Psychological Component - Coping with Peyronie's Disease

[Kimo]

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

[Liam]

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.

[ComeBacKid]

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

[howcanthisbe]

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.

[Liam]

BTW,

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

Liam

[Christine]

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

[George999]

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  

[howcanthisbe]

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

[RoyRogers]

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?

[Liam]

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

[Caring]

"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.

[DannyOcean]

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!

[Liam]

Thanks,

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


Liam

BTW, should we picture Frank or George?  

[DannyOcean]

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

[zigwyth]

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

[Mr BLBC]

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

[zigwyth]

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

[Angus]

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  .
   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.  

[Caring]

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.

[swimfly]

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

[Hawk]

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.

[Angus]

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

[swimfly]

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

[Hawk]

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.

[swimfly]

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

[Hawk]

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.

[Davidw]

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

[Hawk]

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.

[Tim468]

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

[IrishB OCD]

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

[Liam]

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

[DFormed]

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.

[Tim468]

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

[Davidw]

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

[Tim468]

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

[Hawk]

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".

[howcanthisbe]

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.

[Tim468]

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

[Tim468]

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

[George999]

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.

[Old Man]

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

[IrishB OCD]

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.

[IrishB OCD]

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

[Liam]

Irish,

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

Liam

[Old Man]

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

[misterb]

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.

[ComeBacKid]

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

[Iacomus-Magus]

"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

[misterb]

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.  

[Liam]

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.