Psychological Component - Coping with Peyronie's Disease

[antony]

To Hawk:

you say you were under pressure, coz it was hard to make live this crap to your wife you love and who loves you, and who is the most important relation ship of your life. I understand. But i would add , so you have the luck to have lived such a love relation. Because as for us, we will not discover it. Of course, i have had lots of girlfriends, YoungPD too. But a wife, who loves you, suport you, coz you have been maried for years, and you live the one for the other, we will never discover. Moreover, life is diferent now. I see my father when he was young, and being young now are totally diferent things and worlds. Now it does not exist girls of 20 or 25 who nicely think 'its not so important if he has no penis, because i love him for what he is'. No, women are liberate -at least where i live- , love sex too, say 'we have the time to be married later, we have to 'have fun' now. No girl will make her life with a sexual disabled.
Maybe the suffering is the same at every age, it's universal. But the difference is the situation, they are not the same when something hapens at 20 or 60.

Tim:

We are not define by penis alone, but its a part of us. I would add that its with that you give life. If you were 25, with no fix girlfriend, would you date a girl with no sex, who won't be able to have any sex relation with you? With who  you could not share intimate moments, and you would have no chance to have a future, kids and family with her? I don't think so.


Concerning implant, and YoungPD knows the same, if you are well informed you know it's not a solution. Of course psychological part (never have a natural sex again) is important, but there is mainly the physical part: it shrinks penis a lot (which is already really shrinked), it makes lose sensations more, it's totaly mechanical, and you have to change it after some years. Worse, there can be errors of surgery, infections, etc. Moreover, you can't practice sport anymore, with a part of prostesis in belly, another in penis and another in testicles. It's not a solution.  And a proof of it: doctors DONT ACCEPT (at least here) to put it at a person under 30-35. And don't want to take these responsabilities.


Anyway i was just as for me answering and confirming what YoungPD said, i know that morally nobody can help , if nobody can heal us. Its easy for somebody to say 'accept this'... Accept one? To have had an accident -very rare one- and lost what you were from the day to the other? Like a sudden death being alive?

Anyway, good luck to evryone here.  

[Hawk]

Anthony,

You said

I understand. But

You manage to always come up with that "but"

You say it is easy to just say accept this.  You are absolutely right.  Talk is very easy.  The hard part is doing the work.  Thats your part of the job.  No one can do it or you.  The alternative is for you to win the argument and convince yourself that your life is so much worse than others, that it is just too difficult.  The thing that I love about life is that we get to choose our attitude about every difficulty we encounter and nothing could be more fair than that.

Choose wisely!    

[jackp]

Hawk
I do not know what to say to these young men. I know when I was there age, Young, Dumb and (well you know),  probally would have have most likely felt the same. The one thing I have learned is that a Penis does not define you as a man.
I'm 100% impotent, the pills, shots or nothing else helps. Have I given up? NO! Failed attempt at an implant, have I given up? NO. Am I married with a caring wife? YES!!! Are there other women out there that will care for these young men? Yes!!! Part of there problem is they are looking in all the wrong places, SEX IS NOT LOVE and LOVE IS NOT SEX.
When they let go of there problem and find true love the sex will come. It may not be penetrative sex but then maybe they will start to fight to find a way to fix it.
Do not get obsessed with fixing it but do not stop looking either.
I have an appointment with another implant surgeon Thursday. Will he solve my problem? I hope and pray so. If not will keep looking and never ever give up.
I am not good at putting my thoughts down. I wish these Young men well, and Gods Speed.
My$.02
Jackp

[Hawk]

Jack,

I would call that one of the best posts I have ever read!

Good luck my friend

[antony]

Hawk,

I know no one can do it for me, or for us. i don't ask it. The only thing i want you to understand (i speak as for me), is i'm not weak or whatever, it's even the contraty. But this thing touches too deeply. You know about the subject. So just tranpose it in your yougness, and moreover nowadays (and maybe yes in the wrong places, but we don't always chose where we live). But that's not the matter. If there would be hope, i / we would fight hard to recover. But here is not like somebody injured who have to do lots of hard exercice to recover. There is no way to recover here. An example: take 2 football players : one will have a serious injury, the other will have the 2 legs paralysed. The 1st one will be depressed, but will fight and work hard to recover. The second has NO HOPE to recover, he will not re walk again. The 1st one you can say 'be strong, don't complain, and fight'. The 2nd one you will say 'its life, you have been f*** man...' I can make the comparison go further: (it's for comparating with ages and situations): if the football player who is paralysed, is at 35 at the end of his carreer, he has already lived his dream, done the majority of his carreer, have lots of fans and saved lots of money.Its horrible, but more acceptable. If he is paralysed at 20, at the begining, 1st he has to fight with this crap, but the worst : he will always think 'i could have done a wonderful carreer, i could have taken pleasure, have money, have fans, do my dream but.... i won't. It was for me, but accident forbids me.' so he has no more life, but worse , he knows what life he SHOULD have had. Don't know if you see what i mean. Anyway i don't complain i don't mind in fact, if 'its life'; so it's life. Life has just not respected us.

Jackp: you confirm what we said: maybe you have had same problem, it's hard to live, etc, but you tell it yourself: 'am i married with a caring wife? yes!!!'. I supose you met your wife before being 100% impotent. So you have shared good moments with her. So now you are 100% impotent she supports you. I suppose you would have not had this lovely wife if you had been 100% impotent when you met her. Would you tell me the contrary? If i was 60 and married since 30 with a wife i have shared so good moments and who suports me, i would accept more (even if i see my father ie, is still atracted a lot in sex at 60, so...). But that's not the case.
'sex is not love, and love is not sex', maybe not, but it's a big part of it. Tell that to all the guys -and girls- of 25 you will see their answers. I dont agree when you say 'when they let go of the problem and find true love sex will come'. That's wrong. Sex won't come , even with true love as you call it, coz penis is broken and calcified, libido with it. That's a fact. And for 'non penetrative sex', i don't know lots of people who like it. I still have a girlfriend, coz she knew me before that problem. She loves me yes. But that's a fact that it has destroyed so many things, coz if sex is not THE thing, it's the half of it. Half sex, half mentality. Moreover, to see your guy from so strong to so weak is a mess too. So, more than the sexual issue, its the whole person she knew who is destroyed.
Anyway i wish you good luck for surgery and hope it will be fine for you.

As for me i don't try to say we are alone to have a serious problem, and we are the only on earth to suffer, and the others have nothing, etc. It's not what i say. But i say, nobody can say to us, in our conditions 'its ok man, there is not only sex in life', or 'its not so serious, look some people have cancer'. The finality could be as serious as a cancer, some guys suicided for less than that.

[youngPD]

Hello again ,
I wanted to add some points to the words said by Antony. if I read his post I can almost swear it could easily be my post as well.

Not in vain it has been said before that you can not judge anyone until you had a chance to go in his shoes. well ,I am not trying even for a moment to somehow underestimate or belittle he pain and agony of anyone who is inflicted by this condition in any age however I need to say this again people ,you can't even imagine how it is when you get it so sever and so intense when you're so young and single. you have no clue what it's like to feel that your life is up before it even started.

When you have been with a loving caring wife for about 10-20 years or so ,had kids with her and built up a future together ,so even when you get it ,if you've been loyal and by her side when she needed you so she would probably be there for you in those unbearable moment. this is the significance of partnership and a real friendship between a man and a woman. but that exactly what makes you struggle an applicable one though I admit it's not an easy one either or. but with all due respect it's not the same.
The actual existence of your kids around you is indeed an emotional support, regardless of the fact whether they know about your issue or not. the fact that you've already built something and your previous infrastructure is standing there for you. same as with your wife ,when you deal with it as "a couple's issue" rather than a single lonely impotent man's problem.

Ad there is of course the outlook of your past present and future life. again ,with all due respect ,when you get it at 50-60 years old so at least you had a reasonable chance of having some wonderful sexual experiences for more than 20 years ! we won't have it. and although Antony and myself were with many girls as we were kind of "party boys" ,yet it is imperceptible to come to terms with the fact that from now on your sex life is kind of up.

If I speak for myself ,and I guess I can speak for Antony as well about it ,this injury and the consequent impotence and fibrosis ,brought about a kind of feeling that you would not be able to fully comprehend hadn't you had our type of personality.
Having this condition made me understand for the first time of my life (and I'm sorry for this comparison ,but it's the only one which illustrates it well) what is the feeling of those weird people who say that they are locked in a body which does not align with their soul.it is an awful comparison ,but it describes well how I and I think Antony too feel that whereas our personality is still the same as we were , I mean like very sexual and self confident with women and similar to being a Don Juan ,but our disability imprisons us and force us to suppress our own self being and personality to the level that we lost our right to be truthful outside and to present our real personality.

Going to bed with a girl when we are sexually disabled ,let alone in my case where my flaccid state looks shrunk as if I was 10 years old ,is unbearable.


I know all the shrewd and wise sentences I need to adapt in those days like : the serenity words of the alcoholists. like all those pep talk saying that it's worthless to worry about things you can't change etc. however,the point is ,for a person who's built the way my personality is built ,those words of accepting the circumstances ,are just not good enough.

And I am really a very strong person by nature and never gave up in many occurrences in my life. I never had an easy life but I always fought hard. but as Antony said before ,you can fight when you have a real hope. if there was even one doctor in this entire globe that would tell me that I needed to go through hellish 2 years ,including some very complicated medical procedures but later ,after this price I need to pay ,I would have anything close to a normal manhood of a 30 years old man ,I would honestly go for it with all my heart and power. if there was any doctor or experts to tell me that in this right moment ,there are some serious groups of scientist who would probably find a genetic solution o grow a new tunica in the labs next year ,with very good chances to succeed due to big funds donated there ,I would honestly make my best to fight back and even to donate my time and money for it.

Even if someone tole me that my penis tomorrow morning wont look like a little child's organ, that could be a good start.

But hey guys ,you know what's the real problem ? no one really gives a damn. doctors are with vitamin E and such for 400 years. there is no much of progress in damn 400 years. what the hell makes anyone think that something is going to ever change ? why ?

I can sure tell you why NOT. since they just do not care. why don't they ? since it is one of 6000 other "orphan" medical conditions. those are orphan usually for the small percentage in the population having it. they are orphan sometimes for not being defined as "life threatening". but guess what - fibrotic penis and impotence is INDEED life threatening. I would bet my life that many people without leaving a not ,just ended their lives when they got it in young age. but then again ,men tend to hide this problem ,so it keeps being "in the closet". no one really take this organic impotence out of the closet. not even one serious genetic work is being seriously applied nowadays. it's just not "photogenetic" enough.it has no Lobby. so we can keep talking and talking and debating an giving pep talks. I guess in 100 years the available options for cure will be the same.

And please do not delude yourself my friends. if the genetic engineers have already come up with a brand new bladder being grown up in  lab and transplanted in a cancer patient ,so with some funds ,they could have the same biological laboratories for growing new tunica. the splits of the cells is not so difficult to decipher by the current means.
It's just that no one gives a damn.so that's why there is no real hope, and with all due respect ,having this condition as an acceptable fact in my age and marital condition is just too hard to accept.

But I really appreciate the genuine effort of the people here to provide an emotional support. I can't ever discharge or belittle this as a valuable means to cope.

May you all be blessed,
Ron

[Liam]

The worst case of any disease is always your own .  Comparing your situation with someone elses is counterproductive.  So what if you have it worse or not as bad as someone else.  It changes nothing.  My heart goes out to all the young and older with Peyronies Disease.  Now that we have that out of the way, we all have to cope.  

[Tim468]

To Antony and YoungPD:

Antony said:

"But this thing touches too deeply."

The point that many of us are trying to get you to see is that you have a choice about how you react or feel. I have said it enough. I have immense compassion for you and sorrow for your pain. Now you have to do something.

Recovery from an illness does not mean (neccessarily) that it goes away. Recovery means that you get back that which you have lost that you can get back.

Sometimes you cannot get back all that you have lost. An amputee from Iraq may not ever get back his leg, but he can get back his health, happiness and the ability to walk. So if you continue to define recovery as "I want it to be the way it was", you will continue to fail.

It is clear to me that you have not understood what I am saying at all - in the sense of showing a willingness to stop wallowing in misery and try to move towards wholeness. That is where you are right now - sad for what you are not, instead of thinking about what you can be. All the words in the world will not penetrate that sadness until you decide to take action yourself.

I know that both of you have taken action - gone to doctors, seen therapists, tried medicines, searched online. I am not saying that you are not trying to get better. I am saying that what I see here is an unwillingness to change how you think about yourselves.

Does it touch too deeply? NOTHING touches too deeply, ever. We are always capable of feeling better about ourselves. I see now that simply telling you this will not allow you to see it, so I am going to stop making this point. If you wait long enough you will learn it anyway.

Tim

[Hawk]

I have never in my life seen individuals so committed at seeing the bad and convincing themselves there is no joy left.  That is a disease far worse than Peyronies Disease and that disease does respond to treatment if you are willing to fight.  That is the disease that robs your joy much more than Peyronies Disease ever could.  People with SEVERE Peyronies Disease and ED find joy.  People with negative attitudes do not, unless they cure the attitude.

First I was told by Anthony that I could not understand and that my situation was not as bad because I had a loving partner.  Then he says:

I still have a girlfriend, coz she knew me before that problem. She loves me yes. But that's a fact that it has destroyed so many things, coz if sex is not THE thing, it's the half of it. Half sex, half mentality. Moreover, to see your guy from so strong to so weak is a mess too. So, more than the sexual issue, its the whole person she knew who is destroyed.


How is that different than a wife seeing her guy "destroyed" which was my very point that you now make about your loving accepting partner?

Antony, You also say "But i say, nobody can say to us, in our conditions 'its ok man, there is not only sex in life', or 'its not so serious, look some people have cancer'. The finality could be as serious as a cancer, some guys suicided for less than that."


You miss the point.  Some people commit suicide because a girlfriend leaves or they have acne.  Suicide is not a measure of how bad acne, or Peyronies Disease, or loss of legs is.  It is a measure of how bad the mental state is.  You illustrate the very point that you refuse to understand.  Whether a person commits suicide is within their full control.  It is NOT a product of the disease or situation.  It is the result of their attitude.  Mankind has the full power to fight and totally change attitude.  There are programs to help.  If you cannot change your penis, change your attitude.

It has also been said by both of you that "you can't even imagine how it is when you get it so sever and so intense when you're so young and single. you have no clue what it's like to feel that your life is up before it even started."  My father was paralyzed at a very young fully healthy age.  He was an intense, active, physical man when this happened.  He was dependent on disability checks for an income and laid in bed most of his remaining 25 years.  He never expressed anger at the drunk that ran over him or how he was cheated.  His secret was to focus on what he could improve.  He became the best read man I ever knew and h was a joy to talk to.  My cousin became a quadriplegic when he was 15 yrs old.  He has only very limited use of his arms and is strapped in a wheelchair.  He just passed the bar exam at 31 yrs old.  He has little hope of ever having a "normal life" but he found things he could do and dwells on those things.  He has has a swimming pool he could drive his wheelchair into any time he wants but but instead of causing suicide, his problem made him an attorney.

YoungPD said "when you get it at 50-60 years old so at least you had a reasonable chance of having some wonderful sexual experiences for more than 20 years ! we won't have it. and although Antony and myself were with many girls as we were kind of "party boys"  Then you had more sexual experiences than many (including my cousin), probably more than I did, so now, remember those, if they are important to you and move on to new meaningful relationships, occupations, and hobbies.  Add new meaningful intimate experiences to the party experiences you have had.

YoungPD said Going to bed with a girl when we are sexually disabled ,let alone in my case where my flaccid state looks shrunk as if I was 10 years old ,is unbearable. That my friend is what you can change.  I have laid in the dark with tears running down my cheeks without my wife knowing during sex acts because it only reminded me of my loss.  I am over that and you can get over it too.  Peyronies Disease twists the brain more than it does the penis and you are dwelling only on the organ you do not have total control over. I guess that relieves you from the responsibility of changing what you can.

YoungPD, you say "however,the point is ,for a person who's built the way my personality is built ,those words of accepting the circumstances ,are just not good enough".  Are you still unaware that you build the type of personality you want.  It is not like your height.  You can change your attitude and many aspects of your personality with work.

fibrotic penis and impotence is INDEED life threatening. I would bet my life that many people without leaving a not ,just ended their lives when they got it in young age.  Acne can be lief threatening if we choose death over fixing our minds.

I guess in 100 years the treatment will be the same.  More dwelling on the negative.  Why not acknowledge that in  just the last couple decades surgery has gotten much better, implants now exist and have even improved, VEDs and traction is showing some success.  ED drugs have hit the market and new gene therapies along with other treatments are on the verge of exploding.

If none of this changes your mind maybe it will help those that can understand.  For those that cannot understand I will start your next post for you

Hawk, we understand everything you say BUT.....

[antony]

To all:

Just to conclude about that (coz it was not my goal to post about 'psychological component', i just reacted to what young Peyronies Disease said, because i feel exactly the same, about word for word), and to TIM: i know you have compassion , we don't try to accablate everybody, i am proud in my life, and my goal is not that everybody comes around me and say 'oohh my poor boy, i'm so sorry for you'. Both on a forum or in real life, i hate this, and since the beggining of this crap problem, i have NEVER 'taken advantage' of it (i mean i have never asked money to family, asked for people 'to be nice' because i was in crap, no, no : i have just consulted -non competent-doctors, tried parallel medicines, passed a lot of exams -not very pleasant-, looked on the net, spoke to other people, continued to try to go out, continued to see my gf, even continued to try sex -one again with the feeling of having damaged more the tissues-, etc, etc, and finally after all this fails, i'm just telling myself: ok if there is NOTHING to do -appart from accept-; if i have no choice than admitting life was stronger than me, i accept to die -so i agree with young Peyronies Disease when he says in fact it's life threatening problem-, and i will not ask anybody to cry or to be in sadness for that, i just 'leave hell'. Anyway, if hell is on earth, we can only go to paradise.)

Knowing that, i agree with you Tim, that every word will not change the condition in fact. Even the psychologist was so disapointed, and it's his job... After, we can agree with your words, and not be able to apply them, myself in my life i have often 'helped' other people in their problems , by speaking to them -even sincerly- and showing them that we can always manage to go out from a bad condition, that life is never finished, that we have to fight, etc, etc, etc. I was really thinking it, but... it was probably because i was not touched myself directly. Now i understand, when you live the thing, and when you don't live the thing, there is a world between the 2 situations.... And the person who doesn't live the thing will never totally understand what the other one feels.

So, thanks for suport, coz you have your own problems, and you're not obliged to help f**** so unlucky destroyed guys you don't know somewhere in other part of planet, but definitely ,in this precise case, we won't agree that 'we have to accept, be strong , and life will be nice again', coz that's not the truth.

you're right too by saying that sometimes we cannot get back all what we have lost. Even if we were in very sexual good form before that problem, and that is a big trauma, i would accept to recover like 80% (what is a consession) and i think youngPD too. I know i will NEVER be the boy, very self confident, alive and full of projects , ideas, and gf i was. But at least, if we could recover just a 'natural erection', even smaller than before, but with some sensation, not flaccid state penis diformed (coz in Peyronies Disease you have this diformity in erection, not at flaccid. When you are 100% impotent, and you have the diformity at flaccid, it means so that you have ALWAYS the diformity, so you see it when you wash yourself, when you urinate, when you change your clothes, etc, etc, i mean always, you can go everywhere or do what you want you bring it with you!!!) it could be acceptable. But even that, aparently, NO treatment can help.

To Liam: i don't totally agree with what you say : a person of 5 years old who have is leg cut, and a person of 70, you cannot say it's the same. One will have it for his WHOLE life, the other for the last years of his life.
I agree to say that the 'intern suffering' is the same. A leg cut will be as horrible at 5 or at 70 on the principle. But the consequences on the life will be totally different, and you cant tell the contrary.
In the same way a man of 45 who has his wife and who have a CURVATURE on penis in erection, but who can have intercourse, and whose wife is suportive, won't be as dramatic as a 100% organical impotence of a boy of 20 who has no situation at all.
And on this point, most people would agree with me. But, we never say that the man of 45 with his wife will not suffer. No, it will be horrible for him too. So , if it's the case, this person could easily understand the distress of the 100% impotent 20years old boy.
But, for sure, saying 'my case is worse than yours' will change NOTHING, definitely. But insisting on the violence of the case is important. Moreover, coz it's a 'non visible illness', it's horrible, coz people can't guess why you are in so bad mood every day...

I would add that i 100% agree with youngPD post, i would have said about the same.

So i conclude on that because anyway it will change nothing and as for me i don't want to 'ask for pity', no, it was just some explanations.

Hope you will all recover one day.

Antony

[antony]

Hawk, sorry i posted mine before read yours coz there was a computer bug, i read your post now

[antony]

Hawk, i understand BUT ....   ;-)

Hawk i just very quickly answer to what you mention in your post about what i said. (i wanted to finish on my precedent post, but just answer when you quote what i said).

The difference between the relations- the girl who sees the guy she loves going from so strong to so weak- is, one again, a matter of age; sorry to insist on that but it's important: 1st my gf and me have not been together for 20 years, so we have not lived so many things that would had made ourselves so proach in such a problem (like you and your wife i.e.). We have no kids,are not married, or things like that. Second, we are in our 20'ies, and a girl of this age doesn't have the same needs than a woman of 50, and that's a FACT. (or you don't know the behaviour of girls of nowadays). Third, -and i can admit you say it's stupid, but that's a fact too-, in some areas, girl needs to be with a strong person, coz life is harsh and rough, and needs somebody strong, not a disabled and depressed guy. So when she meets a very self confident, strong, lots of friends, atractive person, and when some months later this person is weak, no good looking, dark ideas, no more go out, no more strong, it's understandable it can be a real problem (that would no be the same in other situation, other age, other area in example). The best thing for her is to leave you. To conclude on that, i would add something that you will probably think it's ridiculous -i can understand- but that's a fact too (that's not only for me, but for all the persons of some areas), reputation has a big importance here too, and it's sometimes better to hide yourself when you have such a problem, than expoding it.

Then, concerning suicide, i don't agree when you say it's a result of mental but not of disease or situation: that's wrong. I mean: how do you explain that a guy who never had any suicidal ideas, who lives fully his life, who is full of ideas and projects, suddenly has this terrible accident (coz one again, it's not a Peyronies Disease, it's more an accident than an illness -even if the conclusion is the same), with such disaster consequences, with no hope after lots of trials, and wants to finish??? Isn't it the result of the situation, of the 'illness' -or accident? Yes it is. No illness = no loss of life= no suicide. So, as for me, it's a DIRECT consequence of that. A boy who has acne has treatments and hope to solve it. Moreover half of young people have acne. If he gets to suicide for that, he is mentally weak. Coz it's 'only' a matter of patience, coz after 1 year treatment, most cases are solved. I had some acne in past (not so much it's ok, but not so good looking), i didn't mind! i knew i was treated for that, and it would heal! Moreover i was not alone, and also i could hide it. Finally after one year, i had a clean face and never had acne again. Now, i can bet in one year (it's already several months), i will NOT have a 'normal' penis again, and sensations, and so as a CONSEQUENCE of it, my mentality, behaviour ,in fact the boy I AM (or i was...) will never relive again. So no hope. So dark ideas understandble. Not as a result of mental, but of the problem in itself, the penis problem, not the mental problem.
To conclude defintely, i would say: you can make the bereavement of a proach, to be in mourning of someone else, it will be very hard, but you can. But you can't make the bereavement of YOURSELF!!! You can't live being dead!!! It's not possible. I really tell it as i think it: i would SINCERELY have prefered to die in a car crash, to die on the moment, without thinking of what's happening, than living in this conditiion, and always telling myself; 'if i suicide, it's horrible act to take yourself life, and it's horrible when you think about all your proaches and people who like you; but i don't manage to stay like that, both my body and mind don't respond, dont resis't'. Being between life and death  every day, every minute, every second is an horrible state. I have read some testimonies of persons ,in other countries, that feel and say exactly the same, coz they live the same. It's also for what reason i can understand what YoungPD feels and says.

[Hawk]

Antony,

In you arguments make many absolutely false statements and do not follow logic thought processes at all.  What is important however is that you believe this: You are among the most unfortunate men on the planet and that happiness is not possible for people who have it as bad as you.  

How do you explain people with no arms and legs that feel a sense of gratitude, joy, and purpose?

Do you know who Stephen Hawking is?  He was unable to feed himself by age 30 yet he finds purpose and joy  as do millions.  In fact he cannot speak and is confined in a wheelchair.  I think he has yet another new book coming out.  Hmmmmmmmmm, Strange how that works.  Maybe we can just explain it by assuming he has a straight penis.  

http://www.hawking.org.uk/disable/dindex.html

Stephen Hawking Quote

I am quite often asked: How do you feel about having ALS? The answer is, not a lot. I try to lead as normal a life as possible, and not think about my condition, or regret the things it prevents me from doing, which are not that many.

Some statement for a wheelchair bound man that cannot move or speak.

[antony]

Hawk,


we can't agree about that: it means, that it's not important what problem you have, it will never matter, coz we can be happy inside, and other people have always worse than you??? No, no its not a possible way of thinking as for me.

I respect strongly somebody with no arm or no legs who is happy in his life (or just tries make to believe he is), it doesn't mean that everybody can accept such a situation. If i follow that, if you lose one leg, it's not so important coz other will lose two legs, and the person who will lose 2 legs, not so bad, coz you could have lose 2 legs + arms, no definitely, it's not because ONE person on 1000 will 'manage to be happy' with such a crap life that other will be happy too. Sorry, i can't feel joy being disabled, and there is no point to live with no arm no leg or no what you want in my mind. Moreover disabled always receive compassion, its human, and i dont want to live with this compassion in the eyes of the others. In some societies, you just need to be strong, if you are not, you are 'eaten', and i dont belong to this category of weak people.

If i follow this reasonement, i can just have what i want, aids, lose legs, lose sex (it's done) , lose eyes, but it's ok, we have to 'accept it' and find the 'intern joy'. Why would i not go to a monastery, become a monk, look for the 'inside hapiness'? Sorry, i live in my times, in my generation, i have a way of life, a behaviour, i don't see the use, one again, to live without being yourself.

It's not because you take one statement from a guy like that , that he is happy like that. Ask him if he would prefer to be 'normal' and not writting books, or living like that?

We can't agree: i have this mentality, to look 'up' than me, to ever try to do the best as possible, i look always 'to the sky', not 'downstairs'. Few months ago, one day, i was in perfect form and was working hard to manage my dream (it was several years i was working hard for that), the day after i was disabled. I won't compare me to people in wheelchair or what you want now, i respect them, but i was not planning that for me, and if some prefer living in such condition, other prefer die, and both reactions are understandable.

We have to respect all ways of thinking, you take a statement from this man, i could take you LOTS of statements from guys with our problem to YoungPD (who dont have a 'Peyronies Disease' in fact) and me, who express EXACTLY what i say, what we think. Its a matter of point of view, or you accept EVERYTHING, coz 'its life and it's like that', or you don't accept what is not acceptable.

[Hawk]

The fact is, that happiness is a choice - The decision is yours.

I recommend "Man's Search for Meaning by  Viktor Frankl
The "Road Less Traveled", by M. Scott Peck

I also recommend counseling.

[Tim468]

>>we won't agree that 'we have to accept, be strong , and life will be nice again', coz that's not the truth.<<

First off, that is not what we are saying.

We are saying that you are in charge of how you feel - about that (your feelings) you have a choice. And that is the truth. You simply don't know it.

The sheer volume of words you type bespeaks your pain. But people wiser than you are showing you a path, and you are saying it is not there.

And for you it is not there, because you cannot see it.

So, if you can but learn, instead of incessantly telling us how it can and cannot be, then life might get better for you. The choice is yours.

Now, instead of furiously typing yet another response, why not log off the computer and go check out some of the books recommended to you? See, this getting better takes a kind of work that you are not yet ready to do. But I have every confidence that if you start to do the work of healing emotionally, you will get better.

Tim

[youngPD]

To Tim:

You know, I read your last post, mentioning Victor freckle's famous book, and believe it or not, I'm one of those people who have indeed done kind of an impressive track of what you would call "a spiritual growth". One of my occupations during my life was being a coach (business coach, based on the behavioral coaching method). I used to coach sales representatives as well, so I was there "THE challenger" and the one who used to be intrigued of how people act and react .I used to really learn about what may motivate us, as well as what are our self-limiting beliefs which may play a significant role in hindering us from walking the walk, or what makes us "quitters" or sometimes procrastinators. So I know what responsibility and avoidance mean and I sincerely practiced it in my life.  

In theory and usually even in day to day life I used to apply those premises and tried discerning my own black spots "self-limiting beliefs ", premature judgments and conceptions , my 'fixed ideas' and so on ,in order to unravel some intricacies in my life. I have been through all those seriously remarkable books and notions written by giants like Albert Camus (who was rather optimistic even in "the myth of Sisyphus", contrary to common beliefs),Frankle ,Nitsche and others. I even attended various existentialist and 'awareness workshops' and self-learning programs (way before the onset of my current fibrosis) ,most of which were based on Heidegger's philosophy ,stating ,rightly, that in order to live your life in full and to optimize the benefits you can elicit out of what you've got ,you should distinguish facts from the "story" (equals your interpretation) you have chosen to roll in your head about what happened. Heidegger claims, that once we manage to make this subtle, not always easy, distinction and to recognize what are the hard facts, as opposed to our associations, patterns of interpretations and so on -- that's the point where we can gain freedom, being more aware of our black spots, making informed decisions and having more control of the way we run our lives.

While those tools are far from being any secret, and some of them may sound as trites, and indeed some are so, they all may be viable and handy under certain circumstances. I honestly tried and try even today to use those tools, and other "can do" phrases. Nevertheless, easier said than done I can assure you. Well, yeah, for some reasons I am still here on earth, so I needed any "tool box", in order to even keep my head up along those month and almost years now.

However, does it really resolve the crucial loss of my manhood? Even if I could use the same old phrases some of you guys were using such as: "even without any Penis, I am a man" or "if she loves you it would not matter even when you are not able to do anything", and so on. the thing is ,even by saying those sentences, believing in it, and looking at the things you can still have in your life, rather than those you lost (all techniques I really practiced in other crises I had in life ,and trust me -I had many of them),I can still tell you there are things ,that in my age and my circumstances, are almost impossible to revive your spirit beyond what had happened.

Most days I feel like going round and round in cyclic thoughts if you know what I mean. The kind of thoughts that always lead you to a dead end.

In order to illustrate this cycle, allow me to say that most of my friends have no clue about this issue. Some of them DO "know" that I have some "mysterious disease" or so. some of you might have probably suggested that I'd better be opened and frank about it ,but with all due respect ,I would be open regarding any other issue had I had it, except for this one ,especially provided my previous reputation in my town (and I can relate to Antony's notion abut his remark about "reputation". ).You can not judge this attitude of me and Atony about hiding it in the closet as its cultural related I reckon. I would never tell this to the lion part of my peer group, and this by itself renders my life even more tricky to handle ,as I needed to become a sort of an actor on stages ,keeping my outside persona similar to my previous self ,whereas inside I am bleeding. I play as if I were the same horny playful guy with the girls and inside I feel more and more pathetic for this duality, and more dead and tortured than ever ,for not being able to be the same old outgoing happy guy who need no lies in order to cope.
Most of the times, I avoid going out with them, as to avoid seeing what I've lost.

So, yes, I could indeed be closed in my home, and adjust to the new circumstances, though the it would not be me. What does this mean to adjust under the "new rules of the game"? I can not go to the bars and court the girls as I used to. I can't be really frank with my friends without feeling more awful if I told them.(and they are real friends. they would "accept" me. it's me who can't bear sharing it). I can't enjoy the music and the fun I used to have and the night life I used to practice since it was all a part of my sexuality and  you can't distinguish my vitality from all those components I had in my life.

Do I have other hobbies or other possibilities to enjoy life ? Well ,like all of us ,of course I used to read many books an engage in many other activities ,however after the onset of this infliction, I lost the spark and the enthusiasm regarding those hobbies as well. I do read sometimes and see some friends but something deep inside of me is dead. When my sexuality and my sense of real manhood vanished, it was like all my other desires and sparks were dimmed all in once. Like a car without an engine.

It is So much than sex. People tend to say "there is more to life than just sex", and indeed I second that. however ,sex in many direct and indirect means ,some of which I illustrated above, bear on many other facets and aspects of your life, especially in such a young age when you never had any chance to build yourself up in all aspects without needing to worry about such a tragedy. I mean even financially, it is crucial, when you are not really well established yet as far as profession is concerned and steady occupation, and you are too shattered to really pull yourself together and put all your efforts into something remunerative and promising a promotion ,when you think your future is kind of up.

I did think about somehow bypassing those obstacles, but it just seems, after weighting the pros and cons, that living your life under those circumstances (for 30 years more...) is just a lose-lose situation, as opposed to synergy. No matter which rout I chose, I won't be able to accept it. And I won't use any anti depressants in my life as I am generally against using substances. So in one time I did go to bed with a girl, and I tried using the pills. 2 years ago I could still able to have 5 minutes penetration. Today it's not even possible to think of that. So when I was there, I felt so damn humiliated to be like that. And you want to know something? The first meeting with that girl, we went into a bar and danced. then I asked her out of interest : "why did you leave your last boyfriend ?" and she openly said:" since he was impotent", and then ,she had no clue yet about me ,so she even showed me her last boyfriend and pointed him with her finger there in the bar. And those talks happen all the time, I heard it several times. it's another issue on top of all. And what's the point of having a relationship in which the best you can do as a man is oral and cuddling? I just do not see myself in such a condition.

So that's where I am now. And BTW - I second every word Antony said. Sorry if it makes some of you feel angry. It's not that if we do not agree with some of you so we should be told we're wrong. Please guys, be democratic and accept that everybody's different and have different points of view. It's very common in Democracies....

All my blessings,
Ron    

[Hawk]

Ron,

No one is angry.  We may be sad for you or disappointed that you can not begin to internalize the wisdom from some that have many more years of adult living and the experience it brings.  I am hopeful however that you will still evolve in a positive direction even though it my be at an almost imperceptible pace.  I think it will happen as long as you nurture it and not go through the endless negative cycles of dwelling on loss.

Maybe in fact it is time to see if your past life style was not restricting you from other aspects of life that were closed off.

It will get better.

[Tim468]

"Most days I feel like going round and round in cyclic thoughts if you know what I mean. The kind of thoughts that always lead you to a dead end."

This part I am starting to understand!

Tim

[youngPD]

To Hawk:

I truly appreciate your genuine concern and sympathy, and it has significant merit for me, albeit having some disagreements or more accurately said - missing to be at the shoes of each other. nobody can be blamed for it obviously ,as the nature of any each of us ,being so multi dimensional, preliminarily compromises our ability to inherently experience what the other one experiences and interprets. The more we willingly come to terms with those natural limitations we have, the better can we converse more open mindedly. That's one thing I learnt in life.

As for the age factor, I do not mean to brag, but I reckon many people at the age of 50 or more do not have the same life experience which I had to cope with, unfortunately. Moreover, sometimes age may interfere with good understanding of my condition, unless this older person had been totally impotent and calcified when still single and very young ,without having any relationship at the time it happened. Otherwise it's almost worthless to compare, since when you change some prominent factors like age of onset, marital condition, having kids or established career - altering those factors make the whole comparison way less relevant or insightful, in my humble opinion.

I am just coping with so many factors which I have no clue how to handle if at all possible. Starting from the fact that there's nothing to do about the fibrosis which keeps progressing. going through the way it looks when flaccid, my severe impotence, the fear from even initiating any non-intimate relationship (or non sexual) in my young age, the social cycle, the insecurity in a given relationship (even had I been bold for this kind of relationship) as a man who is in essence with almost no sexual appearance (close to having nothing down there). So who can ever cope with this severe condition, especially given my previous life? Who wants to? Why? What for?

I figured out many times, that having any kind of misfortune or disability from birth, might paradoxically be somehow more "workable" so to speak ,than losing it all of a sudden. Though both are incredibly difficult to cope with

Thanks for your kindness and efforts regardless of anything I said.

Ron      

[youngPD]

To Tim:

You said you are starting to understand the sentence of "the cyclic thoughts". I felt you were cynical there weren't you?

Anyhow, when I said cyclic thoughts I meant when you examine your options and no matter where you look it looks imperceptible for you. And then you come back to the other option, which looks even more devastating, and so on.

Particularly, I find myself asking myself if I could ever be with a woman, while being even embarrassed to take off my underwear today. And I try to convince myself as if intimacy is ok without any close to normal sex. Then I admit I can't accept it. Then I think of more respectable option like "a-sexual" relationship, which sounds even more nuts to me. Then I think of the implant maybe, but then again, I lost so much in length and girth ,that having my current tool reduced even a bit more ,would leave me with almost nothing.

So, here where I am, trapped in those cyclic thoughts.

Thanks for replying anyway,
Ron

[jackp]

youngPD & Antony
Can I ask a question, Have you been to a good implant surgeon? In my research a properly preformed implant will only cause a minimun of loss in length and normally a gain in girth.
In my youth girls preferred girth to length.
Buy the way. STAY OUT OF BARS!!! Are these the type you want a lifetime relationship with? The girls that make a man truly happy are not found in bars!
I agree with HAWK you need counseling. Find a grief counselor.
Jackp

[Old Man]

To youngPD and antony:

Hey guys, some of us old farts (I am almost 79 years old), old codgers or whatever you young squirts prefer to call us, have been "Around the Horn" with Peyronies Disease, ED as well as many other maladies in life. We know where we have come from and where we want to go. None of us have it "easy" with Peyronies Disease, ED as well as cancer. Prostate cancer has left many of us totally impotent, with deformed penises and other horrible health issues. I have faced many devastating health problems in my life up to and including 14 surgeries. But, I never got so far down as you guys seem to be and I picked myself up after each surgery and kept on going.

I personally developed Peyronies Disease at a very young age too, 24. In the 1950s there were no "cures" or "treatments" nor any other forms of help for Peyronies Disease. Some of us at that age were impotent for one reason or the other. So, we know very well about the devastataion of being robbed of our manhood at an early age. However, we chose to rise above these personal problems by standing up the challenge. We did not hide our head in the sand like an ostrich, but looked for help in all the avenues we could.

The bottom line of what I am saying is this:  In the words of a sailor, either do something or get off the pot (cleaned up from sailor talk). I, for one, have tried to help guys of this forum through PMs, posts, as well as emails. Most have taken these efforts and moved on to higher ground with Peyronies Disease. You guys seem to want to challenge any and all efforts to help in any way we know how. This horrible mess has been around since in the mid 1700s and so far there is no definitive solution to the problem. We collectively have chosen to do what we can to fight this disorder, disease or malady in any way that works for us.

In my case, the VED therapy was successful after 50 odd years of nodules, plaque, curves, impotence and rejections by partners. Thousands of dollars have been spent seeking anything that would help. So, I know at least somewhat of where you are coming from, in case it would matter to you.

Anyway, it is time to quit writing lengthy dissertations and get something going for youselves. The forum is a place to vent your problems, ask for advice and any help that be rendered from our experience but not at the expense of being overbearing with posts. Now, either accept the efforts offered by the guys here who have been there and done that or SHUT UP!

If any of the above offends you in any way, I am sorry. But, I just can't feel sorry for you any longer if you still take the approach that you guys demonstrate in your verbose posts here.

Best to you, Old Man

PS: There really is life after Peyronies Disease, ED and other men's health problems, you have to make it happen!!

[jackp]

Old Man
I just read your post and only have one word.
AMEN
jackp

[antony]

Hello,

there is a fact i don't understand : why creating a part of the forum, dealing with 'psychological components' (that is a great idea) if when you sincerely express without any hypocrisy what you really feel, you are not understood -or rejected? So is the part on psychological component is here just to say 'it's ok, i have it, cool, i'm impotent, i've lost all sensation, i will never live my life as i had to , but everything is cool coz i will find intern and mental hapiness'???
One again , i speak as for me, i was not asking any 'psychological help' (i see a professional for that), nor any compassion or whatever. I was just aproving what youngPD said, and expressed the same, that was just expressing something that of course you can't tell to everybody in every day life, coz when you are at restaurant with friends, you don't say 'i broke my penis, i am impotent for life' as you could say 'i have a headache'.
Anyway, i'm looking for medical part, not psychological help, so i thank you for ideas about VED or pentox (my doctor had already given me a prescription for that anyway, but aparantly, it has the reputation of not really working), or l-arginine (and all 'medical solution' that can be useful). Its a great help, for sure.
There is a point, we can speak as long as we want, it will not change the things. Only real medical hope could change.

Tim, when you say 'furiously typing new response', you don't know what you speak about. No one is 'furiously typing' anything, a guy has just posted a SOS in 'psychological help' coz he is distressed, and understanding that feeling , and living exactly the same i added explanations about that, it's only explanations (even if it is very dark ones i admit, but thats the truth of what we feel, it's honest feeling) and it's not because we don't agree on some points (and definitely age, social situation, condition, way of life, area, make the points of view different) that we say stupid things or that we 'furiously typing response' (mean 'to be furious and type in rage without thinking', i am cunscious and not stupid as for me, i know to speak, think, feel things, understand others, realize what happens, YoungPD too i bet, and there are reasons to be taken in an infernal circle of dark ideas). I'm sorry if you don't understand that, but anyway it does not matter, coz we are all agree that complaining (it was not what we did, it was only explanations, and sincere and realistic ones, not hypocrit ones) will not change anything. We agree on that point.

To JackP: as for me, even if i do not want about an implant so young, for all the reasons we told and clearly explained (and which are understandable), yes, as for me, i have spoken to a good surgeon who's dealing with penile implants -a very 'human and comprehensive' one. I wanted informations if in my mind i would finally consider this option. HE told (so it's not me, it's him) he WOULD NEVER TAKE RESPONSABILTY to put an implant to a so young person (it's his own words, not mines, and HIMSELF makes the difference between a boy of 25 and a man of 65 , HE told me 'when you are aged person,  we often directly consider a prostesis in severe cases of ED -i can give you his explanations if you want-, but in young cases we can't do that). After, if i force him (but at the origin i don't consider implant as a realistic solution, so i don't see myself forcing him), and if i would sign some papers to assure that it's what i WANT FOR SURE and i take my responsabilities, he would maybe accept (and not sure when i saw how categoric he was)...
And it definitely makes lose size, and not sure about girth. (the problem is somebody who is at his original size and will lose 3 centimeters is huge, but when we have ALREADY lost 3 centimeters, 3+3 = 6, so to have a mechanical and tiny penis is not so cool).
And for the bars and clubs, that's the age difference, maybe at 55 i would have prefered 'quiet places', 'walk in forest', 'go to museums' ,etc, etc, etc, but i have the time for that (or i was suposed to have), and not atracted in that. But that's not the matter, i understand and respect differences of points of view concerning the type of lifes as for me.

Hope the best for everybody anyway.

Antony

[Hawk]

After enough posts to fill a book, these are the points you have repeatedly made:

1. Life is terrible!  
2. There is no joy or hope of joy!
3. No one can understand me unless they are a party boy that is currently my age with severe Peyronies Disease (and they agree with me).
4. If anyone disagrees with me I will assume that means they do not understand me.
5. I reject any and all input from those that have found joy under similar challenges!
6. I actually refuse to accept that others have had very similar challenges and still found true joy.
7. I refuse to take responsibility for / or acknowledge that I can change my attitude.  
8. I am convinced the medical community will never have any progress on Peyronies Disease in my life time!  
9. I do not want any of the options the medical community has at the current time. (implant, PAV, VED, traction,)

Trust me when I tell you we DO understand your position.
We do recognize your right to have any destructive attitude you choose to have.

The problem is that we cannot help under such self-imposed restrictions.  We universally refuse to agree with such a seriously flawed life view.  We are not ever going to agree no matter how well we understand your view. We are never going to say, "Poor boy, your life does hopelessly suck!"  

We are all here to try everything we can to change anything we can, and to build fulfilling lives around EVERY challenge we meet.

Now that we understand each other there is little left to discuss unless we change our positions. There is little point in each of us endlessly repeating ourselves trying to get the other side (2 Vs 1334) to abandon their chosen paths through life.

Let us know if any of those 9 things change for you.  We will let you know if we ever decide to bond with you in a state of hopelessness, because that is what it has come down to.

I sincerely hope you can make it work!

Hawk


 

[youngPD]

To Hawk :

First of all I want to emphasize that I respect and cherish the very existence of this forum and the genuine intention to help. However, I keep asking myself, whether it has ever occurred to you, that coping with any kind of trauma or crisis has various psychological modes and several stages  - none of which should be considered redundant ,discharged or should be dispensed with.

Indeed, in some cultures, when you grieve the loss of beloved ones, you are granted the time to "wallow in your sorrow" without needing to feel any guilt for that. It's a natural process, no matter what you say. It's an essential phase one needs to fully complete, otherwise a real in-depth wholeness or adjustment won't be achievable at all.

What's the measure of this acceptable period? I can't tell and it surely differs from one person to the other.

I myself, as a coach, used to have your presumed approach of "let's move forward" or "let's be positive" or "if you aren't taking those advices I've just given you, so I forgo this conversation". And then, when I've been to London, attending the course of the behavioral coaching institute, I truly learned and internalized a staggering lesson regarding the complexity of coping with crises and how you, as a friend, coach, or counselor can "dance this tango" with your client/friend . The golden rule should be resilience and effective listening. Sometimes, one really needs to open up one's heart and plainly vent. Are we sure of results here? I reckon we can't be. Is there a surefire way? Is there right or wrong in any 'post trauma' reaction and coping? Any entry level psychologist would tell you, you can't and shouldn't try predicting it or jumping into premature inferences.

Judgment is the worst tool you can use in those cases. Telling somebody that if he's not positively going forward, he may not be welcome, is exactly like pushing someone over his edge. Help should never be restricted to being receptive to all offers given to you. Resentment and resistance are very familiar and legitimate parts of any post crisis responds. Does it make the conversation a bit awkward? Maybe , but no less fertile,even though you may not instantly see the impact behind and between the lines.

And with all due respect, I reckon that your current post along with Old man's post, are not really being attentive, compassionate and supportive. I know that your intentions are absolutely pure, frank and supportive ,but the means you've chosen to deliver it ,is more pushy and verbally even coercive ,rather than tender and understanding.

No one ever expected you to say "oh I feel so pity for you", as you noted. It's not about that by any means. But according to any sort of support group, many of which I used to lead once, judgemental attitude or strictly discharging venting, is neither supportive not trust building with someone who needs to be listened sometime. In some points, the best you can do for a human being is to listen. Trust me - that's A LOT for many people in many cases. I know that for ME it makes a difference. In some cases, just by empathically listening, I myself prevented people from ending their lives. Can you be sure it would help? No, but one thing I can assure you - when one has nowhere to turn for even just opening up one's heart and true feelings, the inner mental pressure may and will increase ,leading more rapidly to the point, when one experiences dead end. Just for your information.

The above said reminds me, that I've once read a famous book dealing with the inherent differences between the typical way women and men tend to address crisis and problems, and why they too often fail to communicate effectively. Men are more "solution focused", while women are more "conversation focused", which most men can see as a "waste of time".

But guess what – I reckon women usually tend to think and do things better than us. The tenderness, the effective listening, the non-judgmental approach, have been proven to win the battle more effectively than the "solution oriented approach", especially in cases where the latter would lead to nil result, technically speaking.

Whereas no effective solutions are at hand, I would say that the emotional field turns into the main dimension to work with. Which just lend credence to the point I suggested above.

P.S: I do not think the statement "2 vs. 1334" is mature, nor does it prove anything. As I said before we're all different with different approaches and life experiences, and as much as you suggested the "2 vs. 1334" ratio, I could easily provide you with different statistics ,but that would be like playing children's games which I have no interest to play. Would you think that if the statistics were more like "1500 vs. 1300" ,would you have any chance to know of those 1500 Peyronies Disease sufferers who have maybe silently chosen a different way than the gentlemen over here?. Would it be likely to find them here? I think no. so your example is like going to a basketball game of the LA Lakers and say: here I can show you 500 fens of LA Lakers, as a means to prove they are the majority in the US. You can't be serious.  

All the best,
Ron

[Hawk]

Ron,

First let me assure you that I was serious.  I have no interest in listing a resume', transcript, or reviewing my life experience beyond assuring you I am very aware that people grieve in stages and that different people deal with loss and stress in many different ways.  I also want to assure everyone that I was not functioning as a professional counselor or attempting to be the substitute for a professional counselor.  That is the very reason I recommended a visit to a professional counselor. This forum is not for dispensing professional medical,  or professional psychiatric treatment.  It is a patient support group where patients give their point of view on what helps so that others can discuss that with professionals and make informed decisions.

It varies with individuals, but at some point in that patient-to-patient discussion one or both sides feel they have exhausted all they have to say on the topic.  That was the basis of my post and my reason for cooking down the positions as expressed by the two styles of reacting to the impact of Peyronies Disease.  I also want to clarify that neither you or Antony mentioned stages or any hope for moving on.  It could be an attribute that comes with maturity but most men realize they are staging even as it happens (disbelief, denial, grief, anger resolve etc).  These stages are fairly basic to human understanding.  In this case the two of you presented extreme argument against even the suggestion that work and future growth may move someone forward.  You in fact have reinforced this paralyzing notion even if you did not intend to do so.  

Finally let me reiterate that this is not the place or the substitute for individual professional counseling.  I as one member will not allow long posts that deny and refute every helpful tactic for growth to go without a clear response.  To do so only damages the thousands of others men and women that search the internet for the techniques for moving on.

I again emphasize the need for professional counsel, and the work necessary to follow that counsel.  Nothing I said in this or any post even slightly suggests that continued comments are not welcome from those that want to continue the conversation regardless of their level of compassion, their point of view, their method of dealing, or their refusal or inability to deal with Peyronies Disease.

[antony]

To Hawk:

I personnaly finish on that, coz as you quote it, it's an 'impass', the same way our situations is an impass.
Just to answer to what you say, i was just typing one post at the origin -i prefer speaking about the MEDICAL solutions than about the psycholigcal issues-, not 'enough post to fill a book', then it engaged debate and conversation, so i just gave precisions and explanations -moreover i think 'psychological component' part is done for that even if it was not my primary goal?

I know you can't help on this point, and i did not ask for that, it's not your role, there are psychologists or psychiatrists for that.

I was just feeling obliged to express why we were not agree on some points. I have the right, i think, not to agree with some things you say, or not to feel 'more happy or reassured' because a harmless or legs less man wrote some books. It does not mean i don't respect what you say, what you think, that i don't take intention about that, so it's logical that the reciprocity is true too. I don't try and don't ask for you to think or say 'poor boy, you are the sadest person on earth, you will never manage, just finish now', no, no, i don't ask this, nor compassion, one again we were just expressing a dark feeling in horrible moment.

After, yes, life is terrible now (it has not always been, hopefully, but it turned in a very bad way), no for sure there is no joy (moreover when you have to give up a project you were nearly to manage after long years work -both personal life and social life and sexual life is a lot), i don't say no one can understand me (i spoke with several people that do understand, for the good reason they are living exactly the same, and are their lives broken in the same proportions), i totally accept that you disagree with me (i told it several times), we can't change atitude in a 'non hope situation' -we could wait one year or 2 like this, if there was some 'light at the end of the tunnel' but its not the case; if i have doubts about medical community concerning this type of problem, it's because i went to LOTS of consultations and spoke with LOTS of doctors, who are lost themselves and don't give any hope (exept taking cialis, which is no more useful coz makes no more effect, exept the side effects). And concerning the solutions, we explained about implant (and if you read well what i told, i told you anyway, surgeon himself refuse to put it on young men ), and VED i tried it -with no success, but i will try a new one as soon as i have enough money to buy it, following the advices of Old Man.

What i want to say is it's you who seem to say, that because we don't agree on some points, so we don't listen to you and don't accept what you say, when we just explain our points of view and how we live that. We are NOT in a logical of contradiction, or want to prove you are wrong, or whatever, we are only in a logic of explanation, and nothing more -so it's different.

But from disagreements can come sometimes very positive issues, but you have to understand that acording to your personality, situation, etc, etc, all people do not necessarily manage to think or act like 'it's ok, i'm disabled but can be happy anyway'. If it was the case, there would not be so many suicides anyway.

Regards

[california]

First of all, this forum is an amazing source of information and I thank everyone for their input.  

The advice by the older members on this thread is golden and I strive to try to take advantage of it and employ it to my own life.  Unfortunately as a 23 year old struck with impotence, I find it hard to really digest any of the wise words and try to move on in a constructive fashion.

Antony, I had started PMing you and I apologize for not following up.  My life has been busy and feels busier by all the time as it takes me longer to do what I used to be able to do in one day because of the time my mental grief occupies each day.  

Antony and Ron:  If you would like to discuss in PM about some of the thoughts you are having (not feeling like yoruself any more, walking around knowing you are carrying "it" with you, lack of goals, end of youth and sexual life, fear of future, fear of ability to find a wife, loss of connection to friends, etc.....), then please feel free to send me a note, and I will likely do the same if you don't mind.  

This is not to knock the discussion on the main board, which I find to be immensely valuable.  I just wanted to say that I understand the mentally crippling nature of having severe ED at such a young age and wanted to provide a sympathetic ear for venting if that's the stage that Antony and Ron (and myself) are at right now.

Thanks to everyone.

[antony]

You posted your post just befor i sent mine.

And one again, to be clear, here was NO intention of argueing, fighting, proving anything, etc etc in these posts. As for me, i dont take it as us VS you, it would be stupid in such conditions. There is no animosity or agressivity in any post, sincerly.

[antony]

Hello California, make me pleasure to see you again.
I understand when you say 'it takes me longer to do what i used to be able to do in one day coz of the time my mental grief occupies each day', as i understand its hard to 'really digest any of the wide words' etc...
And of course the forum is an amazing source of information and great job is done here, and we all agree about that.
Speak to you in PM.

[california]

Antony - tried to send you a brief message but your inbox was full.

[Tim468]

A note of clarification.

When I said "furiously typing..." I did not refer to a state of mind. Something is lost in translation I guess.

It means to type quickly and with some amount of "pressure" in the brain. I don't know that but it seems that you type a lot of words that say the same thing again and again. Hawk said it well when he summarized your stances. Old Man said it well when he said that you are writing "lengthy dissertations".

It is a tough stance for many of us here. I personally am certain that you do not FEEL empathy for others in the similar situation - perhaps for each other, but not for anyone who (can) feel different. IOW, you do not seem able to "get it" about what we are saying, in that you clearly believe it to be false.

For me, I do not come here to complain - though sometimes I do. Getting "support" does not mean someone agreeing about how terrible life is. It means others sharing with you what has helped them, so that you can learn.

We share information about drugs, and surgeries. Yet you say "that's not for me". We share helpful information about how to cope with grief, and you say "that's impossible!" You seem to believe that our giving you this advice is PROOF that we cannot understand your pain, or else we would not give it! That is a tautology - yes, go look it up.

I am not cynical about you two, I am frustrated and tired of the same old same old. How can anyone help he who will not be helped?

You seem to complain now about our frustration - that is how much you want us to understand. But we do understand.

We understand. Really.

Now, do something. FIND a doctor who will prescribe you Pentox and Viagra and arginine (and DO NOT ASK ME AGAIN WHY VIAGRA, OR TELL ME IT DOESN'T HELP YOU GET ERECTIONS, FOR I HAVE TOLD YOU MANY TIMES WHY WE RECOMMEND IT!!). That reminds me also why this has been a frustrating exchange for me - I often feel that my advice is not listened to so much that the very core of it is misunderstood. Just go back to  read prior exchanges about why we recommend Viagra.

"It's too expensive for me here..." - order it in bulk from India.

I could go on - because for many of the road blocks that you face there are solutions. We have shared with you many of the solutions. But instead of hearing curiosity (saying "Tell me more about how that helps me", or "Tell me where I could buy that cheap"), I hear instead "It's impossible".

So tell me this - if you want your penis back and functioning, why are you not exploring Viagra, Pentox and Arginine? Why are you not talking to doctors about surgical options? Why if someone says "You're too young" are you not challenging him and going on to the next doctor?

Don't answer - for we already know why not. There are "reasons" I am sure. But to me it is clear - you are stuck in your mind.

So, good luck getting away from there for that is how you will find a way to a better place.

Tim

Now, I must sign off on this topic for you. I am willing to post about how I have coped with this disease in good ways and terribly immature ways (um... when I was younger). I am willing to post ideas for healing. I am not willing to continue to hit my head against a brick wall.


Tim

[Kimo]

TIM,,HAWK,,OLDMAN,,

ALL three of you have hit this right on , i back you up 100%, these guys are not listening to the good advise being given here, but only want to debate and argue...Enough is enough.....

I have taken the advise of Oldman and have gotten on the protocol of using the VED,,,it's really helping and will post about it over on the VED section.....

kimo

[Hawk]

Kimo,

Clearly the struggle is different for different people in different stages.  I certainly have no desire to "gang up" on someone that is down and I personally know others here feel the same.  There has never been a forum with near the empathy and compassion found on this forum.  There has never before been a forum that allows such freedom of conversation but avoids flaming and personal attacks. There may be some language barriers or a misunderstanding of the entire point of this topic.  For real support under this topic, there is a necessary foundation. That foundation is a desire to cope with the psychological aspects.  That is why the name of this topic is "Coping with Peyronies Disease ".  Unless a member is ready to make the commitment to actually begin the journey of coping, this topic is not for that member.

I guess the same is true of most topics.  It is assumed that a person is receptive to at least considering input if they ask a question.  I think it is safe to say that 99% of the reason for a post assumes that a member actually wants to consider helping themselves either physically or emotionally, or that they want to help another.

[youngPD]

Hawk ,
I really would like to thank you for this post in any aspect. you're absolutely right when you said it's assumed one is receptive to a certain extent if one posted here.

I ,personally, am trying to make my best efforts in order to cope with this condition in any aspect.
Just a year ago ,even working could not be considered as a feasible possibility,according to the mental impact this condition had on me. I was way more shattered and debilitated than I am now.but now I am at least trying to apply for some vacancies. I am not trying to claim I'm happy today and pleased. but I know that one way or the other ,I have to come to terms with the fact that those are the cards with which I have to play now,and I need to make my best to elicit the best possible results out of them .

I constantly have those ups and downs. one day I may be more of "action oriented" and operative ,while on other days the passimism takes place . I may go to a counselor soon. I have nothing to lose by trying that as well.

As for Pentox ,I tried it for a week or two now ,but since I have an intestine problems (gastritis or similar condition) ,it has caused me severe abdominal pains so I had to stop it.

I did ask Old man about the VED and I need to find now where to buy it (I've heard one can build it alone cheaper ?).

As for women ,I have indeed met one last week in a bar. actually she is very nice in all aspects ,but I'm kind of a chicken to approach her now .she even called me and offered that we date. I am intimidated of the fact she knows my best friends too. otherwise I would give it a shot maybe.maybe the VED will give me some new hopes in this regard.

As for Viagra and Cialis for improving the blood circulation ,I would do it ,but I am just afraid of "NION" which is something that may make one blind ,since those pills are PDE5 inhibitors. other side effects are frightening too. I will be happy to hear any comments about it.

Anyhow ,I think the last post of Hawk was very sensitive sincere and understanding ,and it provided me with the support I really need those days.thanks for that mate.

I bless you all ,
Ron

[antony]

To Tim: i have finished to speak about the 'psychological part', but just concerning what you say, i just bring something: we listen to what you advice! It's some times i am under pentox, vit E, and take cialis... I don't know why you say you are not listened?..

Now here is a point of interogation for future: if i continue to take pentox etc and it helps nothing, in one year my penis will have shrink more and more. Even an implant (that yes, i don't want, but supose as a LAST chance) would not be possible when your penis has shrunk too much.
But if i don't give a chance to pentox and others oral or topical treatments, i will never know if it would have helped.  And i know it has few chance, acording to the doctor words. But if it has only one chance on a billion, it's worth to try, coz of course it would be better to 'heal' than to have a robotic mechanical implant for life.
So here is a big dilemna. Try to 'heal', but take the hugh risk that it goes worse and worse (if its possible, coz it is already so shrunk and total impotence)

It's wrong that we don't feel emphaty for others in similar condition (for sure i feel less emphaty for somebody with a little curvature, than with the death of his sexuality, but i do feel emphaty for every person who has a serious problem).

Kimo by saying 'only want to argue', sorry but you are totally wrong.

[jackp]

Life Before Peronies
My wife and I were remembering past Christmas and decided to get out some old home made VCR movies. The year was 1988 and we bought a new camcorder for Christmas.
19 years ago we were still spry and decided to make a couple of home made sex movies. We sat on the couch for an hour or so and watched us in action.
One of the first things we noticed was the loss in penis size. When you loose it gradually it does not seem so dramatic!!!
I have lost almost 1.25 inches in length but fortunately very a small amount of girth (never measured girth before).
I am still waiting for my 2nd opinion on implant surgery Jan 9. Wish I had known about what a VED could do back then but my Uro never told me.
Conclusion:
We went to bed and it was great for both of us. We have learned over the years it is not the size that matters it is how you use what you have.
WE ARE SORE AS HECK but it was great fun.
Jackp

[Tim468]

That story brought a smile to my face.

It's funny how we share here the most intimate details of our lives with others. Somehow, for me, it works. I don't feel either voyeuristic or exhibitionistic. Instead, I simply feel connected to other men struggling to figure out how to cope with a problem.

Tim

[Kimo]

Jack and Tim,,,,,thanks for the great posts,,thats exactly why this is such a great forum,,,being able to say it like it is,,it's what most of us understand and relate to....

Kimo

[ocelot556]

Hey guys, a little bit about myself:

I'm 23. I've had Peyronies Disease for about 15 months, and it seems like it's gradually agressive. Until this week, I hadn't seemed to have any problems with ED, and I can't be sure that I'm not freaking myself out and causing ED via psychological stress (I'm going to be taking some added bedrest and give the "Exercices" in getting blood flow into my penis a rest) -- but it seems like I'm having more trouble getting hard. I think I might be experiencing the start of Peyronies Disease-related ED. PDED.

I'm terrified that it's because I'm getting attacked by the fibrosis in the cavernosa (as I'm sure y'all might have guessed, since I've asked related questions in a few of the boards). I'm so young, I am still in my sexual prime -- I thought I had years left of sexual experience like any other young man, but now it feels like I've hit a brick wall. I fear that by the time an effective treatment does come to light, I'll be an old man. No twentysomethings for me, no, that boat has sailed. That might sound shallow, but I'm a handsome young man who thought he had a bright future - now, even the positive non-sexual things I do in my life seem overshadowed by my scarring, my secret that noone but those closest to me can know about. I can write a book, I can get a raise at work - it doesn't change the fact that I'm slowly losing the very funtion that society says makes me a man.

I hear a lot of people on these boards who get support from their wives, who they love and are happy with...but what of the men who don't have that support? I am single. I want a relationship - but how does one predicate a relationship at my age without sex? I'm terrified that if I have a relationship I'll get laughed at, or some girl will tell all her friends I've got a limp member. For the majority of people, that's all it will be. Not a genetic abnormality of scarring but a shameful display of unmanliness.

These are the thoughts running through my head right now, and I don't like them. I'm at a pretty low point, and any words of encouragement from the people who have been fighting through this a lot longer than I would really help. Thank you.

[pal-31]

Hey Ocelot,

First of all, It is terrible that we are dealing with this disease, but it is not the end of the world. Here is what I think you have going for you. First you are young so your body heals better, you have plenty of time for a good treatment to come out etc. Also since your Peyronies Disease is fairly recent you can still get on a treatment plan that will help. I would recommend you get on PAV and VED. May be even traction as some folks are having good luck with it.

As for being single you could look at as being able to concentrate on getting better and improving your Peyronies Disease without the pressure and anxiety of having to worry about the feelings of the other person in the relationship. So just relax, work on getting better or at least not getting worse, take it easy and most likely you will be just fine.

Just keep reading this forum and follow the advice of the veterans.

Best Wishes,
Pal

[Old Man]

Ocelot:

You are not alone at getting Peyronies Disease at an early age. I too developed this crazy mess as the age of 24 so I know where you are coming from. Single at the time, (later married at 33), I thought that I as the "stud" of the year all the time. Sex meant everything to me at the time. Suddenly, there was this nodule that felt like H--- and burning pain on erections. You know the drill I suppose.

Since that time a lot of water has gone under the bridge of life. Now at age 78, Peyronies Disease seems like a thing of the past, but there are many memories of "treatments", Verapamil injections (more Peyronies Disease nodules), X-ray therapy, just to name a few of things that were tried.

I won't go into all the details (they are posted elsewhere on the forum), just wanted to share the fact that I too have had several bouts of this mess. So far, have come out smelling like a rose with Peyronies Disease. It has come and gone several times during the past 50 plus years, but somehow, someway, I got over each one. It is terrible to realize that one's manhood is suddenly taken away. But, don't despair, keep looking up and trying some effort to find a solution that works for you. There are many things you can do - first do some reading on as many topics of this forum as you can. You will find many posts that can offer   suggestions/solutions for you.

It is a known fact, that Peyronies Disease is one of the worst things to happen to a man, especially one so young. So, take my advice, don't just sit back and pity yourself, go out and find a solution anyway that you can, you will find much support of this forum. Feel free to ask any and all questions and the members here will do their best to support you in all possible ways.

Old Man

[Dented]

I got Peyronies Disease a year ago, during casual sex, and I am not a married man. For a year, I suffered from a lot of heartwarming feelings of depression, sadness, despair, mental anguish, anger. etc. Just starting to think about having sex again in a long term or short term relationship.

Are women still fairly well able to get off when you have a big curve? What about dents, if you have big dents do they notice this as well? Do they get off, or do they fake it? I guess the reality is some women find it very hard to get off with any penis.

[Dented]

Any of you see a shrink? I went to one once when I was a teenager.

Lately I have been having a lot of dispair and anger, I think its best I see one, but I don't think I would ever be able to say I have a penis problem...

[Old Man]

Dented:

My advice to you is that if you see a shrink, just open up and tell him/her any and everything. You have to be honest with your feelings about your problem if you want to get the needed help. The word penis is not a "dirty word" that must be kept in the dark, it is a vital part of the human body!!

In the meantime, just apply your own better judgment about the issue, take stock of what is happening and realize that there seemingly (at present) nothing that can be called a "cure".

There are whole lot of guys in you same position and feel the same way at one time or another. But, with proper and realistic positive thinking we have overcome the problem.

So, in other words, get a grip on your feelings and overcome the negative feelings as we have done. It will work.

Best to you and if there is anything we can do to help, let us know.

Old Man

[jackp]

Dented
What if you had a problem with your heart would you let the fear of a penis problem keep you from having a Cardiac Cath? They do put on a loin cloth for your Modesty.
I just recently had back surgery. When I came out of surgery I had a Foley cath. Would knowing I would have a Foley cath keep me from getting my back fixed? I think not.
In the last 15 years or so I have had several procedures that involve or are around the penis. I even had an intern Uro examine my penis preonies plaque.
That intern was FEMALE.
I do not know what your penis problem is. Whatever tell the Dr. They have seen it all can help you if you let them.
Just wanted to give you some encouragement! Hope you find success and recovery.
Jackp

[Tim468]

Dented - no time to answer the questions you raise about women, nor much need to. However, welcome to the site and I am glad to se you posting a bit more about your condition.

Tim

[nycjake10002]

Greetings all. I need to share my story finally with some people who hopefully will understand. I have no one who gets what I'm going thru.

So let me start at the beginning. 2002 I noticed my penis was bent to the left as I looked down at it and I was uncut at the time and when erect, you would know I was uncut and now the foreskin covered my penis. That's how much shorter it got. The number that does on my mental well being is a lot. When my first urologist who supposedly is very highly regarded diagnosed me with Peyronie's Disease, I got  upset and I shed a few tears. This doctor told me my reaction was not appropriate. Who the f*ck is he to tell me what to feel? I live in New York City and I spend a lot of my own money and went to about 5 different urologists looking for a shred of hope. The last doctor I saw told me about this doctor in Sao Paulo Brasil who has a new innovative surgery that corrects the curve and will restore the length. This NY doctor said that the brasilian doctor's practice is dedicated to Peyronie's Disease and recommended seeing him if I could afford it. So I made an appointment with Dr. Egydio and went down for the surgery. I've been in the hospital 2 times prior to my brasilian experience and I have to say that this hospital was a very well run organization, it was a nice place, I think most all would be impressed by the level of professionalism shown by Dr. Egydio and his staff. Now I'm sure you want to know how things turned out for me. Well... the curvature was corrected, my penis still  curves a bit, but I can live with that. The bad part is that I didn't get my length back. So I am living with a penis that is about 1 to 2 inches shorter than it was for the first 44 years of my life. I'm having a hard time adjusting to this. It's made sex something I'm not really that interested in. I have a partner, actually someone I met while in Brasil, and he gets frustrated because my sex drive is so low. I feel ashamed. Back to Dr. Egydio. He was trained in Cleveland Ohio so his medical training was here in the U.S. He was most personable. He's a really great guy who is completely dedicated to the male penis. I want to pass along this information to you so that you can work with your doctor to see if this is the right method for you. I think one of the problems in my surgery is that the day before he injects cabujet (not sure if I spelled that right, but it's the stuff you inject into your penis to get an erection) and takes measurements for the surgery. For me, that stuff doesn't make my penis erect. I didn't think of it at the time, but hindsight is 20/20. Had I taken Cialis or Viagra and think the measurements would have been different and possibly my surgery would have been more successful.

When I have spoken to my friends about my situation, they don't understand what I'm going thru. I think back to what I used to have and look at what I have now and it gets me sad and uninterested in sex.

To back up a moment: the New York doctor that recommended Dr. Egydio is Dr. Jacob Hyman and this  brasilian doctor also worked very closely with Dr. Whitehead in NYC. I do not think Dr. Whitehead is practticing medicine due to medical reasons. I also know that Dr. Egydio has travelled extensively teaching his method to other doctors. The name of the procedure bears his name.

I urge you to educate  yourself and I have a pdf of the procedure that he sent me personally. I hope that your doctor is open to at least discusssing this with and together the two of you can make a decision that is best for you.

I also know that there are testomonials from other patients who had better luck than I did.

Thanks for listening.
Jake