Psychological Component - Coping with Peyronie's Disease

[Hawk]

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

[Old Forum]

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.

[Old Forum]

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.

[Old Forum]

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 Forum]

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

[Old Forum]

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 Forum]

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

[nick]

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.  

[marti]

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!"....

[nick]

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.  

[Joshua]

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.

[ThisSux]

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.

[mezz]

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.    

[Michael]

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.

[j]

 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.  

[Larry H]

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

[paul]

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

[Hawk]

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

[steven]

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

[paul]

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.

[bob]

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

[paul]

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.

[bob]

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.  

[furtil66]

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.

[ThisSux]

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.

[herk]

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

[totheleft]

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

[emersonchief]

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!

[Larry H]

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

[Rzz]

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

[SteveW]

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.  

[Barry]

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

[Steve]

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  As Barry said, you're certainly not alone!

[Hawk]

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:  

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 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.

[Old Man]

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

[j]

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.

[totheleft]

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

[SteveW]

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

[Davidw]

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  

[jess99504]

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  

[SteveW]

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.  

[Angus]

 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  ) 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.
 

[SteveW]

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.  

[SteveW]

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.

[ComeBacKid]

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

[zigwyth]

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

[howcanthisbe]

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.

[SteveW]

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.  

[Lunchbox]

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.  

[Hawk]

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.