Psychological Component - Coping with Peyronie's Disease

[Hawk]

This is not directly Peyronies Disease related but it is indirectly related to this topic.

Liam, maybe I do seem in touch with my feminine side or to be enlightened.  I hope I don't appear to be espousing ivory tower concepts or be condemning those with other opinions.  

I think family and even true friends are those that we don't put on airs to impress.  They are people that we can allow to know our warts as well as see us when our armor is all shined up.  I think love is acceptence of the real us, not the acceptence we sometimes get on the internet for the persona we present.  To me love has never been some vague intangible feeling, it is a bond demonstrated by mutual actions of concern, acceptence, and support.  I also accept the ideal that honesty is always the best policy for the long run.  I suggest that honesty is a necessary ingredient for real relationships. Honesty is the foundation upon which every other attribute is built.  

This is different than suggesting everything is dinner conversation.   In fact I do not think there is necessarily a need to share this information with family at all if they do not ask questions or express concern.  If they do, how do we justify dishonesty with them?  I also do not suggest that intimate issues be cheapened by sharing them with people we do not have intimate relationship with.  That is why even though I do reveal my identity to many professionals in the Peyronies Disease community, and with associates on line, I do not associate my real name with my forum posts. Details of my penis size, how my wife and I work through Peyronies Disease issues and other such posts are not for whole-sale public consumption by my neighbors.  If personal acquaintances really care, I would at least like to make them work to search the internet to put my real name and "Hawk" together.


Hawk

PS: I wonder how we expect to gain awareness, or shine the light of education, on Peyronies Disease when we can not give our own loved ones an honest answer to a sincere question.

[Liam]

This is not directly Peyronies Disease related but it is indirectly related to this topic.

On the contrary, I think this is, at least for me, a central issue.  Who do you tell?  How do you tell them?
My personal answer is my doctor, my wife, and the forum (anonymously).  Discussing two sides of the issue can only help us understand our choices.  To be honest   , I never considered telling anyone other than my wife and never imagined anyone else would.  At least now, thanks to this topic, I have explored this option.

...how do we justify dishonesty with them?

There's an old saying, "Never tell a pretty girl she's pretty and never tell an ugly girl she's ugly."  Kindness and good judgement should be the guide.

It's like the universal answer of all husbands when asked, "Does this dress make me look fat?"  "NO!!! You look great!"  

If everyone knew each others true thoughts, we wouldn't have family and friends.  

In the end, each man must decide what is best for him, his wife, and his family.  There is no one answer.

I wonder how we expect to gain awareness, or shine the light of education, on Peyronies Disease when we can not give our own loved ones an honest answer to a sincere question.

I had to search to find this quote I half remembered so I could give proper credit.  It expresses MY feelings.

There are only two ways of telling the complete truth - anonymously and posthumously.  ~Thomas Sowell

[Tim468]

It's embarrassing.

If I need to get a surgery to fix my penis, and need a recovery period, how do I tell my partners so they won't "look at me like that"?

It is all in our heads - this worry and shame and concern. Compassion awaits us in others - yet we are too ashamed to stand up and say we have this condition. I imagine going on Oprah to talk about this - and then thinking "But my patients would see me and then..."

No matter how I cut it personally, it is hard to really talk about this, but every time I have, it has been to the good.

Tim

[hascal]

Hello - I have been coping with Peyronies for almost two years. In my area of the U.S. it has been difficult finding Urologists who have treatment programs. I have just been accepted into one but I cannot start for two months. It will consist of verapamil injections, topical creams and electrical impulses. This has affected me in ways I cannot express. I feel better now that I have started going forward with a plan. Thanks for your posts as I have spent many hours reading and studying. I plan on contributing as much as I can as long as it is helpful. HASCAL.

[Liam]

Welcome,

I agree.  It always feels better doing something.  Good luck with the treatment.  Keep us apprised of any progress.

Look forward to getting to know you here.

Liam

[Hawk]

This has affected me in ways I cannot express. ... I plan on contributing as much as I can as long as it is helpful. HASCAL.

Hascal,

That is the great thing about the PDS forum.  Just that statement from you does express it because we are with you.  We have experienced it, we do experience it, and yet we have regained our balance.  I am glad you found us and I am thankful for your post.  Good luck!  I look forward to hearing from you.

[Hawk]

There's an old saying, "Never tell a pretty girl she's pretty and never tell an ugly girl she's ugly."  Kindness and good judgement should be the guide.

It's like the universal answer of all husbands when asked, "Does this dress make me look fat?"  "NO!!! You look great!"  

There are only two ways of telling the complete truth - anonymously and posthumously.  ~Thomas Sowell

Liam,  I know you will take this in the spirit it is intended.  I really do like those quotes. They are cute.  I am a huge fan and a long-time admirer of Thomas Sowell but I actually like this quote even better:

"Thou shall not lie" ~ God           -----     Profound in its simplicity, and the only decent way to live.

[BertCobb]

Well guys, I worried for nothing.  I spoke with my son while we were out waiting for the doves to appear.  I told him I had this condition that was called Peyronie's and asked if he knew what it was.  He said he did and had nothing else to say or ask.  I let him ponder it all for a while and asked again if he had any questions.  I told him that it was NOT going to get me down and I would go on living and looking for a cure until I found one or died. He said "good for you".  The relationship is intact and in fact he said it was one of the best "visits" he can remember.  I do not advocate telling everyone you know or strangers BUT some "need to know" and they will hear only what they need to know.  If they have questions afterward, I will answer them with the same honesty that I shared with them at the start.  Yes, I NEEDED to tell my son and I heard that he will quit worrying about me.  That was worth whatever embarassment might have happened.  Be bold and keep on living. Hopefully this will help others trying to make these decisions.  Thanks again to all who advised.

[Hawk]

Bert,

That was a valuable report and went much as I suspected and as Tim related in his experiences.  Our imagination always seems to expand these things into such mental monsters when they always seem to be very manageable in real life.

I know that lifted a load off of at least two people.

[Liam]

Bert,

I'm glad everything worked out.

Hawk,

Bwah ha ha ha :::devilish laugh:::  

Even God doesn't let us in on everything.  

[Hawk]

Even God doesn't let us in on everything.  

Liam, just which point that we were discussing does that apply to  Does God lie  Does he condone lying

I never said you have to announce everything to everyone.  That was never the conversation and I will not allow you to make that the conversation after the fact.  It was about lying to loved ones that were concerned and asked you what was wrong.  You directly advocated and justified lying to them.  Now you try to bolster your argument by acting like you are borrowing this approach from God.  PLEEAASSSEEEEEE!  Your correlation makes me dizzy as does your response to the question of how we are ever going to advance awareness, education, and research, when we can't even give concerned loved ones an honest answer when they ask.  

Your response was we can only be completely honest when anonymous or dead  

Excuse me  

Take a different view if you must Liam, but do not defend them with absurd analogies that have no application.  When you run out of valid arguments, until you think of one, remember the song from our youth "Silence is Golden"  

PS: Just to be clear, difference of opinion I can accept.  Irrational anologies and arguments drive me crazy because they are...well.... irrational.

[ninjagaiden]

Hi guys,

I've been away a few days, I've just read this post, and I think all advice was good (Liam vs the-rest-of-the-world). Both sides are understandable.

-I think if it makes you more comfortable about your condition, you should tell it to the relatives that are concerned about "what is going wrong" with you.

-If it makes you feel vulnerable and you are "old school" (ie you don't want to show the weak points because you don't want people to worry about you), then keep silent.

Of course the best option in order to raise awareness is to talk openly to our relatives. Especially to men, because most tend to think that their penis is indeed "indestructible".
Personaly, although being young, I'm old school (probably a thing that I share with my dad) and keep this to myself as much as I can. And this is not about embarassment (I don't give a damn about embarrassment), it's just because in the end, people will probably stop worrying about you and take this "lightly", because they won't understand how life-altering this condition can be.  You have to live it to understand it.

> If you tell them you have cancer, then they will show support, and probably a LOT more than when you tell them "I've got a crooked, shrunken penis, and that's basically my only concern".
After a few seconds (or a few minutes pondering), they will think: "you're still alive, so why are you complaining?"

So as long as it's not a "killing" disease that I've got, I'll keep my mouth shut cause in the end, who gives a damn about a problem that "you can live with"??
As an aftertought, I think with a killing disease, I would even shut my mouth more tightly cause I don't want people to worry about me...


Raise awareness if you want (I think it's the best option to help other guys), or shut your mouth if you want, but what I mean is just: don't expect great understanding from the telling. That's my POV only.

You have to do it only to raise awareness, and not in order to get support, cause I think in the second case, you will not receive this understanding for more than 10 minutes.  
And congratulations to the people who took a step forward and talked about it openly to their relatives. That's not my behavior, but I respect this brave and self-denying attitude.

Bye!

[Hawk]

Ninja, I agree with almost everything you said, including your last line about being blessed if you have strong family ties.

Several years ago my son and his best friend went 1800 miles from home to college.  His friend dropped out after a semester and came home because he felt he did not have many friends.  My son made a statement, "Making real friends is hard work, you have to be a real friend".  That is a very true statement.  It is also true of strong family relationships.  They seldom "happen" like random lightning strikes.  We have to cultivate the depth of our relationships.  

My experience is that we can only do that by being empathetic, sincere, honest, and getting out of our comfort zone on occasion.  People are more likely to open up to us when we open up to them.  I have dozens if not hundreds of examples.  Some are as simplistic as sharing my real name with forum members who then see that trust and do the same.  Some involve life long reaching out and wondering if it is having any effect only to be startled one day when that person reaches back.

Trust me, I am far from perfect or even remarkable in this endeavor.  Nevertheless these are my observations.  First be a friend and you will have a friend.  First be a true, intimate family member and you will cultivate one.  This is true even if it takes years to polish the rough edges off of a gruff old man raised from the "old school".  Someone has to break the cycle, or soon it is your grandchildren.

[ninjagaiden]

Hi Hawk,

I think I've been the one to try breaking the cycles in my family, trying to bring people back together. I'm a guy who stands in the background, live and let live kind of guy, and when my family (mom, sisters, brother) need a hand, I'm usually there. My life story is very complex regarding my family, I did my best to improve what could be improved. But I guess because of my dad's behaviour (very patriarchal, god-like dad), my family has been going in all directions during the last year, and I guess no miracle will bring us back together.
It's a mental, subtle thing, and I realized that my sisters were having a family now, my bro only cared about making money and saving money, and my mom is going desperate cause of my dad who behaves more or less like a tyran (big cliché I know, but still it's true).

I stop there my story, but I know it takes more than one person to improve the family ties. And it's not all the help I tried to give to my family (lots of DIY, babysitting, making parties to bring us together...) that will change anything.

So in my POV I keep everything to myself (I took that decision after taking time to analyse the "real", though subjective state, of my familiy ties)cause I guess no one wants to hear it, and the only one who truly cares is my mom and she's the last person I want to give worries to.
So I keep on with the DIY (my sister needs me now, she's going to open a hairdresser's shop, so I'll do some renovating soon I guess  ), and babysitting and all that stuff, but in the end I've lost my illusions about bringing things in a better situation.


That's why I respect the ones who can talk about it to their kids or close male friends, because it's very important, both for ourself and the others in general.  
Hawk, thanks for the wise words.

[ninjagaiden]

By the way, to come back to the original title of this thread, one question:

How do you guys cope with Peyronies actually?
I'm very curious about your replies, so if some of you could reply a few sentences saying what makes them hang on, that'll be nice to share your experience.

I'm particularly interested in the POV of the guys who had this disease for more than 5 years... and in Old Man's POV as well cause I think he's the Elder in this forum...

What makes you keep going? Pure hope? Setting objectives in the future? Changing your way of life (job, way of thinking) , alternative medicine, Medications (antidepressants and all...)?

I'm more or less considering taking antidepressants, but, well, I think I'll wait a lil' longer and try to find relief in something else before considering taking pills for my head.

Thanks for your replies,

[Old Man]

ninja:

You have asked the "BIG" question about how to cope with Peyronies Disease. Have had the mess for so long now, that I hardly remember the early "treatments" that my doctor and I used. We tried all the known so called cure meds in the early days which consisted mainly of vitamin E, Potabo, colchicine and some of the prostate shrinker drugs. None worked.

During the 1950s I was working for the U.S. Army Corps of Engineers on an extended tour of assignment away from my home town. Durng that time, I was referred to a radiologist who gave me 45 three minute bombardments of radiation in the affected area. Nothing happened with that and we moved on to the E treatment again. Still no help, but was able to function sexually with a little trouble. Being single at the time helped, but the Peyronies Disease did take its toll on my sex life and caused some problems with keeping partners for extended periods of time.

Later, the verapamil injections caused the Peyronies Disease to worsen and they were DCd. Then, after prostate cancer surgery, I was prescribed the VED for maintenance as the uro said. The pills entered the scene, but they did nothing for ED, so I stuck with the VED for that. Later, my uro and I worked out a regimen that worked with the Old Osbon Esteem manual model VED. That gave me a final step toward reducing the symptoms to almost nothing (I say almost nothing since there is only a very small area that is not fully recovered, but does not interfere, etc.) and today I can perfom without any problems whatsoever.

My entire history is posted somewhere on the Child Board recapped thread, so the above is only a thumbnail version. I managed to cope with the mess simply that giving up was not an option. My sexual drive was very pronounced and I just kept on trying things until something finally worked. You will have to do the same thing. Just make up your mind that you can have a positive attitude about it and go on with your life. Taking drugs to cope with it will only lead to deeper dependance on them and you know where that leads. So, keep your chin up, keep busy with projects or things you like to do and never give up!

Hope that the above helps in some small way and just keep us up to date on how you are coping with it.

Regards, Old Man

[ninjagaiden]

Thanks Old man for this optimistic reply,

That's indeed the kind of advice we need to hear, positive one.

I managed to cope with the mess simply that giving up was not an option.

I guess that's the attitude to take in life indeed, never say die, no matter what. I'll do my best to walk this path.

Taking drugs to cope with it will only lead to deeper dependance on them and you know where that leads. So, keep your chin up, keep busy with projects or things you like to do and never give up!

Again, wise words from a wise man. I'll keep my chin down for the sparring sessions  , but I'll try to keep it up the rest of the day. I lived through a few bad times (like everyone, no whining here) and I know what introspection is about. So I'll bear this stuff as long as I can anyway, hopefully I'll face it till the end and I'll overcome this situation. I don't know what future holds for me, but I know if I stop fighting now, I'm doomed. So I'd rather fight a lil' more.

I keep many projects in mind, and even though the end of them doesn't bring me much of the expected satisfaction, I'll do them anyway for the sake of it. My story is full of holes and is not going very straightforward (at least in my POV), but I admit I find a lil' satisfaction when I achieve a tough project.  

Thanks Old Man, your words have great value.

[Hawk]

We owe a debt to Ninja for asking such an important question about coping with Peyronies Disease.  This is at least half of the battle against Peyronies Disease and it is the half that were we can actually exercise control over the outcome.

I will add the most important things that help me cope which have not already been mentioned.  Those so far have been great.

I think successfully coping with Peyronies Disease begins with what all mankind requires, that is plain, basic, coping.  Adversity is the COMMON LOT of all mankind.  It can come in the form of being born with a micro-penis, a disability, an encounter cancer, divorce, bankruptcy or any of the limitless problems in the list of adversities that assault humankind's existence.  All of mankind has had to do more than learn to survive, they have had to learn to thrive amid adversity.  Most of these adversities are invisible to others and are carried privately in the  

I have many crises in my life, Peyronies Disease and ED are just two of them.  I doubt that anyone on this forum was or is more sexually oriented than I have been.  I went from truly phenomenal performance ability to ZERO ability in 4 hours of surgery.  I mention this to make it clear that I am not coping with a 15 degree bend that bugs me because it is not straight.

Humor - Anyone that reads "On the Light Side" knows I have maintained a sense of humor.  I remember nursing a car across the desolate Midwest U.S.(sorry mid-westerners). I was with my friend who has a great sense of humor.  We pushed, rigged mis-fitting parts (no foreign parts to be found), and the worse it got, the more we laughed, cracked jokes, and even played pranks on parts stores that did not have what we needed.  I laugh now just to remember it.  The ONLY difference between a great uplifting memory and agony and depression was humor.  That experience could have broken spirits and destroyed happiness for several days.

Someone once said: When I think about the times from the past when I was most alive, I begin to recall experiences that made me laugh. Certainly one of the best ways to ruin your life is to take everything too seriously, especially yourself. Noticed how really successful people are able to laugh at themselves?"
Adversity has humor and you must find it to thrive.  I have never in my life run across such well developed sense of riotous humor as I found on the police department.  It can be and it was clearly a release and coping mechanism that worked wonders in dealing with the negative things the mind has to process.  We can find some humor in most situations.  Notice that most comedy routines are based on stressful, unpleasant situations.

Purpose – We must work to gain a vision of our purpose for existence.  I believe there is purpose for being here and that the truly greats from Mother Teresa, to Einstein, from fields ranging from music to philosophy, depended very little on perfect sex organs or a "ideal sex life" to get them there.  As a sexual being, I do not discount sex, but it is the backdrop or trimming, to our lives.  It is not the central purpose of our existence and dwelling on the sidelight cannot be allowed to take our minds off of the central purpose.  We all must examine and find the answer to this question.  Why am I here?  I believe the answer has nothing to do with "for the sole purpose of self-gratification" or to meet an idealized conception of providing stud service.

Focus- once we find the purpose of existence then we focus on that.  A finger held close to the eye can obscure a mountain in the distance.  If we focus on the sidelights of life, we get to the end of life to find out we missed the entire point.  We have power to choose what we focus on.  I had a friend who is now dead.  He was of American Indian descent.  He gave me a copy of a poem about having a soaring eagle in his soul that could soar above all the earth.  It was lofty and noble, but he also had a wolf.  The wolf lurked and stalked him, always thirsty for his demise.  The poem ended with the lines:  "Which one will gain strength and win this battle for my soul?  The one that I feed"

Attitude- All of these deal with attitude.  Attitude changes everything. To save typing, I ask you to ponder the many instances when exactly the same thing can happen to 2 people and the impact on the two is totally opposite.  The examples exist with major events and daily happenings with all of us.  Only the intangible of attitude is different.  Attitude changes EVERYTHING.  The good news is that we can gain full control over attitude.  

There is much help to be found to help us develop all of these coping skills

[j]

Although in my posts I often make the point that none of the available treatments work, one thing that keeps me going is the belief that there is going to be a solution at some point.  The AA4500/Xiaflex/Auxilium story is long, discouraging and more than a bit laughable, but at the end of that road a product is probably going to appear, and it should have a real impact, especially as urologists learn how to use it effectively.  It is the first and only non-surgical treatment for Peyronies backed up by credible studies showing that it works, and the only one to attract serious investment money.  It might happen next year, or in '09, but I think the probability that it will eventually happen is now very high.  

Another way I cope with this thing is by staying physically active and keeping myself in decent shape in my mid-50s.  Peyronie's can corrode your self-esteem like battery acid; you absolutely must counter that, somehow, and exercise is one of the most effective ways.

[BertCobb]

The most important thing in success is to avoid two groups of people: the joy-stealers and the nay-sayers.  I have encountered both in the past few months.  When I was diagnosed with Peyronies Disease, I went through all the stages of any loss: denial, anger, depression and resolution.  I learned all these in school but they meant little to me personally until I had to face them.  Any stage can pass quickly or last for months to years.  Be kind and patient with yourself.  I lost both of my parents withing a few months but that was "normal".  Losing the ability to have sex was a kick in the butt.  I don't know any formula for coping.  Formula is good for babies but we are adults.  Any two men with Peyronies Disease have totally different causations and motivations to get well.  I have spent the entire month of September on sabbatical from people in an attempt to re-evaluate myself and my relationships.  I have been angry at God, angry at myself and even those closest to me.  In reality, any search for God is a search for self.  In summary, I have decided that the only thing that keeps me sane is the fervent hope that somehow I will survive this trauma and come out swinging (no pun intended).  I just feel like I am waiting for the next shoe to drop and fear will kill you dead in your tracks.  I will keep on looking for treatments and doctors who might understand.  I do not understand their ignorance or their complacency.  What we need are more urologists with Peyronies Disease so they might get to work with research into cures.  When all is said and done, usually, more is said than done.  Think of me and I will think kindly of you and thank all who have been there for me so far.  I know it may sound trite but I have been taking it one day at a time.  My wife wishes me not "good morning" when she leaves for work but a "good penis day".  God, I love her. Keep hope alive until we overcome.  The singing of Kum Ba Ya might be appropriate here.

[Liam]

I wish I could offer a pearl of wisdom.  I can't.

I try to do what I can and try to be honest with myself.  I take my joys where I can and try not to focus on the negative.  I party hard and pray harder.  I laugh at everything including (especially) myself.

[Hawk]

Bert reminded me of one thing when he mentioned stages.  Most do go through a series of stages even if they are not identical. And we do go THROUGH them meaning you naturally come out the other side.  As much as you may think otherwise, coping does get easier.  I think there will be almost unanimous agreement on that by anyone that has had this disease for a few years or more, especially if the Peyronies Disease is not progressive during this time.  

Old Man's advice about hope rings very true especially for the young men.  Tissue and organ regeneration is an entire area of research that is progressing and is very likely to net huge results in the next decade or so (in my humble opinion).  So you fight now with hope for improvement and with hope that help is on the way if you don't give up.

[Hitman]

hmmm I see a lot of negative replies except for Liams.

I will just speak for myself here, the disease hasn't really changed much in my personality or in my perceptions of things. Hopefully when I get into a relationship a couple of years from now my perspective won't change and remains positive. for me as long as I can get an erection thats all that matters. if surgery is the only way out then I will not hesitate. but I guess I have a milder version of the disease so maybe I'm looking at it from a different ''angle''.

[ninjagaiden]

Thanks guys for your replies,

I appreciate your advice, all of them, and we sure do have different ways to cope as we're all different...
Hawk, I agree, when the you go through these stages (I've just got out from "Anger" (but inner anger, no outward expression (or little), and I want to skip "depression" so I'm getting a move on in order to avoid dark thougts cause I don't need them, I've know introspection for years now (probaby everyday since childhood, I've got it in my genes probably  , and I've got the feeling that Anger will come back again from time to time, like a fire that can't be completely stopped.

But for sure, when this curvature, ED Peyronies Disease get stable, we tend to get more positive than when the "sh..t is hitting the fan" as you say in English  . I've got stable for about 1 year since that day I noticed the "big change". I hope it won't change again soon, since I'm trying to get in better shape. Anyway, if its gets worse, that's life.

As we say in French, "l'espoir fait vivre" (? "life is hope" ? approximate translation), so I'll keep my fingers crossed for new treatments to appear in the next years. Maybe it's naive, but anyway, I'll wait for this scientific progress.

Hitman, I wish I had your way of thinking, the "as long as it works" attitude. But I don't have it.
Liam, keep partying and laughing, that's the best mental therapy there is...
That's why I try to stay with the funny, cheerful people. Bertcobb, joy-stealers and nay-sayers are definitely to be avoided (I can't see the point in standing them, even more since I had this curvature worsening, since these people bring nothing positive).

Hawk, I must admit I'm curious about reading this poem... I'm rather open to these spirituals things, I can't really bear modern capitalistic life. Reading only the short version you wrote, it gave me a strange feeling in the chest... It's like listening to the dalaï Lama or stg, their words have more impact on my mind than quotations from people who lead a normal, non-spiritual life.

Bye, keep smiling,

[Hawk]

hmmm I see a lot of negative replies except for Liams.

Perception is an amazing and an interesting thing.  How could you possibly see ANY of those replies as negative

[Liam]

I thought the other responses were positive, too.  

[Hitman]

I see desperation in some of the replies. It seems we're shooting for the extremes here. I think the definition of ''treatment'' seems to differ from one person to the other.

[Liam]

Hitmman,

The bottom line is the condition will do what the condition will do.  The most important thing we have control of is our attitude.  If sometimes we set our goals too high or have a little false optimism, it won't change the course of the disease.   And, as long as the treatment isn't harmful, we might actually hit on something that works.

[Hawk]

Hitman,

I see desparation nowhere in a single sentence in any of the replies.  I am not sure what your sentence

we are shooting for extremes

means.

I think the definition of ''treatment'' seems to differ from one person to the other.

I don't even think "treatment" is the issue being discussed. What in any of the posts dealt with the "definition of treatment"?

My post dealt with a well developed sense of humor, feeling alive and loving life.  It dealt with having purpose in life that drives and motivates one to the fullest.  It dealt with having a healthy positive attitude.

Oldman talked about a sense of hope and persistence.

Liam spoke of focusing on joys as they come and not on the negative

BertCobb is in a place where he talks of holding on and fighting even when you are in a temporary slump.

J, Talks of a hope of a new breakthrough that is bound to come.  His hope is that it will be sooner rather than later.

Ninja, a fairly new patient, talks of fighting and focusing on projects and refusing to let the initial stage of depression get the best of him

I am sincerely curious as to what your idea of a more upbeat type response would consist of?  If you have something even more upbeat, we could all benefit from hearing it.  Please share.

[ninjagaiden]

I have a smile on my face each time I see Hawk and Liam agreeing on some point.
It's so rare, like a full solar eclipse...

...
...


I don't see desperation either in the others' posts, maybe a little in mine problably, but I mean we're trying to keep this feeling under control with objectives, faith, treatment methods and so on...

BTW, I don't know your case (and not much of the other people on this forum, but I know some had tough version of the disease), but what would you think if you lost 30, 50% of your erection ability, or if your thing got turned so much (let's say at least 45°) that you feel pain during sex and you wake up each morning wondering if it's gonna get worst today to the point that your lil' buddy would go 70° (in any direction), start shrinking as well (to add some extra difficulty).

Just a question, because you say you may have a mild version of the disease, and I wonder how you would react if you started even losing this strong belief that "as long as I can have an erection". Some erections could scare you sometimes...

But again, I know it's not the topic of conversation, but I'm wondering what you would think in those situations, and if you would not consider starting treatments as well... of if you would still say "never mind".

If you say answer 2, I think you're a zen master  

[Hitman]

I have almost nill erections and my penis is shrunk and thats not surprising considering the condition I'm in. my curvature is around 20-30 degrees at the moment.

I don't see a reason to be scared from having erections nor do I see a reason why my belief should shatter or become weaker all of a sudden.

As for pain, thats understandable, well all go through times of pain and we all try to fight the devil in our minds. But I probably will never understand what it means to have a 45 or 70 degree bend, because I've never experienced one.Yet there are always options, and through these options- some people might not be comfortable with them others may not- and other future options there is hope. We create hope.

If it wasn't for my belief in a better quality of life I wouldn't be here. I lost both of my parents a long time ago. I cried, felt sad, felt sorry. But how long am I going to do that for?? How long am I going to feel emotions of sadness and sorrow for something that was not in my hands and that I couldn't stop?? Life doesn't work that way.

Sadness and depression. neither of these two add any benefit to our condition or any condition for that matter. The power of placebo makes quite a positive impact.

MY progress has started with me improving my digestive health, which after years of suffering has finally seen a significant improvement .

regards to all

[ninjagaiden]

Hi Hitman,

Thanks for this reply, and you definitely have a nice way to cope, not letting this thing shatter your self-esteem. I wish I could do that. As much as I dislike having a good self-esteem, this problem make me feel a little insecure sometimes, especially since it can f..k up a love relationship easily (but that depends on many factors of course, direct and indirect, and on the person you share your life with).

Digestive pb suck, they're hard to take, the pain is a visceral one, and it can go tough sometimes. I wish I could improve my condition on this point too, cause I think it's linked to my weight loss and big physical/mental fatigue. Hopefully we'll recover, just like with our penis problems. We got to keep faith in tomorrow.

"After the rain comes the sunshine" (not sure of my translation).

[Hitman]

i think that being honest is the best thing to do. honesty is the best policy and you'll be surprised how far that can go. I can understand how you might feel a sense of security and this is why its important to have someone who can just be part of those feelings.

yeah those digestive pbs are really annoying esp if you get gas trapped inside the intestines. man that hurts big time. I did notice a couple of things I was doing wrong. Also I did a 30-day flush and together with some probiotics things are going very well so far.

[ninjagaiden]

I understand honesty with the partner, and usually she notices it (about curvature especially) anyway so there's no need to hide it. But I'm probably not with the proper person to talk about this, she usually gets angry when we have "real" conversations (not smalltalk), and not only about this stuff, but about almost every topic of conversation.
So I keep it to myself 99% of the time, and maybe that's better than whining all the time about such or such problem . If I were with a more open-minded partner, maybe I would feel weak talking about my problems...but I've got a strange way of thinking I guess.
And in the end I don't know if people really care anyway (partners, family...). I really don't know. I guess that depends on the quality of the "ties" we have with the other person. And that's hard to evaluate.

Concerning belly problems, mine are located in the stomach (stomach pain is nice too  ), and no appetite whatsoever for the past 2 years. Like the expression "I'm hungry" has no meaning anymore. Fatigue and sore muscles have a meaning on the other end  . Pain was the main pb in the start (sometimes you think you have a chainsaw going on inside, feels gooood), but now it has vanished almost completely, leaving this no appetite, fatigue and nausea kind of symptoms. And no treatment advised by my doc'  

Take care!

[Hitman]

so what are you planning to do about the no appetite. Cardio is a very good option.

about the curvature, yes when you don't have an understanding partner it becomes even a greater burden. I think that some people do care. the quality of those ties would be pretty obvious and you can easily tell.

anyhow good luck with the treatment you consider for your curvature. I'm 24 and single so who knows maybe in those coming 6 years of my life something new arises.

[Liam]

Recent discussions of appetite have been moved to "General Health and Fitness not directly related to Peyronies Disease".

Thanks,  

Liam

[BertCobb]

Dear best friends I have never met,
    I have learned when attacked with any problem to dig for answers.  Faith is what we come to when the answers are not attainable or knowable.  My wife noticed that my penis was "different" than before but did not want to hurt my feelings by mentioning it.  How many others have had the same experience?  Now for a little sexual information that might help.  MOST female orgasms arise in the clitoris and NOT the vagina.  A woman can orgasm without a penis inserted.  SO, I became a better lover by studying and learning how to generate her orgasms EVEN if I lose my penis entirely.  Inserting a penis is for MY benefit, not hers.  Most of the sensation inside the vagina is in the first 1.5 inches.  Hand and finger pressure can generate the same feelings for her as a penis.  Women who worship a penis that is large are not what I need or want.  There are intelligent women out there who want a man who wants them and cares enough to give them sexual orgasms.  Look for them.  The top of the vagina lacks nerves so punching that area only stimulates the head of the penis.  Talking about sex when not engaged in sex is less threatening to either partner.  Sex occurs mainly in the largest sexual organ THE BRAIN.  A large penis has little value outside the locker room.  WHATEVER it takes to achieve sexual gratification that is consented by both partners in the privacy of the bedroom is OKAY and not "dirty".  I am a man with or without a penis or testicles.  I am undergoing all this expensive and arduous therapy FOR ME, not my wife.  She is satisfied with what I have.  I am loved with or without a penis.  We do not know that unless we discuss it.  Sometimes you have to hear it almost daily to get it into your mind and believe it.  Peyronies Disease has actually generated ample opportunity for honest discussions about the present and the future.  I am most fortunate and I KNOW IT.  I wish the same for each of you.  I do not have the answer for you.  You have to seek it for yourself.  I am my most ardent critic.  I wonder when I will get up and go through my day without thinking about the state of my penis.  Then, I will know I have "healed" whether my penis is straight or not.  Getting discouraged is EASY.  Staying in the game and striving for health takes work.  If one thing is not working, try something new.  Variety is the spice of life.

[Hawk]

In your last post under another topic, you said

I've lost some of my illusions of a bright love life with my girlfriend. I may have many partners because of this problem, and I sure don't like that, cause I'm a romantic guy, but... I'll take the blows if they come.

I hope that is not like it sounds.  If there has been a decline in the relationship, you have to determine if it is the 1. Peyronies Disease, 2. something totally unrelated, or 3. your reaction to the Peyronies Disease.  If it 2 or 3, you have a large amount of control over those.  If it is 1., then some other crisis in life would have likely jeapordized the harmony down the road anyway.

Good luck my friend.

[Grant]

This disease is disrupting my life and I feel at a mental low. My bend is about 70 degrees. I've lost length and girth and can only have rear entry intercourse. Has anyone had recovery from such a steep bend? My urologist says surgery(nesbitt tuck) is the only way to straighten it.

[Tim468]

Hi Grant,

Some of us have had dramtatic bends that got better with the treatments we have used. Kimo had a "donut-like" bend and got better with Verapamil. I had a 30 degree bend that is now about 15-20 degrees, using the VED. Old Man had a larger bend and a dent (I think) that got better with the VED.

Many of us have ongoing problems that have not gotten better too. Despite the improvement in my angle, I continue to develop new small dents which continues to upset me. Getting to a "low" is par for the course here. The NEsbit may be the only surgical correction one can do currently, but trying alternatives first makes sense.

Tim

[George999]

I am a man with or without a penis or testicles.

Just a little snippet from one of the best posts on this thread in recent history.  It takes a real man to understand little details like this one.  I really do suspect that many Peyronies sufferers experience problems in their love life more as a result of their own dissatisfaction and sagging self image than as a result of the reaction from the spouse or partner.  A man without hope is a man without hope whether he has Peyronies or not.  And a man with hope is a man with hope in spite of the fact that he might have a Peyronies issue.  When a man can see beyond the limitations of his penis and his testicles, life just gets so much better, and even the "disability" itself fades in terms of its impact.  It is just so sad and so evil that our society tends to project sex as the only worthwhile aspect of life and also tends to do it in a way that distorts our expectations so much.  Its as if anyone who is not a porn star just doesn't have a life.  This is a huge lie and perversion and those who can recognize that fact will spare themselves a lot of pain.  There is just so much to enjoy in life and its a huge waste to miss out on that by fixating oneself on his (or her) sex organs and sexual function.

[jackp]

George, Bert, Hawk and others with Peyronies Disease
I count myself among the lucky men with Peyronies Disease that has developed to 99% ED.
Why am I lucky? My wife of 39 years said to me "Jack, I did not marry you for your penis". She knows my size has shrunk both in length and girth, she knows that it affects me emotionally. She never complains and every time we make love, even without penetration, she makes sure I'm satisfied. Different things at different times. It is something all couples have to work out between them selves because no 2 are the same.
This is a great forum. I am glad to have found it. Keep up the  good work we guys need it.
Thanks
Jackp

[pal-31]

Grant,

Hang in there, who knows what may be on the horizon. This new Xiaflex from Auxilium may be of help to some of us. It has shown some good results in reducing the angle after a series of injection. There is some good info on their web-site. You can google them. I dont know if I can post the link here.

Meanwhile, you could try some of the other treatments that some of us are on (VED, PAV, etc...)

Good luck and keep the hope
Pal

[Bullfrog]

I'm a newly diagnosed Peyronie's sufferer, and this is my first posting to the forum.  I am lucky in a way in that, although I am 50 now (51 later this month) I began the process of recovery from alcoholism in 1981, a little over 26 years ago.  I haven't had a drink since then, and some of the thought processes I learned to use in that endeavour are useful in handling the psychological effect of Peyronie's now.

Primarily - if I can't directly affect or change something, there isn't a great deal of profit or benefit in worrying about it.

Some recovering alcoholics use this little prayer:

God grant me the serenity to accept the things I cannot change
The courage to change the things I can
And the wisdom to know the difference

If that sounds a little trite, it probably is - but it is effective.  I can't change Peyronie's, and nor can anyone else cure, change or even understand it fully it seems at present.

I am also fortunate I think in having contracted the disease relatively late in life, and having had a wide and varied sex life as a younger man.  I also have no partner now, and haven't dated in quite a while.

When first diagnosed, I took three weeks off work, and slept, worried and felt sorry for myself for most of that time.  I don't want to live like that though, and am not going to.  There is a great deal more that life has to offer.

[Hawk]

Welcome to the forum Bulfrog and thanks for contributing.  Your entire post was dead on but I was particularly struck by this sentence:

When first diagnosed, I took three weeks off work, and slept, worried and felt sorry for myself for most of that time.  I don't want to live like that though, and am not going to.  There is a great deal more that life has to offer.

We have infinitely greater choice in our attitude then we often like to take responsibility for.  The same message was communicated in part of George's post.

Again, welcome aboard.  Hopefully you will continue to gain and to give support in this battle.

[Angus]

Welcome Bullfrog and I'm glad you posted. There is a lot of support to be had here; it's a good place... and I'm looking forward to your comments and thoughts.  

[youngPD]

Hello everybody,
First of all, I wanted to say this group is a very good one.it's helpful and supportive ,though I have been lately just "lurking"...

I haven't posted here for quite a long time and to be honest, the last two years this disease really shattered me in any aspect. I reached the same points Antony reached, and our stories are almost identical, apart from one thing – my fibrosis condition is probably the worst case you ever had on the board.

My fibrosis is so bad that even with any pills like Cialis or so ,my organ falls down very quickly .I lost significant size during those years (about 4.5-5 cm less, and lost girth as well). In the flaccid state it almost looks like the organ of a child now. That's even worse than the impotence itself.I do not imagine there is even one member on this board who ever had it so bad and in my young age (33).

It had the same catastrophic effect on my life as in the story of Antony (left my job ,lost my friends,lost my will and ambition to do anything, and so on).we (antony and myself) were the same types of people before the onset of this disease (I had many girlfriends ,I used to be kind of a "party boy", had many friends,earned my money and so on).

I have to admit I felt suicidal for sometime, but as I am scared of it I gave this option up.

I'm at this point now that I need the group's help in trying to see if I can ever cope with it. I'm taking into account today that if I have any chance in life to sexually function, it would be the VED (in case that it would work for me and won't be painful). The implant, even if I considered this option,it looks problematic to me ,since I am very calcified there and I am not sure if this is possible at all ,let alone what I heard about those surgeries and how people are left short of 1-2 inches on top of what they lost by having Peyronies Disease.

Before this disease, I always had no problem to court and date any girl I wanted, but now, even if I want to date a girl, I don't know even technically how to do it in my condition.

What would I tell her? Some people told me that you first better start dating and just tell her later, which I think may look like a con. Some told me I should tell about my condition from the beginning. I'm so trapped .for example, a woman started talking with me in a bar, yesterday. She was very pretty and so and I know her friend as well (and usually at this point I would ask her out but this condition of mine holds me back. from the outside she sees a very warm and a person who shows affection ,since I am like that.and then I can't do anything). then I told myself – women talk about things like those. If I asked her out and told her in some point that I can do nothing really, I am so scared of having her response ,and I am scared of having my name in her friends conversation (in my town). I just don't know how to start things like that.how to overcome all those traps.

I would appreciate if anyone young like my age (33), who has became totally impotent at this age, and how did you cope.what has he done at this low point ? it's not that I underestimate people who need to cope with it when they are 55-60 and married ,but I can promise you it's not the same situation. if I had today an understanding wife of 30 years it would be a totally different struggle than being so and single at the age of 33 .

Another thing is how do you cope when in this age your penis in the flaccid state shrunk so much that it looks like very small ? I am serious, how do you cope with this sight and the low self esteem it drags?
Some days ,even looking down at my groin makes me feel so down about it.I know that I can't change it and the attitude should be : "try not to moan about things you can't anyhow change" ,but yet ,it is hard to see it.

Thank you for your answers and help.

Ron

[antony]

hello ,

I agree with youngPD -Ron, we can feel what we live coz aparently we have exactly the same and rare very serious case, to the same extent, appeared in the same conditions, and we had the same type of life.
I just think it's not possible to live in that condition, especially at 26 or 30 , when life is not built yet.
I agree we must do everything to fight IF there are 'real' solutions to try (VED is maybe one). Pentox and vit E seem not to work.
A proverb says 'hope makes you alive' (i don't know exactly to translate it in english), so , at the contrary,when there is no more hope, there is no more life.

Ron, i would just add that your fibrosis case is similar, not worse (just you have it for longer), coz , as for me , with cialis it works less and less (if it continues like that, it will not be maintained more than some seconds) and my size decreased a lot too. because i continue to try intercourses with my gf, i don't know if i damage the tissues more or if it helps ? One doctor told me having intercourse would help to 'stimulate', another one told me it would damage the tissues more and more. A doctor told me VED could help, another told me it will damage more... What i know is at flaccid, it is more and more diformity penis, and in erect... no, in fact there is no more erection.

We have an horrible thing, that make us disabled physically, that is not visible outside, (so not understandable) that is very delicate and hard to speak about, that prevents us from enjoying present, and planning future, and changes the persons we are, both fisically and mentally.

Good luck, coz if we heal from that, we are 'warriors', but if not, in my mind, it's understandable to have dark ideas, coz it's no use to be here to live like that. (i precise that i am totally against suicide and before that i was not weak at all, very strong mentally, but when something touches you so deeply in your identity and you don't recognize yourself, it's just not livable).

[Hawk]

Anthony and YoungPD,


I have no desire to debate whether you are beyond hope.  If you are convinced you are, then you win the debate.  No one can ever convince you otherwise.  I do share my perspective however.

I want to start by saying that I have never heard anyone even suggest they had the sexual staying power I had prior to prostate cancer.  My wife wrongly assured me,"if any man ever came back from prostate surgery, it will be you.  Don't worry!"  I went from legendary staying power to TOTAL, 100% ED in four hours of surgery.  After many months, just as it looked like my erections had some small chance of returning I then developed Peyronies Disease and lost 2nches along with loss of girth.   I know something about trying to get your mind around sudden incomprehensible loss of sexual ability.  Granted, I was 51 and I was married, but to suggest that this diminishes the impact on your sexual identity is just plain wrong.  I have been your age.  You have yet to be my age.  It is true that you have life styles of dating to worry about that I don't currently have.  I did however have an added pressure you cannot relate to.  I had the pressure of seeing the impact my loss was having on someone I love with all my heart.  I had the added sense that my inability was causing challenges to someone I care about even more than I care about myself.  I had the strain of dealing with the stress that my attitude was having on the most important relationship of my life.  It is one thing to feel loss of sexual identity and loss of manhood in perusing sex.  It is another to feel that and then be in a bed night after night with someone whose very presence constantly reminds you of what you can't do.  There is no escape, no retreat to a loner type life style to give yourself time to sort it all out in your head.

I share this because as M. Scott Peck teaches on the very first page of his book "The Road Less Traveled", it is the very nature of humans to look at life's difficulties as though we somehow have it far worse than others.  It is always somehow worse for our group, our race, family, our tribe, or our gender.  As humans, our lot is not identical, but mankind has struggled with the same issues since the beginning of time.  The loss we feel and the process of victory over that loss is the same process that a 20 year old soldier feels when he is sent home with no legs.  He may argue he has it worse, we may argue we have it worse, but in any case, the process of victory over the loss is the same.  Many millions have have fought that same fight and won.

To YoungPD - I hope other posts address some of your important questions but I will say that there is no right answer.  People are individuals.  The approach that serves you best with one woman may be the wrong approach with another.  You are bound to fail in your approach at times.  That is life.  You will however learn to offer that which women find irresistible if you try.  Mentally I have largely recovered.  I am convinced that I could cut my penis off and I could still attract and charm many women.  Out of those, there would be many that when they came to know the total package, they would be very satisfied with what I had to offer.  It is true that some would not be satisfied when the got to know the total package, but that was the case with all of us even when we had a perfect penis.  One approach did not work then and it will not always work now.

Trust me, things will get better.  There is life and there is hope.

[Tim468]

Hawk, I could not have said it better myself.

I appreciate that YoungPD says that he is not discounting the pain of those who are older. And who knows -  he may be "right"; this pain we have all gone through is worse if your disease is sudden, rapidly progressive and occurs while you are young. But the fact is, we all suffer, and some of us older men give up and wallow in self pity and some of us younger men do not. Though I am no longer young, my disease came on while I was young and I felt cheated and all the other things described here by these guys.

But the fact is inescapable - we are NOT defined by our penis alone.

Perhaps if their disease is so terrible that it cannot be fixed easily, they are candidates for the radical dissection and reconstruction of the densely fibrotic penis with implant placement. I have posted before about that option - it is there as a safety net to assure them the option of having penetrative sex in the future. But I have also heard (perhaps not from them - I forget) that "I will never do that!"

Well, the facts are this - there are options, like it or not. My partner assures me that if I decided to go that route some day she would support me, and if I never was able to have intercourse the way we like again, she would love me nevertheless. I would be doing it for me. And we got involved and made love for the first time with me already having Peyronie's Disease. If a young man thinks it is hard to imagine dating and stripping for the first time with this disease, he ought to imagine trying it for the first time with a bigger stomach than I like, small varicose veins in my legs, grey hair, and flabbier muscles than I had at 25!!

I could make an argument that *I* have it worse!

But I will not do that. We all have our own paths to take here and all have to grieve the loss of what was, and find a new way to what we can be. And if an implant and reconstruction seems impossible, try reconsideration after 5 years without sex. Maybe it won't seem that bad by then.

Tim