empower him to fix the worst part of this disease.  With that fixed he will even be able to fix some of the physical problems that trouble him so much.

The message is that we clearly understand Anthony, whether our problem is exactly like his or a bit different.  And we understand the principle that applies in all cases.  We have tried to share that understanding.

That is compassion.

PS: Sorry for the long post.  Posts should be shorter.  Few like to wade through such $%^$^.

I think one of the great values of this forum lies in the fact that people like Tim can be very frank and express it the way they see it.  I find it no less valuable that people like Ninja can likewise express their views on the subject and openly question Tim's comments.  There are actually two conflicting issues here.  First of all, people who are suffering need to be treated with compassion and understanding.  I understand the importance of that.  But secondly, what we WANT to hear is not always what we NEED to hear.  There are times when our perceptions need to be challenged and that process can come across as being cruel and uncaring.  But affirming rather than challenging someones depression can be even more cruel and uncaring.  We ALL, including Tim, wish the very best for Antony and pray that he will find relief from his sufferings.  Each of us are doing our very best to be supportive of him in his time of need.  But in doing so, at times we will risk being misunderstood.  But that is a risk that is hard to avoid without being superficial and shallow.

In times when we are feeling depressed we need to seek out appropriate medical intervention, try to make sure we are getting a good diet and plenty of healthy exercise, and seek spiritual counsel from trusted advisers.   Medical intervention is usually a short term stop-gap measure.  Diet and exercise are more long term and are usually neglected when we are depressed which incites a sort of vicious cycle wherein that neglect results in ever deepening depression.  The spiritual aspect is an even more long term factor since it guides our whole world view and determines whether we will live in hope or despair.  If we are hoping in the wrong things we will ALWAYS be disappointed and end up in despair.  If we are hoping in the right thing we will have hope through our darkest hours.  That constitutes a very powerful equation when it comes to dealing with things like Peyronies and ED.

- George

Tim and Ninja seem to balance out.  I understand both points of view.

Nobody here wants bad things for its members.  As Hawk pointed out, the psychological aspects are the biggest threat.  If we attack the physical manifestations of Peyronies Disease while ignoring the psychological manifestations (which are often physical as well), we will endure needless suffering.

Tim has been a great member for a long time with great contributions.

Hawk, sage advice.

George, always guiding us to wholeness (body, spirit and mind)

I am happy Ninja has come along with his compassion and humor (I may have met my match).

This is a GREAT FORUM!!!

Antony,  can you see how many people, in their own way, are pullin for you?

Empathy is not the same as feeling sorry for someone, or pitying them. Also, empathy is not the same as feeling the same as someone. None of us can feel what someone else feels. It is precisely that fact, though, that isolates so many of us.

I may imagine, well NinjaGaidin isn't as experienced as me, so he can't understand me, or Hawk didn't go to the same school as me, so he can't tell me anything about me, or Liam can't know me for he comes from a different state.. until the only person who can know Tim is Tim... And so I isolate myself by seeing the differences, instead of the commonalities. It is when I start to see how we suffer the same way that I start to end my isolation, and to break free of the ties that bind me. It is when I see how we suffer in the same ways, that I finally end my own isolation.

It is by empathy that I am freed of my own pain. And empathy is the act of feeling with others; to feel their pain (sure - it brings to mind Bill Clinton saying that - but why do you think he was elected twice?).

It is by feeling my connections to others that I end my isolation, and that is where my healing starts - not in the office of a urologist who has not enough time or inclination to help me.

Now, that is my story. But my empathy is not endless, and it is true that I have short patience for those who refuse to stop wallowing in their misery. I need to work on that sense of impatience.

But I also grow angry when my own pain or the pain of others is minimized as if it is less important. As if a man of 50 becoming impotent and unable to please his wife is "less terrible" than a man of 20 losing his erection quality. I don't either need or want my own suffering to be graded and found to be not so bad as that of another. And I do see a lack of empathy coming through to me (usually) when others cry "Woe is me! My story is the saddest!!"

I don't need to believe that any story is the saddest - it all breaks my heart, all of it. I get angry at the laggard and lazy response of the urologic community in failing to help those of us with this disease, but I feel sad for all the men who go through this - and there are so many of them!

Finally, I do not respond well when I hear the words "It (or she)(or he) made me feel this way!!" Nothing makes us feel any way. We chose to respond the way we chose to respond. we can get angry at something or we can chose to act differently. I will repeat the story I recently heard that affected me so much:

Marshall Rosenberg was counseling a woman who suffered in the Rwanda genocide. She had cowered in her kitchen in a cabinet and listened as her three young sons, her sister, and husband were murdered in the house. When he spoke to her and asked her if she was mad, she replied, "No - I can't say that I am angry. I want to understand how someone could do this to another human being, and to find ways to prevent it from happening ever again."

Marshall commented on this to us - how can any of us say "She made me mad!"? If a woman can respond by saying she is not angry when her family was murdered, how can I say "Jim at work made me mad"?

Nobody can make us mad - we make choices and live by them. I believe that we have more choice in how we feel than we know. And so I wanted to share that too - that I hope those who feel great anger or pain can come to understand that they are free of that cage already. I am not talking about assuming sainthood - I am not denying pain. But when we say "Pain is inevitable, suffering is optional", we mean it.

So no, I am not perfect. I do not claim sainthood, or anything close to it. But I hope that by learning to connect to the pain of others, and by listening to those who have walked down a similar path before, those new to this disease can learn that the burden need not beat them down. That they are not alone. And they are not worse or better than anyone else - they are simply people trying to handle the pain of being alive like all the rest of us.

Not just pain, but recovery, is our birthright. With luck and the will of a power greater than us, we will get there.

Tim

I dunno, I do pretty well in isolation. I have a ''no quit'' attitude, and am I always optimistic. I guess my emotional side isn't very strong or I just manage to dull it down quite a lot.

Good post Tim!

This is something to which we can all aspire.

Dear friends,

First Hawk, I agree with you. Tim, I agree with you. Liam, I agree with you.
I knew I would start a philosophical fire here  ;), I'm sorry for that.
It's just that our attitude differs sometimes.

When some people give advice, they either show empathy, or they try to send a shockwave in order to made the other guy react. I know some people who try to build anger in the other guy's head in order to make him dislike him and say "I'm gonna fight, go get f... with your advice".

Funny way, but I saw it work on some people. Really strange, it's like doing the "bad guy" on purpose.

Anyway, my attitude is : show empathy (thanks for the word Tim  ;), that's what I meant by compassion) and get the other guy's confidence in order to "kick his butt" and make him see there are solutions to his problems.
I never dwell in agreeing all the time, I can't do that, it's not giving help. But on the other hand, I stay away from professional whiners, who never take into account the advice you give them. They just waste my time when they come to complainf for the sake of it...


Hawk, there was no cultural barrier at that point, it's just when Tim said a few things like

QuoteI do not need to hear about how much "worse" it is to get it young - that already happened to me - that was my experience

, it's just that it's just a bit inadequate as I said, you don't say, "hey kid I don't need to hear that, I had peyronies at 20", when the kid is talking about being impotent at 25.
That's just 2 different issues, when you compare 2 different situations, the guy in need feels like he's not understood (know what I mean?).

But I understand Tim's daily experience, and his lack of patience as he says is humane, you can't take this when you face kids in real pain. But please compare matters that can be compared...

Ok, no more talk, I raelly respect you guys' POV and experience, but let's be cautious when facing a depressive guy (I had Antony in PM, he's strongly considereing suicide, so I guess I'm not taking this threat lightly. But I'm kicking his ass "big time" as well, no way I'll comfort a guy with such dark thoughts).

It seems our last posts would fit in a 500 pages novel, as I can see...  ;)


Take care,

I guess I'm not very much into the psychological aspects of things. I dunno I'm not very emotional by nature.

Hitman, could you trim down the size of your posts a bit?  They are entirely to long!   ;D







I envy a man that can get right to the point.  It would have take me and a few others 500 words to say that.  ;)  The first line of my long post was actually "Ninja, I will be brief".  After I wrote a novel I had to delete that line so I would look less like a fool.

Yes Hitman, like Hawk said:

your posts take way too much room in here!  ;D

I can't avoid writing novels  :-\ It's good when somebody stops the flow of blablabla with a good common sense sentence. Phew, I thought we would discuss this point until the end of times... ;)

Enjoy your day guys!

Guys and gals,
     I am spending some time with my adult son this weekend going hunting.  My sons are both married with children.  They have all asked about my mental state as they have noticed that I am not like "I used to be".  What is the proper thing to say to my sons about Peyronies Disease?  We do not know all the ramifications of the issue vis-a-vis its genetic pre-disposition, its cause or its treatment.  I do not want it to divide me from my sons.  Perhaps my experience will assist them in their issues with their penii should anything ever happen.  I do not want pity, only understanding.  At their ages and experience, they will understand the issues of intimacy and performance better than in their youth.  What would be appropriate information?  I am using VED and stretching to perserve what is left in the hope of regaining some dimensions.  I am trying to pre-empt the questions that might arise should the grandkids find such apparati.  I depend on your advice and counsel.  Thanks.

That's a tough one. I think that you answered it yourself when you said "At their ages and experience, they will understand the issues of intimacy and performance better than in their youth."

First, no kid wants to think of their parents as sexual beings (as a professor of mine put it: "Well, there's me, and my brother, so that's twice I know of, but I don't think they would do it more than that!"). It is difficult for them, but not creepy or salacious.

How about saying: "I have developed a fibrotic condition of my penis that affects my erections, and I am sad about that, and determined to make it better if I can. I am doing stuff like taking medications to reverse the disease, and applying mechanical traction to keep things as strretchy as possible, but, yeah, it is upsetting to me and I am not the same as I used to be."

From there it will go well I bet (though you should expect the joking that comes from the anxiety of knowing something frightening).

Interesting that yesterday I was advising a 17 year old to try talking to his Dad. When I talked to my Dad, it was scary as hell, but by the end of the day everyone in my family knew, and it was OK (I was about 20-21).

Tim

I wouldn't say a word about Peyronies Disease.  A general statement about some health problems that are not life threatening (herniated discs, constipation) but have you down should suffice.   The odds are they won't ever have it.  And even if they got it, what good would you telling them do.  It will just make them worry about you and worry that they might get it. 

 :D  I smile because Liam's response surprised me.  I think I disagree.

I have 2 older sons I have not told but I consider it often even though they have never noticed any behavior changes and have never asked.  If they did I am prepared to tell them and I might anyway.  This is why and how I would do it.

If they got Peyronies Disease what is the chance I would ever know?  For all I know, one of them is suffering from Peyronies Disease as we speak.  How horrified would I be if I found out my son suffered in secret with Peyronies Disease  5 or 10 years and I was a founder and administrator of the only forum and the biggest Peyronies Disease organization in existence?  Well you can guess that answer.  It is extremely unlikely, but they could be on here under some member name and I would never know.  After telling them I think they would feel very free about confiding in me about deeply personal issues which gives me a chance to be a strength and a wise father to them.  Also, there are clear genetic links although probably not real strong ones.  As family members we care about each other and I think we are entitled to have at least some vague background about each other's struggles in life. 

I would / will approach it something like Tim but maybe more vague unless they ask for specifics.  In your case I would say something like:

"I know you have noticed some change in me and I didn't want you to worry or wonder.  I 've developed a fibrotic condition of my penis that affects my erections.  Like many of life's challenges this has been a real mind bender at times but I am trying to deal with the physical and the significant psychological aspects of this thing.  I just thought you were entitled to a straight answer."


At this point it will become clear if they want more information or not and that would be my que to respond to questions, or flow into another topic.

PS: every family is different but if me or my sons told the other that we had some health problems that accounted for behavior changes but they were not life threatening, the next question would be, "well what the the hells up?"

Bert:

All of the previous posts lend credence to the subject. But, if I had to make the decision facing you now, I would be as frank as possible and just lay all the facts out on the table for discussion. Simply tell them that you have Peyronies Disease. Give them all the facts and information you have available to you about the disease/condition.

Hiding the fact that something is wrong with you from your family can and will cause problems later when they find out from someone outside the family or at least not related to the family. Being up front and honest with your son(s) will make them respect you more for it. I lost my dad when I was 17, in the Navy far from home and lonely, only to get a telegram that he had a major heart attack and did not survive. I missed out on the best part of our lives together since he left home to work in a shipyard in WWII for the war effort.

So, bottom line, just simply let it all hang out, get it out in the open and discuss it. They will have more respect for you than if you tried to hide the situation, etc.

Sincerely, Old Man

Thanks, guys.  I think I'll just play it by ear and answer their questions.  People always have a different set of questions.  I think that I respect them too much to burden them but perhaps just knowing that Peyronies Disease exists will help them or someone they know.  I pray they never have it but I am thankful that the Forum exists where they can get support that they will NOT find at the urologist's office.  Who knows who might talk to them if they knew that it was not shameful.  It's just parts like ani and teats.  Our attitude is what makes us survivors.  Who is ashamed to have prostate cancer or breast cancer?  We are not freaks.  We have a damned physical problem and we would not wish it on our worst enemy.  Information is power.  People will hear what they need to hear when they need to know it.  I will let you know how it goes in the hope that it might help others in the same way you have already helped me.  My wife has left it up to me like I knew she would.  Trust is a magnificent thing.

I understand and respect everyone's honesty.  I'm thinking, though, if my dad had told me he had it.  I would have spent the rest of my life checking myself.  Then, if against the odds, I found I got it, what good would the knowledge my dad had it do?  Maybe I could have started a preemptive treatment of vitamin e and colchicine.

My dad died of colorectal cancer at 57.  I started getting checked at 47.  I started asking my doctor about screenings at 37.  This, when caught early, can be treated.  There is also a familial component.  I needed to know.

I can think of no good reason to burden the kids.  I just don't think the information would help them in any way.  If you lie, they will go through their life blissfully ignorant of Peyronies Disease.  What a blessing!  I, also, would not want to be pitied.

It is true a penis is just a "part".  But, it is the part with a man's self identity and self worth.  The only reason you are considering telling them is because of the emotional trauma you are experiencing.

I respect each person's decision.  Each family dynamic is different.   I believe a lie to spare sommeone's feelings is good and unselfish.

We all have our own ways of understanding our own situation - driven by our personal experience and needs.

I think that, for you Liam, you understand that hearing that might have worried you. To an extent, our children often learn from us and model their behaviors on our own: you might be like your Dad that way, as I am like mine.

So the choice does not come down to which way is "better". It is reasonable to worry about burdening adult children with information - but it is also possible that such information would increase closeness by the act of honesty. I know that learning about health issues in my own family never burdened me with fear that I would get it too.

So it should boil down to the kids. What are they like and what can they handle? If they are perceptive enough to recognize that something is wrong, and open enough to ask about it, it sounds to me like these are adults willing and able to hear about Peyronie's.

Tim

Liam is right, we are all different.

If My Dad had told me I would have taken from it that: Crap happens in this life.  It may be Peyronies Disease,  diabetes, accidents, rape, or cancer and meet those challanges and go on.  I would have know that my Dad could go on in spite of whatever problems and I could too.  After he was gone, I probably would have looked back and thanked him for the example.  I hope I can teach this.  In fact, I hope when it comes time to die, I can teach my children how to do that as well.  I believe we are here to lead the way down life's path and this is a very important part of the process.

Also, it would have made it occur to me that penises are not indestructible, which never occurred to me for the most part until 3 or 4 years ago.  I can truthfully say that had it occurred to me that I think I would be in a little better situation than I am in right now.

Hawk

I don't have children so it's easy for me to offer advice.  Speaking only for mysefl - I wouldn't burden a kid with this anxiety. It might or might not happen, and it might be easily fixable by the time it does.  It's one thing to tell a young guy that heart problems run in the family so he should take care of himself; it's another thing to drop this sort of a bomb on him,  especially since he can't do anything about it other than obsess over it daily.

Not to beat a dead horse, OK, I guess maybe I am, but the main point is not to prevent Peyronies Disease, I would consider telling my sister if she wondered why I was depressed, or why I was not dating, or why I was traveling out of state to a doctor.  BertCobb indicated his flesh and blood were concerned about him.  If we deprive family from being concerned about us, we teach them not to allow us to be concerned about them.  This raises the question of just what is family?  I have never felt a family member did me a favor by hiding information from me about a problem they were facing, and I have had many terminal or life threatening situations in my family as well as a host of emotional issues.

I may be wrong, but I have to wonder if this is not a case of making a virtue out of our own embarrassment.  "I don't want anyone to know, so I will attach lofty reasons for not telling anyone".  There are hundreds of conditions that we would tell our sons about that would not help them prevent such situations but we would tell them if they asked rather than lie to them. 

Here are a few searching questions:

Would we try to hide plantar fasciitis from our family so they did not worry they would get it? 
Would we hide a herniated disc?
Would we  hide arthritis?
Would we hide that we have a family history of childhood diabetes in the family? (They can't prevent it)

I think more is going on here than sparing the other person.  Maybe it is kidding ourselves.

Yes, I agree with you Hawk.  There are certain things I am too embarrassed to talk to my family about and unless there is good reason I probably would not.  Included are:

1) Anything remotely related to functioning of the bowel   :-[

2) Anything related to genitals and/or sexual functioning  :-[

3) Anything related to mental health (they don't know every time I stress about something)  :-[

I'm sure there are more.  BUT, if there were a reason like their safety or their health, I would share all, of course.

Even parents need to keep some things private. 8)  With Peyronies Disease, there are beaucoup reasons not to tell your kids.

I guess I'm from the old school where a man is expected to keep his suffering to himself.  You guys are just too enlightened. ;)

The important thing is for families to love each other.  If thats the reason for whatever the action, things will work out most of the time.  :)

For Bert,,,,Don't hesitate telling your sons. I told my son and nephews, brother and brother-in-law's...I'm like Hawk i found out my penis was not indestructible, and i feel we need to educate our male family members so that hopefully they can avoid going through what we have had to endure..

I really feel that talking to the men in my family has made us closer by the act of honesty on my part...I will admit at first i couldn't talk about it to anyone,,but the more i read and learned the easy'er it was to talk about it.

My wifes brother who is a couple of years older than I came down with it about a year ago and i was the first one he called...He got help and now is almost cured...So it paid off to be honest to my family...

Being totally honest and open with your son's , pays off in great dividens,,my son and I can talk about anything at any time and we have a great relationship....

This is just my 2 cents worth.......Kimo

This is not directly Peyronies Disease related but it is indirectly related to this topic.

Liam, maybe I do seem in touch with my feminine side or to be enlightened. ::)  I hope I don't appear to be espousing ivory tower concepts or be condemning those with other opinions. 

I think family and even true friends are those that we don't put on airs to impress.  They are people that we can allow to know our warts as well as see us when our armor is all shined up.  I think love is acceptence of the real us, not the acceptence we sometimes get on the internet for the persona we present.  To me love has never been some vague intangible feeling, it is a bond demonstrated by mutual actions of concern, acceptence, and support.  I also accept the ideal that honesty is always the best policy for the long run.  I suggest that honesty is a necessary ingredient for real relationships. Honesty is the foundation upon which every other attribute is built. 

This is different than suggesting everything is dinner conversation.   In fact I do not think there is necessarily a need to share this information with family at all if they do not ask questions or express concern.  If they do, how do we justify dishonesty with them?  I also do not suggest that intimate issues be cheapened by sharing them with people we do not have intimate relationship with.  That is why even though I do reveal my identity to many professionals in the Peyronies Disease community, and with associates on line, I do not associate my real name with my forum posts. Details of my penis size, how my wife and I work through Peyronies Disease issues and other such posts are not for whole-sale public consumption by my neighbors.  If personal acquaintances really care, I would at least like to make them work to search the internet to put my real name and "Hawk" together.


Hawk

PS: I wonder how we expect to gain awareness, or shine the light of education, on Peyronies Disease when we can not give our own loved ones an honest answer to a sincere question.

QuoteThis is not directly Peyronies Disease related but it is indirectly related to this topic.

On the contrary, I think this is, at least for me, a central issue.  Who do you tell?  How do you tell them?
My personal answer is my doctor, my wife, and the forum (anonymously).  Discussing two sides of the issue can only help us understand our choices.  To be honest  ;) , I never considered telling anyone other than my wife and never imagined anyone else would.  At least now, thanks to this topic, I have explored this option.

Quote...how do we justify dishonesty with them?

There's an old saying, "Never tell a pretty girl she's pretty and never tell an ugly girl she's ugly."  Kindness and good judgement should be the guide.

It's like the universal answer of all husbands when asked, "Does this dress make me look fat?"  "NO!!! You look great!"  ;D

If everyone knew each others true thoughts, we wouldn't have family and friends.   :)

In the end, each man must decide what is best for him, his wife, and his family.  There is no one answer.

QuoteI wonder how we expect to gain awareness, or shine the light of education, on Peyronies Disease when we can not give our own loved ones an honest answer to a sincere question.

I had to search to find this quote I half remembered so I could give proper credit.  It expresses MY feelings. :(

There are only two ways of telling the complete truth - anonymously and posthumously.  ~Thomas Sowell

It's embarrassing.

If I need to get a surgery to fix my penis, and need a recovery period, how do I tell my partners so they won't "look at me like that"?

It is all in our heads - this worry and shame and concern. Compassion awaits us in others - yet we are too ashamed to stand up and say we have this condition. I imagine going on Oprah to talk about this - and then thinking "But my patients would see me and then..."

No matter how I cut it personally, it is hard to really talk about this, but every time I have, it has been to the good.

Tim

Hello - I have been coping with Peyronies for almost two years. In my area of the U.S. it has been difficult finding Urologists who have treatment programs. I have just been accepted into one but I cannot start for two months. It will consist of verapamil injections, topical creams and electrical impulses. This has affected me in ways I cannot express. I feel better now that I have started going forward with a plan. Thanks for your posts as I have spent many hours reading and studying. I plan on contributing as much as I can as long as it is helpful. HASCAL.

Welcome,

I agree.  It always feels better doing something.  Good luck with the treatment.  Keep us apprised of any progress.

Look forward to getting to know you here.

Liam

Quote from: hascal on September 09, 2007, 12:15:45 PM
This has affected me in ways I cannot express. ... I plan on contributing as much as I can as long as it is helpful. HASCAL.

Hascal,

That is the great thing about the PDS forum.  Just that statement from you does express it because we are with you.  We have experienced it, we do experience it, and yet we have regained our balance.  I am glad you found us and I am thankful for your post.  Good luck!  I look forward to hearing from you.

Quote from: Liam on September 09, 2007, 06:42:35 AM
There's an old saying, "Never tell a pretty girl she's pretty and never tell an ugly girl she's ugly."  Kindness and good judgement should be the guide.

It's like the universal answer of all husbands when asked, "Does this dress make me look fat?"  "NO!!! You look great!"  ;D

There are only two ways of telling the complete truth - anonymously and posthumously.  ~Thomas Sowell

Liam,  I know you will take this in the spirit it is intended.  I really do like those quotes. They are cute.  I am a huge fan and a long-time admirer of Thomas Sowell but I actually like this quote even better:

"Thou shall not lie" ~ God           -----     Profound in its simplicity, and the only decent way to live.

Well guys, I worried for nothing.  I spoke with my son while we were out waiting for the doves to appear.  I told him I had this condition that was called Peyronie's and asked if he knew what it was.  He said he did and had nothing else to say or ask.  I let him ponder it all for a while and asked again if he had any questions.  I told him that it was NOT going to get me down and I would go on living and looking for a cure until I found one or died. He said "good for you".  The relationship is intact and in fact he said it was one of the best "visits" he can remember.  I do not advocate telling everyone you know or strangers BUT some "need to know" and they will hear only what they need to know.  If they have questions afterward, I will answer them with the same honesty that I shared with them at the start.  Yes, I NEEDED to tell my son and I heard that he will quit worrying about me.  That was worth whatever embarassment might have happened.  Be bold and keep on living. Hopefully this will help others trying to make these decisions.  Thanks again to all who advised.

Bert,

That was a valuable report and went much as I suspected and as Tim related in his experiences.  Our imagination always seems to expand these things into such mental monsters when they always seem to be very manageable in real life.

I know that lifted a load off of at least two people.

Bert,

I'm glad everything worked out.

Hawk,

Bwah ha ha ha :::devilish laugh::: 

Even God doesn't let us in on everything.   ;)

Quote from: Liam on September 09, 2007, 10:12:50 PM
Even God doesn't let us in on everything.   ;)

Liam, just which point that we were discussing does that apply to ???  Does God lie ???  Does he condone lying ???

I never said you have to announce everything to everyone.  That was never the conversation and I will not allow you to make that the conversation after the fact.  It was about lying to loved ones that were concerned and asked you what was wrong.  You directly advocated and justified lying to them.  Now you try to bolster your argument by acting like you are borrowing this approach from God.  PLEEAASSSEEEEEE!  Your correlation makes me dizzy as does your response to the question of how we are ever going to advance awareness, education, and research, when we can't even give concerned loved ones an honest answer when they ask. 

Your response was we can only be completely honest when anonymous or dead  ???

Excuse me  ???

Take a different view if you must Liam, but do not defend them with absurd analogies that have no application.  When you run out of valid arguments, until you think of one, remember the song from our youth "Silence is Golden"  :D

PS: Just to be clear, difference of opinion I can accept.  Irrational anologies and arguments drive me crazy because they are...well.... irrational.

Hi guys,

I've been away a few days, I've just read this post, and I think all advice was good (Liam vs the-rest-of-the-world). Both sides are understandable.

-I think if it makes you more comfortable about your condition, you should tell it to the relatives that are concerned about "what is going wrong" with you.

-If it makes you feel vulnerable and you are "old school" (ie you don't want to show the weak points because you don't want people to worry about you), then keep silent.

Of course the best option in order to raise awareness is to talk openly to our relatives. Especially to men, because most tend to think that their penis is indeed "indestructible".
Personaly, although being young, I'm old school (probably a thing that I share with my dad) and keep this to myself as much as I can. And this is not about embarassment (I don't give a damn about embarrassment), it's just because in the end, people will probably stop worrying about you and take this "lightly", because they won't understand how life-altering this condition can be.  You have to live it to understand it.

> If you tell them you have cancer, then they will show support, and probably a LOT more than when you tell them "I've got a crooked, shrunken penis, and that's basically my only concern".
After a few seconds (or a few minutes pondering), they will think: "you're still alive, so why are you complaining?"

So as long as it's not a "killing" disease that I've got, I'll keep my mouth shut cause in the end, who gives a damn about a problem that "you can live with"??
As an aftertought, I think with a killing disease, I would even shut my mouth more tightly cause I don't want people to worry about me... :D


Raise awareness if you want (I think it's the best option to help other guys), or shut your mouth if you want, but what I mean is just: don't expect great understanding from the telling. That's my POV only.

You have to do it only to raise awareness, and not in order to get support, cause I think in the second case, you will not receive this understanding for more than 10 minutes. 
And congratulations to the people who took a step forward and talked about it openly to their relatives. That's not my behavior, but I respect this brave and self-denying attitude.

Bye!

Ninja, I agree with almost everything you said, including your last line about being blessed if you have strong family ties.

Several years ago my son and his best friend went 1800 miles from home to college.  His friend dropped out after a semester and came home because he felt he did not have many friends.  My son made a statement, "Making real friends is hard work, you have to be a real friend".  That is a very true statement.  It is also true of strong family relationships.  They seldom "happen" like random lightning strikes.  We have to cultivate the depth of our relationships. 

My experience is that we can only do that by being empathetic, sincere, honest, and getting out of our comfort zone on occasion.  People are more likely to open up to us when we open up to them.  I have dozens if not hundreds of examples.  Some are as simplistic as sharing my real name with forum members who then see that trust and do the same.  Some involve life long reaching out and wondering if it is having any effect only to be startled one day when that person reaches back.

Trust me, I am far from perfect or even remarkable in this endeavor.  Nevertheless these are my observations.  First be a friend and you will have a friend.  First be a true, intimate family member and you will cultivate one.  This is true even if it takes years to polish the rough edges off of a gruff old man raised from the "old school".  Someone has to break the cycle, or soon it is your grandchildren.

Hi Hawk,

I think I've been the one to try breaking the cycles in my family, trying to bring people back together. I'm a guy who stands in the background, live and let live kind of guy, and when my family (mom, sisters, brother) need a hand, I'm usually there. My life story is very complex regarding my family, I did my best to improve what could be improved. But I guess because of my dad's behaviour (very patriarchal, god-like dad), my family has been going in all directions during the last year, and I guess no miracle will bring us back together.
It's a mental, subtle thing, and I realized that my sisters were having a family now, my bro only cared about making money and saving money, and my mom is going desperate cause of my dad who behaves more or less like a tyran (big cliché I know, but still it's true).

I stop there my story, but I know it takes more than one person to improve the family ties. And it's not all the help I tried to give to my family (lots of DIY, babysitting, making parties to bring us together...) that will change anything.

So in my POV I keep everything to myself (I took that decision after taking time to analyse the "real", though subjective state, of my familiy ties)cause I guess no one wants to hear it, and the only one who truly cares is my mom and she's the last person I want to give worries to.
So I keep on with the DIY (my sister needs me now, she's going to open a hairdresser's shop, so I'll do some renovating soon I guess  ;)), and babysitting and all that stuff, but in the end I've lost my illusions about bringing things in a better situation.


That's why I respect the ones who can talk about it to their kids or close male friends, because it's very important, both for ourself and the others in general. 
Hawk, thanks for the wise words.

By the way, to come back to the original title of this thread, one question:

How do you guys cope with Peyronies actually?
I'm very curious about your replies, so if some of you could reply a few sentences saying what makes them hang on, that'll be nice to share your experience.

I'm particularly interested in the POV of the guys who had this disease for more than 5 years... and in Old Man's POV as well cause I think he's the Elder in this forum...

What makes you keep going? Pure hope? Setting objectives in the future? Changing your way of life (job, way of thinking) , alternative medicine, Medications (antidepressants and all...)?

I'm more or less considering taking antidepressants, but, well, I think I'll wait a lil' longer and try to find relief in something else before considering taking pills for my head.

Thanks for your replies,

ninja:

You have asked the "BIG" question about how to cope with Peyronies Disease. Have had the mess for so long now, that I hardly remember the early "treatments" that my doctor and I used. We tried all the known so called cure meds in the early days which consisted mainly of vitamin E, Potabo, colchicine and some of the prostate shrinker drugs. None worked.

During the 1950s I was working for the U.S. Army Corps of Engineers on an extended tour of assignment away from my home town. Durng that time, I was referred to a radiologist who gave me 45 three minute bombardments of radiation in the affected area. Nothing happened with that and we moved on to the E treatment again. Still no help, but was able to function sexually with a little trouble. Being single at the time helped, but the Peyronies Disease did take its toll on my sex life and caused some problems with keeping partners for extended periods of time.

Later, the verapamil injections caused the Peyronies Disease to worsen and they were DCd. Then, after prostate cancer surgery, I was prescribed the VED for maintenance as the uro said. The pills entered the scene, but they did nothing for ED, so I stuck with the VED for that. Later, my uro and I worked out a regimen that worked with the Old Osbon Esteem manual model VED. That gave me a final step toward reducing the symptoms to almost nothing (I say almost nothing since there is only a very small area that is not fully recovered, but does not interfere, etc.) and today I can perfom without any problems whatsoever.

My entire history is posted somewhere on the Child Board recapped thread, so the above is only a thumbnail version. I managed to cope with the mess simply that giving up was not an option. My sexual drive was very pronounced and I just kept on trying things until something finally worked. You will have to do the same thing. Just make up your mind that you can have a positive attitude about it and go on with your life. Taking drugs to cope with it will only lead to deeper dependance on them and you know where that leads. So, keep your chin up, keep busy with projects or things you like to do and never give up!

Hope that the above helps in some small way and just keep us up to date on how you are coping with it.

Regards, Old Man

Thanks Old man for this optimistic reply,

That's indeed the kind of advice we need to hear, positive one.

QuoteI managed to cope with the mess simply that giving up was not an option.

I guess that's the attitude to take in life indeed, never say die, no matter what. I'll do my best to walk this path.

QuoteTaking drugs to cope with it will only lead to deeper dependance on them and you know where that leads. So, keep your chin up, keep busy with projects or things you like to do and never give up!

Again, wise words from a wise man. I'll keep my chin down for the sparring sessions  :), but I'll try to keep it up the rest of the day. I lived through a few bad times (like everyone, no whining here) and I know what introspection is about. So I'll bear this stuff as long as I can anyway, hopefully I'll face it till the end and I'll overcome this situation. I don't know what future holds for me, but I know if I stop fighting now, I'm doomed. So I'd rather fight a lil' more.

I keep many projects in mind, and even though the end of them doesn't bring me much of the expected satisfaction, I'll do them anyway for the sake of it. My story is full of holes and is not going very straightforward (at least in my POV), but I admit I find a lil' satisfaction when I achieve a tough project. 

Thanks Old Man, your words have great value.

We owe a debt to Ninja for asking such an important question about coping with Peyronies Disease.  This is at least half of the battle against Peyronies Disease and it is the half that were we can actually exercise control over the outcome.

I will add the most important things that help me cope which have not already been mentioned.  Those so far have been great.

I think successfully coping with Peyronies Disease begins with what all mankind requires, that is plain, basic, coping.  Adversity is the COMMON LOT of all mankind.  It can come in the form of being born with a micro-penis, a disability, an encounter cancer, divorce, bankruptcy or any of the limitless problems in the list of adversities that assault humankind's existence.  All of mankind has had to do more than learn to survive, they have had to learn to thrive amid adversity.  Most of these adversities are invisible to others and are carried privately in the 

I have many crises in my life, Peyronies Disease and ED are just two of them.  I doubt that anyone on this forum was or is more sexually oriented than I have been.  I went from truly phenomenal performance ability to ZERO ability in 4 hours of surgery.  I mention this to make it clear that I am not coping with a 15 degree bend that bugs me because it is not straight.

Humor - Anyone that reads "On the Light Side" knows I have maintained a sense of humor.  I remember nursing a car across the desolate Midwest U.S.(sorry mid-westerners). I was with my friend who has a great sense of humor.  We pushed, rigged mis-fitting parts (no foreign parts to be found), and the worse it got, the more we laughed, cracked jokes, and even played pranks on parts stores that did not have what we needed.  I laugh now just to remember it.  The ONLY difference between a great uplifting memory and agony and depression was humor.  That experience could have broken spirits and destroyed happiness for several days.

Someone once said: When I think about the times from the past when I was most alive, I begin to recall experiences that made me laugh. Certainly one of the best ways to ruin your life is to take everything too seriously, especially yourself. Noticed how really successful people are able to laugh at themselves?"
Adversity has humor and you must find it to thrive.  I have never in my life run across such well developed sense of riotous humor as I found on the police department.  It can be and it was clearly a release and coping mechanism that worked wonders in dealing with the negative things the mind has to process.  We can find some humor in most situations.  Notice that most comedy routines are based on stressful, unpleasant situations.

Purpose – We must work to gain a vision of our purpose for existence.  I believe there is purpose for being here and that the truly greats from Mother Teresa, to Einstein, from fields ranging from music to philosophy, depended very little on perfect sex organs or a "ideal sex life" to get them there.  As a sexual being, I do not discount sex, but it is the backdrop or trimming, to our lives.  It is not the central purpose of our existence and dwelling on the sidelight cannot be allowed to take our minds off of the central purpose.  We all must examine and find the answer to this question.  Why am I here?  I believe the answer has nothing to do with "for the sole purpose of self-gratification" or to meet an idealized conception of providing stud service.

Focus- once we find the purpose of existence then we focus on that.  A finger held close to the eye can obscure a mountain in the distance.  If we focus on the sidelights of life, we get to the end of life to find out we missed the entire point.  We have power to choose what we focus on.  I had a friend who is now dead.  He was of American Indian descent.  He gave me a copy of a poem about having a soaring eagle in his soul that could soar above all the earth.  It was lofty and noble, but he also had a wolf.  The wolf lurked and stalked him, always thirsty for his demise.  The poem ended with the lines:  "Which one will gain strength and win this battle for my soul?  The one that I feed"

Attitude- All of these deal with attitude.  Attitude changes everything. To save typing, I ask you to ponder the many instances when exactly the same thing can happen to 2 people and the impact on the two is totally opposite.  The examples exist with major events and daily happenings with all of us.  Only the intangible of attitude is different.  Attitude changes EVERYTHING.  The good news is that we can gain full control over attitude. 

There is much help to be found to help us develop all of these coping skills

Although in my posts I often make the point that none of the available treatments work, one thing that keeps me going is the belief that there is going to be a solution at some point.  The AA4500/Xiaflex/Auxilium story is long, discouraging and more than a bit laughable, but at the end of that road a product is probably going to appear, and it should have a real impact, especially as urologists learn how to use it effectively.  It is the first and only non-surgical treatment for Peyronies backed up by credible studies showing that it works, and the only one to attract serious investment money.  It might happen next year, or in '09, but I think the probability that it will eventually happen is now very high.   

Another way I cope with this thing is by staying physically active and keeping myself in decent shape in my mid-50s.  Peyronie's can corrode your self-esteem like battery acid; you absolutely must counter that, somehow, and exercise is one of the most effective ways.

The most important thing in success is to avoid two groups of people: the joy-stealers and the nay-sayers.  I have encountered both in the past few months.  When I was diagnosed with Peyronies Disease, I went through all the stages of any loss: denial, anger, depression and resolution.  I learned all these in school but they meant little to me personally until I had to face them.  Any stage can pass quickly or last for months to years.  Be kind and patient with yourself.  I lost both of my parents withing a few months but that was "normal".  Losing the ability to have sex was a kick in the butt.  I don't know any formula for coping.  Formula is good for babies but we are adults.  Any two men with Peyronies Disease have totally different causations and motivations to get well.  I have spent the entire month of September on sabbatical from people in an attempt to re-evaluate myself and my relationships.  I have been angry at God, angry at myself and even those closest to me.  In reality, any search for God is a search for self.  In summary, I have decided that the only thing that keeps me sane is the fervent hope that somehow I will survive this trauma and come out swinging (no pun intended).  I just feel like I am waiting for the next shoe to drop and fear will kill you dead in your tracks.  I will keep on looking for treatments and doctors who might understand.  I do not understand their ignorance or their complacency.  What we need are more urologists with Peyronies Disease so they might get to work with research into cures.  When all is said and done, usually, more is said than done.  Think of me and I will think kindly of you and thank all who have been there for me so far.  I know it may sound trite but I have been taking it one day at a time.  My wife wishes me not "good morning" when she leaves for work but a "good penis day".  God, I love her. Keep hope alive until we overcome.  The singing of Kum Ba Ya might be appropriate here.

I wish I could offer a pearl of wisdom.  I can't.

I try to do what I can and try to be honest with myself.  I take my joys where I can and try not to focus on the negative.  I party hard and pray harder.  I laugh at everything including (especially) myself.

Bert reminded me of one thing when he mentioned stages.  Most do go through a series of stages even if they are not identical. And we do go THROUGH them meaning you naturally come out the other side.  As much as you may think otherwise, coping does get easier.  I think there will be almost unanimous agreement on that by anyone that has had this disease for a few years or more, especially if the Peyronies Disease is not progressive during this time. 

Old Man's advice about hope rings very true especially for the young men.  Tissue and organ regeneration is an entire area of research that is progressing and is very likely to net huge results in the next decade or so (in my humble opinion).  So you fight now with hope for improvement and with hope that help is on the way if you don't give up.

hmmm I see a lot of negative replies except for Liams.

I will just speak for myself here, the disease hasn't really changed much in my personality or in my perceptions of things. Hopefully when I get into a relationship a couple of years from now my perspective won't change and remains positive. for me as long as I can get an erection thats all that matters. if surgery is the only way out then I will not hesitate. but I guess I have a milder version of the disease so maybe I'm looking at it from a different ''angle''.

Thanks guys for your replies,

I appreciate your advice, all of them, and we sure do have different ways to cope as we're all different...
Hawk, I agree, when the you go through these stages (I've just got out from "Anger" (but inner anger, no outward expression (or little), and I want to skip "depression" so I'm getting a move on in order to avoid dark thougts cause I don't need them, I've know introspection for years now (probaby everyday since childhood, I've got it in my genes probably  :)), and I've got the feeling that Anger will come back again from time to time, like a fire that can't be completely stopped.

But for sure, when this curvature, ED Peyronies Disease get stable, we tend to get more positive than when the "sh..t is hitting the fan" as you say in English  :). I've got stable for about 1 year since that day I noticed the "big change". I hope it won't change again soon, since I'm trying to get in better shape. Anyway, if its gets worse, that's life.

As we say in French, "l'espoir fait vivre" (? "life is hope" ? approximate translation), so I'll keep my fingers crossed for new treatments to appear in the next years. Maybe it's naive, but anyway, I'll wait for this scientific progress.

Hitman, I wish I had your way of thinking, the "as long as it works" attitude. But I don't have it.
Liam, keep partying and laughing, that's the best mental therapy there is...
That's why I try to stay with the funny, cheerful people. Bertcobb, joy-stealers and nay-sayers are definitely to be avoided (I can't see the point in standing them, even more since I had this curvature worsening, since these people bring nothing positive).

Hawk, I must admit I'm curious about reading this poem... I'm rather open to these spirituals things, I can't really bear modern capitalistic life. Reading only the short version you wrote, it gave me a strange feeling in the chest... It's like listening to the dalaï Lama or stg, their words have more impact on my mind than quotations from people who lead a normal, non-spiritual life.

Bye, keep smiling,

Quote from: Hitman on September 19, 2007, 02:10:17 AM
hmmm I see a lot of negative replies except for Liams.

Perception is an amazing and an interesting thing.  How could you possibly see ANY of those replies as negative ???

I thought the other responses were positive, too.   :)

I see desperation in some of the replies. It seems we're shooting for the extremes here. I think the definition of ''treatment'' seems to differ from one person to the other.

Hitmman,

The bottom line is the condition will do what the condition will do.  The most important thing we have control of is our attitude.  If sometimes we set our goals too high or have a little false optimism, it won't change the course of the disease.   And, as long as the treatment isn't harmful, we might actually hit on something that works.
:)

Hitman,

I see desparation nowhere in a single sentence in any of the replies.  I am not sure what your sentence

Quotewe are shooting for extremes

means.

Quote from: Hitman on September 19, 2007, 10:07:18 PM
I think the definition of ''treatment'' seems to differ from one person to the other.

I don't even think "treatment" is the issue being discussed. What in any of the posts dealt with the "definition of treatment"?

My post dealt with a well developed sense of humor, feeling alive and loving life.  It dealt with having purpose in life that drives and motivates one to the fullest.  It dealt with having a healthy positive attitude.

Oldman talked about a sense of hope and persistence.

Liam spoke of focusing on joys as they come and not on the negative

BertCobb is in a place where he talks of holding on and fighting even when you are in a temporary slump.

J, Talks of a hope of a new breakthrough that is bound to come.  His hope is that it will be sooner rather than later.

Ninja, a fairly new patient, talks of fighting and focusing on projects and refusing to let the initial stage of depression get the best of him

I am sincerely curious as to what your idea of a more upbeat type response would consist of?  If you have something even more upbeat, we could all benefit from hearing it.  Please share.

I have a smile on my face each time I see Hawk and Liam agreeing on some point.
It's so rare, like a full solar eclipse...

...
...
;D ;D ;D

I don't see desperation either in the others' posts, maybe a little in mine problably, but I mean we're trying to keep this feeling under control with objectives, faith, treatment methods and so on...

BTW, I don't know your case (and not much of the other people on this forum, but I know some had tough version of the disease), but what would you think if you lost 30, 50% of your erection ability, or if your thing got turned so much (let's say at least 45°) that you feel pain during sex and you wake up each morning wondering if it's gonna get worst today to the point that your lil' buddy would go 70° (in any direction), start shrinking as well (to add some extra difficulty).

Just a question, because you say you may have a mild version of the disease, and I wonder how you would react if you started even losing this strong belief that "as long as I can have an erection". Some erections could scare you sometimes...

But again, I know it's not the topic of conversation, but I'm wondering what you would think in those situations, and if you would not consider starting treatments as well... of if you would still say "never mind".

If you say answer 2, I think you're a zen master  ;)

I have almost nill erections and my penis is shrunk and thats not surprising considering the condition I'm in. my curvature is around 20-30 degrees at the moment.

I don't see a reason to be scared from having erections nor do I see a reason why my belief should shatter or become weaker all of a sudden.

As for pain, thats understandable, well all go through times of pain and we all try to fight the devil in our minds. But I probably will never understand what it means to have a 45 or 70 degree bend, because I've never experienced one.Yet there are always options, and through these options- some people might not be comfortable with them others may not- and other future options there is hope. We create hope.

If it wasn't for my belief in a better quality of life I wouldn't be here. I lost both of my parents a long time ago. I cried, felt sad, felt sorry. But how long am I going to do that for?? How long am I going to feel emotions of sadness and sorrow for something that was not in my hands and that I couldn't stop?? Life doesn't work that way.

Sadness and depression. neither of these two add any benefit to our condition or any condition for that matter. The power of placebo makes quite a positive impact.

MY progress has started with me improving my digestive health, which after years of suffering has finally seen a significant improvement .

regards to all

Hi Hitman,

Thanks for this reply, and you definitely have a nice way to cope, not letting this thing shatter your self-esteem. I wish I could do that. As much as I dislike having a good self-esteem, this problem make me feel a little insecure sometimes, especially since it can f..k up a love relationship easily (but that depends on many factors of course, direct and indirect, and on the person you share your life with).

Digestive pb suck, they're hard to take, the pain is a visceral one, and it can go tough sometimes. I wish I could improve my condition on this point too, cause I think it's linked to my weight loss and big physical/mental fatigue. Hopefully we'll recover, just like with our penis problems. We got to keep faith in tomorrow.

"After the rain comes the sunshine" (not sure of my translation).

i think that being honest is the best thing to do. honesty is the best policy and you'll be surprised how far that can go. I can understand how you might feel a sense of security and this is why its important to have someone who can just be part of those feelings.

yeah those digestive pbs are really annoying esp if you get gas trapped inside the intestines. man that hurts big time. I did notice a couple of things I was doing wrong. Also I did a 30-day flush and together with some probiotics things are going very well so far.

I understand honesty with the partner, and usually she notices it (about curvature especially) anyway so there's no need to hide it. But I'm probably not with the proper person to talk about this, she usually gets angry when we have "real" conversations (not smalltalk), and not only about this stuff, but about almost every topic of conversation.
So I keep it to myself 99% of the time, and maybe that's better than whining all the time about such or such problem ???. If I were with a more open-minded partner, maybe I would feel weak talking about my problems...but I've got a strange way of thinking I guess.
And in the end I don't know if people really care anyway (partners, family...). I really don't know. I guess that depends on the quality of the "ties" we have with the other person. And that's hard to evaluate.

Concerning belly problems, mine are located in the stomach (stomach pain is nice too  ;)), and no appetite whatsoever for the past 2 years. Like the expression "I'm hungry" has no meaning anymore. Fatigue and sore muscles have a meaning on the other end  ;). Pain was the main pb in the start (sometimes you think you have a chainsaw going on inside, feels gooood), but now it has vanished almost completely, leaving this no appetite, fatigue and nausea kind of symptoms. And no treatment advised by my doc'  :-\

Take care!

so what are you planning to do about the no appetite. Cardio is a very good option.

about the curvature, yes when you don't have an understanding partner it becomes even a greater burden. I think that some people do care. the quality of those ties would be pretty obvious and you can easily tell.

anyhow good luck with the treatment you consider for your curvature. I'm 24 and single so who knows maybe in those coming 6 years of my life something new arises.

Recent discussions of appetite have been moved to "General Health and Fitness not directly related to Peyronies Disease".

Thanks,  :)

Liam

Dear best friends I have never met,
     I have learned when attacked with any problem to dig for answers.  Faith is what we come to when the answers are not attainable or knowable.  My wife noticed that my penis was "different" than before but did not want to hurt my feelings by mentioning it.  How many others have had the same experience?  Now for a little sexual information that might help.  MOST female orgasms arise in the clitoris and NOT the vagina.  A woman can orgasm without a penis inserted.  SO, I became a better lover by studying and learning how to generate her orgasms EVEN if I lose my penis entirely.  Inserting a penis is for MY benefit, not hers.  Most of the sensation inside the vagina is in the first 1.5 inches.  Hand and finger pressure can generate the same feelings for her as a penis.  Women who worship a penis that is large are not what I need or want.  There are intelligent women out there who want a man who wants them and cares enough to give them sexual orgasms.  Look for them.  The top of the vagina lacks nerves so punching that area only stimulates the head of the penis.  Talking about sex when not engaged in sex is less threatening to either partner.  Sex occurs mainly in the largest sexual organ THE BRAIN.  A large penis has little value outside the locker room.  WHATEVER it takes to achieve sexual gratification that is consented by both partners in the privacy of the bedroom is OKAY and not "dirty".  I am a man with or without a penis or testicles.  I am undergoing all this expensive and arduous therapy FOR ME, not my wife.  She is satisfied with what I have.  I am loved with or without a penis.  We do not know that unless we discuss it.  Sometimes you have to hear it almost daily to get it into your mind and believe it.  Peyronies Disease has actually generated ample opportunity for honest discussions about the present and the future.  I am most fortunate and I KNOW IT.  I wish the same for each of you.  I do not have the answer for you.  You have to seek it for yourself.  I am my most ardent critic.  I wonder when I will get up and go through my day without thinking about the state of my penis.  Then, I will know I have "healed" whether my penis is straight or not.  Getting discouraged is EASY.  Staying in the game and striving for health takes work.  If one thing is not working, try something new.  Variety is the spice of life.

In your last post under another topic, you said

Quote from: ninjagaiden on November 13, 2007, 06:39:47 PM
I've lost some of my illusions of a bright love life with my girlfriend. I may have many partners because of this problem, and I sure don't like that, cause I'm a romantic guy, but... I'll take the blows if they come.

I hope that is not like it sounds.  If there has been a decline in the relationship, you have to determine if it is the 1. Peyronies Disease, 2. something totally unrelated, or 3. your reaction to the Peyronies Disease.  If it 2 or 3, you have a large amount of control over those.  If it is 1., then some other crisis in life would have likely jeapordized the harmony down the road anyway.

Good luck my friend.

This disease is disrupting my life and I feel at a mental low. My bend is about 70 degrees. I've lost length and girth and can only have rear entry intercourse. Has anyone had recovery from such a steep bend? My urologist says surgery(nesbitt tuck) is the only way to straighten it.

Hi Grant,

Some of us have had dramtatic bends that got better with the treatments we have used. Kimo had a "donut-like" bend and got better with Verapamil. I had a 30 degree bend that is now about 15-20 degrees, using the VED. Old Man had a larger bend and a dent (I think) that got better with the VED.

Many of us have ongoing problems that have not gotten better too. Despite the improvement in my angle, I continue to develop new small dents which continues to upset me. Getting to a "low" is par for the course here. The NEsbit may be the only surgical correction one can do currently, but trying alternatives first makes sense.

Tim

Quote from: BertCobb on September 25, 2007, 12:24:51 PMI am a man with or without a penis or testicles.

Just a little snippet from one of the best posts on this thread in recent history.  It takes a real man to understand little details like this one.  I really do suspect that many Peyronies sufferers experience problems in their love life more as a result of their own dissatisfaction and sagging self image than as a result of the reaction from the spouse or partner.  A man without hope is a man without hope whether he has Peyronies or not.  And a man with hope is a man with hope in spite of the fact that he might have a Peyronies issue.  When a man can see beyond the limitations of his penis and his testicles, life just gets so much better, and even the "disability" itself fades in terms of its impact.  It is just so sad and so evil that our society tends to project sex as the only worthwhile aspect of life and also tends to do it in a way that distorts our expectations so much.  Its as if anyone who is not a porn star just doesn't have a life.  This is a huge lie and perversion and those who can recognize that fact will spare themselves a lot of pain.  There is just so much to enjoy in life and its a huge waste to miss out on that by fixating oneself on his (or her) sex organs and sexual function.

George, Bert, Hawk and others with Peyronies Disease
I count myself among the lucky men with Peyronies Disease that has developed to 99% ED.
Why am I lucky? My wife of 39 years said to me "Jack, I did not marry you for your penis". She knows my size has shrunk both in length and girth, she knows that it affects me emotionally. She never complains and every time we make love, even without penetration, she makes sure I'm satisfied. Different things at different times. It is something all couples have to work out between them selves because no 2 are the same.
This is a great forum. I am glad to have found it. Keep up the  good work we guys need it.
Thanks
Jackp

Grant,

Hang in there, who knows what may be on the horizon. This new Xiaflex from Auxilium may be of help to some of us. It has shown some good results in reducing the angle after a series of injection. There is some good info on their web-site. You can google them. I dont know if I can post the link here.

Meanwhile, you could try some of the other treatments that some of us are on (VED, PAV, etc...)

Good luck and keep the hope
Pal

I'm a newly diagnosed Peyronie's sufferer, and this is my first posting to the forum.  I am lucky in a way in that, although I am 50 now (51 later this month) I began the process of recovery from alcoholism in 1981, a little over 26 years ago.  I haven't had a drink since then, and some of the thought processes I learned to use in that endeavour are useful in handling the psychological effect of Peyronie's now.

Primarily - if I can't directly affect or change something, there isn't a great deal of profit or benefit in worrying about it.

Some recovering alcoholics use this little prayer:

God grant me the serenity to accept the things I cannot change
The courage to change the things I can
And the wisdom to know the difference

If that sounds a little trite, it probably is - but it is effective.  I can't change Peyronie's, and nor can anyone else cure, change or even understand it fully it seems at present.

I am also fortunate I think in having contracted the disease relatively late in life, and having had a wide and varied sex life as a younger man.  I also have no partner now, and haven't dated in quite a while.

When first diagnosed, I took three weeks off work, and slept, worried and felt sorry for myself for most of that time.  I don't want to live like that though, and am not going to.  There is a great deal more that life has to offer.

Welcome to the forum Bulfrog and thanks for contributing.  Your entire post was dead on but I was particularly struck by this sentence:

Quote from: Bullfrog on December 02, 2007, 02:38:17 PM
When first diagnosed, I took three weeks off work, and slept, worried and felt sorry for myself for most of that time.  I don't want to live like that though, and am not going to.  There is a great deal more that life has to offer.

We have infinitely greater choice in our attitude then we often like to take responsibility for.  The same message was communicated in part of George's post.

Again, welcome aboard.  Hopefully you will continue to gain and to give support in this battle.

Welcome Bullfrog and I'm glad you posted. There is a lot of support to be had here; it's a good place... and I'm looking forward to your comments and thoughts.

Hello everybody,
First of all, I wanted to say this group is a very good one.it's helpful and supportive ,though I have been lately just "lurking"...

I haven't posted here for quite a long time and to be honest, the last two years this disease really shattered me in any aspect. I reached the same points Antony reached, and our stories are almost identical, apart from one thing – my fibrosis condition is probably the worst case you ever had on the board.

My fibrosis is so bad that even with any pills like Cialis or so ,my organ falls down very quickly .I lost significant size during those years (about 4.5-5 cm less, and lost girth as well). In the flaccid state it almost looks like the organ of a child now. That's even worse than the impotence itself.I do not imagine there is even one member on this board who ever had it so bad and in my young age (33).

It had the same catastrophic effect on my life as in the story of Antony (left my job ,lost my friends,lost my will and ambition to do anything, and so on).we (antony and myself) were the same types of people before the onset of this disease (I had many girlfriends ,I used to be kind of a "party boy", had many friends,earned my money and so on).

I have to admit I felt suicidal for sometime, but as I am scared of it I gave this option up.

I'm at this point now that I need the group's help in trying to see if I can ever cope with it. I'm taking into account today that if I have any chance in life to sexually function, it would be the VED (in case that it would work for me and won't be painful). The implant, even if I considered this option,it looks problematic to me ,since I am very calcified there and I am not sure if this is possible at all ,let alone what I heard about those surgeries and how people are left short of 1-2 inches on top of what they lost by having Peyronies Disease.

Before this disease, I always had no problem to court and date any girl I wanted, but now, even if I want to date a girl, I don't know even technically how to do it in my condition.

What would I tell her? Some people told me that you first better start dating and just tell her later, which I think may look like a con. Some told me I should tell about my condition from the beginning. I'm so trapped .for example, a woman started talking with me in a bar, yesterday. She was very pretty and so and I know her friend as well (and usually at this point I would ask her out but this condition of mine holds me back. from the outside she sees a very warm and a person who shows affection ,since I am like that.and then I can't do anything). then I told myself – women talk about things like those. If I asked her out and told her in some point that I can do nothing really, I am so scared of having her response ,and I am scared of having my name in her friends conversation (in my town). I just don't know how to start things like that.how to overcome all those traps.

I would appreciate if anyone young like my age (33), who has became totally impotent at this age, and how did you cope.what has he done at this low point ? it's not that I underestimate people who need to cope with it when they are 55-60 and married ,but I can promise you it's not the same situation. if I had today an understanding wife of 30 years it would be a totally different struggle than being so and single at the age of 33 .

Another thing is how do you cope when in this age your penis in the flaccid state shrunk so much that it looks like very small ? I am serious, how do you cope with this sight and the low self esteem it drags?
Some days ,even looking down at my groin makes me feel so down about it.I know that I can't change it and the attitude should be : "try not to moan about things you can't anyhow change" ,but yet ,it is hard to see it.

Thank you for your answers and help.

Ron

hello ,

I agree with youngPD -Ron, we can feel what we live coz aparently we have exactly the same and rare very serious case, to the same extent, appeared in the same conditions, and we had the same type of life.
I just think it's not possible to live in that condition, especially at 26 or 30 , when life is not built yet.
I agree we must do everything to fight IF there are 'real' solutions to try (VED is maybe one). Pentox and vit E seem not to work.
A proverb says 'hope makes you alive' (i don't know exactly to translate it in english), so , at the contrary,when there is no more hope, there is no more life.

Ron, i would just add that your fibrosis case is similar, not worse (just you have it for longer), coz , as for me , with cialis it works less and less (if it continues like that, it will not be maintained more than some seconds) and my size decreased a lot too. because i continue to try intercourses with my gf, i don't know if i damage the tissues more or if it helps ? One doctor told me having intercourse would help to 'stimulate', another one told me it would damage the tissues more and more. A doctor told me VED could help, another told me it will damage more... What i know is at flaccid, it is more and more diformity penis, and in erect... no, in fact there is no more erection.

We have an horrible thing, that make us disabled physically, that is not visible outside, (so not understandable) that is very delicate and hard to speak about, that prevents us from enjoying present, and planning future, and changes the persons we are, both fisically and mentally.

Good luck, coz if we heal from that, we are 'warriors', but if not, in my mind, it's understandable to have dark ideas, coz it's no use to be here to live like that. (i precise that i am totally against suicide and before that i was not weak at all, very strong mentally, but when something touches you so deeply in your identity and you don't recognize yourself, it's just not livable).

Anthony and YoungPD,


I have no desire to debate whether you are beyond hope.  If you are convinced you are, then you win the debate.  No one can ever convince you otherwise.  I do share my perspective however.

I want to start by saying that I have never heard anyone even suggest they had the sexual staying power I had prior to prostate cancer.  My wife wrongly assured me,"if any man ever came back from prostate surgery, it will be you.  Don't worry!"  I went from legendary staying power to TOTAL, 100% ED in four hours of surgery.  After many months, just as it looked like my erections had some small chance of returning I then developed Peyronies Disease and lost 2nches along with loss of girth.   I know something about trying to get your mind around sudden incomprehensible loss of sexual ability.  Granted, I was 51 and I was married, but to suggest that this diminishes the impact on your sexual identity is just plain wrong.  I have been your age.  You have yet to be my age.  It is true that you have life styles of dating to worry about that I don't currently have.  I did however have an added pressure you cannot relate to.  I had the pressure of seeing the impact my loss was having on someone I love with all my heart.  I had the added sense that my inability was causing challenges to someone I care about even more than I care about myself.  I had the strain of dealing with the stress that my attitude was having on the most important relationship of my life.  It is one thing to feel loss of sexual identity and loss of manhood in perusing sex.  It is another to feel that and then be in a bed night after night with someone whose very presence constantly reminds you of what you can't do.  There is no escape, no retreat to a loner type life style to give yourself time to sort it all out in your head.

I share this because as M. Scott Peck teaches on the very first page of his book "The Road Less Traveled", it is the very nature of humans to look at life's difficulties as though we somehow have it far worse than others.  It is always somehow worse for our group, our race, family, our tribe, or our gender.  As humans, our lot is not identical, but mankind has struggled with the same issues since the beginning of time.  The loss we feel and the process of victory over that loss is the same process that a 20 year old soldier feels when he is sent home with no legs.  He may argue he has it worse, we may argue we have it worse, but in any case, the process of victory over the loss is the same.  Many millions have have fought that same fight and won.

To YoungPD - I hope other posts address some of your important questions but I will say that there is no right answer.  People are individuals.  The approach that serves you best with one woman may be the wrong approach with another.  You are bound to fail in your approach at times.  That is life.  You will however learn to offer that which women find irresistible if you try.  Mentally I have largely recovered.  I am convinced that I could cut my penis off and I could still attract and charm many women.  Out of those, there would be many that when they came to know the total package, they would be very satisfied with what I had to offer.  It is true that some would not be satisfied when the got to know the total package, but that was the case with all of us even when we had a perfect penis.  One approach did not work then and it will not always work now.

Trust me, things will get better.  There is life and there is hope.

Hawk, I could not have said it better myself.

I appreciate that YoungPD says that he is not discounting the pain of those who are older. And who knows -  he may be "right"; this pain we have all gone through is worse if your disease is sudden, rapidly progressive and occurs while you are young. But the fact is, we all suffer, and some of us older men give up and wallow in self pity and some of us younger men do not. Though I am no longer young, my disease came on while I was young and I felt cheated and all the other things described here by these guys.

But the fact is inescapable - we are NOT defined by our penis alone.

Perhaps if their disease is so terrible that it cannot be fixed easily, they are candidates for the radical dissection and reconstruction of the densely fibrotic penis with implant placement. I have posted before about that option - it is there as a safety net to assure them the option of having penetrative sex in the future. But I have also heard (perhaps not from them - I forget) that "I will never do that!"

Well, the facts are this - there are options, like it or not. My partner assures me that if I decided to go that route some day she would support me, and if I never was able to have intercourse the way we like again, she would love me nevertheless. I would be doing it for me. And we got involved and made love for the first time with me already having Peyronie's Disease. If a young man thinks it is hard to imagine dating and stripping for the first time with this disease, he ought to imagine trying it for the first time with a bigger stomach than I like, small varicose veins in my legs, grey hair, and flabbier muscles than I had at 25!!

I could make an argument that *I* have it worse!

But I will not do that. We all have our own paths to take here and all have to grieve the loss of what was, and find a new way to what we can be. And if an implant and reconstruction seems impossible, try reconsideration after 5 years without sex. Maybe it won't seem that bad by then.

Tim

To Hawk:

you say you were under pressure, coz it was hard to make live this crap to your wife you love and who loves you, and who is the most important relation ship of your life. I understand. But i would add , so you have the luck to have lived such a love relation. Because as for us, we will not discover it. Of course, i have had lots of girlfriends, YoungPD too. But a wife, who loves you, suport you, coz you have been maried for years, and you live the one for the other, we will never discover. Moreover, life is diferent now. I see my father when he was young, and being young now are totally diferent things and worlds. Now it does not exist girls of 20 or 25 who nicely think 'its not so important if he has no penis, because i love him for what he is'. No, women are liberate -at least where i live- , love sex too, say 'we have the time to be married later, we have to 'have fun' now. No girl will make her life with a sexual disabled.
Maybe the suffering is the same at every age, it's universal. But the difference is the situation, they are not the same when something hapens at 20 or 60.

Tim:

We are not define by penis alone, but its a part of us. I would add that its with that you give life. If you were 25, with no fix girlfriend, would you date a girl with no sex, who won't be able to have any sex relation with you? With who  you could not share intimate moments, and you would have no chance to have a future, kids and family with her? I don't think so.


Concerning implant, and YoungPD knows the same, if you are well informed you know it's not a solution. Of course psychological part (never have a natural sex again) is important, but there is mainly the physical part: it shrinks penis a lot (which is already really shrinked), it makes lose sensations more, it's totaly mechanical, and you have to change it after some years. Worse, there can be errors of surgery, infections, etc. Moreover, you can't practice sport anymore, with a part of prostesis in belly, another in penis and another in testicles. It's not a solution.  And a proof of it: doctors DONT ACCEPT (at least here) to put it at a person under 30-35. And don't want to take these responsabilities.


Anyway i was just as for me answering and confirming what YoungPD said, i know that morally nobody can help , if nobody can heal us. Its easy for somebody to say 'accept this'... Accept one? To have had an accident -very rare one- and lost what you were from the day to the other? Like a sudden death being alive?

Anyway, good luck to evryone here. 

Anthony,

You said

QuoteI understand. But

You manage to always come up with that "but"

You say it is easy to just say accept this.  You are absolutely right.  Talk is very easy.  The hard part is doing the work.  Thats your part of the job.  No one can do it or you.  The alternative is for you to win the argument and convince yourself that your life is so much worse than others, that it is just too difficult.  The thing that I love about life is that we get to choose our attitude about every difficulty we encounter and nothing could be more fair than that.

Choose wisely!   

Hawk
I do not know what to say to these young men. I know when I was there age, Young, Dumb and (well you know),  probally would have have most likely felt the same. The one thing I have learned is that a Penis does not define you as a man.
I'm 100% impotent, the pills, shots or nothing else helps. Have I given up? NO! Failed attempt at an implant, have I given up? NO. Am I married with a caring wife? YES!!! Are there other women out there that will care for these young men? Yes!!! Part of there problem is they are looking in all the wrong places, SEX IS NOT LOVE and LOVE IS NOT SEX.
When they let go of there problem and find true love the sex will come. It may not be penetrative sex but then maybe they will start to fight to find a way to fix it.
Do not get obsessed with fixing it but do not stop looking either.
I have an appointment with another implant surgeon Thursday. Will he solve my problem? I hope and pray so. If not will keep looking and never ever give up.
I am not good at putting my thoughts down. I wish these Young men well, and Gods Speed.
My$.02
Jackp

Jack,

I would call that one of the best posts I have ever read!

Good luck my friend

Hawk,

I know no one can do it for me, or for us. i don't ask it. The only thing i want you to understand (i speak as for me), is i'm not weak or whatever, it's even the contraty. But this thing touches too deeply. You know about the subject. So just tranpose it in your yougness, and moreover nowadays (and maybe yes in the wrong places, but we don't always chose where we live). But that's not the matter. If there would be hope, i / we would fight hard to recover. But here is not like somebody injured who have to do lots of hard exercice to recover. There is no way to recover here. An example: take 2 football players : one will have a serious injury, the other will have the 2 legs paralysed. The 1st one will be depressed, but will fight and work hard to recover. The second has NO HOPE to recover, he will not re walk again. The 1st one you can say 'be strong, don't complain, and fight'. The 2nd one you will say 'its life, you have been f*** man...' I can make the comparison go further: (it's for comparating with ages and situations): if the football player who is paralysed, is at 35 at the end of his carreer, he has already lived his dream, done the majority of his carreer, have lots of fans and saved lots of money.Its horrible, but more acceptable. If he is paralysed at 20, at the begining, 1st he has to fight with this crap, but the worst : he will always think 'i could have done a wonderful carreer, i could have taken pleasure, have money, have fans, do my dream but.... i won't. It was for me, but accident forbids me.' so he has no more life, but worse , he knows what life he SHOULD have had. Don't know if you see what i mean. Anyway i don't complain i don't mind in fact, if 'its life'; so it's life. Life has just not respected us.

Jackp: you confirm what we said: maybe you have had same problem, it's hard to live, etc, but you tell it yourself: 'am i married with a caring wife? yes!!!'. I supose you met your wife before being 100% impotent. So you have shared good moments with her. So now you are 100% impotent she supports you. I suppose you would have not had this lovely wife if you had been 100% impotent when you met her. Would you tell me the contrary? If i was 60 and married since 30 with a wife i have shared so good moments and who suports me, i would accept more (even if i see my father ie, is still atracted a lot in sex at 60, so...). But that's not the case.
'sex is not love, and love is not sex', maybe not, but it's a big part of it. Tell that to all the guys -and girls- of 25 you will see their answers. I dont agree when you say 'when they let go of the problem and find true love sex will come'. That's wrong. Sex won't come , even with true love as you call it, coz penis is broken and calcified, libido with it. That's a fact. And for 'non penetrative sex', i don't know lots of people who like it. I still have a girlfriend, coz she knew me before that problem. She loves me yes. But that's a fact that it has destroyed so many things, coz if sex is not THE thing, it's the half of it. Half sex, half mentality. Moreover, to see your guy from so strong to so weak is a mess too. So, more than the sexual issue, its the whole person she knew who is destroyed.
Anyway i wish you good luck for surgery and hope it will be fine for you.

As for me i don't try to say we are alone to have a serious problem, and we are the only on earth to suffer, and the others have nothing, etc. It's not what i say. But i say, nobody can say to us, in our conditions 'its ok man, there is not only sex in life', or 'its not so serious, look some people have cancer'. The finality could be as serious as a cancer, some guys suicided for less than that.

Hello again ,
I wanted to add some points to the words said by Antony. if I read his post I can almost swear it could easily be my post as well.

Not in vain it has been said before that you can not judge anyone until you had a chance to go in his shoes. well ,I am not trying even for a moment to somehow underestimate or belittle he pain and agony of anyone who is inflicted by this condition in any age however I need to say this again people ,you can't even imagine how it is when you get it so sever and so intense when you're so young and single. you have no clue what it's like to feel that your life is up before it even started.

When you have been with a loving caring wife for about 10-20 years or so ,had kids with her and built up a future together ,so even when you get it ,if you've been loyal and by her side when she needed you so she would probably be there for you in those unbearable moment. this is the significance of partnership and a real friendship between a man and a woman. but that exactly what makes you struggle an applicable one though I admit it's not an easy one either or. but with all due respect it's not the same.
The actual existence of your kids around you is indeed an emotional support, regardless of the fact whether they know about your issue or not. the fact that you've already built something and your previous infrastructure is standing there for you. same as with your wife ,when you deal with it as "a couple's issue" rather than a single lonely impotent man's problem.

Ad there is of course the outlook of your past present and future life. again ,with all due respect ,when you get it at 50-60 years old so at least you had a reasonable chance of having some wonderful sexual experiences for more than 20 years ! we won't have it. and although Antony and myself were with many girls as we were kind of "party boys" ,yet it is imperceptible to come to terms with the fact that from now on your sex life is kind of up.

If I speak for myself ,and I guess I can speak for Antony as well about it ,this injury and the consequent impotence and fibrosis ,brought about a kind of feeling that you would not be able to fully comprehend hadn't you had our type of personality.
Having this condition made me understand for the first time of my life (and I'm sorry for this comparison ,but it's the only one which illustrates it well) what is the feeling of those weird people who say that they are locked in a body which does not align with their soul.it is an awful comparison ,but it describes well how I and I think Antony too feel that whereas our personality is still the same as we were , I mean like very sexual and self confident with women and similar to being a Don Juan ,but our disability imprisons us and force us to suppress our own self being and personality to the level that we lost our right to be truthful outside and to present our real personality.

Going to bed with a girl when we are sexually disabled ,let alone in my case where my flaccid state looks shrunk as if I was 10 years old ,is unbearable.


I know all the shrewd and wise sentences I need to adapt in those days like : the serenity words of the alcoholists. like all those pep talk saying that it's worthless to worry about things you can't change etc. however,the point is ,for a person who's built the way my personality is built ,those words of accepting the circumstances ,are just not good enough.

And I am really a very strong person by nature and never gave up in many occurrences in my life. I never had an easy life but I always fought hard. but as Antony said before ,you can fight when you have a real hope. if there was even one doctor in this entire globe that would tell me that I needed to go through hellish 2 years ,including some very complicated medical procedures but later ,after this price I need to pay ,I would have anything close to a normal manhood of a 30 years old man ,I would honestly go for it with all my heart and power. if there was any doctor or experts to tell me that in this right moment ,there are some serious groups of scientist who would probably find a genetic solution o grow a new tunica in the labs next year ,with very good chances to succeed due to big funds donated there ,I would honestly make my best to fight back and even to donate my time and money for it.

Even if someone tole me that my penis tomorrow morning wont look like a little child's organ, that could be a good start.

But hey guys ,you know what's the real problem ? no one really gives a damn. doctors are with vitamin E and such for 400 years. there is no much of progress in damn 400 years. what the hell makes anyone think that something is going to ever change ? why ?

I can sure tell you why NOT. since they just do not care. why don't they ? since it is one of 6000 other "orphan" medical conditions. those are orphan usually for the small percentage in the population having it. they are orphan sometimes for not being defined as "life threatening". but guess what - fibrotic penis and impotence is INDEED life threatening. I would bet my life that many people without leaving a not ,just ended their lives when they got it in young age. but then again ,men tend to hide this problem ,so it keeps being "in the closet". no one really take this organic impotence out of the closet. not even one serious genetic work is being seriously applied nowadays. it's just not "photogenetic" enough.it has no Lobby. so we can keep talking and talking and debating an giving pep talks. I guess in 100 years the available options for cure will be the same.

And please do not delude yourself my friends. if the genetic engineers have already come up with a brand new bladder being grown up in  lab and transplanted in a cancer patient ,so with some funds ,they could have the same biological laboratories for growing new tunica. the splits of the cells is not so difficult to decipher by the current means.
It's just that no one gives a damn.so that's why there is no real hope, and with all due respect ,having this condition as an acceptable fact in my age and marital condition is just too hard to accept.

But I really appreciate the genuine effort of the people here to provide an emotional support. I can't ever discharge or belittle this as a valuable means to cope.

May you all be blessed,
Ron

The worst case of any disease is always your own ;) .  Comparing your situation with someone elses is counterproductive.  So what if you have it worse or not as bad as someone else.  It changes nothing.  My heart goes out to all the young and older with Peyronies Disease.  Now that we have that out of the way, we all have to cope. 

To Antony and YoungPD:

Antony said:

"But this thing touches too deeply."

The point that many of us are trying to get you to see is that you have a choice about how you react or feel. I have said it enough. I have immense compassion for you and sorrow for your pain. Now you have to do something.

Recovery from an illness does not mean (neccessarily) that it goes away. Recovery means that you get back that which you have lost that you can get back.

Sometimes you cannot get back all that you have lost. An amputee from Iraq may not ever get back his leg, but he can get back his health, happiness and the ability to walk. So if you continue to define recovery as "I want it to be the way it was", you will continue to fail.

It is clear to me that you have not understood what I am saying at all - in the sense of showing a willingness to stop wallowing in misery and try to move towards wholeness. That is where you are right now - sad for what you are not, instead of thinking about what you can be. All the words in the world will not penetrate that sadness until you decide to take action yourself.

I know that both of you have taken action - gone to doctors, seen therapists, tried medicines, searched online. I am not saying that you are not trying to get better. I am saying that what I see here is an unwillingness to change how you think about yourselves.

Does it touch too deeply? NOTHING touches too deeply, ever. We are always capable of feeling better about ourselves. I see now that simply telling you this will not allow you to see it, so I am going to stop making this point. If you wait long enough you will learn it anyway.

Tim

I have never in my life seen individuals so committed at seeing the bad and convincing themselves there is no joy left.  That is a disease far worse than Peyronies Disease and that disease does respond to treatment if you are willing to fight.  That is the disease that robs your joy much more than Peyronies Disease ever could.  People with SEVERE Peyronies Disease and ED find joy.  People with negative attitudes do not, unless they cure the attitude.

First I was told by Anthony that I could not understand and that my situation was not as bad because I had a loving partner.  Then he says:

I still have a girlfriend, coz she knew me before that problem. She loves me yes. But that's a fact that it has destroyed so many things, coz if sex is not THE thing, it's the half of it. Half sex, half mentality. Moreover, to see your guy from so strong to so weak is a mess too. So, more than the sexual issue, its the whole person she knew who is destroyed.


How is that different than a wife seeing her guy "destroyed" which was my very point that you now make about your loving accepting partner?

Antony, You also say "But i say, nobody can say to us, in our conditions 'its ok man, there is not only sex in life', or 'its not so serious, look some people have cancer'. The finality could be as serious as a cancer, some guys suicided for less than that."


You miss the point.  Some people commit suicide because a girlfriend leaves or they have acne.  Suicide is not a measure of how bad acne, or Peyronies Disease, or loss of legs is.  It is a measure of how bad the mental state is.  You illustrate the very point that you refuse to understand.  Whether a person commits suicide is within their full control.  It is NOT a product of the disease or situation.  It is the result of their attitude.  Mankind has the full power to fight and totally change attitude.  There are programs to help.  If you cannot change your penis, change your attitude.

It has also been said by both of you that "you can't even imagine how it is when you get it so sever and so intense when you're so young and single. you have no clue what it's like to feel that your life is up before it even started."  My father was paralyzed at a very young fully healthy age.  He was an intense, active, physical man when this happened.  He was dependent on disability checks for an income and laid in bed most of his remaining 25 years.  He never expressed anger at the drunk that ran over him or how he was cheated.  His secret was to focus on what he could improve.  He became the best read man I ever knew and h was a joy to talk to.  My cousin became a quadriplegic when he was 15 yrs old.  He has only very limited use of his arms and is strapped in a wheelchair.  He just passed the bar exam at 31 yrs old.  He has little hope of ever having a "normal life" but he found things he could do and dwells on those things.  He has has a swimming pool he could drive his wheelchair into any time he wants but but instead of causing suicide, his problem made him an attorney.

YoungPD said "when you get it at 50-60 years old so at least you had a reasonable chance of having some wonderful sexual experiences for more than 20 years ! we won't have it. and although Antony and myself were with many girls as we were kind of "party boys"  Then you had more sexual experiences than many (including my cousin), probably more than I did, so now, remember those, if they are important to you and move on to new meaningful relationships, occupations, and hobbies.  Add new meaningful intimate experiences to the party experiences you have had.

YoungPD said Going to bed with a girl when we are sexually disabled ,let alone in my case where my flaccid state looks shrunk as if I was 10 years old ,is unbearable. That my friend is what you can change.  I have laid in the dark with tears running down my cheeks without my wife knowing during sex acts because it only reminded me of my loss.  I am over that and you can get over it too.  Peyronies Disease twists the brain more than it does the penis and you are dwelling only on the organ you do not have total control over. I guess that relieves you from the responsibility of changing what you can.

YoungPD, you say "however,the point is ,for a person who's built the way my personality is built ,those words of accepting the circumstances ,are just not good enough".  Are you still unaware that you build the type of personality you want.  It is not like your height.  You can change your attitude and many aspects of your personality with work.

fibrotic penis and impotence is INDEED life threatening. I would bet my life that many people without leaving a not ,just ended their lives when they got it in young age.  Acne can be lief threatening if we choose death over fixing our minds.

I guess in 100 years the treatment will be the same.  More dwelling on the negative.  Why not acknowledge that in  just the last couple decades surgery has gotten much better, implants now exist and have even improved, VEDs and traction is showing some success.  ED drugs have hit the market and new gene therapies along with other treatments are on the verge of exploding.

If none of this changes your mind maybe it will help those that can understand.  For those that cannot understand I will start your next post for you

Hawk, we understand everything you say BUT.....

To all:

Just to conclude about that (coz it was not my goal to post about 'psychological component', i just reacted to what young Peyronies Disease said, because i feel exactly the same, about word for word), and to TIM: i know you have compassion , we don't try to accablate everybody, i am proud in my life, and my goal is not that everybody comes around me and say 'oohh my poor boy, i'm so sorry for you'. Both on a forum or in real life, i hate this, and since the beggining of this crap problem, i have NEVER 'taken advantage' of it (i mean i have never asked money to family, asked for people 'to be nice' because i was in crap, no, no : i have just consulted -non competent-doctors, tried parallel medicines, passed a lot of exams -not very pleasant-, looked on the net, spoke to other people, continued to try to go out, continued to see my gf, even continued to try sex -one again with the feeling of having damaged more the tissues-, etc, etc, and finally after all this fails, i'm just telling myself: ok if there is NOTHING to do -appart from accept-; if i have no choice than admitting life was stronger than me, i accept to die -so i agree with young Peyronies Disease when he says in fact it's life threatening problem-, and i will not ask anybody to cry or to be in sadness for that, i just 'leave hell'. Anyway, if hell is on earth, we can only go to paradise.)

Knowing that, i agree with you Tim, that every word will not change the condition in fact. Even the psychologist was so disapointed, and it's his job... After, we can agree with your words, and not be able to apply them, myself in my life i have often 'helped' other people in their problems , by speaking to them -even sincerly- and showing them that we can always manage to go out from a bad condition, that life is never finished, that we have to fight, etc, etc, etc. I was really thinking it, but... it was probably because i was not touched myself directly. Now i understand, when you live the thing, and when you don't live the thing, there is a world between the 2 situations.... And the person who doesn't live the thing will never totally understand what the other one feels.

So, thanks for suport, coz you have your own problems, and you're not obliged to help f**** so unlucky destroyed guys you don't know somewhere in other part of planet, but definitely ,in this precise case, we won't agree that 'we have to accept, be strong , and life will be nice again', coz that's not the truth.

you're right too by saying that sometimes we cannot get back all what we have lost. Even if we were in very sexual good form before that problem, and that is a big trauma, i would accept to recover like 80% (what is a consession) and i think youngPD too. I know i will NEVER be the boy, very self confident, alive and full of projects , ideas, and gf i was. But at least, if we could recover just a 'natural erection', even smaller than before, but with some sensation, not flaccid state penis diformed (coz in Peyronies Disease you have this diformity in erection, not at flaccid. When you are 100% impotent, and you have the diformity at flaccid, it means so that you have ALWAYS the diformity, so you see it when you wash yourself, when you urinate, when you change your clothes, etc, etc, i mean always, you can go everywhere or do what you want you bring it with you!!!) it could be acceptable. But even that, aparently, NO treatment can help.

To Liam: i don't totally agree with what you say : a person of 5 years old who have is leg cut, and a person of 70, you cannot say it's the same. One will have it for his WHOLE life, the other for the last years of his life.
I agree to say that the 'intern suffering' is the same. A leg cut will be as horrible at 5 or at 70 on the principle. But the consequences on the life will be totally different, and you cant tell the contrary.
In the same way a man of 45 who has his wife and who have a CURVATURE on penis in erection, but who can have intercourse, and whose wife is suportive, won't be as dramatic as a 100% organical impotence of a boy of 20 who has no situation at all.
And on this point, most people would agree with me. But, we never say that the man of 45 with his wife will not suffer. No, it will be horrible for him too. So , if it's the case, this person could easily understand the distress of the 100% impotent 20years old boy.
But, for sure, saying 'my case is worse than yours' will change NOTHING, definitely. But insisting on the violence of the case is important. Moreover, coz it's a 'non visible illness', it's horrible, coz people can't guess why you are in so bad mood every day...

I would add that i 100% agree with youngPD post, i would have said about the same.

So i conclude on that because anyway it will change nothing and as for me i don't want to 'ask for pity', no, it was just some explanations.

Hope you will all recover one day.

Antony

Hawk, sorry i posted mine before read yours coz there was a computer bug, i read your post now

Hawk, i understand BUT ....   ;-)

Hawk i just very quickly answer to what you mention in your post about what i said. (i wanted to finish on my precedent post, but just answer when you quote what i said).

The difference between the relations- the girl who sees the guy she loves going from so strong to so weak- is, one again, a matter of age; sorry to insist on that but it's important: 1st my gf and me have not been together for 20 years, so we have not lived so many things that would had made ourselves so proach in such a problem (like you and your wife i.e.). We have no kids,are not married, or things like that. Second, we are in our 20'ies, and a girl of this age doesn't have the same needs than a woman of 50, and that's a FACT. (or you don't know the behaviour of girls of nowadays). Third, -and i can admit you say it's stupid, but that's a fact too-, in some areas, girl needs to be with a strong person, coz life is harsh and rough, and needs somebody strong, not a disabled and depressed guy. So when she meets a very self confident, strong, lots of friends, atractive person, and when some months later this person is weak, no good looking, dark ideas, no more go out, no more strong, it's understandable it can be a real problem (that would no be the same in other situation, other age, other area in example). The best thing for her is to leave you. To conclude on that, i would add something that you will probably think it's ridiculous -i can understand- but that's a fact too (that's not only for me, but for all the persons of some areas), reputation has a big importance here too, and it's sometimes better to hide yourself when you have such a problem, than expoding it.

Then, concerning suicide, i don't agree when you say it's a result of mental but not of disease or situation: that's wrong. I mean: how do you explain that a guy who never had any suicidal ideas, who lives fully his life, who is full of ideas and projects, suddenly has this terrible accident (coz one again, it's not a Peyronies Disease, it's more an accident than an illness -even if the conclusion is the same), with such disaster consequences, with no hope after lots of trials, and wants to finish??? Isn't it the result of the situation, of the 'illness' -or accident? Yes it is. No illness = no loss of life= no suicide. So, as for me, it's a DIRECT consequence of that. A boy who has acne has treatments and hope to solve it. Moreover half of young people have acne. If he gets to suicide for that, he is mentally weak. Coz it's 'only' a matter of patience, coz after 1 year treatment, most cases are solved. I had some acne in past (not so much it's ok, but not so good looking), i didn't mind! i knew i was treated for that, and it would heal! Moreover i was not alone, and also i could hide it. Finally after one year, i had a clean face and never had acne again. Now, i can bet in one year (it's already several months), i will NOT have a 'normal' penis again, and sensations, and so as a CONSEQUENCE of it, my mentality, behaviour ,in fact the boy I AM (or i was...) will never relive again. So no hope. So dark ideas understandble. Not as a result of mental, but of the problem in itself, the penis problem, not the mental problem.
To conclude defintely, i would say: you can make the bereavement of a proach, to be in mourning of someone else, it will be very hard, but you can. But you can't make the bereavement of YOURSELF!!! You can't live being dead!!! It's not possible. I really tell it as i think it: i would SINCERELY have prefered to die in a car crash, to die on the moment, without thinking of what's happening, than living in this conditiion, and always telling myself; 'if i suicide, it's horrible act to take yourself life, and it's horrible when you think about all your proaches and people who like you; but i don't manage to stay like that, both my body and mind don't respond, dont resis't'. Being between life and death  every day, every minute, every second is an horrible state. I have read some testimonies of persons ,in other countries, that feel and say exactly the same, coz they live the same. It's also for what reason i can understand what YoungPD feels and says.

Antony,

In you arguments make many absolutely false statements and do not follow logic thought processes at all.  What is important however is that you believe this: You are among the most unfortunate men on the planet and that happiness is not possible for people who have it as bad as you. 

How do you explain people with no arms and legs that feel a sense of gratitude, joy, and purpose?

Do you know who Stephen Hawking is?  He was unable to feed himself by age 30 yet he finds purpose and joy  as do millions.  In fact he cannot speak and is confined in a wheelchair.  I think he has yet another new book coming out.  Hmmmmmmmmm, Strange how that works.  Maybe we can just explain it by assuming he has a straight penis. 

http://www.hawking.org.uk/disable/dindex.html

Stephen Hawking Quote

QuoteI am quite often asked: How do you feel about having ALS? The answer is, not a lot. I try to lead as normal a life as possible, and not think about my condition, or regret the things it prevents me from doing, which are not that many.

Some statement for a wheelchair bound man that cannot move or speak.

Hawk,


we can't agree about that: it means, that it's not important what problem you have, it will never matter, coz we can be happy inside, and other people have always worse than you??? No, no its not a possible way of thinking as for me.

I respect strongly somebody with no arm or no legs who is happy in his life (or just tries make to believe he is), it doesn't mean that everybody can accept such a situation. If i follow that, if you lose one leg, it's not so important coz other will lose two legs, and the person who will lose 2 legs, not so bad, coz you could have lose 2 legs + arms, no definitely, it's not because ONE person on 1000 will 'manage to be happy' with such a crap life that other will be happy too. Sorry, i can't feel joy being disabled, and there is no point to live with no arm no leg or no what you want in my mind. Moreover disabled always receive compassion, its human, and i dont want to live with this compassion in the eyes of the others. In some societies, you just need to be strong, if you are not, you are 'eaten', and i dont belong to this category of weak people.

If i follow this reasonement, i can just have what i want, aids, lose legs, lose sex (it's done) , lose eyes, but it's ok, we have to 'accept it' and find the 'intern joy'. Why would i not go to a monastery, become a monk, look for the 'inside hapiness'? Sorry, i live in my times, in my generation, i have a way of life, a behaviour, i don't see the use, one again, to live without being yourself.

It's not because you take one statement from a guy like that , that he is happy like that. Ask him if he would prefer to be 'normal' and not writting books, or living like that?

We can't agree: i have this mentality, to look 'up' than me, to ever try to do the best as possible, i look always 'to the sky', not 'downstairs'. Few months ago, one day, i was in perfect form and was working hard to manage my dream (it was several years i was working hard for that), the day after i was disabled. I won't compare me to people in wheelchair or what you want now, i respect them, but i was not planning that for me, and if some prefer living in such condition, other prefer die, and both reactions are understandable.

We have to respect all ways of thinking, you take a statement from this man, i could take you LOTS of statements from guys with our problem to YoungPD (who dont have a 'Peyronies Disease' in fact) and me, who express EXACTLY what i say, what we think. Its a matter of point of view, or you accept EVERYTHING, coz 'its life and it's like that', or you don't accept what is not acceptable.

The fact is, that happiness is a choice - The decision is yours.

I recommend "Man's Search for Meaning by  Viktor Frankl
The "Road Less Traveled", by M. Scott Peck

I also recommend counseling.

>>we won't agree that 'we have to accept, be strong , and life will be nice again', coz that's not the truth.<<

First off, that is not what we are saying.

We are saying that you are in charge of how you feel - about that (your feelings) you have a choice. And that is the truth. You simply don't know it.

The sheer volume of words you type bespeaks your pain. But people wiser than you are showing you a path, and you are saying it is not there.

And for you it is not there, because you cannot see it.

So, if you can but learn, instead of incessantly telling us how it can and cannot be, then life might get better for you. The choice is yours.

Now, instead of furiously typing yet another response, why not log off the computer and go check out some of the books recommended to you? See, this getting better takes a kind of work that you are not yet ready to do. But I have every confidence that if you start to do the work of healing emotionally, you will get better.

Tim

To Tim:

You know, I read your last post, mentioning Victor freckle's famous book, and believe it or not, I'm one of those people who have indeed done kind of an impressive track of what you would call "a spiritual growth". One of my occupations during my life was being a coach (business coach, based on the behavioral coaching method). I used to coach sales representatives as well, so I was there "THE challenger" and the one who used to be intrigued of how people act and react .I used to really learn about what may motivate us, as well as what are our self-limiting beliefs which may play a significant role in hindering us from walking the walk, or what makes us "quitters" or sometimes procrastinators. So I know what responsibility and avoidance mean and I sincerely practiced it in my life. 

In theory and usually even in day to day life I used to apply those premises and tried discerning my own black spots "self-limiting beliefs ", premature judgments and conceptions , my 'fixed ideas' and so on ,in order to unravel some intricacies in my life. I have been through all those seriously remarkable books and notions written by giants like Albert Camus (who was rather optimistic even in "the myth of Sisyphus", contrary to common beliefs),Frankle ,Nitsche and others. I even attended various existentialist and 'awareness workshops' and self-learning programs (way before the onset of my current fibrosis) ,most of which were based on Heidegger's philosophy ,stating ,rightly, that in order to live your life in full and to optimize the benefits you can elicit out of what you've got ,you should distinguish facts from the "story" (equals your interpretation) you have chosen to roll in your head about what happened. Heidegger claims, that once we manage to make this subtle, not always easy, distinction and to recognize what are the hard facts, as opposed to our associations, patterns of interpretations and so on -- that's the point where we can gain freedom, being more aware of our black spots, making informed decisions and having more control of the way we run our lives.

While those tools are far from being any secret, and some of them may sound as trites, and indeed some are so, they all may be viable and handy under certain circumstances. I honestly tried and try even today to use those tools, and other "can do" phrases. Nevertheless, easier said than done I can assure you. Well, yeah, for some reasons I am still here on earth, so I needed any "tool box", in order to even keep my head up along those month and almost years now.

However, does it really resolve the crucial loss of my manhood? Even if I could use the same old phrases some of you guys were using such as: "even without any Penis, I am a man" or "if she loves you it would not matter even when you are not able to do anything", and so on. the thing is ,even by saying those sentences, believing in it, and looking at the things you can still have in your life, rather than those you lost (all techniques I really practiced in other crises I had in life ,and trust me -I had many of them),I can still tell you there are things ,that in my age and my circumstances, are almost impossible to revive your spirit beyond what had happened.

Most days I feel like going round and round in cyclic thoughts if you know what I mean. The kind of thoughts that always lead you to a dead end.

In order to illustrate this cycle, allow me to say that most of my friends have no clue about this issue. Some of them DO "know" that I have some "mysterious disease" or so. some of you might have probably suggested that I'd better be opened and frank about it ,but with all due respect ,I would be open regarding any other issue had I had it, except for this one ,especially provided my previous reputation in my town (and I can relate to Antony's notion abut his remark about "reputation". ).You can not judge this attitude of me and Atony about hiding it in the closet as its cultural related I reckon. I would never tell this to the lion part of my peer group, and this by itself renders my life even more tricky to handle ,as I needed to become a sort of an actor on stages ,keeping my outside persona similar to my previous self ,whereas inside I am bleeding. I play as if I were the same horny playful guy with the girls and inside I feel more and more pathetic for this duality, and more dead and tortured than ever ,for not being able to be the same old outgoing happy guy who need no lies in order to cope.
Most of the times, I avoid going out with them, as to avoid seeing what I've lost.

So, yes, I could indeed be closed in my home, and adjust to the new circumstances, though the it would not be me. What does this mean to adjust under the "new rules of the game"? I can not go to the bars and court the girls as I used to. I can't be really frank with my friends without feeling more awful if I told them.(and they are real friends. they would "accept" me. it's me who can't bear sharing it). I can't enjoy the music and the fun I used to have and the night life I used to practice since it was all a part of my sexuality and  you can't distinguish my vitality from all those components I had in my life.

Do I have other hobbies or other possibilities to enjoy life ? Well ,like all of us ,of course I used to read many books an engage in many other activities ,however after the onset of this infliction, I lost the spark and the enthusiasm regarding those hobbies as well. I do read sometimes and see some friends but something deep inside of me is dead. When my sexuality and my sense of real manhood vanished, it was like all my other desires and sparks were dimmed all in once. Like a car without an engine.

It is So much than sex. People tend to say "there is more to life than just sex", and indeed I second that. however ,sex in many direct and indirect means ,some of which I illustrated above, bear on many other facets and aspects of your life, especially in such a young age when you never had any chance to build yourself up in all aspects without needing to worry about such a tragedy. I mean even financially, it is crucial, when you are not really well established yet as far as profession is concerned and steady occupation, and you are too shattered to really pull yourself together and put all your efforts into something remunerative and promising a promotion ,when you think your future is kind of up.

I did think about somehow bypassing those obstacles, but it just seems, after weighting the pros and cons, that living your life under those circumstances (for 30 years more...) is just a lose-lose situation, as opposed to synergy. No matter which rout I chose, I won't be able to accept it. And I won't use any anti depressants in my life as I am generally against using substances. So in one time I did go to bed with a girl, and I tried using the pills. 2 years ago I could still able to have 5 minutes penetration. Today it's not even possible to think of that. So when I was there, I felt so damn humiliated to be like that. And you want to know something? The first meeting with that girl, we went into a bar and danced. then I asked her out of interest : "why did you leave your last boyfriend ?" and she openly said:" since he was impotent", and then ,she had no clue yet about me ,so she even showed me her last boyfriend and pointed him with her finger there in the bar. And those talks happen all the time, I heard it several times. it's another issue on top of all. And what's the point of having a relationship in which the best you can do as a man is oral and cuddling? I just do not see myself in such a condition.

So that's where I am now. And BTW - I second every word Antony said. Sorry if it makes some of you feel angry. It's not that if we do not agree with some of you so we should be told we're wrong. Please guys, be democratic and accept that everybody's different and have different points of view. It's very common in Democracies.... ;)

All my blessings,
Ron     

Ron,

No one is angry.  We may be sad for you or disappointed that you can not begin to internalize the wisdom from some that have many more years of adult living and the experience it brings.  I am hopeful however that you will still evolve in a positive direction even though it my be at an almost imperceptible pace.  I think it will happen as long as you nurture it and not go through the endless negative cycles of dwelling on loss.

Maybe in fact it is time to see if your past life style was not restricting you from other aspects of life that were closed off.

It will get better.

"Most days I feel like going round and round in cyclic thoughts if you know what I mean. The kind of thoughts that always lead you to a dead end."

This part I am starting to understand!

Tim

To Hawk:

I truly appreciate your genuine concern and sympathy, and it has significant merit for me, albeit having some disagreements or more accurately said - missing to be at the shoes of each other. nobody can be blamed for it obviously ,as the nature of any each of us ,being so multi dimensional, preliminarily compromises our ability to inherently experience what the other one experiences and interprets. The more we willingly come to terms with those natural limitations we have, the better can we converse more open mindedly. That's one thing I learnt in life.

As for the age factor, I do not mean to brag, but I reckon many people at the age of 50 or more do not have the same life experience which I had to cope with, unfortunately. Moreover, sometimes age may interfere with good understanding of my condition, unless this older person had been totally impotent and calcified when still single and very young ,without having any relationship at the time it happened. Otherwise it's almost worthless to compare, since when you change some prominent factors like age of onset, marital condition, having kids or established career - altering those factors make the whole comparison way less relevant or insightful, in my humble opinion.

I am just coping with so many factors which I have no clue how to handle if at all possible. Starting from the fact that there's nothing to do about the fibrosis which keeps progressing. going through the way it looks when flaccid, my severe impotence, the fear from even initiating any non-intimate relationship (or non sexual) in my young age, the social cycle, the insecurity in a given relationship (even had I been bold for this kind of relationship) as a man who is in essence with almost no sexual appearance (close to having nothing down there). So who can ever cope with this severe condition, especially given my previous life? Who wants to? Why? What for?

I figured out many times, that having any kind of misfortune or disability from birth, might paradoxically be somehow more "workable" so to speak ,than losing it all of a sudden. Though both are incredibly difficult to cope with

Thanks for your kindness and efforts regardless of anything I said.

Ron      

To Tim:

You said you are starting to understand the sentence of "the cyclic thoughts". I felt you were cynical there weren't you?

Anyhow, when I said cyclic thoughts I meant when you examine your options and no matter where you look it looks imperceptible for you. And then you come back to the other option, which looks even more devastating, and so on.

Particularly, I find myself asking myself if I could ever be with a woman, while being even embarrassed to take off my underwear today. And I try to convince myself as if intimacy is ok without any close to normal sex. Then I admit I can't accept it. Then I think of more respectable option like "a-sexual" relationship, which sounds even more nuts to me. Then I think of the implant maybe, but then again, I lost so much in length and girth ,that having my current tool reduced even a bit more ,would leave me with almost nothing.

So, here where I am, trapped in those cyclic thoughts.

Thanks for replying anyway,
Ron

youngPD & Antony
Can I ask a question, Have you been to a good implant surgeon? In my research a properly preformed implant will only cause a minimun of loss in length and normally a gain in girth.
In my youth girls preferred girth to length.
Buy the way. STAY OUT OF BARS!!! Are these the type you want a lifetime relationship with? The girls that make a man truly happy are not found in bars!
I agree with HAWK you need counseling. Find a grief counselor.
Jackp

To youngPD and antony:

Hey guys, some of us old farts (I am almost 79 years old), old codgers or whatever you young squirts prefer to call us, have been "Around the Horn" with Peyronies Disease, ED as well as many other maladies in life. We know where we have come from and where we want to go. None of us have it "easy" with Peyronies Disease, ED as well as cancer. Prostate cancer has left many of us totally impotent, with deformed penises and other horrible health issues. I have faced many devastating health problems in my life up to and including 14 surgeries. But, I never got so far down as you guys seem to be and I picked myself up after each surgery and kept on going.

I personally developed Peyronies Disease at a very young age too, 24. In the 1950s there were no "cures" or "treatments" nor any other forms of help for Peyronies Disease. Some of us at that age were impotent for one reason or the other. So, we know very well about the devastataion of being robbed of our manhood at an early age. However, we chose to rise above these personal problems by standing up the challenge. We did not hide our head in the sand like an ostrich, but looked for help in all the avenues we could.

The bottom line of what I am saying is this:  In the words of a sailor, either do something or get off the pot (cleaned up from sailor talk). I, for one, have tried to help guys of this forum through PMs, posts, as well as emails. Most have taken these efforts and moved on to higher ground with Peyronies Disease. You guys seem to want to challenge any and all efforts to help in any way we know how. This horrible mess has been around since in the mid 1700s and so far there is no definitive solution to the problem. We collectively have chosen to do what we can to fight this disorder, disease or malady in any way that works for us.

In my case, the VED therapy was successful after 50 odd years of nodules, plaque, curves, impotence and rejections by partners. Thousands of dollars have been spent seeking anything that would help. So, I know at least somewhat of where you are coming from, in case it would matter to you.

Anyway, it is time to quit writing lengthy dissertations and get something going for youselves. The forum is a place to vent your problems, ask for advice and any help that be rendered from our experience but not at the expense of being overbearing with posts. Now, either accept the efforts offered by the guys here who have been there and done that or SHUT UP!

If any of the above offends you in any way, I am sorry. But, I just can't feel sorry for you any longer if you still take the approach that you guys demonstrate in your verbose posts here.

Best to you, Old Man

PS: There really is life after Peyronies Disease, ED and other men's health problems, you have to make it happen!!

Old Man
I just read your post and only have one word.
AMEN
jackp

Hello,

there is a fact i don't understand : why creating a part of the forum, dealing with 'psychological components' (that is a great idea) if when you sincerely express without any hypocrisy what you really feel, you are not understood -or rejected? So is the part on psychological component is here just to say 'it's ok, i have it, cool, i'm impotent, i've lost all sensation, i will never live my life as i had to , but everything is cool coz i will find intern and mental hapiness'???
One again , i speak as for me, i was not asking any 'psychological help' (i see a professional for that), nor any compassion or whatever. I was just aproving what youngPD said, and expressed the same, that was just expressing something that of course you can't tell to everybody in every day life, coz when you are at restaurant with friends, you don't say 'i broke my penis, i am impotent for life' as you could say 'i have a headache'.
Anyway, i'm looking for medical part, not psychological help, so i thank you for ideas about VED or pentox (my doctor had already given me a prescription for that anyway, but aparantly, it has the reputation of not really working), or l-arginine (and all 'medical solution' that can be useful). Its a great help, for sure.
There is a point, we can speak as long as we want, it will not change the things. Only real medical hope could change.

Tim, when you say 'furiously typing new response', you don't know what you speak about. No one is 'furiously typing' anything, a guy has just posted a SOS in 'psychological help' coz he is distressed, and understanding that feeling , and living exactly the same i added explanations about that, it's only explanations (even if it is very dark ones i admit, but thats the truth of what we feel, it's honest feeling) and it's not because we don't agree on some points (and definitely age, social situation, condition, way of life, area, make the points of view different) that we say stupid things or that we 'furiously typing response' (mean 'to be furious and type in rage without thinking', i am cunscious and not stupid as for me, i know to speak, think, feel things, understand others, realize what happens, YoungPD too i bet, and there are reasons to be taken in an infernal circle of dark ideas). I'm sorry if you don't understand that, but anyway it does not matter, coz we are all agree that complaining (it was not what we did, it was only explanations, and sincere and realistic ones, not hypocrit ones) will not change anything. We agree on that point.

To JackP: as for me, even if i do not want about an implant so young, for all the reasons we told and clearly explained (and which are understandable), yes, as for me, i have spoken to a good surgeon who's dealing with penile implants -a very 'human and comprehensive' one. I wanted informations if in my mind i would finally consider this option. HE told (so it's not me, it's him) he WOULD NEVER TAKE RESPONSABILTY to put an implant to a so young person (it's his own words, not mines, and HIMSELF makes the difference between a boy of 25 and a man of 65 , HE told me 'when you are aged person,  we often directly consider a prostesis in severe cases of ED -i can give you his explanations if you want-, but in young cases we can't do that). After, if i force him (but at the origin i don't consider implant as a realistic solution, so i don't see myself forcing him), and if i would sign some papers to assure that it's what i WANT FOR SURE and i take my responsabilities, he would maybe accept (and not sure when i saw how categoric he was)...
And it definitely makes lose size, and not sure about girth. (the problem is somebody who is at his original size and will lose 3 centimeters is huge, but when we have ALREADY lost 3 centimeters, 3+3 = 6, so to have a mechanical and tiny penis is not so cool).
And for the bars and clubs, that's the age difference, maybe at 55 i would have prefered 'quiet places', 'walk in forest', 'go to museums' ,etc, etc, etc, but i have the time for that (or i was suposed to have), and not atracted in that. But that's not the matter, i understand and respect differences of points of view concerning the type of lifes as for me.

Hope the best for everybody anyway.

Antony

After enough posts to fill a book, these are the points you have repeatedly made:

1. Life is terrible! 
2. There is no joy or hope of joy!
3. No one can understand me unless they are a party boy that is currently my age with severe Peyronies Disease (and they agree with me).
4. If anyone disagrees with me I will assume that means they do not understand me.
5. I reject any and all input from those that have found joy under similar challenges!
6. I actually refuse to accept that others have had very similar challenges and still found true joy.
7. I refuse to take responsibility for / or acknowledge that I can change my attitude. 
8. I am convinced the medical community will never have any progress on Peyronies Disease in my life time! 
9. I do not want any of the options the medical community has at the current time. (implant, PAV, VED, traction,)

Trust me when I tell you we DO understand your position.
We do recognize your right to have any destructive attitude you choose to have.

The problem is that we cannot help under such self-imposed restrictions.  We universally refuse to agree with such a seriously flawed life view.  We are not ever going to agree no matter how well we understand your view. We are never going to say, "Poor boy, your life does hopelessly suck!" 

We are all here to try everything we can to change anything we can, and to build fulfilling lives around EVERY challenge we meet.

Now that we understand each other there is little left to discuss unless we change our positions. There is little point in each of us endlessly repeating ourselves trying to get the other side (2 Vs 1334) to abandon their chosen paths through life.

Let us know if any of those 9 things change for you.  We will let you know if we ever decide to bond with you in a state of hopelessness, because that is what it has come down to.

I sincerely hope you can make it work!

Hawk

To Hawk :

First of all I want to emphasize that I respect and cherish the very existence of this forum and the genuine intention to help. However, I keep asking myself, whether it has ever occurred to you, that coping with any kind of trauma or crisis has various psychological modes and several stages  - none of which should be considered redundant ,discharged or should be dispensed with.

Indeed, in some cultures, when you grieve the loss of beloved ones, you are granted the time to "wallow in your sorrow" without needing to feel any guilt for that. It's a natural process, no matter what you say. It's an essential phase one needs to fully complete, otherwise a real in-depth wholeness or adjustment won't be achievable at all.

What's the measure of this acceptable period? I can't tell and it surely differs from one person to the other.

I myself, as a coach, used to have your presumed approach of "let's move forward" or "let's be positive" or "if you aren't taking those advices I've just given you, so I forgo this conversation". And then, when I've been to London, attending the course of the behavioral coaching institute, I truly learned and internalized a staggering lesson regarding the complexity of coping with crises and how you, as a friend, coach, or counselor can "dance this tango" with your client/friend . The golden rule should be resilience and effective listening. Sometimes, one really needs to open up one's heart and plainly vent. Are we sure of results here? I reckon we can't be. Is there a surefire way? Is there right or wrong in any 'post trauma' reaction and coping? Any entry level psychologist would tell you, you can't and shouldn't try predicting it or jumping into premature inferences.

Judgment is the worst tool you can use in those cases. Telling somebody that if he's not positively going forward, he may not be welcome, is exactly like pushing someone over his edge. Help should never be restricted to being receptive to all offers given to you. Resentment and resistance are very familiar and legitimate parts of any post crisis responds. Does it make the conversation a bit awkward? Maybe , but no less fertile,even though you may not instantly see the impact behind and between the lines.

And with all due respect, I reckon that your current post along with Old man's post, are not really being attentive, compassionate and supportive. I know that your intentions are absolutely pure, frank and supportive ,but the means you've chosen to deliver it ,is more pushy and verbally even coercive ,rather than tender and understanding.

No one ever expected you to say "oh I feel so pity for you", as you noted. It's not about that by any means. But according to any sort of support group, many of which I used to lead once, judgemental attitude or strictly discharging venting, is neither supportive not trust building with someone who needs to be listened sometime. In some points, the best you can do for a human being is to listen. Trust me - that's A LOT for many people in many cases. I know that for ME it makes a difference. In some cases, just by empathically listening, I myself prevented people from ending their lives. Can you be sure it would help? No, but one thing I can assure you - when one has nowhere to turn for even just opening up one's heart and true feelings, the inner mental pressure may and will increase ,leading more rapidly to the point, when one experiences dead end. Just for your information.

The above said reminds me, that I've once read a famous book dealing with the inherent differences between the typical way women and men tend to address crisis and problems, and why they too often fail to communicate effectively. Men are more "solution focused", while women are more "conversation focused", which most men can see as a "waste of time".

But guess what – I reckon women usually tend to think and do things better than us. The tenderness, the effective listening, the non-judgmental approach, have been proven to win the battle more effectively than the "solution oriented approach", especially in cases where the latter would lead to nil result, technically speaking.

Whereas no effective solutions are at hand, I would say that the emotional field turns into the main dimension to work with. Which just lend credence to the point I suggested above.

P.S: I do not think the statement "2 vs. 1334" is mature, nor does it prove anything. As I said before we're all different with different approaches and life experiences, and as much as you suggested the "2 vs. 1334" ratio, I could easily provide you with different statistics ,but that would be like playing children's games which I have no interest to play. Would you think that if the statistics were more like "1500 vs. 1300" ,would you have any chance to know of those 1500 Peyronies Disease sufferers who have maybe silently chosen a different way than the gentlemen over here?. Would it be likely to find them here? I think no. so your example is like going to a basketball game of the LA Lakers and say: here I can show you 500 fens of LA Lakers, as a means to prove they are the majority in the US. You can't be serious. 

All the best,
Ron

Ron,

First let me assure you that I was serious.  I have no interest in listing a resume', transcript, or reviewing my life experience beyond assuring you I am very aware that people grieve in stages and that different people deal with loss and stress in many different ways.  I also want to assure everyone that I was not functioning as a professional counselor or attempting to be the substitute for a professional counselor.  That is the very reason I recommended a visit to a professional counselor. This forum is not for dispensing professional medical,  or professional psychiatric treatment.  It is a patient support group where patients give their point of view on what helps so that others can discuss that with professionals and make informed decisions.

It varies with individuals, but at some point in that patient-to-patient discussion one or both sides feel they have exhausted all they have to say on the topic.  That was the basis of my post and my reason for cooking down the positions as expressed by the two styles of reacting to the impact of Peyronies Disease.  I also want to clarify that neither you or Antony mentioned stages or any hope for moving on.  It could be an attribute that comes with maturity but most men realize they are staging even as it happens (disbelief, denial, grief, anger resolve etc).  These stages are fairly basic to human understanding.  In this case the two of you presented extreme argument against even the suggestion that work and future growth may move someone forward.  You in fact have reinforced this paralyzing notion even if you did not intend to do so. 

Finally let me reiterate that this is not the place or the substitute for individual professional counseling.  I as one member will not allow long posts that deny and refute every helpful tactic for growth to go without a clear response.  To do so only damages the thousands of others men and women that search the internet for the techniques for moving on.

I again emphasize the need for professional counsel, and the work necessary to follow that counsel.  Nothing I said in this or any post even slightly suggests that continued comments are not welcome from those that want to continue the conversation regardless of their level of compassion, their point of view, their method of dealing, or their refusal or inability to deal with Peyronies Disease.

To Hawk:

I personnaly finish on that, coz as you quote it, it's an 'impass', the same way our situations is an impass.
Just to answer to what you say, i was just typing one post at the origin -i prefer speaking about the MEDICAL solutions than about the psycholigcal issues-, not 'enough post to fill a book', then it engaged debate and conversation, so i just gave precisions and explanations -moreover i think 'psychological component' part is done for that even if it was not my primary goal?

I know you can't help on this point, and i did not ask for that, it's not your role, there are psychologists or psychiatrists for that.

I was just feeling obliged to express why we were not agree on some points. I have the right, i think, not to agree with some things you say, or not to feel 'more happy or reassured' because a harmless or legs less man wrote some books. It does not mean i don't respect what you say, what you think, that i don't take intention about that, so it's logical that the reciprocity is true too. I don't try and don't ask for you to think or say 'poor boy, you are the sadest person on earth, you will never manage, just finish now', no, no, i don't ask this, nor compassion, one again we were just expressing a dark feeling in horrible moment.

After, yes, life is terrible now (it has not always been, hopefully, but it turned in a very bad way), no for sure there is no joy (moreover when you have to give up a project you were nearly to manage after long years work -both personal life and social life and sexual life is a lot), i don't say no one can understand me (i spoke with several people that do understand, for the good reason they are living exactly the same, and are their lives broken in the same proportions), i totally accept that you disagree with me (i told it several times), we can't change atitude in a 'non hope situation' -we could wait one year or 2 like this, if there was some 'light at the end of the tunnel' but its not the case; if i have doubts about medical community concerning this type of problem, it's because i went to LOTS of consultations and spoke with LOTS of doctors, who are lost themselves and don't give any hope (exept taking cialis, which is no more useful coz makes no more effect, exept the side effects). And concerning the solutions, we explained about implant (and if you read well what i told, i told you anyway, surgeon himself refuse to put it on young men ), and VED i tried it -with no success, but i will try a new one as soon as i have enough money to buy it, following the advices of Old Man.

What i want to say is it's you who seem to say, that because we don't agree on some points, so we don't listen to you and don't accept what you say, when we just explain our points of view and how we live that. We are NOT in a logical of contradiction, or want to prove you are wrong, or whatever, we are only in a logic of explanation, and nothing more -so it's different.

But from disagreements can come sometimes very positive issues, but you have to understand that acording to your personality, situation, etc, etc, all people do not necessarily manage to think or act like 'it's ok, i'm disabled but can be happy anyway'. If it was the case, there would not be so many suicides anyway.

Regards

First of all, this forum is an amazing source of information and I thank everyone for their input. 

The advice by the older members on this thread is golden and I strive to try to take advantage of it and employ it to my own life.  Unfortunately as a 23 year old struck with impotence, I find it hard to really digest any of the wise words and try to move on in a constructive fashion.

Antony, I had started PMing you and I apologize for not following up.  My life has been busy and feels busier by all the time as it takes me longer to do what I used to be able to do in one day because of the time my mental grief occupies each day. 

Antony and Ron:  If you would like to discuss in PM about some of the thoughts you are having (not feeling like yoruself any more, walking around knowing you are carrying "it" with you, lack of goals, end of youth and sexual life, fear of future, fear of ability to find a wife, loss of connection to friends, etc.....), then please feel free to send me a note, and I will likely do the same if you don't mind. 

This is not to knock the discussion on the main board, which I find to be immensely valuable.  I just wanted to say that I understand the mentally crippling nature of having severe ED at such a young age and wanted to provide a sympathetic ear for venting if that's the stage that Antony and Ron (and myself) are at right now.

Thanks to everyone.

You posted your post just befor i sent mine.

And one again, to be clear, here was NO intention of argueing, fighting, proving anything, etc etc in these posts. As for me, i dont take it as us VS you, it would be stupid in such conditions. There is no animosity or agressivity in any post, sincerly.

Hello California, make me pleasure to see you again.
I understand when you say 'it takes me longer to do what i used to be able to do in one day coz of the time my mental grief occupies each day', as i understand its hard to 'really digest any of the wide words' etc...
And of course the forum is an amazing source of information and great job is done here, and we all agree about that.
Speak to you in PM.

Antony - tried to send you a brief message but your inbox was full.

A note of clarification.

When I said "furiously typing..." I did not refer to a state of mind. Something is lost in translation I guess.

It means to type quickly and with some amount of "pressure" in the brain. I don't know that but it seems that you type a lot of words that say the same thing again and again. Hawk said it well when he summarized your stances. Old Man said it well when he said that you are writing "lengthy dissertations".

It is a tough stance for many of us here. I personally am certain that you do not FEEL empathy for others in the similar situation - perhaps for each other, but not for anyone who (can) feel different. IOW, you do not seem able to "get it" about what we are saying, in that you clearly believe it to be false.

For me, I do not come here to complain - though sometimes I do. Getting "support" does not mean someone agreeing about how terrible life is. It means others sharing with you what has helped them, so that you can learn.

We share information about drugs, and surgeries. Yet you say "that's not for me". We share helpful information about how to cope with grief, and you say "that's impossible!" You seem to believe that our giving you this advice is PROOF that we cannot understand your pain, or else we would not give it! That is a tautology - yes, go look it up.

I am not cynical about you two, I am frustrated and tired of the same old same old. How can anyone help he who will not be helped?

You seem to complain now about our frustration - that is how much you want us to understand. But we do understand.

We understand. Really.

Now, do something. FIND a doctor who will prescribe you Pentox and Viagra and arginine (and DO NOT ASK ME AGAIN WHY VIAGRA, OR TELL ME IT DOESN'T HELP YOU GET ERECTIONS, FOR I HAVE TOLD YOU MANY TIMES WHY WE RECOMMEND IT!!). That reminds me also why this has been a frustrating exchange for me - I often feel that my advice is not listened to so much that the very core of it is misunderstood. Just go back to  read prior exchanges about why we recommend Viagra.

"It's too expensive for me here..." - order it in bulk from India.

I could go on - because for many of the road blocks that you face there are solutions. We have shared with you many of the solutions. But instead of hearing curiosity (saying "Tell me more about how that helps me", or "Tell me where I could buy that cheap"), I hear instead "It's impossible".

So tell me this - if you want your penis back and functioning, why are you not exploring Viagra, Pentox and Arginine? Why are you not talking to doctors about surgical options? Why if someone says "You're too young" are you not challenging him and going on to the next doctor?

Don't answer - for we already know why not. There are "reasons" I am sure. But to me it is clear - you are stuck in your mind.

So, good luck getting away from there for that is how you will find a way to a better place.

Tim

Now, I must sign off on this topic for you. I am willing to post about how I have coped with this disease in good ways and terribly immature ways (um... when I was younger). I am willing to post ideas for healing. I am not willing to continue to hit my head against a brick wall.


Tim

TIM,,HAWK,,OLDMAN,,

ALL three of you have hit this right on , i back you up 100%, these guys are not listening to the good advise being given here, but only want to debate and argue...Enough is enough.....

I have taken the advise of Oldman and have gotten on the protocol of using the VED,,,it's really helping and will post about it over on the VED section.....

kimo

Kimo,

Clearly the struggle is different for different people in different stages.  I certainly have no desire to "gang up" on someone that is down and I personally know others here feel the same.  There has never been a forum with near the empathy and compassion found on this forum.  There has never before been a forum that allows such freedom of conversation but avoids flaming and personal attacks. There may be some language barriers or a misunderstanding of the entire point of this topic.  For real support under this topic, there is a necessary foundation. That foundation is a desire to cope with the psychological aspects.  That is why the name of this topic is "Coping with Peyronies Disease ".  Unless a member is ready to make the commitment to actually begin the journey of coping, this topic is not for that member.

I guess the same is true of most topics.  It is assumed that a person is receptive to at least considering input if they ask a question.  I think it is safe to say that 99% of the reason for a post assumes that a member actually wants to consider helping themselves either physically or emotionally, or that they want to help another.

Hawk ,
I really would like to thank you for this post in any aspect. you're absolutely right when you said it's assumed one is receptive to a certain extent if one posted here.

I ,personally, am trying to make my best efforts in order to cope with this condition in any aspect.
Just a year ago ,even working could not be considered as a feasible possibility,according to the mental impact this condition had on me. I was way more shattered and debilitated than I am now.but now I am at least trying to apply for some vacancies. I am not trying to claim I'm happy today and pleased. but I know that one way or the other ,I have to come to terms with the fact that those are the cards with which I have to play now,and I need to make my best to elicit the best possible results out of them .

I constantly have those ups and downs. one day I may be more of "action oriented" and operative ,while on other days the passimism takes place . I may go to a counselor soon. I have nothing to lose by trying that as well.

As for Pentox ,I tried it for a week or two now ,but since I have an intestine problems (gastritis or similar condition) ,it has caused me severe abdominal pains so I had to stop it.

I did ask Old man about the VED and I need to find now where to buy it (I've heard one can build it alone ??? cheaper ?).

As for women ,I have indeed met one last week in a bar. actually she is very nice in all aspects ,but I'm kind of a chicken to approach her now .she even called me and offered that we date. I am intimidated of the fact she knows my best friends too. otherwise I would give it a shot maybe.maybe the VED will give me some new hopes in this regard.

As for Viagra and Cialis for improving the blood circulation ,I would do it ,but I am just afraid of "NION" which is something that may make one blind ,since those pills are PDE5 inhibitors. other side effects are frightening too. I will be happy to hear any comments about it.

Anyhow ,I think the last post of Hawk was very sensitive sincere and understanding ,and it provided me with the support I really need those days.thanks for that mate.

I bless you all ,
Ron

To Tim: i have finished to speak about the 'psychological part', but just concerning what you say, i just bring something: we listen to what you advice! It's some times i am under pentox, vit E, and take cialis... I don't know why you say you are not listened?..

Now here is a point of interogation for future: if i continue to take pentox etc and it helps nothing, in one year my penis will have shrink more and more. Even an implant (that yes, i don't want, but supose as a LAST chance) would not be possible when your penis has shrunk too much.
But if i don't give a chance to pentox and others oral or topical treatments, i will never know if it would have helped.  And i know it has few chance, acording to the doctor words. But if it has only one chance on a billion, it's worth to try, coz of course it would be better to 'heal' than to have a robotic mechanical implant for life.
So here is a big dilemna. Try to 'heal', but take the hugh risk that it goes worse and worse (if its possible, coz it is already so shrunk and total impotence)

It's wrong that we don't feel emphaty for others in similar condition (for sure i feel less emphaty for somebody with a little curvature, than with the death of his sexuality, but i do feel emphaty for every person who has a serious problem).

Kimo by saying 'only want to argue', sorry but you are totally wrong.

Life Before Peronies
My wife and I were remembering past Christmas and decided to get out some old home made VCR movies. The year was 1988 and we bought a new camcorder for Christmas.
19 years ago we were still spry and decided to make a couple of home made sex movies. We sat on the couch for an hour or so and watched us in action.
One of the first things we noticed was the loss in penis size. When you loose it gradually it does not seem so dramatic!!!
I have lost almost 1.25 inches in length but fortunately very a small amount of girth (never measured girth before).
I am still waiting for my 2nd opinion on implant surgery Jan 9. Wish I had known about what a VED could do back then but my Uro never told me.
Conclusion:
We went to bed and it was great for both of us. We have learned over the years it is not the size that matters it is how you use what you have.
WE ARE SORE AS HECK but it was great fun.
Jackp

That story brought a smile to my face.

It's funny how we share here the most intimate details of our lives with others. Somehow, for me, it works. I don't feel either voyeuristic or exhibitionistic. Instead, I simply feel connected to other men struggling to figure out how to cope with a problem.

Tim

Jack and Tim,,,,,thanks for the great posts,,thats exactly why this is such a great forum,,,being able to say it like it is,,it's what most of us understand and relate to....

Kimo

Hey guys, a little bit about myself:

I'm 23. I've had Peyronies Disease for about 15 months, and it seems like it's gradually agressive. Until this week, I hadn't seemed to have any problems with ED, and I can't be sure that I'm not freaking myself out and causing ED via psychological stress (I'm going to be taking some added bedrest and give the "Exercices" in getting blood flow into my penis a rest) -- but it seems like I'm having more trouble getting hard. I think I might be experiencing the start of Peyronies Disease-related ED. PDED.

I'm terrified that it's because I'm getting attacked by the fibrosis in the cavernosa (as I'm sure y'all might have guessed, since I've asked related questions in a few of the boards). I'm so young, I am still in my sexual prime -- I thought I had years left of sexual experience like any other young man, but now it feels like I've hit a brick wall. I fear that by the time an effective treatment does come to light, I'll be an old man. No twentysomethings for me, no, that boat has sailed. That might sound shallow, but I'm a handsome young man who thought he had a bright future - now, even the positive non-sexual things I do in my life seem overshadowed by my scarring, my secret that noone but those closest to me can know about. I can write a book, I can get a raise at work - it doesn't change the fact that I'm slowly losing the very funtion that society says makes me a man.

I hear a lot of people on these boards who get support from their wives, who they love and are happy with...but what of the men who don't have that support? I am single. I want a relationship - but how does one predicate a relationship at my age without sex? I'm terrified that if I have a relationship I'll get laughed at, or some girl will tell all her friends I've got a limp member. For the majority of people, that's all it will be. Not a genetic abnormality of scarring but a shameful display of unmanliness.

These are the thoughts running through my head right now, and I don't like them. I'm at a pretty low point, and any words of encouragement from the people who have been fighting through this a lot longer than I would really help. Thank you.

Hey Ocelot,

First of all, It is terrible that we are dealing with this disease, but it is not the end of the world. Here is what I think you have going for you. First you are young so your body heals better, you have plenty of time for a good treatment to come out etc. Also since your Peyronies Disease is fairly recent you can still get on a treatment plan that will help. I would recommend you get on PAV and VED. May be even traction as some folks are having good luck with it.

As for being single you could look at as being able to concentrate on getting better and improving your Peyronies Disease without the pressure and anxiety of having to worry about the feelings of the other person in the relationship. So just relax, work on getting better or at least not getting worse, take it easy and most likely you will be just fine.

Just keep reading this forum and follow the advice of the veterans.

Best Wishes,
Pal

Ocelot:

You are not alone at getting Peyronies Disease at an early age. I too developed this crazy mess as the age of 24 so I know where you are coming from. Single at the time, (later married at 33), I thought that I as the "stud" of the year all the time. Sex meant everything to me at the time. Suddenly, there was this nodule that felt like H--- and burning pain on erections. You know the drill I suppose.

Since that time a lot of water has gone under the bridge of life. Now at age 78, Peyronies Disease seems like a thing of the past, but there are many memories of "treatments", Verapamil injections (more Peyronies Disease nodules), X-ray therapy, just to name a few of things that were tried.

I won't go into all the details (they are posted elsewhere on the forum), just wanted to share the fact that I too have had several bouts of this mess. So far, have come out smelling like a rose with Peyronies Disease. It has come and gone several times during the past 50 plus years, but somehow, someway, I got over each one. It is terrible to realize that one's manhood is suddenly taken away. But, don't despair, keep looking up and trying some effort to find a solution that works for you. There are many things you can do - first do some reading on as many topics of this forum as you can. You will find many posts that can offer   suggestions/solutions for you.

It is a known fact, that Peyronies Disease is one of the worst things to happen to a man, especially one so young. So, take my advice, don't just sit back and pity yourself, go out and find a solution anyway that you can, you will find much support of this forum. Feel free to ask any and all questions and the members here will do their best to support you in all possible ways.

Old Man

I got Peyronies Disease a year ago, during casual sex, and I am not a married man. For a year, I suffered from a lot of heartwarming feelings of depression, sadness, despair, mental anguish, anger. etc. Just starting to think about having sex again in a long term or short term relationship.

Are women still fairly well able to get off when you have a big curve? What about dents, if you have big dents do they notice this as well? Do they get off, or do they fake it? I guess the reality is some women find it very hard to get off with any penis.

Any of you see a shrink? I went to one once when I was a teenager.

Lately I have been having a lot of dispair and anger, I think its best I see one, but I don't think I would ever be able to say I have a penis problem...

Dented:

My advice to you is that if you see a shrink, just open up and tell him/her any and everything. You have to be honest with your feelings about your problem if you want to get the needed help. The word penis is not a "dirty word" that must be kept in the dark, it is a vital part of the human body!!

In the meantime, just apply your own better judgment about the issue, take stock of what is happening and realize that there seemingly (at present) nothing that can be called a "cure".

There are whole lot of guys in you same position and feel the same way at one time or another. But, with proper and realistic positive thinking we have overcome the problem.

So, in other words, get a grip on your feelings and overcome the negative feelings as we have done. It will work.

Best to you and if there is anything we can do to help, let us know.

Old Man

Dented
What if you had a problem with your heart would you let the fear of a penis problem keep you from having a Cardiac Cath? They do put on a loin cloth for your Modesty.
I just recently had back surgery. When I came out of surgery I had a Foley cath. Would knowing I would have a Foley cath keep me from getting my back fixed? I think not.
In the last 15 years or so I have had several procedures that involve or are around the penis. I even had an intern Uro examine my penis preonies plaque.
That intern was FEMALE.
I do not know what your penis problem is. Whatever tell the Dr. They have seen it all can help you if you let them.
Just wanted to give you some encouragement! Hope you find success and recovery.
Jackp

Dented - no time to answer the questions you raise about women, nor much need to. However, welcome to the site and I am glad to se you posting a bit more about your condition.

Tim

Greetings all. I need to share my story finally with some people who hopefully will understand. I have no one who gets what I'm going thru.

So let me start at the beginning. 2002 I noticed my penis was bent to the left as I looked down at it and I was uncut at the time and when erect, you would know I was uncut and now the foreskin covered my penis. That's how much shorter it got. The number that does on my mental well being is a lot. When my first urologist who supposedly is very highly regarded diagnosed me with Peyronie's Disease, I got  upset and I shed a few tears. This doctor told me my reaction was not appropriate. Who the f*ck is he to tell me what to feel? I live in New York City and I spend a lot of my own money and went to about 5 different urologists looking for a shred of hope. The last doctor I saw told me about this doctor in Sao Paulo Brasil who has a new innovative surgery that corrects the curve and will restore the length. This NY doctor said that the brasilian doctor's practice is dedicated to Peyronie's Disease and recommended seeing him if I could afford it. So I made an appointment with Dr. Egydio and went down for the surgery. I've been in the hospital 2 times prior to my brasilian experience and I have to say that this hospital was a very well run organization, it was a nice place, I think most all would be impressed by the level of professionalism shown by Dr. Egydio and his staff. Now I'm sure you want to know how things turned out for me. Well... the curvature was corrected, my penis still  curves a bit, but I can live with that. The bad part is that I didn't get my length back. So I am living with a penis that is about 1 to 2 inches shorter than it was for the first 44 years of my life. I'm having a hard time adjusting to this. It's made sex something I'm not really that interested in. I have a partner, actually someone I met while in Brasil, and he gets frustrated because my sex drive is so low. I feel ashamed. Back to Dr. Egydio. He was trained in Cleveland Ohio so his medical training was here in the U.S. He was most personable. He's a really great guy who is completely dedicated to the male penis. I want to pass along this information to you so that you can work with your doctor to see if this is the right method for you. I think one of the problems in my surgery is that the day before he injects cabujet (not sure if I spelled that right, but it's the stuff you inject into your penis to get an erection) and takes measurements for the surgery. For me, that stuff doesn't make my penis erect. I didn't think of it at the time, but hindsight is 20/20. Had I taken Cialis or Viagra and think the measurements would have been different and possibly my surgery would have been more successful.

When I have spoken to my friends about my situation, they don't understand what I'm going thru. I think back to what I used to have and look at what I have now and it gets me sad and uninterested in sex.

To back up a moment: the New York doctor that recommended Dr. Egydio is Dr. Jacob Hyman and this  brasilian doctor also worked very closely with Dr. Whitehead in NYC. I do not think Dr. Whitehead is practticing medicine due to medical reasons. I also know that Dr. Egydio has travelled extensively teaching his method to other doctors. The name of the procedure bears his name.

I urge you to educate  yourself and I have a pdf of the procedure that he sent me personally. I hope that your doctor is open to at least discusssing this with and together the two of you can make a decision that is best for you.

I also know that there are testomonials from other patients who had better luck than I did.

Thanks for listening.
Jake

nycjake:

Sorry to hear that you failed to get back your lost dimensions. But, from what has been posted here on the forum, patients do not always get them back.

The injection you mentioned is called Caverject. It can be a mix of up to three medicines which is supposed to induce an erection. They do not always work for all guys. I had several of them during a bout with Peyronies Disease, and each one gave me more Peyronies Disease symptoms. In addition, I had 12 Verapamil injections which gave me more Peyronies Disease nodules. So, I do not recommend any invasive injection of one's penis.

Anyway, if there is any anything we on the forum can do to help, feel free to let us know. Thanks for sharing your experience in surgery so that this information will be available to any and all who wish to pursue a course of surgery for Peyronies Disease correction.

Best to you, Old Man

Dear Jake

It may be that something can happen to make you better yet. Perhaps the VED and time plus Pentox, arginine and cialis or viagra could help you medically.

Certainly, the improvement is something to be thankful for. Some men never regain a serviceable erection and others never even get sort of straight. Paying attention to your heart and your head will probably lead to a better you than more medicine or surgery. Take care.

Tim

Jake, you didn't include the pdf.

Can I attach a pdf file to a reply?

If you instruct me, I'll definitely do it.

Thanks for all the support. I'm amazed by it. Finally people who understand!!!

Jake

This is an add on to my comment in Traction. When I came across the photo of my pre-peyronie's erection it set me back mentally. I guess that over the last year I've gotten used to my new penis and maybe the improvements weren't as significant as I once thought. I'm torn between destroying the picture and keeping it as a memento of past glory.

dahc:

My suggestion is this: don't destroy the photo. Keep it as a momento of past pleasures, but also use it for incentive to work harder to regain what you have lost. Diligent use of a VED and/or traction can and will produce results with straightening and restoration of dimensions.

However, there are some cases that do not return to their original dimensions, so be aware that this could happen also. IOW, keep an open mind, expect that you can get results and go forth from there. I have been around the horn with this mess and I know the frustration that you feel now. So, hang in there and keep the faith.

Old Man

dahc
Last Christmas wife and I found a video of ourselves before Peronies. Over the years I accepted the loss and did not realize how much I lost.
Keep the pictures. That is part of whom your are.
My wife reminds me on occasions that "I did not marry you for your penis". With that attitude we have developed a closer relationship. Size only matters in our minds. Lost about 1.25". Gained a lot of love.
Jackp

As the years roll by, sometime the penis hangs shorter and the boobs hang longer.  Just part of life :)

Quote from: jackp on February 21, 2008, 08:51:09 PM
dahc
Size only matters in our minds. Lost about 1.25". Gained a lot of love.
Jackp

    That, my friend, along with the rest of your post is a quote of the year. Posts in the Womens thread show that mens worry about size is essentially pointless from their viewpoint. The womens thread should be required reading for newcomers and oldcomers alike. Thanks for a sentence that makes the seemingly complex size issue rather simple. Kudos!

       I'm 37, recently divorced and also recently diagnosed with Peyronie's. I have seen many pictures on the web and I'm not that bad in comparison, I have about a 15 degree bend to the left about 3" down from the tip of my penis and the remaining 3" or so seem thinner, like the growth is wrapped around it a bit. It's really not that bad in comparison, I can still have sex and I have very little pain, but, of course, to me, psychologically, it's vastly different form the nicely symmetric and straight penis that I use to have.
       I have always suffered from depression to varying degrees and problems with my self esteem. I'm 5'10" and 200lbs, but I'd like to be about 30 lbs. lighter and I'm not bad looking, but I have just always had self-esteem issues. Now, after recently divorcing and confronting the task of meeting someone new, I have this deformity to contend with. And even though, like I've said, it's not that bad, it is just yet another brick in the wall so to speak.
     My depression and personality make me very reclusive and I do not deal well with people. Given my current circumstances, I now have to deal with finding a woman to be with. I can be alone, I have been often in the past, but I do not wish to be, but because of my previous problems with self-esteem I now have this additional problem to deal with and I'm just not sure how a woman will perceive me now.
     I have seen several women on this forum supporting their husband or long-term relationship and I understand that just fine. My problem is how is a NEW person in my life, one with no commitment, one that does not truly know me yet, one that isn't yet vested in us, is going to take this deformity, however small in comparison to others that have it. I'm not talking about someone I meet at a bar or anything like that, I mean someone that I date for a bit and then comes the time that we're ready for the physical part of our relationship. I'm genuinely concerned that she will react negatively to the shape of my penis. Even if it's not an outward reaction that I'll notice right away, I'm convinced that there will be a negative reaction.
     I've only had this thing for about a year, I guess that I'll eventually get used to it, but I'm just concerned how NEW women in my life will react and how this ailment just pushes me further in to my hole.
     The urologist I saw confirmed it was Peyronie's but he also admitted to knowing nothing about it. I'm in Louisville, KY and as far as I can tell there is no doctor near me that specializes or has much experience with it. I'm going to see someone in Indianapolis next month, but from what I've read, especially since I don't have that severe a case, he'll probably just tell me there isn't much I can do. Why can't they just go in and cut away the bad tissue while leaving the good tissue? I guess that's why I'm not a doctor.
     I have read a bit on the web and started taking some vitamins/supplements. I'm currently taking the following:
          Vitamin E – 2 x 400mg
          Vitamin B6 - 2 x 100mg
          Acetyl-L Carnitine -  2 x 750mg
     And yes, I know I'm just whining and that many others have it worse than me, but it all depends on our own personal perception I guess.

Hang in there Aldar.

I have had my share of anxiety over the years about how I look. I met one woman in 1986 who seemed disappointed in my penis. Other than that, I am happy to report that what women liked about me was my ability to love them well, not only  how I screw. And how one screws, is not dependent on having a perfect shape. So... well, things work out when you work on them.

Tim

Just a brief note to those - especially the young men who come here who are hurting so much - about how we can go on to have a happy life, including sex life.

I just got married yesterday. I had Peyronie's Disease when I met her (and yes I worried about it - a LOT - before we first made love), and still have it. I am very grateful that I am mature enough to feel good about myself even when I don't feel that good about my penis. and although you will hear a lot here about "there is more to you than your penis" etc., the fact is that even without a perfect penis one can still be a good lover and, yes, even fall in love and get married.

So to you guys who are feeling bad about your prospects, hang in there. Life can turn a corner and get better (even when you penis turns a corner and decides to stay around the corner!).

Tim

Tim:

Congratulaltions on your marriage!!!! Hope that you and yours have a very long and happy life together, notwithstanding the Peyronies Disease.

Old Man

Quote from: Tim468 on May 25, 2008, 02:15:07 PM

I just got married yesterday. I had Peyronie's Disease when I met her (and yes I worried about it - a LOT - before we first made love), and still have it. I am very grateful that I am mature enough to feel good about myself even when I don't feel that good about my penis. and although you will hear a lot here about "there is more to you than your penis" etc., the fact is that even without a perfect penis one can still be a good lover and, yes, even fall in love and get married.

So to you guys who are feeling bad about your prospects, hang in there. Life can turn a corner and get better (even when you penis turns a corner and decides to stay around the corner!).

Tim

Congrats to the bride and groom.. ;D

crank

 :D Tim!  I just saw the great news!  Congratulations to you both!   :D

Now, if you answer any of these emails within the next week, I'll know that you're cheating on your honeymoon! :P Get away from that computer and back to that great wife of yours! :D ;) ;D

Hey Steve..

My unit turned North this year about like yours at age 72..I've been on here for 3 days in the newly diagnosed forum getting info..

The shock caused me to break out in Shingles 2 weeks ago..I see my gerontolgist in 10 days on this and other matters..He's my wife's Dr. too (51 years married)..I don't expect him to suggest treatment since we can still manage sex, but we will see..

I'm not optimistic at this point on remedies..considering VED and started Vit E,ALC,and Co-Q-10 last week..

If you have any newbie advice for me, please post...You're experienced.. 8)

Thanks,

crank

Thanks for the comments guys. Crank, you're just a little nipper compared to Old Man. I think that the VED and some of the supplements is a great place to start.

Tim

Tim:

Thanks for the vote of confidence! I see that you did not take Steve's advice and stay off the forum for a week or so!! Just kidding of course.

Old Man

My honeymoon starts in about 24 hours. I will be away for a good two weeks!

Tim

Crank:

Yes, Tim is right. You should start some sort of "treatment" immediately. A lot of guys, myself included, have found that the VED proves to be a good and viable treatment for Peyronies Disease. If started early on after you are diagnosed with Peyronies Disease, the VED can and will give good results.

It has been determined through much trial and error that the three cylinder VED does the better job of helping with Peyronies Disease symptoms. If you would do some research on the VED topic of the Child Boards section of the forum, you will find many posts about the VED and its usage.

Should you have questions about the VED, just feel free to ask and you will receive many answers. Hope you can get rid of the shingles soon as they can be very devastating to one's life style.

Old Man

Tim:

Way to go man! TWO WEEKS may just be enough time.

Old Man

Quote from: Tim468 on May 26, 2008, 09:28:47 AM
Thanks for the comments guys. Crank, you're just a little nipper compared to Old Man. I think that the VED and some of the supplements is a great place to start.

Tim

First time I've been a little nipper on a forum.. ;D

Thanks for the replies guys, and the encouragement..I'll be on here daily studying the VED thing and will ask for advice on it if I can psych myself up for the 26 week program,a 3 cylinder unit,manual pump,and lots of grease.. ;D

Tim...have a great time on the honeymoon..cool.. 8)

crank..

Crank:

You are not very much a "nipper" or young whipper snapper as we say down South!! I will be 79 this summer and that is not much older than you. Most of the guys do know me as Old Man. I started using that name on another forum and a lot of the guys moved over to this one, so I just stuck with it so we all would know one another.

We will be glad to help you getting a good source and a good price on the three cylinder VED if and when you decide to go that route. We have found a site that sells a medical quality unit for about 1/2 what it sells for from the manufacturer.

So, we are here to help, so let us know.

Old Man

Quote from: Old Man on May 26, 2008, 05:14:05 PM
Crank:

You are not very much a "nipper" or young whipper snapper as we say down South!! I will be 79 this summer and that is not much older than you. Most of the guys do know me as Old Man. I started using that name on another forum and a lot of the guys moved over to this one, so I just stuck with it so we all would know one another.

We will be glad to help you getting a good source and a good price on the three cylinder VED if and when you decide to go that route. We have found a site that sells a medical quality unit for about 1/2 what it sells for from the manufacturer.

So, we are here to help, so let us know.

Old Man

I agree that we are in the same ball park...I have read a ton of your posts and know that you are one of the heavy hitters on this forum...work out 3 times a week at the YMCA and enjoy a romp in the bedroom...plus, you know a lot about Peyronies Disease...I appreciate your posts and plan to make some calls to the companies provided in the links this week...to get more info on the VED subject...

Many thanks,

crank

P.S. I train at a YMCA too, and post on a couple of fitness forums for beginners... ;D

Crank
After almost 15 years with Peronies and the side effects I did not find this board until last October after a failed implant surgery.
I have a prescription VED that was fit in the doctors office October 06 after heart stents and postponed implant surgery. I did not get good advice or did not listen and put too much pressure to quickly and caused an abrasion that took weeks to heal.
Old Man told me how to properly use the VED and now I do it every day for corporal fibrosis. I have gained back 1/4 to 1/2 inches of size lost to Peronies.
Old Man knows how to use the VED and at 65 I hope to be using my equipment to 79 and beyond.
Loss of 1.25 inches to Peronies was psychologically a downer but a supportive wife made the world of difference. With her support it has not been the problem it could have been psychologically. The ED from the Venous Leakage also has been a major problem. Without the VED I could not function.
Good Luck. There is much help here.
Jackp

Hey Jackp..

Thanks man for the reply..Sounds like you have had a rough time with it...now better..I agree that this forum takes some pressure off..it has me...I feel like I'm at least fighting this deal by getting info and sharing the condition with peers who have it too..It is one hell of a shock when the old reliable tool goes crazy on you..I've spent 5 hours reading and learned some things..plan to keep it up..

Good luck,

crank

P.S. I got a funny email yesterday attributed to Willie Nelson,the singer,on his 75th birthday...He said,"I have outlived my dick."

crank:

You have not outlived your dick, just got a setback. It can and will be repaired if you seek help early like you are doing. Just get something started as soon as possible.

Sometimes, all the docs do not know what to do with Peyronies Disease. It seems to have a mind of it's own! So keep up what you doing and get busy with "repair" work.

Old Man

You gotta love Willie Nelson, but you also wonder what he and his dick might be up to if he didn't toke weed every day too.

OTOH, I'm not sure if I believe him. It's a great line, but that doesn't mean it's true!

Tim

The following study has just been posted:

The Chronology of Depression and Distress in Men with Peyronie's Disease - Abstract (http://www.urotoday.com/3351/browse_categories/peyronies_disease/the_chronology_of_depression_and_distress_in_men_with_peyronies_disease__abstract.html)

Quote from: UroTodayUsing validated instruments, we have demonstrated that 48% of men with Peyronies Disease have clinically meaningful depression that would warrant medical evaluation. This high level of depression stayed consistent across time since diagnosis. These data suggest that most men do not psychologically adjust to their diagnosis of Peyronies Disease and all men with Peyronies Disease should be considered appropriate mental health screening.

Hopefully this will not mean that we will simply be labeled as a "mental health issue" and dumped off on the psychologists so that the uros don't have to deal with us anymore.  - George

yeah it seems a lot of doctors like to play the "mental issue" card once too many times.

Impact of Peyronie's Disease on Sexual and Psychosocial Functioning: Qualitative Findings in Patients and Controls.

Rosen R, Catania J, Lue T, Althof S, Henne J, Hellstrom W, Levine L.
New England Research Institutes, Watertown, MA, USA.

Introduction. There are no validated scales for assessing the psychosocial impact of Peyronie's disease (Peyronies Disease), which affects approximately 5-10% of men over age 50. Aim. To develop a psychometrically valid outcome measure for assessing psychosocial and sexual consequences of Peyronies Disease. To conduct a qualitative study of men with Peyronies Disease and age-matched controls, and design a new patient-reported outcome measure of Peyronies Disease. Methods. An expert advisory panel identified relevant topics and conceptual areas to be addressed based on clinical experience and literature reviews. A conceptual model was developed to serve as a discussion guide for qualitative interviews with geographically and ethnically diverse Peyronies Disease subjects and controls. Interviews were conducted in a focus-group format by a trained interviewer and were recorded and transcribed for qualitative analysis according to grounded theory concepts. Main Outcome Measure. Focus-group interviews. Results. Focus-group interviews were conducted with 64 men (28 Peyronies Disease patients, 36 controls) in 13 separate focus groups over a 3-month period. Blinded analysis of the interview transcripts identified four core domains: (i) physical appearance and self-image; (ii) sexual function and performance; (iii) Peyronies Disease-related pain and discomfort; and (iv) social stigmatization and isolation. Based on feedback from participants and experts, a new outcome questionnaire was developed to assess core domain responses in a structured, self-report format. Conclusions. This qualitative study helped to refine and broaden the focus of the conceptual model for further assessment. It also confirmed that Peyronies Disease has a major impact on sexual and psychological function in these patients.

thats not very pleasing. looking forward to the day where more options are available.

Hitman:

We all are looking forward to the day when there are more aggressive therapies/treatments for Peyronies Disease. In the meantime, we just deal with our problems and at least try something rather than just waiting for a "cure".

This disorder has been around in the known world since the 1700s and so far there are no definitive treatment/cures found. So, we accept the fact we have it and get on with our lives by trying some form of therapy.

I know there are many men suffering from this disorder that just are afraid to make public their problem. We should band together and do our best to help others cope with this mess.

Old Man

I'm not depressed by any means oldman. just saying that someone else might not view this study in a positive manner and maybe drive himself into more misery.

Hitman:

You are 110% right! I am sorry that my words did not come out like what I meant them to say. What I was trying to say is that no one should just accept the fact that they have Peyronies Disease and not try to do something about it. This is a very devastating disease and causes much havoc in men's lives.

I realize that all men do not take the same position that some of us do about it and need more help than others. So, bottom line, we are all in this together and should be helpful to each other. Thanks for reminding me.

Regards, Old Man

Funny, I do not see the study in a positive or a negative light - it's just a description of something we all already know - men with Peyronie's Disease suffer emotionally.

The value of this study is that urologists (who as we have all seen here, are not exquisitly tuned into feelings and emotions) might start to attend to this important aspect of caring for the man with Peyronies (for whom they might be able to do something), even when they cannot do something for the man's penis.

Tim

i've a question i'm 25 i'm surrounded by good friends and family yet i haven't told a soul about my condition.. i don't want to give away any weakness !!. i don't want it to get out in this small town i live in..! i'm afraid of it biting me in the ass!! i've been tempted to tell my ex what i have but that definitely would be bad news!! i'm not a bad looking chap and i've had some nice girls show interest ... i am single but i wont get into anything with anyone of them..!
funny thing is the more i've shown no interest the more the woman want me!!ha ha ha typical woman wanting what they can't get...!! (joke ladies)
but my question is should i be open and tell all my friends and family what i have? i have fallen out with my family alot in the past year for various things .. but i know peyronies onset was tough for me and because i couldnt talk about it they dont understand...!!

1)  No, I wouldn't go around telling everybody.

2)  I WOULD try to find a way to bring my immediate family up to date on it.  One possible way is to tell them that you have a difficult medical problem and that you would like them to come with you to see the doctor so that in case they have any questions you can't answer, they can ask the doctor.  Then make an appointment for a consultation with the urologist and take them with you.  You could check with the urologist ahead of time to make sure he or she is willing to help in this way.  Again, I wouldn't take the whole tribe along, but parents or adult siblings would be possibilities.  The idea is not to reveal this to a lot of people, but to bring on board one or two supportive family members.   This can make all the difference in the world in your anxiety level.  Many uros are excellent in handling these types of  situations.  I few aren't, unfortunately.  Hopefully yours is.  Others may have even better suggestions.  I wish you the best!  - George

Guys,
I have to admit that if I had contracted this disease at the age of 25, my parents would probably be the last ones I would want to share this with. And typically any doctor during a visit is going to have you drop your pants and examine you there in the office. My wife has been with me on every visit and has been my biggest supporter during this process.

Once I was diagnosed I did share this information with my sons and very close firends. I felt it important for them to at least know about this disease for their own awareness.

So I guess I'm suggesting you share this with those you trust, and not with someone who will run up and downt the streets in your town telling everyone else. Particularly if you don't want others to know. I would encourage you to take someone along to your uro visit(s) if you are comfortable with it. I do find that 2 sets of ears are better than one. Sometimes it is hard to pick everything the doc says, and my wife is better at that then I am. And she helps remind me of questions I want to ask. And the most important aspect, is having someone to discuss this with.

Again, it needs to be someone you trust. You will find posts here about the emotional and psychological impact of this disease.

Now.... on a side note. I'm starting to open up with more and more people people about this. I'm past the embarrasment, and the anger. I feel more people need to know about this, that more men have this than we know, and that we need research and better treatment strategies. This will only come with those of us who suffer from this to speak out, and let the world know this is a bigger problem than society realizes. OK, will step off soap box now and exit the stage.

I have no intention of telling my family about the disease, assuming I'm diagnosed with it. I have found that pelvic floor exercises seem to help, as it looks like my pelvic floor muscles are very tight. I have lost 35lbs of body-weight and I'm going back to my endocronologist. I'm not sure how I will be able to hide the VED from the rest of me family.

hitman:

Make time for your VED exercise therapy to be around your normal bath time each day if time permits. If you have a bathroom in your bedroom area use it for all your therapy. If you don't, just take the VED into any bathroom you use, do your thing there, and just don't worry too much about anybody in your family asking questions. If they do, just take them into confidence and relate the whole story. This may help someone else with Peyronies Disease that does not know how to handle the shock of having something wrong with your most prized possession, your body.

I agree with both of the previous posts. First, you do not really want the "whole world" to know you have this problem. But, you should confide in at least your wife and adult sons if you have any. I am now not sure that Peyronies Disease may not "run" in a family genes. Several of my uncles and cousins had Peyronies Disease over the years when I was younger, so I knew all about when I first got it. It was not so widely known then, but my first cousin doctor knew about it.

Old Man

Hi,
i've been using the ved, taking pills and many more without any real improvement, excpet harder when on ved. I'm am so tired of this condition. I've got a bad shortening and bending... I feel like hanging myself most of the time. I can't accept this disease (2 years now). Do you feel the same ?

Ben:

Sorry to hear that you have this terrible mess called Peyronies Disease. There a lot of guys on this forum that share the same feelings you have at the moment. You are wondering "why me" and why do I have to put up with this crazy mess.

As I said, you are not alone in this problem. Most every guy on this forum has it now or has had it in the past and we know what it is like. We are all in the same "boat". Now, I have said that to say that you are in the right place to share your feelings and ask for help. My history goes way back for about 55 years now with this disorder. It is posted somewhere in the Child Board or History topic so I won't repeat it here, but you should read all our histories to gain much knowledge of Peyronies Disease.

In my past history with Peyronies Disease, it has come and gone several times only to rear its ugly head again and again. I have dealt with it for oh so many years and wanted to just drop off the face of the earth because of it, but I worked through it and now I am in an arrested state with it.

So, what I am saying is that you have to deal with it. Keep trying things in order to find something that works for you. This forum is filled up with many areas of exercises, oral therapy and even the VED therapy that has helped many.

Ask any and all questions that come to mind and we are here to help. If we don't know the answer, someone will do their best to find it for you. So feel free to indulge us with your questins.

Regards, Old Man

Dear Ben,

Those of us here really feel for you. As a man who has had Peyronie's Disease since I was 21 and am now 53, I can tell you this - though it may not get better, you can get better.

I hope that you can get help for your feelings of despair and suicidal thoughts. That deep dark place in our souls we go when things are feeling bad can be scary and apparently endless. But such depression is not inevitable! If you are truly feeling like hurting yourself, I hope that you will get some help for that - and to hell with VED's or pentox.

They say that pain is inevitable, but that suffering is optional. I hope that you can find a way to move ahead with hope and optimism. Feel free to PM me any time.

Tim

I feel this way very often too, Ben.  To be honest, I'm sure now that I was unhappy before Peyronie's and I had suicidal thoughts before, although I doubt many people who know me would predict that. Suicide has been on my mind a lot more since this happened. I fell in love with a girl who accepted me for this condition. I felt like she was an angel who would save me from this doom of suicide or meaningless life, and now that she's left me I often feel that my one shot is ruined and no one else will love me, at least no one I will also love. I never try to get with girls, and sometimes in public I can't believe this restriction no one else knows about is in my life. Like it is a silly bad dream of some horrific, ridiculous disease that doesn't even exist and when I wake up everything will be as it was before.

But the truth is that you are 27, and I am 22, and we both have a lot of life left, which can be a scary thing, but maybe not. This new drug Xiaflex has produced some very promising results for people with Dupuytren's already.  Here is a video of a man who, for all I know, could be the most famous person with Dupuytren's (so it's not just the best case of the study they picked out for the TV piece).

http://www.theindychannel.com/health/16902359/detail.html

He seems very pleased with his initial results, and although it's not a sure bet, I think Xiaflex is a real thing with real potential that we can put hope in for us Peyronie's sufferers.  Just today Auxilium released their second quarter financial report, and cnnmoney reports (search google news)

--  The Company received feedback from the U.S. Food and Drug
    Administration (FDA) on the phase IIb trial protocol for XIAFLEX in
    Peyronie's disease and expects to dose the first patient in the third
    quarter of 2008.

I personally believe this drug has real possibility to make an impact, and a grizzly, horrific end to life would be a sad mistake when there is real hope that perhaps in two years or so we could have the rest of our lives back, several decades of a high quality of life.

AHem! ::koff koff::

I am 53 and I want "several decades of a high quality of life" too!!!

You little nippers should expect MANY decades of a high quality of life.

Oh, one other thing - let me clarify. I have Peyronie's disease, it is not cured, I am not hardly any better, and I already have a high quality of life. I wouldn't mind if it was all the more wonderful though.

Tim

Jackisback:

I forgot to mention (until Tim stated his age) that next month 79 years will have gone under the bridge of my life. My first encounter with Peyronies Disease was at the age of 24 so that makes 55 years of it coming and going like a swinging door!

So as I posted to you on the VED topic, just settle down, learn to cope with this mess and you will survive it, believe me, I know first hand! Just keep looking for some therapy/treatment that works for you. Only a very few guys fail to realize some benefit from their efforts.

Old Man

Many will know the name Annette Funicello (sp).  She is a celebrity that suffers from MS.  Recently I heard her quoted by a man with significant life threatening, devastating issues in his life.

The Quote: Life does not have to be perfect to be wonderful!

It has caused me to pause and reflect.  All lives consist of blessings or fortunate circumstances mixed with trials and problems.  We choose which aspects of our lives we dwell upon.  Like a small object held close to the face, we can block a huge positive world from view by dwelling on what is wrong.

I am not dismissing the pain associated with real problems and I am not trying to be trite, but maybe we need a topic on what is wonderful about our lives in spite of Peyronies Disease.  Though I have written much about Peyronies Disease, I could write much more about what is wonderful.  I could also write about trials far greater than Peyronies Disease.  I get to choose what to dwell on.

Hawk

   Post of the year, Hawkster... post of the year.

Hawk:

Amen to what Angus said! Glad to see you posting again. Trust that things are looking up better for you.

Old Man

Good point Hawk,

As they say, pain is inevitable, suffering is optional. Better yet to see what can be wonderful!

Tim

Alcohen,

Though I have much of my own to think about I think about a few of your posts from time to time.  There is a missing element in the discussion that resulted after a few of your comments.  It is clear that you are suffering and that much of the suffering, in fact the majority of the suffering is emotional and psychological.  This is very understandable.  My concern is that it is the one area that you can do something about and I have not seen anything to suggest it is being addressed.

In one post you said:

QuoteMy girlfriend offered to try her mouth the other night and I had to look down just to make sure that it was making contact with my penis in any way.  I did not feel anything.  I just politely asked her to stop and slinked away depressed.  This condition is unbelievably horrible.

and in another:

QuoteTo know that when I look at myself in the mirror I will see something disgusting.  And to know that if I tried to, I WOULD NOT BE ABLE TO HAVE SEX.  It is not possible for me to give my girlfriend, who is a virgin, that experience.  I can't even masturbate anymore.  Everything in my life has been completely stripped away.

Rather that me typing a book, I will simply suggest that Peyronies Disease can destroy lives in much the same way facial disfigurement can destroy lives.  Often it is more the perception and self-loathing that destroys relationships rather than the lack of an erect penis.  Like disfigurement, it destroys some lives while others prosper in spite of the challenge.

If you self-protection causes you to tense a muscle that results in pain, you would learn to stop.   By the same token, if your self-protection causes you to withdraw from intimacy then you should also learn to stop.  This is not a matter of shear will.  It is a matter of learning and facing many of the fears you withdraw from.  It may or may not require some expert professional help.  The good news is that it is universally understood to be the most damaging part of Peyronies Disease and it is the part that has a known fix.

I would suggest that you read this thread from start to finish or at least "Highlights" in the "Newly Diagnosed" "Child Board"

I would also hope that those that have been successful, or those that are making progress with such issues will jump in with input.

Generally, women and men see these issues very differently and men can learn from their input since in reality it is our perceived lack of acceptability to females that causes much of the pain and withdraw.  Our fears become self-fulfilled prophesy.  Maybe some of the women that read the main forum will comment.

Hawk

Thank you for the message Hawk.  It is just that EVERYTHING involved with that area hurts.  It is impossible to stop thinking about that area all the time because I cannot walk without aggravating it.  If I ever bend down to pick anything up I feel pain on my glans.  I feel pain and discomfort on the sides of my penis whenever I walk.  I already can only wear my boxers turned around backwards the ridges where I normally would pee through on the front really hurt when I walk.  Still, my pants irritate me if I move at any normal walking speed.  When hands touch my penis it is just torture.  Some parts of it feel numb while others hurt.  Sometimes though, when I have a great night out my girlfriend and she is trying to pleasure me I get caught up in the moment.  My penis is nowhere near hard enough to actually penetrate but I have my eyes closed and she is very gently masterbating me and I am able to ignore the discomfort and pain.  But then, all of a sudden the discomfort and pain returns.  And then the discomfort grows. 

I then decide to look down at my penis and of course it is almost completely soft.  Even though I am incredibly attracted to the girl that I am in love with and am in the heat of the moment, the pain will start and my penis goes flacid.  I am above her/on top of her and at this point any amount of friction does nothing...whether it is me brushing against her stomach or wherever.  Unfortunately the root of my problems sexually is not psychological but the psychological aspect is affecting me in all other areas of my life.  To know that I will at best experience pain and a half-flacid penis after a great night with my girlfriend is just destroying me.  I see others happy and I am jealous.  That is ridiculous.  I have a great girlfriend that I love but I feel like I cannot show it.  When I look her or think about her I still get excited but then I FEEL PAIN!  And my penis does not get hard.  I can definitely feel something blocking blood flow.  I can feel mounds in there.  I can feel discomfort when walking.  I can feel discomfort when sitting as it has shrunk and it more recessed than normal and hurts when it lays on my chair instead of when it used to dangle down between my legs. 

Somebody here spoke of Anhedonia.  I wish.  Unfortunately I don't not have pleasure.  I just have lots of pain that impedes the pleasure and stops it from ever happening.  Right at the end of my wet dreams I have pleasure and then I have to clean myself up and wash my sheets.  I am not able to have pleasure with my girlfriend BECAUSE of my pain.  Then from that I am not able to enjoy other areas of my life.  I used to like to run and lift weights at the gym.  Run?  Haha, my penis hurts like hell when I try to do that.  When it hurts the most I look at it, and yep, looks like an hourglass.  I am assuming scarring is there that is blooking my shaft from expanding at that point.  Trental has done nothing for the two months I have been taking it. 

:(  Sorry for the negative outlook.  I am just in too much pain in every facet of my life.  Four months ago I was the happiest person any of you could ever possibly have met.  Then, one night where I was masterbated twice later and everything falls to pieces.  I do not understand.  I try so hard but everything just feels impossible.  Where I could once see my future it is now blank.  I cannot see past this period in my life and to even think about having to deal with this issue for the rest of my entire life makes me shudder.  I just cannot do that. 

I don't understand what I did wrong to deserve this.  As a child I was that fat kid and was always made fun of.  That hurt me psychologically until the end of high school.  Even though I was no longer that kid I still hurt and felt like nobody would ever want to share their life with me because I had no confidence at all.  There were several girls at this point in time that realized they could take advantage of my niceness and would use me.  I was always depressed and saw help for it.  In college I ended up dating a girl who cheated on me with her ex-boyfriend.  She then went back to him.  Not having any experience at all with dating in general hurt me in that relationship and the after effects lingered for a couple years as my confidence was zero again.  I decided to turn my life around though, got over all that, and began working out.  I felt confident about myself, and noticed that girls were noticing me.  I found the one that I connected with more than anything and pursued her.  She became my girlfriend and I could not have been happier. 

Now this. 

It just does not make any sense at all.  I tried so hard to make both me and my parents happy who love me more than anything and apparently by trying I have now hit what appears to be an impassable wall.  I am so worried about ruining my girlfriend's life too.  I am so confused, upset, and angry that this has happened to me!  None of my friends care because they don't really believe me.  They just can't see themselves ever being in a position that I am in and don't believe is possible.  I never would have either.  Because of that though, there is no sympathy shown for me.  They assume that when I don't want to go out with them somewhere because my penis hurts too bad to move that night that I am only doing it because I am lazy.

Whatever.

:( 

alcohen,
I'll echo Tim's thought. I believe everything you say. But it doens't make sense for you to have so much pain, yet your are able to ahve a wet dream. Usually this involves getting adn erection and ejaculating. It seems the pain would cause you to wake up first. It just seems odd that you can get erect and ejaculate while sleeping, yet so much pain to prevent an erection while awake.

It is certainly possible to have pain when awake, but no pain when asleep.  I have experienced that.  I believe it to be based on the effect of melatonin levels, but that is just conjecture.  In any case, I have experienced times with rampant inflammation type pain during the day only to have the pain level subside to nothing at night.  That IS certainly believable as far as I am concerned.  I do find it strange that touch results in pain and yet he has seemingly indicated before that he is experiencing a lack of feeling.  That would seem odd.  Either there is feeling or there isn't.  You don't feel contact pain when the area is numb.  - George

The studies on Vitamin D continue to flow forth.  The latest finds that the same deficiency in Vitamin D that can cause autoimmune problems can also cause depression.  How very interesting!  The same anomaly that may very well be making one susceptible to Peyronie's may also be contributing to making them overly depressed about it.  Yet another reason to get plenty of Vitamin D via both the mouth and the skin!  - George

Lwillis and george, to answer your questions, I feel both numbness AND pain.  How is that possible?  Because it is on different areas of my penis.  The area that I used to feel the most sensation from which is right on the underside of my shaft towards the top is now almost entirely numb.  Both the left and ride sides of my shaft are NOT NUMB in any way and that is where I experience the majority of my pain.  Also, I have pain on the top of my penis on the glans and pain on the top part of my shaft.  None of those areas feel numb.  It is just the area that I used to have the most sensation that is numb.  That is also the area that I remember looked like it was skin healing immediately after my "incident" happened.  Make sense?  I swear I am not making anything up though I wish that I was.   

To answer the question about the wet dreams, I have woken up while I am still ejaculating each time they have happened.  In each situation, I have had only a VERY partial erection.  When trying with my girlfriend to get hard I have gotten much harder than that and that is where the pain is most prominent. 

So now hopefully my dilemmna is more understandable?  I am experiencing so many different levels of pain and strange occurences. 

Examples:
1. Penis hurts when I am walking (constant pain, I do not want to walk anywhere)
2. Penis hurts when I am standing still. ( I have found ways to stand perfectly still and cross my legs where it sometimes does not hurt)
3. Penis hurts when I am sitting in a chair.  (All the time unless I slouch severely and have my legs hanging off the chair)
4. Penis hurts when I try to go to sleep. (I am only able to sleep soundly when on my stomach.  When I try to do so there is a lot of pain from pressure on my penis.
5. Penis hurts when touched on the sides (always, but sometimes it feels warm and hot to the touch and hurts more than other times)
6. Penis has hourglass indentations (sometimes, and when this occurs my penis is in its most flacid state and also I hurt the most)
7. Area of sensation is numb (always occurs, though sometimes a little tiny bit of feeling slips through...  my guess is there is something under my skin there that is blocking or squeezing off most of the nerve endings.  or the nerve endings are destroyed..)
8. Penis is twisted and tilts to the left side at the midway point (Seems to only be prominent some mornings.  These mornings are when I wake up and am in pain)
9. Penis is so flacid that I feel like it is not even there (every couple days, mainly at night.  there is ZERO blood flow of any kind to anywhere in my penis.  upon inspection and intentional stimulation nothing occurs.  i am not stressed out when I am trying to stimulate it either!  in these situations all I can do is laugh and just think of how ridiculous this all is  like a bad nightmare)
10. Penis hurts after I pee (75% of the time.  Most of the time not all of my pee will come out when I go to the bathroom.  I shake it and make sure it is all gone and then after it is back in my pants more of it comes out.  This happens after I feel pain. 
11. Penis has double stream of pee (25% of the time.  There are two distinct streams of pee that come out of my penis.  This never happened even once in the hundreds of thousands of times I would go to the bathroom before my incident.  Now it happens a quarter of the time I pee.  One stream goes downwards, the other stream goes straight and upwards.  Perhaps my urethra is damaged?  Oh joy) 

Mix these all up and you will see what I am trying to live with.  On any random day I will experience one or all of these symptoms.  I have bad days or horrible days.  If it is a horrible day I will know it right when I wake up.  Usually these are symbolized by my penis being twisted.  On these days I don't want to do anything at all but I force myself too.  Because I know nobody would believe me if I told them exactly what was bothering me if I skipped out on doing things. 

I am at my wit's end here.  I just cannot believe that this is how the rest of my life will be.  That is a long time.  I am sorry to all of you who have lived with this and are living with it still.  Noone deserves to have to try and live like this.  This is completely ridiculous...

alcohen
I feel so sorry when I read your postings!!! It sounds really terrible!!! I suppose you have already seen lots of different doctors and urologists?!?!?!

I am not a medical doctor and I have no idea what can cause so terrible symptoms, but I have the impression that you may have (at least) two different medical conditions and not only peronies (if so). I know I'm repeating myself (I have already posted that under "open questions" but I don't know if you have read it) but have a look on www.pelvicpainhelp.com. Read about the symptoms which are described there. Maybe it it has nothing to do with your problem, but it only costs you a few minutes of time. Give it a try!

I wish you all the best and hope your situation will get better soon! I'll keep you in my prayers!!!

Hang in there Alcohen.

It sounds really rough.

If I were you, I would start to save for a trip to San Francisco to see Dr. Lue. I would write to him first and explain as well as possible with as LITTLE WHINING as possible (I say this so prominently, because you emotional pain is so big that it tends to hide the reality. That is, we periodically see young men who come here totally in a panic about something that it probably not Peyronie's. As might be expected, when they go to a urologist, they get blown off as mental cases. The problem is that folks who have HUGE sadness and anger tend to get lumped into the same category by urologists! So it is VITAL to be dispassionate in describing what is happening to you, as you were in most of your post. THEN you can say I am an emotional wreck because of this).

If you cannot see him you should consider finding an equivalent expert to see.

It would be expensive and it might take some time to arrange, but why not?

Tim

Alchoen:

There is one thing that you have not mentioned in your posts. That is, have you asked your uro on any trip to see him/her if you might have a very severe prostatitis infection. Several times in the past, my symptoms sounded similar to yours. It developed that I had an urinary tract infection along with prostate infection.

Antibiotics cleared up those symptoms, but did not, or course, help with my curves and other Peyronies Disease problems. Suggest that you try to get an answer about a possible infection problem.

Old Man

           Dear all my name is Tinaa and am not very sure if am allowed to write in this room or not but all what am thinking of is that I need your help both as couples as I do believe that once you figure out such a problem it's gonna affect both of the partners at the same time. My story is that am trying to rescue a true love that goes back to many years, and for certain reasons behind our dreams we couldn't meet for years , then now after we could find each other and we could have the chance to share our feeling that had been hidden for ages , after all of this our relationship started deteriorating suddenly with no obvious reason at least for me at the beginning.   Then after I could figure out that there was no other possibility than Peyronies Disease behind this issue I;ve tried so many ways to find the right way to get through and I felt helpless and hopeless as he kept silent all the time.  I couldn't believe that this Peyronies Disease could be behind this pain until I reached this wonderful forum, where I could feel of how much he is aching in silence long time ago. and I didn't think that this could be the problem because honestly it means nothing for me and I don't see it as a problem at all as I do love him for himself and not any other thing. Now he started to withdraw from this relationship and I don't want to lose him, he means everything to me in this life .

               The story goes back since he was a teenager after having an accident that leads later on to this bloody hill Peyronies Disease. and now he is in his 4ties .my question is what are the treatment possibilities after this log period of time and , and how can I discuss this issue with him as I've mentioned before that he is silent almost all the time, and the only thing I could get from him is that he doesn't deserve me. I know it is a very sensitive issue but I will do all my best to stand by his side and never leave him.  If he doesn't open this issue shall I take the first step and start??   Is it right to do so????? I don't want to hurt him at all , he has enough on his plate and I wish I could take all his pain.

              Please my friends tell me what to do and I will never say no . I do prefer to die rather than losing him.

God bless

Hi Tina,

Two issues pop up to mind.

First, you are in love with someone who doesn't want to talk to you - and it sounds like an old love that is renewed. But it may have some problems if he cannot talk about his feelings. So working on the "Peyronie's Disease" problem is but part of what you must deal with; I think that you may have more to talk about.

Never the less, it would be best to start somewhere and to start making an observation. Make it as NOT a judgment as possible (ie "you are talking to me less now than you did a year ago" or "I noticed that your wonderful penis is a bit more bent than it was when we were teenagers"). Then express your feelings (ie frustrated, concerned, loving - identify how YOU feel) - so tell him what you are feeling. Then tell him the thinking behind the feeling (ie "I am concerned because you seem to be in pain" or "I am frustrated because I think that communication is important but we are not communicating in a way that meets my needs", or "I think that you might worry that I would find your penis unattractive").

Then make a request - something as simple as "Would you be willing to tell me how you feel when I say this?" or "Would you be willing to tell me if I am right about this?"

It would be a start...

The other thing - please reconsider the hoping to die instead of losing him.

Tim

   Welcome to the forum. I made a post a few years ago in the "Our Stories" thread that I said a lot of things the way I see them. I'm going to copy/paste a section of what I said in that post, and I still believe it to be true regarding relationships. Peyronies involves couples; not just the man. Here is the excerpt from my post... it is addressed to men:

The facts for me are (1) There ARE things that can be done to combat Peyronies Disease and (2) The life-force of a partner must not be underestimated. Talking/dialog MUST be a part of the healing; decades of society based conditioning has groomed men to base their apparent degree of manhood on penises, when in fact this is such a small part of the total manhood picture. Do not close off and keep quiet... open up and start talking to your partner. Take action and attack Peyronies Disease with a plan and most of all, remember that you are a man and this Peyronies Disease mess is a speedbump, not a deal breaker. If you are reading this, you have found the experts forum... read, devise a plan, and know that you have total support and help here.

    I kept my Peyronies hush-hush and never, ever talked about it with the girl I was engaged to (now happily married 3 years to the most wonderful woman in the world, and yes, it's the same woman... yay!). One evening she asked me about the curve. After a moment of shocked amazement that someone would bring this up, then realizing it was because she CARED enough to bring it up, I was totally and ease; once she got me talking, she couldn't shut me up because I went on for hours about what I'd gone through trying to do something about my Peyronies. Your man is hurting inside and doesn't know what to do, and he thinks he doesn't deserve you, and he thinks he is less of a man because of Peyronies. It devastates men and they withdraw. There ARE things he can do for therapy, all outlined in the forum. It does not matter how long he's had Peyronies. Success stories from men who use the Vacuum Erection Device can be read here. A protocol on how to use it is here, as well as recommendations on the best ones to buy. There are supplements he can begin taking that help heal inflammation and promote general health. The body must be treated and the mind must be treated. When he learns of your support things will be much, much better. You must tell him what you posted below, that the Peyronies is nothing to you and that it's ok. If at all possible, see if you can get him to at least come and read some of the forum to see what we're about here. Tims suggestions on how to bring the subject up are good... use them. Let us know how it goes.

   You should bring the subject up. If he shuts off and walks away, no, do not nag, badger or push the issue because he is not ready. A hard line approach at this time may drive him away. All you can do is say what you need to say in a calm way and hope he responds. He has to make a choice: listen to you and recognize your support for him, or turn and walk away. I hope he listens to you, but he may shut you out. The choice he makes after you talk to him is his alone.
   Some time back a lady posted here who's husband refused to talk about his Peyronies. As I recall she printed pages from this forum and layed them on his desk in hopes that he would read. This is an alternative; talking is the best and first thing to do. No one can say how he'll react but I do hope that his reaction is positive and that he does not shut you out further. He should not use shyness as something that exempts him from talking to you. Shyness prevents a person from talking openly with a stranger or new acquaintance; you are neither of those and have known him for years, so shyness should be no excuse for shutting you out.
   There is a chance that he will shut you out and not talk. But then, there is the chance that he will be receptive to you and your talks will lead to positive action to help his Peyronies. If he will not talk at first at least suggest that he read the "highlights" of the forum commonly called the Child Boards as he could get a quick overview of what content the board has. Here is a direct link:

https://www.peyroniesforum.net/index.php/board,18.0.html

tinaa:

I support Angus's post below 100%. My Peyronies Disease started as a result of a bad sexual encounter when I was 24 years old. In those days, 1950s, there were no known "treatments/cures" for Peyronies Disease. In fact, there was very little known by uros and PCPs either about what to do with the disease.

Many treatments were tried with little or no success. However, I overcame the trauma of losing the benefit of one's most prized bodily possession. Just kept on going and trying different things. Won't go into my entire history, but today I am virtually free of any Peyronies Disease symptoms.

My history is posted elsewhere on many topics throughout the forum. If at all possible, try to get your man to read posts about all the guys that have listed their histories. There are many and varied things that have been tried, some successful and others not, but at least they tried to get rid of this horrible mess.

I am now over 79 years old and have dealt with this problem since the age of 24. So you see, it can be overcome if one just hangs in there and keeps a positive attitude about it all. We all can feel for you and your man because we have been there and done that with Peyronies Disease. Let know if there is any way we can help to get him to come on the forum and learn what can be done to help with his problem.

Sincerely, Old Man

tinaa:

WOW, what a position to be in at a time like you guys are having at the moment. I am reminded about the phrase that is used in the world of alcoholism. An alcoholic has to admit that he needs help before he is willing to submit to treatment much less help from anyone.

It is the same way with Peyronies Disease. He has to admit to himself that he has a major problem and needs help. He must realize that he and he alone has to come to grips with the fact that his manhood is at stake. If he does not try to get some help, he could be permanently changed to the point there would be no help for him. I know of at lease one doctor friend of mine who waited too long to get help and was totally unable to even urinate unless he used an enclosed type urinal.

As we all know, surgery is considered the last resort when all else has failed. Surgery has its place in Peyronies Disease treatment and/or therapy, but we reserve that for only the worst case scenarios. We have success stories on this forum after surgery, so you can see that it does help too.

Suggest that you print out some of the posts from the forum about success stories from the various threads and what the guys did to achieve their success. Maybe, just maybe, if you left them around the house where he could pick up on them and read about our stories it might help.

Keep us up to date on any progress, or lack thereof, and maybe someone can come up with some assistance for you guys,.

Old Man

     There was a chance that would happen. The man feels terrible, has taken a hit with Peyronies disease but unfortunately has chosen to be miserable over this... or something else. Think about any other issues that might be going on that aren't Peyronies related that might be influencing his behavior and shutting you out and consider addressing those, if there are any.
     Every relationship has speed bumps and knocks along the way, and Peyronies for him, stacked on top of possible other issues, may be the thing that got him down so low that he's closed off now. You're not only dealing with Peyronies, you're dealing with a huge issue: communication. He's got to realize some time that this is a couples thing in this case, not an individuals thing.
     Go with Old Mans suggestion and print a few success posts and leave them around where he can discover them on his own and possibly read while in his space. Consider getting out of the house as a couple and do some things that you enjoy as a couple... movies, go dancing, sight seeing, whatever. This would place you two in a lighter, happier setting where communication may flow and not be forced by bringing up a subject that he is purposefully ignoring at this time (Peyronies). Communication of a lighter nature should come first in an easy, no-stress situation. Once this gets established and both of you are comfortable and words are flowing, then subjects of a more serious nature would be less threatening to both of you. Get him out and have some fun and put Peyronies as a discussion topic aside at first... let good times flow and laughter abound by choosing things to do that you both love. He must realize on his own that life is not over and that laughter and good times still to come is a gift to be treasured. Communication does not come with luck; it comes with effort, sensitivity and friendship. Without these things in place, a discussion about Peyronies Disease would be very difficult to begin. Keep us posted.
     

I have a question for anyone who has actually been dating with this condition, not married or in a relationship. Have you encountered any horror story experiences with the reaction of your partner? It seems that one would simply appear as "damaged goods" and not worth sticking around with for very long regardless of personality (which might keep them around for a while, but not with any sense of permanence in mind. Certainly not monogamous while in the relationship, since they need it and you two aren't serious). I'm scared to date because inevitably they'll want to have sex and I'm not capable of penetration, not to mention the unpleasant aesthetics of it. That could be a disheartening reaction the first time they see it. I'd rather avoid people entirely than get a nasty response from someone. Nobody's ever seen me naked before in a sexual situation so I'm scared of getting a terrible first reaction. I'm okay and happy when I'm alone (Really. It's what I'm used to so it's comfortable for me), but if someone does something to make me feel bad about my body the first time I'm in that situation, I think it will really hurt my confidence in myself. I'd just like to hear some personal experiences from people who are in the dating scene just to put things in perspective. Good or bad.

If you're already in a relationship or married then your partner would obviously have some sense of attachment to you and probably wouldn't leave you over it. I would hope. So kind words and support always appreciated, but not the type of story I'm asking for. Unless of course it was one from a time when you were dating and not in a committed relationship. Thank you.

Quote from: Aoli on November 07, 2008, 10:54:02 PM
Have you encountered any horror story experiences with the reaction of your partner? It seems that one would simply appear as "damaged goods" and not worth sticking around with for very long regardless of personality (which might keep them around for a while, but not with any sense of permanence in mind. Certainly not monogamous while in the relationship, since they need it and you two aren't serious).

This is the major drag that accompanies the diseaese.  The curve itself wouldn't be so bad as long as you could maintain your erectile function.  I'm in the same boat as you.  Since getting the curve, I've developed more plaques on the otherside of my penis that I think has effected erectile function.  I rarely get morning erections and my dick is pretty much just a useless appendage at this point.  A lot of days I feel like a damn eunuch.  I don't have a girlfriend, but a lot of times I'd like one but I shy away from them because I know they'd never accept me.

Tinaa,

I do not mean to pry, but I am completely confused about a couple of things. There is no delicate way to ask this, so please bear with me.

1) Have you and your partner had sex yet? I cannot tell if you have or not, or by what (other) method you found he had Peyronie's Disease. In other words, have you seen that Peyronie's is a (the?) problem with your own eyes?

2) You stated that the relationship got worse. But I am not clear how you are relating that to Peyronie's Disease. Did he have Peyronie's Disease before you met? If the problem is longstanding, then why would the relationship get worse more recently?
I apologize for being confused. But it seems I have heard that he has had it for a while, but things have gotten worse between you two more recently. Therefore, I am not sure why Peyronie's would be the reason.

What I *thought* (from what I read/heard) was that he has had Peyronie's for a while, but it has interfered with intimacy as your relationship has progressed from close friendship to physical intimacy. But as I read the other messages, I am less certain I understand what is going on.

The reason it might be important is this: if he has a longstanding problem with Peyronie's, then it seems to me he would have longstanding emotional problems due to it (if he were to get emotional problems - many of us do not). Therefore, if he were to change in his manner around you, could that be because of a worsening in the condition, or is it new? If there is no change or the problems is not new, then the change in behavior and intimacy may be due to something completely different.

In any case, I think that you have the right to ask him to tell you why his behavior towards you has changed. If he cannot tell you, he may not know himself. But if he is withholding his emotional life from you, then you may want to reconsider whether or not you are making a sound choice in a partner.

Tim

Dear Aoli and Port,

I have had Peyronie's since I was 21 or so.

I have had (too many!) inconsequential sexual encounters with women who were not attached to me emotionally or that interested in perhaps even me. I never heard one comment at all. I have had a few questions about the shape after a few sexual encounters.

For me, an erection is still much better when someone else is helping make it happen (s) and I have to say that I have had my share of self-doubts about my penis, though far fewer about ME. I think that is probably why I took the risk of rejection despite having a "bent penis".

One woman seemed (in my mind) not so interested and we drifted apart quickly, and I wondered... but she was about 6'2" tall and I think she wanted a bigger man in all ways, not just penis size and shape. (FWIW I felt like a puppy climbing around on his mother when I was with her; it felt a bit weird to me too).

Taking risks is something that we all have to learn to do. Getting rejected (yup, had that experience far before I got to the "taking off pants" stage!) happens. It usually happens because of who we are not because of how we look (including our penis).

If you cannot get an erection even with an injection (I propose that this is an important part of a work up for erectile dysfunction), then you will need to get that fixed before you have sexual intercourse with anyone. Even then you can still have sex with a woman.

Good luck - I suspect that the problems you face ahead also lie between your ears and not just between your legs. Attend to how you deal with this, for it can make any of us emotional wrecks.

Tim

I can get an erection, but I am scared of making things worse by using it. My flaccid and semi-erect state bother me way more than my erect state. My erect state is about a 30 degree curve to the side towards the top and a little bit up and the base. It's shrunk some, but it's still an acceptable size. I don't know if I can comfortably get into a sexual position, but that's not what's bothering me. I think I could deal with that. I don't want to try to insert it because I'm afraid of further injury.

I wish my flaccid state was normal again, that's bothering me the most. It feels harder and now has the same curve to the side as my erect state. Semi-erect causes it to pull to about 45 degrees to the side before extending again. Very recent change. I'm scared of pain developing and I'm just worried that keeping people around will be difficult. I would like some general intimacy even if I'm not being touched much. I thoroughly enjoy rolling around and kissing, and I can enjoy touching other people. My own personal health is my primary concern. I'd like to be able to use the restroom without having to readjust and it feels like negative sensations are beginning... I can't quite tell. If my flaccid and semi-erect states were normal again I could just ignore it and I wouldn't mind being undressed in front of others. 

Are the women here upset because they can't have their partners penetrate them or are they upset because of the personality problems with their men? Women have all sorts of gadgets that could take care of the penetration portion, and would probably feel better since humans don't have bonus features like vibration. Doesn't seem like it would be of dire consequence to them personally if penetration was the only issue.

Aoli,

I think that it might be helpful to read what the women have actually said.

They have rarely complained about the penis itself - the complaint is about emotional withdrawal by their man from them. I remember one angry outburst at the disease, more at that than the man himself.

A lot of us here have argued a "use it or lose it" attitude. I do not think I injured myself more at all by having sex. In the last ten years I have had to let go of more athletic sex, but that is about it.

The VED offers a way to maintain regular "stretches" without needing to actually have sex, and probably works better at correcting curvatures. But avoiding erections and sex has led much more often to worsening than almost anything else (short of self-abusive activities that are too rough).

Tim

Aloi,

While I am speaking clearly for myself here, I think that my opinion is shared by many many women.  Please listen to my words and know that I mean every word I am about to say.

If it came to be that I found that I could NEVER have sexual intercourse again with my partner due to his inability caused by Peyronies Disease or any other condition, it would NOT affect my love for him one bit. My love for him was not built on the condition of his penis and is not conditional to that either.   However, in the same light, I would always expect to be able to have all the other aspects of a close, intimate, and romantic relationship with this man that I love so dear.   There are so many many other ways to have that kind of relationship.  Some physical, some emotional, some just conversational.  I want to feel that the man I am in love with holds me in his heart and is open to share his life with me which would include the good as well as the bad.  I would want to know that I am allowed to support him in his trials and that he would be willing to show me comfort and love in any way that he is capable of.

You should not dwell on what you cannot do.....but emphasis in your mind what you can do and do it with love, and caring in your heart for the one that you love.

Now you may be wondering...how can a women fall in love with me when I have this problem???  Well, to me the answer is simple.   Why are you basing your relationship on your problem???   A good relationship that holds much value should be established  and nurtured for a long while before the subject of your penis should even be an issue.   I know, I know.....it may be an old fashioned way to look at things. But believe me, if more couples took the time to get to know each other and develop a real relationship BEFORE establishing a sexual relationship the problems couples have that send them to divorce court would probably be a whole lot lower.

My advice,  take your time....don't let your condition rule your future.  Any woman that truly loves you will not base her love on what you can't do....but will love you for what you can do, and will want to share your life and fight this war together.  Don't shut her out of your life, be honest, let her love and support you and most of all be a partner in every aspect. 

So many men feel that their life is over at the realization that their condition has hindered their future abilities to have intercourse.  The anger period and the depression period is so hard for them to take and they reject and push the woman in their lives as far from them as possible. In my case my husband would refuse to even hold my hand....now what does that simple act of affection have to do with his penis or the lack of his ability to use it???  This is what confuses me to death!!  When they can clearly see that this woman is not rejecting them why are they not grabbing tight to the one person who can help them, support them, and love them through one of the most trying times in their lives.  Why push the one person who already loves you away and then wonder if you will ever be able to attract a woman.  YOU ALREADY HAD ONE!!!  Or they resolve themselves to being alone and without a women and turn into a lonely depressive individual.     ok...so I know I am talking more about my own experience here but it's a story that I am hearing time and time again.   

I guess I am just saying that if you have a loving partner that is willing to stand by you and work through this condition and fight the fight with you....then let her.   If you don't have a partner and am worried about your ability to get one.....start by establishing a relationship that is not based on sex which is probably good advice with or without Peyronies Disease.   You will probably see that if you find a woman that loves you, and I mean truly loves you, the condition of your penis will not be the issue.....but establishing ways to show your partner that she is loved and that her feelings are considered will go farther than you think.

Just my two cents.    keep the change.

Blessings,  Christine

You gotta love Christine and the value of what she says when she finally decides to post and say it ;)

That was an awesome post that every man here would do well to ponder.  Maybe that post should be printed and left on a few desks for husbands that shut their wives out.

Back rubs do not require a straight rigid penis. Nor do conversation, compliments, a nice meal out for two, or a movie together. 

If a man is saying, "I have Peyronies Disease so I can never take you out to eat, have meaningful conversation, rub your back, cradle you in my arms, or tell you "you are gorgeous" again then he is surrendering to major impairment that will make him much less satisfying as a partner.  In fact he is admitting he has given up the thought of being a partner at all. Before worrying about what supplement or device might straighten his penis a few degrees he would do well to fix the part of him that has a guaranteed fix.  that is of course the psychological aspect that is almost always what devastates relationships and happiness.

Because Peyronies Disease takes away one thing, do not be like a spoiled child and throw away everything else that you can still provide and experience.  That includes sex.  Sex does not even require a penis much less a large straight erect penis.  I will be the first to admit i loved having mine and I miss it but I will not lose everything because I lost one thing.

"Life does not have to be perfect to be wonderful" Annette Funichello

although I'm the least experienced out of the bunch here there are lots of ways to get creative like Hawk said

deep warm loving hugs can do wonders you know. intimate foreplay, massages and oh don't forget flowers-- I don't mean the fake ones--- and your fingers  ;D

a little bit of imagination can go a long way.

To Christine:

Thank you. I appreciate what you've said, but it seems I've led you all to misinterpret who I am personally. I'm not surprised, as this is generally a forum where the young are irrationally upset and define their lives by their organs. Even so, I'm sure that people with that outlook can benefit from your words. I am accustomed to being on my own prior to the affects of injury. I enjoy being alone more often that I do with friends. Just a personality trait. It's relaxing. I'm very warm to people when I'm around them. I will NEVER, EVER push someone away because I'm having a problem. I learned my lesson about that before this was an issue. I don't avoid arousal (quite the opposite in fact), but I simply don't think the shape can permit any positions I would personally enjoy or would feel pleasant for her or me. It'd be nice but I'm able to do without. I'm just trying to keep it from getting worse. Don't want to have serious problems in non-sexual situations too, which is the case with some people. My current concerns are predominately health related. People with WAY more serious problems than me do just fine. I'm a winner. My personal success and my sex life have nothing to do with each other. I'm a tad jaded towards the mature behavior of others my age however, so I wanted some examples of how people have reacted when it came to sex without commitment in the dating world. I'd still like some actually, I want to know what range of reactions I can expect. That way I won't have any nasty shocks.

Those experiences would also help to elucidate how this affects a woman's interpretation of someone on a more primitive level. Emotional attachment screws with that so I can't use that information. As far as I've observed women generally project certain traits towards someone with genitals of a certain size on a primitive level. Appears more masculine, more alpha, etc. It's just like the halo effect and someone's facial attractiveness (pretty=good, so we assume more good things about those we find attractive, just as the inverse is true. Our perceptions will inevitably change when we get to know the person, but when you don't have a strong relationship (platonic or not) to a person, the halo effect holds true. Never seen an exception to that phenomenon). I have no clue what psychological effect that someone whose body is afflicted in this manner might have on a woman's mind. The rational mind is dominant in interaction, but emotion and attraction are purely primitive. Case and point, a person might meet a very successful person who is attractive, but if they don't feel attraction for the other, they can't rationalize themselves into feeling it no matter how smart a strategic move it would be. Which is exactly why what qualities people say they want in someone (what one should rationally desire) are often incongruous with they types they pick. I want to know how a physical issue of this sort might influence someone's personal image of you as much as I want to know what visceral reactions I can expect. I don't trust the rational words of people. I prefer to decipher how their brain's work because they will try to rationalize themselves into correcting any personal grievances. When people feel something negative about someone they like, the rational mind that houses their values makes them feel guilt and they try to correct it. And that's what is left unsaid to the partner out of fear of hurting them and personal guilt for feeling that way until they can bury the feeling of, "I wish X area of my life was more perfect for me."

It's all perfectly natural and I'm okay with it, but your experiences will help me make make sense of someone's primitive reaction and work around it. Can't fault humans for being human. Bad experiences may be with more shallow people, but they're often more honest about how they truly feel and that's valuable information for me.

Medically, it seems like using it would cause pressure against the curve, which will cause even more scar tissue. So that's why I don't think I'll be using my body until it gets better.

Home Run, Christine. Your post made the Highlight Reel!

It always amazes me how much we men bear an incredible willingness to feel shame when we had nothing consciously to do with our condition.

I have never had a discussion with a man who didn't agree that he would date a woman he was attracted to even if she had a mastectomy. Yet women see the loss of their breasts as a disfigurement that would not be tolerated by a man who might otherwise be attracted to them. Doesn't that seem familiar?

Personally, I have had Peyronies Disease now for nearly 3 years & in that time have dated 4 women who learned of my affliction during the course of our relationship. In that time period there were 2 ladies that actually had sexual relations with me - as far as they could go - & 2 that didn't. My most recent partner was one of those. Interestingly, I found myself telling her about my Peyronies Disease on our 2nd date. Her reaction was to admire my courage for telling her. If anything, it was a "turn on" to her.

The upshot of this is that I am no longer dating any of these women but I am convinced that not a single one of the breakups had the slightest to do with the condition of my penis. Most often it was because I am simply not ready for a long term relationship. Every lady who I informed expressed nothing but compassion & never made me feel inadequate. Now I don't doubt that there are women who will run as fast as they can if they learn about my "problem". However, I believe that these are the same people who would run from any congenital defect.

Let me tell you, friend, if I spot a woman who attracts me because of her looks, her wit, her intelligence, etc., etc., I am definitely going to do my best to meet her & ask her out. I trust my own judgment of the kind of women I like - as a person first - to have confidence that I will not be rejected because of my genitals. By the way, I am 66 years old!

Aoli and all - I read the men's threads regularly and share regularly in the womens forum, and am finding so much information and support here.  I am so grateful.  I have been dating my guy (who has Peyronies) for about a year.  The sex stopped once the Peyronies progressed to where insertion was painful to him and actually impossible due to the bend when he got an erection.  That is when ALL intimacy stopped on ALL levels.  No more touching, no more kissing, no more hugs, no more snuggles, no more back rubs -- nothing because of his fear of getting an erection and his not being able to perform and satisfy me.   I feel rejected, which in turn makes me feel fat, ugly, unattractive, unwanted, etc.  Even though whenever I see him, I see a handsome, sexy man, who I want to sit next to, hold hands, hug, kiss, and cuddle up with overnight.  But he wants no part of it, and consistently pushes me away, fearing that "all of that" will lead to sex.  It is horribly difficult for me to imagine staying with him; but ONLY because of his constant rejection of me.  If only he would allow some sort of physical intimacy and closeness, I know I could stay beside him through this, no matter how long it takes for him to get "better" whether that be physically or psychologically, or God-willing, both!

One of the other ladies wrote this in one of her entries the other day.  It is so true.  And I hope by sharing this on the men's page, that someone, if just one guy, gets it, it will save a loving relationship!!

"The only thing they can legitimately blame Peyronies Disease for is the bend in their willy. All other actions are theirs alone, and they have to own up to them."

Supportive1:

WOW! What a position to be in with your man. It would be difficult for anyone to endure such a situation in normal times, much less in a bout with Peyronies Disease.

I realize where you are coming from, but there is something that might lend a thought as to why he does not like the "foreplay", for want of a better phrase. Some men have a sexual makeup that does not take much intimacy to get them "in the mood" and the experts says this is a term called over sexed or have a large sexual appetite.

OK, Peyronies Disease strikes and renders him incapable of getting an erection and performing like he was used to doing. The pain with Peyronies Disease can be very severe and devastating. Fear enters the picture when he even thinks about having any physical contact with the opposite sex. I know this feeling very well when Peyronies Disease first struck for me. I was not married at the time, age 24, full of vim, vigor and vitality and had many opportunities to date and have relationships. I just shut down and kind of went into a shell  for quite some time. Finally, got some help with the Peyronies Disease and things went back to somewhat "normal" again.

So, what I saying is that if your man is still young enough to have intense feelings about sex and the problem of Peyronies Disease interferes, he is really on the down side. Now, where do the two of you go from here - that is a hard question to answer. Somehow, some way, the two of you have to get a mutual understanding for the problem and seek professional help if you cannot work this out together. I know that you have a problem in getting him to open up and talk, so you have to work on that first. If you can get him to talk, you have most of the battle won. After that, you need to reach a point where the problem is mutual and both understand what to do.

I am not a doctor, but have had many chances to work with guys, gals and sometimes couples in getting them back on track. It is a major problem with some guys that are very energetic, sexually virile and need constant sexual relations to keep them happy. So, use the above for what it is worth and I hope and trust that you can get satisfaction with him soon.

Old Man

Christine, you hit the nail on the head, so to speak, and no pun intended.  I have not yet posted in the Ladies' Room, but still intend to do so - mostly I've been lurking in between doctors' visits with BF. What an awesome post.  And I hope you guys are listening......

Jazz

Quote from: Hitman on November 10, 2008, 01:56:54 AM

deep warm loving hugs can do wonders you know.

" In my case my husband would refuse to even hold my hand....now what does that simple act of affection have to do with his penis or the lack of his ability to use it???"

I don't know about his case and I hate to be a downer, but in playing devil's advocate here, there are times where things as simple as what is being mentioned here HURT LIKE HELL.  There are times during the day when my penis hurts more than it usually does.  As I have said here before, it hurts all the time but it hurts worse when I am getting an erection.  The pain is not always the same when getting an erection, and the pain is reduced if I get an erection and am in just my boxers (with them turned backwards so that my penis does not brush against the ridges on the front of course) but most of the time when I am in pants and get an erection the pain and discomfort is almost unbearable.  Sometimes the pain subsides momentarily but it always comes back. 

Holding hands with someone you love or giving them a big hug is the most wonderful feeling in the world.  If I had it my way I would be completely back to normal. But since that is not in the realm of possibility in any reasonable time-frame I would settle for having a normal non-sexual life.  That I cannot do.  Most of the time when I hold hands with my girlfriend I hurt in some way.  This is first and foremost a physical hurt.  Clearly it is affecting me psychologically but the pain is paramount to all.  Just walking around on a daily basis is a chore.  I have to try to just ignore the pain.  I take 2400 mg of Motrin daily, 900 mg of Lyrica, and Trental as well.  Unfortunately it doesn't help.  I used to love to workout, to keep myself fit, and to eat healthy.  I find that any physical activity hurts and as a result I have given in to at the moment not even trying. 

I still hug my girlfriend and hold hands with her.  But most of the time IT HURTS.  That is the cruelest punishment I can ever think of someone having to deal with.  I feel cursed.  And I found out the cat my girlfriend and I adopted from the humane society 2 months ago (who is now six months old) has FIP and will soon die. 

Alcohen makes some important points and all the women here need to pay attention.

While Alcohen's degree of pain is very near the high end of the spectrum (some men have no pain), pain is not unusual during the first 6 to 18 months.

So the issue is knowing whether the withdraw and lack of intimacy is due to actual physical pain or due to psychological issues.  I am sure that any women who would trouble herself to post on this forum out of concern for a relationship would understand a man avoiding physical pain and even understand the time needed to address the psychological trauma of Peyronies Disease, but in the end, the statement

"The only thing they can legitimately blame Peyronies Disease for is the bend in their willy. All other actions are theirs alone, and they have to own up to them."  Is VERY true.

Clearly conversation and dinner out does not cause painful erections so there is no excuse for withholding these.

Alcohen,

I understand what you are staying completely.   If it were a physical pain that was keeping him at bay I would not have ANY issues with his restraint.  Actually I would completely understand his withdrawal.  He used to tell me that often just a simple touch from me would make him aroused and if that was at all true, I certainly would not want to be the cause of any pain to him physically.  Actually in the early stages of my husband's condition this was the case.   However, I was referring to his actions after a few years into this and long past the physical pain had subsided. By that time it was really becoming hard to stay at arms length from the man that I love.  It sounds like your condition is even more severe then that of my husband and for that I am trully sorry for your situation. 

I cannot imagine the pain and discomfort both physically and emotionally that you men go through.  It really makes me crazy that there isn't anything that we can offer our significant others other than a shoulder to lean on and an ear to listen.   If that is all we can offer, it pains me that he won't accept that because I love him so very much and his emtional pain hurts me as well because I hate what it has done to us as a couple.

I pray so hard that something comes to light soon in the medical world to find something to substantially help you all!!!

Blessings,  Christine

Thank you for the replies.  I am glad that I am able to use this forum to compare my symptoms with people who are having similar ones and see about finding ways to deal with them.  I need to find some way to make the pain stop. 

One other point...when just walking around and doing everyday things is very painful I do have a right to legitimately blame the Peyronie's Disease for that. 

And playing devil's advocate on the dinner and conversation bit, I believe some men may have a psychological issue with that. 

Firstly, they do not want to hold hands or touch because of fear of pain.  The human body is conditioned to not want to do something that it knows will bring about a painful response. 

Lastly, they have the memories in their head of when conversation and a nice dinner out led to a very intimate and/or sexual experience afterwards.  I believe this is more often the case when men develop Peyronie's while they are dating or are married to someone.  When they are shutting out their lover in these situations after developing Peyronie's, I believe it is because they have stopped seeing the point in doing the situations at all. 

They picture themselves having the nice dinner out, dressing up, putting on cologne, etc., and then afterwards coming back to the house where their significant other is now in the mood and wants what every woman wants, needs, and deserves...intimacy with the man they love.  The man is afraid of this not only because of possible feelings of inadequacy if he is insecure about the shape of his penis, but ALSO because of the physical pain that will come with the possible intimacy. 

So therefore things are linked together.  If intimacy leads to severe pain, and dinners out ultimately will lead to intimacy, then some men will shy away from everything all together.  Men can also fear the discomfort and akward situations that can arise when they have to see their partner sad because they know what is happening is bringing the man pain.

For me personally, it really hurts to see my girlfriend upset because she sees that I am in pain.  Because I love her, I want nothing more than to see her happier than anything. 

Just some thoughts...

Quote from: alcohen on November 17, 2008, 11:27:58 AM
And playing devil's advocate on the dinner and conversation bit, I believe some men may have a psychological issue with that. 

Firstly, they do not want to hold hands or touch because of fear of pain.  The human body is conditioned to not want to do something that it knows will bring about a painful response. 

Lastly, they have the memories in their head of when conversation and a nice dinner out led to a very intimate and/or sexual experience afterwards.  I believe this is more often the case when men develop Peyronie's while they are dating or are married to someone.  When they are shutting out their lover in these situations after developing Peyronie's, I believe it is because they have stopped seeing the point in doing the situations at all. 

They picture themselves having the nice dinner out, dressing up, putting on cologne, etc., and then afterwards coming back to the house where their significant other is now in the mood and wants what every woman wants, needs, and deserves...intimacy with the man they love.  The man is afraid of this not only because of possible feelings of inadequacy if he is insecure about the shape of his penis, but ALSO because of the physical pain that will come with the possible intimacy. 

So therefore things are linked together. ...

Alcohen,

Sorry but physical pain may be beyond your ability and hence your responsibility to address.  That is not so with psychological pain which is our responsibility to own, address, and fix.  It may require professional help but in the end it is our issue and our responsibility to get over.  Your example helps one to understand the challenge but it does nothing to remove the responsibility.

I encourage all women to click on this quote to read a more in depth explanation of the mountain men must climb.

Quote from: Hawk on September 11, 2006, 11:26:34 PMClick this quote header

They must however climb that mountain.

I have laid in bed with tears silently rolling down my cheeks in the dark during foreplay because I morned the loss of what was.  Sex made it impossible not to acknowledge the contrast and loss.  That being said, it was still my mountain to climb.  I would like to think I have pretty much scaled that mountain.

Dear friends

          This is a short notice to tell you that am going to post a question in our room as well as it will be also posted on the male general discussion room, so please do your best to participate and share your opinion and thoughts,

The question will be:

    Dear friends

For all you who had suffered either recently or for a  long time from Peyronies Disease, and as you know for sure, this condition not only affected you but also us as your partners, I want to ask you:

1- Do you think that we as your partners have any role that we can offer you in order to get out of your silence and pain??

2- what were your expectations from your partners to support you ??

3- In which ways do you think we can help to get out of this situation??

4- If you want to ask your partner to do one thing to you , what would be that be???

please try to answer these so it is clear for us to understand the way you think as males and as Peyronies Disease affected people in order to do our best to be by your side and support you.


God Bless 

Quote from: alcohen on November 17, 2008, 01:32:27 AM
I still hug my girlfriend and hold hands with her.  But most of the time IT HURTS.  That is the cruelest punishment I can ever think of someone having to deal with.  I feel cursed.  And I found out the cat my girlfriend and I adopted from the humane society 2 months ago (who is now six months old) has FIP and will soon die. 

Quote from: Hitman on November 10, 2008, 01:56:54 AM
although I'm the least experienced out of the bunch here there are lots of ways to get creative like Hawk said

deep warm loving hugs can do wonders you know. intimate foreplay, massages and oh don't forget flowers-- I don't mean the fake ones--- and your fingers  Grin

a little bit of imagination can go a long way.

Very sorry to hear about the cat  :(. I'm sure you both have given it lots of love since you adopted it, so try to concentrate on the pisitive, however difficult it may be. Try to stay positive about all of your problems no matter how difficult it may be.

tinna
My wife was the first to notice the curve on vacation in 1995.

It is hard to give an exact answer to your questions because it has been 13 years.

One thing my wife has never complained!! Kept the sex live good and modified our positions for both of us.

One day she noticed the shrinkage from peyronies. She asked it it was smaller. I told her yes. She told me no matter what "Jack I did not marry you for your penis."  She has never mentioned it again.

The peyronies, ED, venous leakage and corporal fibrosis got so bad that doctor recommend an implant. The first doctors attempt at an implant was aborted because he punctured my urethra.  In the recovery room she told me not to worry this will not change things between us.

I started research on Penile Implants. She told me not to do this for her. I told her I was doing it for us and to be honest myself.

I spent many hours on the computer. Went to several other doctors. I finally found a local doctor that refereed me to a male sexual function specialist at Vanderbilt.

The implant was successful and I am almost 5 weeks post op. She is just as excited as I about the outcome.

My implant was not for just ED but the complications from Peyronies.

M live by my faith and my attitude is NEVER EVER - NEVER EVER - NEVER EVER give up. Just because one med or doctor could not help did not stop me from looking for one that could help.

The only advice for you and your husband is communication, communication, communication. Laugh and cry with each other. Hold each other, and never ever stop having sex. Sex is not always penis in vagina. You can have fun in a lot more ways.

My wife and I have been married 40 years. Learned a lot the hard way. Peyronies is not the end of the world and/or sex.

For assistance with sex and shrinkage go to the VED section and contact Old Man. In a year I gained almost 1/2 of the shrinkage. A good marriage counselor could also help get the communication going.

Jackp

Dear musicman and jackp

     First of all let me say thank you very much for being so honest in your reply, I know it hurts to feel just like you are (lets say) not satisfying your partner as u wish, but did you ever ask yourself (if this is what you are looking for ) whether your partner is really satisfied and happy or not,???
did you ask yourself what we really need from you as partners??? believe me we as females when we truly love somebody these things would never change the way we feel , love, and the way we treasure our beloved ones, BELIEVE ME. but the only thing that could really change the way we express ourselves to you as our partners, is the way you treat us, so we are reacting according to your behavior, and this doesn't mean that our love and commitment will be conditional, NEVER,  it's just we will keep trying to fix whatever happened and will happen , and will keep trying to send you indirect msgs that we will always be there for you, and to be honest with you.  If we don't find any response from your side after many trials, the only  way we think about it is that you don't love us anymore regardless of the reason and this is more than enough to push us far away from you. as we don't believe that this disease is really enough to keep you isolated and doesn't give you the right to deprive us of the love we spent ages in building and dreaming of, the thing that could drive us crazy to the point that will make us just make a decision to block our heart from EXPRESSING OUR LOVE TO you.


The other thing. did you ever think about ( is this the only thing in you that could make you really a man???) if yes then after losing it what are you????????????????????

Let me share with you some thoughts. Do you think that the God doesn't know what is going to happen with you and me in our life??? HE KNOWS......MORE AND MORE. so did you try to ask yourself what was behind this WHY ME GOD????? am sure you did that millions of times, but I didn't mean in a way of blaming God for doing this for you. But in a more mature way that goes with ( OK God thank you for giving me the chance to test the love of those people around me and to offer me this true precious love that is and will always be NON CONDITIONAL and believe you are very BLESSED to have it. then try to move to the next step of how can I use this to help others who are suffering and are still in pain  (I am sure no one can ever feel this pain unless he passed through the same experience ) so maybe God wants to use you with those people who really need your support and courage. Did you ever try to think of others rather than yourself, while you still have a loving caring and committed partner?????? WHAT ELSE DO YOU NEED?????
YOU are being BLESSED
YOU are still being LOVED
YOU are a MAN with or without that organ. ( This is really the way it is and the way we believe ).

And all that we need from you, JUST YOU yourself even if you will lose all the your other organs we SILL TRULY LOVE YOU. and you will always be a MAN in our eyes.


and the last thing I want to tell you:

IT'S OUR RIGHT TO BE ALLOWED TO HOLD YOUR HANDS AND BE WITH YOU WHILE PASSING THROUGH ALL OF THIS , AND IT'S OUR RIGHT TO LOVE AND BE LOVED BY YOU.

DON'T LOSE YOUR FAITH

tinaa
Satisfying partner. It never occurred to me to stop satisfying my Princess. When my erection was only half hard I would find things other than penis in Virginia for sexual satisfaction. Slowly introduce oral sex, find her G spot, get a vibrator. I introduced these gradually and in a loving way. Do not push. My approach was to always satisfy my Princess. I asked nothing in return.
What did I get in return, Kissing, stroking, and oral sex from a lady that once thought it to be "dirty." She always kept me satisfied and the times we could manage penis in vagina it was special for both of us.

Stop the indirect messages. Have a talk with him and tell him exactly how you feel about him. Men do not get indirect messages. A quiet place with a glass of wine, sit close and let him know how you feel and give him time to respond.

I never let my penis or size of my penis determine if I was a man. Penile shrinkage can be a blow. When that happens get a VED and contact Old Man for instructions. He can in most cases regain some of his size back. I tell the true story of the three of us that ran together in our early 20's. Juniors claim to fame was his 9" penis, Billy had just over 3" and I was in the middle with 5.5"
Who got the most sex? Billy. Junior never could understand why the girls would not fall over him. Some of the girls said that they wanted pleasure not pain.

I am blessed. A wife of 40+ years. 3 Children, 2 grand kids. I pray every day that my son and grand son be spared peyronies.

I have a strong faith in God. I also believe that we have to do things in Gods time and not our time. My time for an implant was 3 years ago. Gods plan was 5 weeks ago. God lead me to the best doctor in the southeast. He put in the implant that other doctors could not do. Will I have all I had before peyronies? No. What I will have is a penis that has a usable erection. What else could I ask for.
My Princess will be home waiting for me when I come home next week after I get the implant activated. We will probably act like newely weds. She says she has something special or me. I told her that she is all I want.

He is going through a tough time. Be supportive, help him find his faith. Faith in God can do anything. My Princess fought me that years ago and I will never forget it.

If you need a friend just knock. If you need support lean on us. If you need a good doctor some of us have some you may try.

Keep the Faith

Jackp

jackp:

Only one comment --- well said!!!!

Old Man

You are really a wonderfull support group.

God bless you

Jackp,

Thank you and what great comments. My wife and I have been married 32 years. And we were very fortunate early in our marriage to learn to focus on each other's pleasure. Recently we have even begun to council with young couples, and we have even done weekend relationship seminars focusing on sex. It seems that many younger people are entering the relationship with a "what's in it for me" attitude. Not all think this way, but it seems to be more accepted these days.

This was all before my Peyronies Disease. And my wife and I have also worked through it as you did. Learning new positions was just part of the experience and the fun. And since having Peyronies I have been able to share this with friends. And I have since learned of their ailments and issues they are having to deal with. It seems guys don't talk and share much, especailly when it comes to ED and other urological issues..... let alone Peyronies. And regarding Peyronies specifically, I've been emailed from guys all around the world who have read my story and are seeking advice. Some have even called me to speak and discuss over the phone.

And yes, we also have a strong faith in God. And we believe there is a purpose for everything. And He has allowed me to go through this for a reason. Is it to simply help and encourage others? I don't know. But if we are not here to help others....  then what is our purpose?

I do know that God is using many on this site. There is no single cure or we wouldn't be here. But knowledge is a tremendous asset. So He has used many on this site to share, to encourage, to offer help, to offer alternatives, at times to disagree, to recommend, and to offer compassion and understanding. It is a terrible disease, and hopefully there is the once and for all cure just around the corner.

Until then, it's up to all of us just keep doing what we are doing.

hi everyone im taylor mcgarry im 17 years old and just got diagnosed with peyronies disease. forgive me for no caps but its faster for me to do this. ok i am going crazy right now my penis is hardening and going left like a hook. its freaking me out i mean how can it be just hard and uncomfortable to all of a sudden bend left? i mean what the hell man! it seemed like it was getting better and now it seems like its getting worse. can anyone please help me out? what can i possibly do to make this better? i need good information though because i am young, i am willing to do anything but i dont want to end up making it worse. so please if anyone can give me good facts on how to heal this it would be beyond greatly appreciated. any pills i can get from the vitamin shop or anything. i dont care how much it is i will save up and buy it if it can help the peyrnoies disease. as for coping with it i been taking xanax illegaly. 1 bar a day so far and its alright but i just took my last bar. i have been smoking lots of pot and cigs and doing no physical excercise which is obviously really bad for my peyrnoies disease. i am signing up for a gym memborship right after i send this message. i am going to smoke a couple more cigs and quit. as for the pot and xanax im not to sure. as long as i am physically excercising it will help. they do help me mentally but im asking your guys opinions. even with a lot of cardio excercise and healthy lungs do you think that smoking pot and taking xanax could harm my peyrnoies disease in any way? any help here would be awesome guys. any pills suplements etc........ thank you all i llove you guys for being strong and living with this. i know now the feeling of hopelessness and i plan on helping others after i get through this.

Taylor,

I write a lengthy and thoughtful (at least I think so) response to a similar post by you in another thread a few days ago.

So take some advice already, instead of asking for more of the same.

Tim

Despise, i feel what you say about needing some substance to calm you down. I understand this need and where you're coming from. There have been a few times where I just had to take some pain pills to keep from going crazy. But taking a bar a day is really not smart. Sorry but you really need to calm the F~@< down. That, pot, cigs, you're doing all the wrong things. Cigs, caffeine, stimulants like that need to be the first thing to go. If you're really that high strung you need the Xanax for now, then at least wean yourself off the other stuff. It seems that you're in a scary place right now, most of us have been there, but have faith that you will eventually get to the place where you have more control psychologically.

Dispise

I think you have received some good input so I will not respond to what has already been said.

I will comment on the "Please forgive the no caps but it is easier and faster for me".  This forum is for the ease and convenience of all.  There are ten thousand posts here that much work went into writing and organizing into topics for your convenience.  It would be easier and faster for me to shut the forum down but I think of others.  When you post and ask to receive, you can surely take the the few seconds extra to consider the thousands of others that will read the exchange.

Thanks or understanding the point and not taking offense.

Hawk

Discussion on a post initiated by Valkrest about a possible inappropriate medical exam, were moved to the topic "Urologists and other Doctors"

Sorry for my laziness. I apologise. I am very scared and have recently been talking to my ex girlfriend. Im so happy im not alone in this anymore but now I want to get better so I can have fun like a 17 year old should be having! I am not ready to try anything sexually. I have stopped smoking cigs and I am recently working out. As for the marijuana and xanax thats going to be a little harder.

despise,  I can only tell you that any amount of marijuana is bad for you and not only for your Peyronies.  Additionally, unmanaged amounts of Xanax are bad for you.  But you alone have to grasp this.  Once you get it, there IS help out there.  But the really big issue is that you understand and acknowledge that they are bad for you.  Its just like with food.  Once people really understand how their body reacts to various kinds of foods, they have no problem to change their diets.  You really need to understand that this is NOT a moral issue (although some folks try to limit it to that, which is not helpful), it is a personal health issue.  You need to decide whether you want to choose good health or choose to continue to ruin your health through bad choices.  The rest, the addictions and all that, are easier.  If you really want to be healthy and you want it bad enough, there are doctors around that will be more than happy to help you with any physical addiction issues.  On the other hand, if instant gratification is your priority, you might as well save your money and your time, and kiss your long term health goodbye.  There are worse things out there than Peyronies, and I am sure you don't want to find out what they are.  I think you are a plenty sharp young man and capable of making some wise decisions here that will guarantee you a better future.  But only you can make those decisions.  I wish you the very best.  - George

Psychological harassment that is what I have been dealing with from some of the people I work with in the workplace. I am not sure how they did it may have been some form of beta blocker we think. I can tell you that I had problems with my vision mostly in the center field of my vision just before the  symptoms started. I live alone and had not been with anyone for some time they knew this the officers that did this knew that it would work I know from the harassing comments. I just want people to know that some how it is possible to induce this disease on someone. Your problems with Peyronie's disease maybe of someone other than yourself in the making but I can tell you that its one of the hardest medical problems I have had to deal with I just hope I don't lose my mind in the process.

Dear Mac10,

I am not sure what is going on in your life, but it sounds like you would benefit from psychological help. My advice is to seek the competent care of a psychiatrist and psychologist. They can compliment each other - the MD can prescribe medications and the psychologist can do talk therapy with you.

This disease is hard enough without struggling with the emotional aspects alone. Underlying mental health problems can make it even worse. Best of luck to you.

Tim

The only thing that needs to be said or responded to by anyone on this issue, has already been said by Tim468.  I encourage you to follow his suggestions.

Administrator
PS: Since this was started with a repeat post that is posted in the "Psychological Aspects" topic, these posts will be merged under that topic since they have NOTHING to do with an education and awareness campaign.  Duplicate post was deleted.

I have been advised to stay away from this group till this is settled have a nice day.

For the longest time, I felt that my problems with Peyronie's was purely physical.  I thought that the device implanted into my penis ruined my desire and ability to ever have sex.  Now after four years, I am beginning to open to the idea that sex is still possible and that I just have to get myself in the right frame of mind. Granted it will take the right person, and will involve getting used to activating the device.  That's my worst problem; I'm afraid of the device.  I've only tried it once in all of these years and I'm no longer even sure that I got it to engage completely.  Any body else with this particular mental hang up?  Sorry that I didn't post this correctly.  I replied to another posting in error; but I'm not fully acquainted with how the layout works.

jtnester

JT,

I am glad to hear you are ready to extend some effort on this.  Any new change takes time to adjust to.  I think you should go through a program of activating your prosthesis at least once or twice a day.  I am sure you will find that the first several times will not be as good as it will eventually get so expect some disappointment at first.  You may have had some shrinkage and you will also get more skilled and coordinated at using the pump device.

I think working on this has the potential to build some confidence and quality of life, especially if it eventually results in some personal interaction that you have been missing.


Hawk

JT
I agree with Hawk.

You might try what I did when my implant was activated last December. Pump up the implant and hold for at least 5 minutes 2 times a day. Do not try to use the implant until you have done this at least 3 times.

It is going to be sore!!! No way around it. I take 800mg of IB for arthritis and found that helped for the soreness.

The first time I tried to use the implant (sex) was after following the doctors suggestion. I waited until I had pumped up the implant 4 times and was holding for 10 minutes. That was the first week of December and the soreness was so bad I had to quit about 1/2 way though. By Christmas sex was good by New Years sex was amazing. Now I wish I had it 10 years ago. I can now activate the implant discreetly and she does not know I have it active until she feels it.

Like a couple of us guys on the implant board related to the first time we had sex with a girl that never had sex before she was sore. Now it is your turn. ::)

Take it slow and easy. I bet if you let her your lady will be more than willing to support you.

Jackp

jtnester - usually I don't comment on these psychological things but your post hit a nerve.

I don't have an implant, I'm just 'bent',  but I went through something similar - I felt shut down, out of it, for a very long time.  And that feeds on itself - after so much time has gone by, you feel like it just wouldn't be possible to get going again.  But, you can.

The key for me was this:  rather than pressuring yourself to get into the "right" state of mind, think about getting out of the "wrong" state.  A bit of travel, new surroundings, helped in my case. 

Don't beat yourself up because you haven't used the implant, it doesn't matter.  I think jackp is right, just start using the thing and get accustomed to it.  I had to get over the hurdle of realizing that my "bent" equipment still functioned, and it's changed appearance didn't really matter.  It's just plumbing.

I think the issue of men and their perception of "their" sexuality has been a problem for all with or without Peyronie's Disease.  ( Note I have been told by medical staff that I don't have a disease, I have an affliction. )  At times some have issues if their penis is big enough or if they perform well in comparison to others. "jtnester" seems to have had a implant that would work but is afraid to use it. "J" states that he had some lows in his life until he realized that his equipment was just bent but still functional. Auxilium will not allow you in the trial of Xiaflex unless you have a bend of at least 30 deg.

I have had issues in my life that in reality were much more traumatic than my issue with Peyronie's. I must say that the psychological problems with this disease has hit me harder than I thought possible. If my bend was 30 deg. or less I would consider myself cured. If Xiaflex was to remove 1/2 of my bend I would still be bent at a condition of more than most on this forum. After 35 years of marriage I feel attracted to my wife but can't perform. In the last year I can see our relationship has changed to some degree due to this. I have tried most methods for treatment but really need surgery.  I would go now for surgery (knowing the risk) but financially it is out of the question.

Some say that it is only your penis and that will not stop you from having a great life.  This may be true but I do know it has changed my great life in to one of mental anguish.


Post edited to full width.  no wording was changed
Hawk

musicman, if for even one second I sounded like I was minimizing this problem, or saying "get over it", I apologize.   Oh, and it is a disease not an "affliction", it's a type of fibrosis that can affect other parts of the body (and does, in my case).  An "affliction" sounds like something out of the Bible.

Although I'm functional today, I don't know how long this will last. My areas of Dupuytren's contracture continue to progress, my Peyronie's may do the same.

W might be about the same age (late 50s).  Peyronie's tends to kick in at this point, but so do other things related to aging in general, and it's hard to separate the two. Until Peyronies Disease came along, I'd sort of been putting off aging -  I was in good physical shape and didn't feel much different from how I felt in my 30s.    When Peyronies Disease hit it was like a big overdue bill had to be paid - and I had to start seeing myself in the mirror as I really was. Ouch, it felt like I almost turned gray overnight  :)    My wife also has normal issues associated with aging.   Separating all this from Peyronies Disease, in my head, helped somewhat.

Hang in there - I think Xiaflex is going to be coming on strong in the not-too-distant future. 

Hey all,
As a younger "sufferer" of the disease (I am  24), I am curious if anyone has gotten any positives out of this interesting disease.   Personally, I have already experienced some ED problems because of this, and in fact I brought the disease on myself through some youthful stupidity (I know I'm not alone here).

For example, has it made you stronger in some way mentally?  Has your relationship changed for the better in any way?  Or maybe it has just made you more aware of your body, you have gained medical knowledge, you know more about the practice of medicine, etc.  At the very least, I've already found the positive of meeting (in a way) this group of very intelligent and goal driven people

Look, there is a possibility that this will be with me for the rest of my life, and you as well.  Just thought I would bring this up, since  I've been dealing with the mental aspects of being a newly diagnosed person getting started on other aspects of life (grad school, getting to know some nice women, etc.), I'm really curious what you have to say.

Cheers

Hey Jonny,  I don't expect to have Peyronie's forever and I'm 61.  I hang out on the research sites and I see researchers closing in on the solution to fibrosis and cancer rapidly.  Where not there yet, but barring some total cataclysm, I expect powerful new treatments soon that will make todays treatments look trivial.  Peyronie's has really gotten me to explore the science behind it all and I am more positive today than ever, and I have been positive about this since it started over four years ago.  I indeed look at it as challenge and I have grown a great deal as a result.  I a strange kind of way, I am thankful for it, but I have to admit, I look forward to being rid of it as well.  That said, I have to admit that I am not as affected by it as some of you are and that helps a great deal in keeping a positive mental attitude.  It also helps to be older in a sense, but that also means I have less time for a cure so its a kind of two edged sword.  But even now, it is possible to stop it in its tracks with Pentoxifylline and Vitamin D and things are only going to get better.

And when it comes to women, it is us guys who place such great importance on sex.  An awful lot of women really don't care.  Many of them value security and romance more than sex.  Believe me, if a female falls for you, I suspect there is a better than even chance she will be happy to take you just as you are, Peyronie's and all!  For sure my wife has taken it in stride, other things are far more important to her.  - George

i always thought you were a smart "young" man George  ;D

Hi everyone

I think I made like 1 post before or something but anyways ill tell you all where I am now disease wise. Im now 20 years old, over the past 2 years my plaques have grown without interruption. They now cover somewhere in the region of 80% of my penis. Im in intense pain both when flaccid and erect. My curvature is at such an extent that sex is impossible. Ive found doctors and urologists to be of little help and honestly im quite sure that im just going to kill myself now. I thought maybe in the past that there was some hope of beating this disease, or at least being normal enough, but you lot and I know that with such extensive plaques which im quite sure surpass most peoples on this board, theres no way back for me. Frankly I cant face being 20 and forced into painful celibacy for the rest of my life, ive barely coped with being unable to have sex for the past two years. I dont get how you guys do it, living like the freaks we are.

Andy

Andy,

Your post touched me.  Since you have not posted, I have no idea what the specifics of your condition are, what you have tried, who you have consulted.  I can tell however that you are in a lot of emotional pain in addition to the physical pain.  The physical pain will certainly go away eventually, even if you do nothing.  The emotional pain is up to you to fix.  And you can fix it as well as do a lot about your condition (which is a separate issue).

I encourage you to communicate with us on a more regular basis and share the details of your condition along with your thoughts and emotions.   You should also consider professional help in dealing with the psychological issues. You have to trust that you are currently looking at the future through a fogged up window.  You cannot make decisions about the future on that basis.

I also want to address some misconceptions.  I have the knowledge based confidence that in your life-time there will be solutions to issues even as complex as total regeneration of tissue.  These things have already been successfully done in vitro and in animal models.  So your conclusions that you are destined to a painful life of celibacy are based on a lack of knowledge or your clouded view of reality caused by emotional pain.

Force your chin a bit higher, square your shoulders, and carry yourself as thought you can work through this and you will work through it.  As Johnny 13 wrote, you will likely gain much in the battle besides just improving your physical condition.

Regards

Hawk

Andy,
As you can see I check this site very often, with the main reason being that it gives me comfort to know there are many people like me from all walks of life fighting this battle.  But it is also because it is fun learning things from people more intelligent than me.  Stay here and learn, from me and everyone.

I too am young.  I am 24, but contracted this when I was 21.  And I did it from being stupid.  However, I lived literally 3 years without giving my ED problems more than a glancing thought.  I was out traveling the world, enjoying life, making amazing friends, and trying various jobs.  Now that I have very little to do, it suddenly dawned on me that something is wrong with my body. 

THink about it.  3 years and I barely blinked an eye, and people I know call me the happiest person they know. 

Now I am going to school again soon, and will be for a long time.  I know what will happen.  I will often forget that I have this.  I will find purpose in school and in my life.  And I will meet amazing people, like those on this board, who will become friends and mentors.  And then afterwards, my dream is to use my degree to help people who are far less fortunate than us.  And maybe the disease will sometimes be a reminder of why I am chasing this degree in the first place...not for money but out of love for people.  And, yes, we are fortunate. 

Remember that.  Trust me, I know that there are 100 medical problems I would rather have than Peyronie's.  However, I'd rather have Peyronies than a 1000 other medical problems.  Think of all those who can;t walk, have various "real" diseases", don't have enough food, and even don't have enough water.  And yet many of them keep living and smiling. 

I like interesting people.  I think this disease will make us into interesting and deeper people.  And while it may scare away those shallow women out there, it may become something like a screening mechanism.  Amazing women won't care, and may even find it cool, to know that we are strong enough to deal with something like this.

One last thought as I lie here in bed.  I've had 2 categories of sexual experiences in my short life.

1.  The type where I have a fun 15 minutes, but then cannot wait for the woman to leave so I can watch TV and strum my guitar...do anything but be around her.

2.  The type where I wake up in the morning and could never be happier because I am lying next to an awesome person whom I really care about.  The sex was great, but that is not why I am so happy.  It is because she is there with me.  IF this is the reality...minus the instertion part... we will have to deal with, it is a good one.  No it is not the best.  But it isn't too bad for sure.

Hang in there and use it as motivation for other areas of life.  And even a close family member told me I informed her of it...it's only one area of life.  In our society, we are bombarded with the idea that our penis and virility makes us a man.  Look outside of the box.  This is not true.  Look at people such as Stephen Hawking and other amazing people who are FAR less fortunate physically, yet, literally, "are the man".  Funny, but today he and others are my heroes as well.  Let them become yours.

Well, this turned out a bit long.  I apologize if it is a bit out of order and bumbling, but these are my thoughts this morning, Andy.  Life is your decision, and trust me, there are so many awesome things in life it is not even funny.   Don't miss out on them.  Remember, I'm not one of these wonderful "geezers" on this site, like I said.  I'm a young tike too...but I'm going to deal with this and fight, and maybe even advocate for it in other arenas one day, and I hope you do the same.

Jon

Dear Andy,

Hang in there. Your first post was painfuil to read, and it sounds like you are not making much progress emotionally in dealing with this tough blow that life has dealt you.

You are much more likely to suffer from your emotional pain, than from the problems with your penis..

Here is a picture of what the good surgeons can do right now with a completely fibrotic and non-functional penis - one that does not get hard at all and has dense fibrosis:

https://www.peyroniesforum.net/index.php/topic,30.msg9079.html#msg9079

In the picture, they create releasing/relaxing incisions, and then place an implant, along with grafts.

And, on the research front, Dr. Atala has already created a functioning penis in a rabbit. Yup - they cut the poor guy's penis OFF and built a new one, attached it, and it worked. This was done as a proof of concept (in other words, to show it could be done). This WILL be available to you within ten years.

http://www.webmd.com/news/20060523/lab-grown-replacement-penis-in-future

In ten years you will be 30, in the prime of life. You have the capability of getting a functioning penis that would work for sex within six months should you go the surgical route. You could have a recontructed penis within ten years. These are facts - they may not be what you signed up for when you decided to become a human who likes sex (IOW, an adult like us) but we are all in the same boat and are getting through, all of us, with options just like you.

Finally, you have posted here twice. You might gain more from this community in several ways. YOu could post more here, and gain support from those of us, who, though we have not met you, feel greatly for you and what you are going through - and we have been or are going through the same thing. Support is a good thing.

Secondly, you could learn about what you could be doing here. By reading and listening, you might find that you could A) see a better urologist, and find out who that might be, B) start on more "experimental" therapy like Pentox, C) start using the VED and learn how from those who have done it before. In many many ways, coming here will potentially help you in terms of learning, and DOING something for yourself. Depression has a terrible way of keeping us from doing what is good for us.

Finally, by posting here words of support for others, you will come to see that when we start to help others, it helps our own state of mind.

All these suggestions are good things, and I strongly encourage you to follow through on them. You absolutely need better help with your psychological state, as it is a threat to your life right now.

So please stay around and learn, post, and hopefully start to take steps to get better.

Tim

Andy

Take it from an "old cuss" there is something that can be done.

After a failed implant attempt 10/07 I started my quest for the best doctor in the southeast for help. With all my problems a local doctor said that I probally would have to have complete corporal reconstruction. For that no one in Memphis had the skills so I was refereed to Dr. Milam at Vanderbilt. I do not want to go into a long story here but you can read my History under Our History thread.

To make a long story short I did not have to have the radical corporal procedure. The right doctor can be a blessing. General practice urologist do not have the skills you need a penile specialist or a Male Sexual Function specialist.

Good Luck and remember never-ever/never-ever/never-ever give up. Like Tim says there is something for you.

Jackp

Are there any groups meeting in the Chicago area? I know this may sound weird, but I would really like to talk to someone face to face about all this. I'm a patient of Dr Levine's - I'm in the Xiaflex study - I'm currently seeing a therapist (for a lot of things, but this is a big one of them). I would be willing to host. Is anyone else feel the need to get off the computer & into real time? Has this been tried before? Are there reasons this is not a good idea? I think (hope) I'm in the placebo group. I'm 70+% curve & trying to figure out where to go next. I'd just like to talk. McNally

ps I moved this - this seems like a better fit than "General Comments"

McNally,

I know of no reason a face to face support group would not be a good idea other than the problem with finding enough of a concentration of men in one local willing to meet.   While we have thousands of members, lets guess that 1500 are in the U.S.  Let us then guess that half of them are regulars (active on the forum, (700) and that about 500 of those are willing to meet face to face.  These are VERY rough guesses but that would be about 10 representing each state.  With that number I am sure there are some areas with a concentration that could support a meeting but most could not.  Local ads may pick up a few more.

The PDS certainly supports your effort and wish you well.  If you care to post information we encourage you to do so.

Mcnally,

Hawk is right, not enough people and they are to scattered.  However if you talk with people via pm, they may be willing to call you on the phone and talk, sometimes talking is good to heal the soul, even if it has nothing to do with peyronies.  To have a local meetup you'd almost need another topic like prostate cancer, or ED to draw enough people to make it worthwhile, and this would defeat the point of a peyronies meetup. 

Comebackid

McNally

If you are a patient of Levine and you are set on having a support meeting group - which is a great idea - book a room somewhere,  ask Levine for his help in maybe distributing a mailshot to addresses of patients of his in the local area and see who turns up. If he is a good guy he might let you use his clinic, which would give people more confidence it wasn't some sort of set up. You may be surprised, sometimes all it takes is to ask.

Thanks for all the information guys. I esp like UK's idea of involving Levine & I'd like to see if I could get any interest from a counselor to maybe lead or moderate. But to start, if just a few (2 or 3) of us can get together to talk (vent, whatever) over some beers or coffee I'd be willing to organize, host, whatever. Anyone here from Chicago, please send me a message if your interested & we can give it a shot. In case I haven't mentioned before, I'm 58 & in the western suburbs, but get into the city frequently.

As suggested, I talked to Dr. Levine yesterday about the idea of a Chicago area support group. He felt that there are more than enough people in the area to "support" such a group (no pun intended)  :D  It's just a matter of reaching them & seeing if they'd be interested in this type of group. He said he'd be willing to distribute information about such a group to his patients. He also offered to come speak to such a group! And finally, he gave me the name of a therapist who I might interest in "facilitating" such a group meeting.

All in all, not bad! Thanks very much for the idea UK! Now I have to get something together to distribute, thru Levine's office, here, ads, whereever. If anyone has idea for a group that I could use as a model, please let me know. I'm thinking of looking into things like cancer support groups and such.

Again thanks all.

McNally:

I work with a cancer support group in my home town known as US TOO. This is an International  prostate cancer group. Google the name and you will find the phone numbers and a whole lot of information about them.

They will be glad to assist you in forming a local chapter of US TOO or perhaps your own group as you see fit, etc.

Old Man

Quote from: Old Man on March 11, 2009, 10:48:55 PM
McNally:

I work a cancer support group in my home town known as US TOO. This is an Internation prostate cancer group. Google the name and you will find the phone numbers and a whole lot of information about them.

They will be glad to assist you in forming a local chapter of US TOO or perhaps your own group as you see fit, etc.

Old Man

does the group raise money for prostate research?

Hitman:

As far as I know they do not do fund raisers for promoting research. They do try to lobby for research money where all possible. They have not been too successful in doing this. We as a group do local work in clinics for the public at any function we have the opportunity.

We wish that more attention could be placed on prostate cancer research by the government organizations responsible for allocating funds, etc.

Old Man

I am at a loss.. I am 19 and I have disease that effects old men... I have not even begun to experience my life yet.. I am but a freshman in college and I won't even get to experience it to the fullest.. Why me? What have I done to deserve this? This baffles me to no end.. I feel alone.. I feel worthless. I just want to go back in time and tell myself to take it easy. Tell myself not to do this or to do that. Tell myself something. What am I to do? I am but half the man I used to be.. I can't even feel affection for my current partner anymore :'(. I can't feel the same joy I have always felt. I don't feel the same anymore. Life seems meaningless.

I have spent my entire life experiencing the discipline of abstaining from sex until it was right. The moment I do feel it is right, it is instantly ruined.

Every time I ask the Lord himself if I am going to be alright, I get a strong resounding feeling of affirmation. I will be alright. But when? When will I find relief? In what way? Will this case mysteriously disappear? Is it possible that I am not only an anomaly in the age group, but an anomaly in the disease pattern itself?

My doctor told me I will make a full recovery. I must confide in that. Until I find out I will not be ok, I must assume that I will be ok.

All I want relief from is the pain.. The pain.. I can't stand it. It is a constant reminder that I am some freak of nature. It never goes away, it never subsides. Whatever I do helps nothing.


:'(

RichB, I know it's very depressing and panic-inducing dealing with Peyronie's, but you should also realize the majority of men dealing with Peyronie's have fulfilling sex lives.  It's rare that Peyronies Disease stays so acute and causes a deformity that actually prevents sex.  Even in that case, there is surgical intervention that can help remedy this.  From reading your posts, I don't think it's even clear that you have Peyronies Disease - at least you're not showing any noticeable deformity, correct?

So, I understand your pain and despair, but also realize most of the guys on this forum have Peyronies Disease and most of us also have sex.  Peyronies Disease isn't a death sentance for sex in most cases, and while you may feel that way now, it is highly likely you'll learn to deal with it and enjoy sex once again.  I suspect you strained a ligament or something and as your doctor says, you'll see a full recovery in time.  Either way ...

I'm pulling for you, friend,
Nemo

I have noticed some sort of deformity. It isn't strong, and it isn't something that is life ending so to speak, but it is there. There is only one thing I am unsure of though. I have always had some kind of penile deformity, the one that happens since birth. I haven't had an erection feel the same since I have had symptoms. I have speculated with some that I might be passing a kydney stone or something of the sort which is actually causing the pain. The pain itself seems to fluctuate. When flaccid, the penis never actually becomes "softly" flaccid, and it seems kind of swollen. Every doctor I have seen says everything looks normal. It feels hard when flaccid, and after I move it around a bit and squeeze it and such it kinda gets "back to normal," y'know. The pain is now on the top right before the glans on the shaft. But it does seem like it bends more than usual when I am getting an erection.

As far as I know, a months time since any trauma is way too soon to develop any symptoms or signs of peyronie's... But who knows, I have had doctors tell me that it could happen and doctors tell me its highly highly unlikely.

I am scared. Very scared.

Oh, and I apologize, I mean no disrespect when using the term "old men." I come from a long line of long living "manly men" and I know that being old is in no way a bad thing. I would have never gotten through most times in my life with all of your infinite wisdom. I hope I can be as much a help as you are to people some day.

Ronald

The psychological aspect of peyronies is the strongest emotion a man can have.

Most men here understand your pain. The pain (emotional) is not between our legs but between our ears and the sooner we accept that the better we will be. I have been dealing with this for 14 years and never-ever/never-ever/never-ever gave up. When you are less endowed like myself the loss of about 1 1/2 inches would put you down if you let it.

Surgery is the option of last resort. Try the VED exercise. After 13 years I gained back about 3/4 of an inch. If the three cylinder VED is not available in your country the single cylinder will do with just a little modification. You can read about that on the VED thread and if you have a problem or question Old Man will be more than glad to help.

Circumcision is a personal thing. In some cultures it is normal in others it is not. I was circumcised at 5 that was 61 years ago so I know nothing else. I have a friend that had to have a urethral stricture repaired in his penis about 3cm. They used his foreskin for the graft and he is now happy with his outcome. Like I said surgery is the last thing you want to do.

Your partner seems content with you the way you are. My wife of 40 years never complained and we had an active sex life even when I was 98% impotent for the three years leading up to my implant. Your partner can be your best line of support, lean on him some and reap the reward.

Just a reminder, post under the appropriate title. You can read my story under the Our Histories section. Any question feel free to ask or send me a PM.

Jackp

jackp!!!! please help me out! your friend with the urethral stricture!!!! do you know any of his symptoms? and explain his outcomes please! i believe i have a urethral stricture and well its been driving me mad. if you could please please get back to me it would be beyond appreciated. thank you.

richb i am experiencing swollen hard painful flacid penis as well. just keep trying dude! im not a professional but when a urologist tells me nothing is wrong i don't care because i know something is wrong. you can't give up man. im 18 and we have to keep strong. our futures depend on it. i have been extremely depressed and dropped out of my high school. its sad but i realized i really need to grow up regardless of my condition and graduate high school. i let this get to me and well it destroyed me mentally and even physically. do you have any hobies? skateboard? play music? whatever your into man keep at it and keep trying to get help. be strong and you will survive it. people have defeated so many things im telling you man there is help for us. even if worst comes to worst life isn't only about sex. there is sooooooo much more man! you into any extreme sports? look at travis pastrana dude. double back flip are you kidding me? i saw that live and was amazed. you should watch his show on mtv nitro circus. it shows you how much fun life can be! and it has absolutely nothing to do with sex! it sure as hell is painful but ill tell you what i rather risk and be hurt to have fun then die depressed and lonely. crap i rather die then be like this.

despise
My friend with the urethral stitchery is doing very well now no more problems. I will tell you as much as I know.

He was having a hard time urinating. He had a couple of surgeries here (Memphis TN Area) by a well known urologist and it only helped for a while. After the second failed attempt he pressured the doctor more help and he finally referred him to Dr. Milam at Vanderbilt (Nashville TN).

His stricture was 3 cm in his penile shaft. To do the procedure they had to go in and remove 3 cm of urethra and replace it with a graft. He was never circumcised so the graft came from the circumcision. He had to ware a foley cathater for 7 weeks. Make a couple of trips back to Nashville for follow ups.
The surgery was "23 hour" out patient.

Now it has been a couple of years and everything working well. I asked him about the circumcision and he said he gladly gave up the foreskin to relieve the stretchier.

The doctor did tell him that in time he may have to have an implant because of the damage to his penis but so far things are working great.

A few weeks ago his wife and I were talking and she knew I had just came back from Nashville. She said how was Dr. Milam and how great he is.

Note: There are very few doctors like Dr. Milam. He is a Male Sexual Function Specialist not just a general practice urologist. I was talking with the rep from AMS the other day and she said that he would take on difficult cases most doctors failed at. My case was not a stricture but peyronies, ED, venous leakage and corporal fibrosis. The head of the Department of Urology at the University of TN Medical School Memphis could not help me. The doctor that punctured my urethra in the first failed implant is the head of the largest urology practice here. Dr. Milam fixed his mistake and now I can function normally again. :)

Jackp

Despise,  Why are you posting about physical aspects of Peyronies Disease under psychological component topic???

These posts will be moved.

One of the hardest things that I have been coping with these past couple of days is the realization that I will never be the same again. I will never gain the feeling and ability that I had before I developed this condition. And that, for me, is a very hard thing for me to grasp right now in my life. That, along with the feeling that among my peers I am completely and utterly alone in this struggle makes it more and more difficult for me each day. I almost can't take it.  :-\

RichB - That's the long road we all have to walk, but it's not necessarily lonely. We're here for you in this (albeit limited) capacity, and there are always people who can help you. I've dated a couple of wonderful girls during my three years of having Peyronies Disease - none of them cared. My current girlfriend said something that shocked me when we were being intimate - "it's so smooth" - it's something that I'd heard before, but not after I'd started developing cords and plaques in my penis. I viewed my member as this twisted, hard, disgusting looking thing - and she barely noticed. She thought it was beautiful.

So there's a perception issue that is only going to go away with time, as you live with the disease. Thinking of yourself as "broken" is natural given this horrible disease, but there is much more to you than your junk - and there has never been a better time to be plagued by this disease. There will be a cure in our lifetime.

Speaking as someone who is currently witnessing HEALING in my penis, I am glad I kept up the hope. We live in a time where they make pills to get you hard - at first I kicked myself. 25, and needing Viagra? What sort of a real man my age would need that? But I was caught up in some faux-masculinity, not even realizing how lucky I was to have something that can help me have sex when, a decade ago, it would be much more difficult. How many of your friends know your penis size? Your sexual preferences? There is no shame in this disease, because the only people privy to it are you, your doctors, and your lovers - all of whom shouldn't judge you, anyway.

Medicine can cure most ED, and there are treatments you can use to try and treat the symptoms of Peyronies Disease - but the latter is a slow process. Pentox is a godsend - use it!

As far as your desperation...think of the myth of Pandora's box - all of the evils of the world flew out in a rush as soon as the box was opened. At the bottom was hope, not rushing at the world but waiting to be found. Pain and doubt are easy, they come first. Hope is what you cultivate, and grow. Don't lose it, even in your darkest moments.

Thanks for this post, Ocelot.  So much truth to this.

All,

First, I want to thank several board members for personally offering me hope and encouragement.  Because of you all, I understand that this condition is manageable and may not permanently interfere with our relationships and overall mental and physical health.

I've read many, many posts, and I pay particular attention to the posts of the board's veterans. 

From the personal messages and forum postings I have read, I have distilled that it is not unusual for our condition to initially cause a negative impact on one's mental health.  Okay, this may be stating the obvious in most cases.  But what I am trying to articulate is that even some of our board's "heroes" had to overcome initial and sometimes ongoing psychological battles.

I'm wondering if anyone has gone through an initial period of just not being interested in having sex with another or not being interested in masturbating?  For me, I've been so focused on understanding the condition and pursing a proper treatment that I just don't "desire" sex, and instead just "desire" to work on treatment.

I'm not sure if that makes sense, but I've reached a point where I am confident that I am pursing a great treatment program: Daily VED use, pentox, L-Arginine, ALC, Vit E, and a little Vit D.  Also, I have an ultrasound scheduled in about 2 weeks.

So, I'm starting to relax and disassociate the condition with the natural desire to have sex.  But, I think that I may hit a rough spot after my next uro appt when they do the ultra sound in a couple of weeks.  I've noticed that I sort of get into a depression following a uro visit -- or, maybe it's just visiting hospitals in general.

I have had two visits with two different urologists.  Both experiences were fine.  The first uro was honest and professional, referring me to the second uro.  My initial impression of the second uro is that he is on point with many of the prominent peyronies's disease physicians (Levine, Lue, etc.).

Anyway, I guess what I inquiring about is if it's normal to go through an initial period of trying to get mentally adjusted.  I get the impression that this varies with the person. 

Thanks for everything.

CF

I don't think there's a single member on this forum who isn't currently experiencing some kind of mental issue regarding Peyronie's Disease. Some of us can comport ourselves better, perhaps, but it's always a taxing thing.

Take my post below: I said I was experiencing healing - and I was/am still - but a few days after posting that, I developed a new plaque. The best way to make God laugh is to announce your intentions. That put me in a funk for a few days, but since I've been grappling with this damned disease for three years, I turned it around emotionally pretty quickly and just started working at it again.

People lose their limbs every day, they get diagnosed with leukemia or have to have vital organs replaced. People die. We are not lucky, by any means, but as I was telling another member via PM -- Life in itself is suffering, and we are tasked with mitigating that suffering however we can. You can't cure Peyronies Disease, you can only hope to treat it and try to turn what is often emotionally and mentally damaging into something fortifying, enlightening even.

cowboyfood,  the answer is yes.   I'd describe it as a period of shock during which you sort of feel disassociated from your normal sexuality.  You feel just shut down, you're just not thinking about it like you used too.  I think it takes a long time for this to pass - it did in my case - but the human brain is always adaptable and eventually your normal impulses return.   And like you say, it seems to be all too easy to obsess over the condition and possible treatments, and those thoughts sort of take the place of the sexual ones.

I can only speak from my own experience but what has helped me is to stop all attempts at treatment, stop thinking about Peyronies Disease all the time (I even stopped reading this forum for a few months), try to loosen up and restart my old patterns of behavior.  My wife and I took a couple of vacation trips and that helped a lot, while traveling we felt and acted more like our old selves.

I can tell you're starting to see daylight. It gets better from that point forward.

New pains. New plaque? More curve?

It seems that every time I get to the point of accepting my curve and moving on, a new pain comes along and throws me into the same limbo that I have been through so many times. I am getting extremely sick of this condition. I don't know what to do anymore.

I have no wife, no girlfriend, nobody that understands in my life, and I don't believe in religion, so I don't have "God" to turn to.  Oh, and I'm only 29, so I'll most likely have to deal with this for the rest of a long, miserable life.  Starting to feel like I just wanna end it all.

bummed out - relax - read the threads - its all here - we have all gone through this dark passage - there is light - trust me and you will get there - its hard - get on the meds and ved asap - this is a sure way to tackle this head on - dont give up as this is a natural reaction - take your time to get into the treatments, manage the pain ( i do everyday) and move on - !!

This too shall pass.

I suggest you read all of the threads in the child boards that Angus created for new members.  You can get a vast education on all aspect of this disease without plowing through ten times as much material here in the main forum.  The idea is that you read and learn there first and post questions or comments here since that area is not for comment.

I suggest you read this topic first, https://www.peyroniesforum.net/index.php/topic,449.0.html  This is an area where there are proven methods for seeing immediate improvement,  an area whewre you are in control.

Good luck

Quote from: bummedout on June 02, 2009, 07:11:06 PM
I have no wife, no girlfriend, nobody that understands in my life, and I don't believe in religion, so I don't have "God" to turn to.  Oh, and I'm only 29, so I'll most likely have to deal with this for the rest of a long, miserable life.  Starting to feel like I just wanna end it all.

I hear you man, I really do.  I'm 25, the exact same situation.

Not wanting to 'end it all', but I'm seriously fed up with this, its been going on for far too long, and I could care a less how embarrassing it is anymore.  Lived with it since I was a young teen.

I'm calling up the urologist who specializes in this tomorrow, going to kick and scream until I get a earlier appointment.  (4 MORE months of waiting at this point). 

Like Hawk said, there is some good reads in that thread.

I would like to point out that the younger a person is the greater the chance that medical help will arrive in time to improve our condition. At my age it will come too late. The FDA and the drug companies seem to move at a snails pace when we are waiting for that miracle.

@bummedout:

I know what you're going through and so do many of us here (I'm 30). Remember that every success we achieve in life is because we overcome an obstacle of some kind and Peyronie's is just another one of those. When I get angry and pissed off at this stupid disease I focus on my running and physical training. The feelings of inadequacy I feel because of changes to my penis are changed to feelings of power and accomplishment when I run that extra mile or hammer out those last few pull ups. I can't control what's happening down there, but I can control what's happening to the rest of my body. The best way to make this disease an insignificant part of your life is to focus on whatever makes you feel powerful and in control (within the bounds of the law, of course). It's been mentioned before that the tough thing about Peyronie's is that in most cases you don't want to share with people why you're down in the dumps. The great thing about bettering yourself in other ways is that the confidence you gain can be viewed by others. Best of luck and hang in there.

-Skjald

its becoming frustating day by day..even being on all the possible supps I am having another bout I thnk which has left me completely shattered.. I have been batteling this since 23 and about to turn 26. Living your prime life without sex is one thing nobody wants & I thnk thrs very little "other interests" at this age... I am not down yet but I have started to feel I cant continue like this for long... :-(

Its tough I know but now its becoming unbearable.

This can be accepted and applied or shrugged off.  Unlike some aspects of physical illness that are beyond our control, we can (and we alone are responsible to) control our attitude.  Attitude is a choice.  That does not mean it is easy but we can determine our attitude rather than simply being affected by our attitude.

Viktore E. Frankl was a medical doctor.  He was also a professor of neurology and psychiatry.  In addition he also held a doctorate in philosophy.  In the book Man's Search for Meaning he shares the great truths he learned under the adversity of being a prisoner in Auschwitz, and Dachau. His wife parents and entire family were all killed in these heinous camps.  Only his sister survived by escaping.  Through more agony than the average mind can comprehend, Viktor Frankl fought to survive and help others survive, not just physically but mentally and spiritually.  He soon learned that their brutal adversaries could do anything to them anytime they wanted, except for one thing.  Even in the most absurd, painful and dehumanized situation, we saw those that tried to comfort others, those that would give their last morsel.  They were few but they were sufficient to prove that we alone can dictate our attitude.  We cannot be stripped of that.  It is our gift alone to exercise control over.

It is essential we learn to apply these principals because it is the nature of adversity that each person's success and happiness in life depend largely on how we respond to adversity.  This we can master.

I'd like to mention that it is important to do something the psychological aspects of the disease, not only because it will make you live a happier life (which is in my opinion the most important part), but chronic stress can have very bad effects on the body. One of which being lowered Testosterone, which has been linked to a cause of Peyronies Disease and a whole slew of other things. So, find a doctor, get some exercise, talk to somebody, do something to get this burden off of your chest. Write, paint, start a hobby, anything. Learn an instrument (my personal favorite). Also, remember you have brothers here to help you along in your journey to recovery, and even though recovery might not be 100% in some cases, ANY and ALL help is GOOD.

hey, im not sure where to write all this, i just joined.
im 18
penis curves to left
soft errection/trouble getting one at all
never experienced pain
i have a ton of questions, is there any chance because im younger it will get better,is there any way its something else, is it really worth spending time and money to try and fix it even though theres not a known cure,tips on coping with this would be good to...not gonna lie this sucks
thanks

Quote from: k278913 on July 03, 2009, 04:42:31 PM
is it really worth spending time and money to try and fix it . . .

k2,

Why do you believe you have Peyronie's Disease? Have you been diagnosed by a physician?  If not, I think you should see a reputable urologist before you jump to some conclusions.

What part of the country are you located in?

CF

I agree with cowboyfood. Until you get a diagnosis it's difficult to know for sure whether you're in the right place or not.

I'll just mention quickly that if this curve has always been there, then you do not have peyronie's. You instead have a congenital curve. If the curve appeared suddenly (or over a period of months) along with the erectile dysfunction, you should get checked out as soon as possible as it could be peyronie's. This may be a bit embarrassing for you, but it's best to know where you stand in relation to health problems.

Peyronies sufferer prognosis differs from person to person, but there are oral treatments and devices such as the VED, which may have been somewhat successful for some. The earlier you start on a treatment plan the better, but again the key first step is to actually find out if you are suffering from peyronie's.

well considering ive spent every night the past 6 months researching it, im pretty sure i know whats going on. my penis curves left and seems to hang..some days i have trouble getting an erection at all. i definately wasnt born like this. and at 18  the last thing i want to do is ask my parents for a vacume for stronger erections, lets be honest there is no real cure right now, what would be the point of embarissing my self and asking to hear that from a doctor. its hard for me to stay positive. i cant even imagine going to college and trying to explain to ever girl i get close to i have disease in my penis.

Most girls don't know about Peyronies Disease. Most girls don't care. About the erections, it's an especially sad thing for a young man to have this (I'm only 25, and there are plenty of people here of all ages, young and old) but we're lucky that medications exist to help you have sex. You have to be proactive, though, and not give up!

Everyone has or will have great trials in their life with disease. This is yours, and ours. Perseverance against the odds is what living is about, at its basic function. We have to stay strong and do everything we can to help ourselves until that cure or effective treatment comes around. Being young gives you a lot of time, and that is always something to be grateful for. There will be a cure within your lifetime, and hopefully sooner rather than later.

Peyronie's can indeed be a very upsetting condition to have, as is something that without a doubt tests a persons character. If your curve is significant, you may eventually be able to consider surgery, though likely first the VED (and as you state that may mean that you'll need to tell others about your condition, either that or save up and buy a VED yourself?). If it is minor, and achieving an erection is your primary concern, then there are certainly options out there that will likely allow you to achieve an erection via viagra etc. I'm sorry that this has happened to you.