Psychological Component - Coping with Peyronie's Disease

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MasterShake

Hi guys I'm back and want to rant a little bit more...

basically, I dont see my wang getting any better, still indented while flacid and filling up, still completely depressing.
every time I go to the bathroom, take a shower, change my clothes, there it is staring at me, the same problem.
Along with that, anytime my mind is free to wander, it drifts to thoughts of my peyronies, and how i think its ruining my life.
Admittedly, I'm not a bad looking guy, but i have horrible confidence problems which have only been made worse in the nearly 6 months since figuring out I've had peyronies...
It's been over a year since I've been sexually active, and after that I was on a cold streak and feeling unlikeable. and I just started getting back into the swing of things when the peyronies hit, which then put actually having sex/a relationship/a life spent not alone as far from my mind as possible.  I sit back and watch all of my friends have random hookups, develop relationships, and enjoy life. but I sit here on the bench in the dugout like the one kid on your little league team, watching everyone else succeed and find happiness.
I try to find solace in what few things still make me momentarily happy, music (im a drummer), video games, wasting money on things i think will make me happy...but whatever relief they offer is fleeting.  Having just turned 20, going into my junior year of college, and having my whole life ahead of me seemingly pointed in one definite direction because of something that isnt really that bad, but heavily matters to me, seems unfair. (yes i know lifes not fair)
All i want is normal, but it doesnt seem I'll ever have it.
on top of the peyronies, I have a pretty bad case of sebaceous prominence (google it) which most guys have but to only slight degrees....
Basically, no confidence, desire to try, happiness, or hope seem to be within me.

RichB

Do you have a bend, Mastershake? Have you still retained all of your sexual function?

MasterShake

since i have a wasting and the plaque, albeit not completely hardened yet i dont think, goes all the way around my penis, but seems to be more prominent on the right side.  If i did have a bend, its probably only like 2 degrees or less to the left, and im pretty sure I've had it since before the peyronies set in.  although I havent had sex since peyronies, I'm more than positive i still could, just that getting an errection looks a little awkward at first.

jackisback

Girl on top is the best way for me to stay hard, and have an orgasm. For me the risk of worsening my condition wouldn't concern me, but everyone must weigh their own risks and benefits.

RichB

Well, I'd have to say that things are looking very good right now, and I don't think there are any chances of me relapsing into my previous mental state any time soon. My Peyronies Disease has remained pretty stable and I'm quite confident it isn't going to get any worse without any more subsequent injury, which I have been careful about.

I've been taking nothing but a daily men's health vitamin, exercising regularly, reading regularly, and just generally have been feeling up about things. I have a new girlfriend who, to my surprise, when I brought it up, said she didn't even notice :) And I have to say, I am extremely happy in this relationship, morenso than I have ever been in my life. And she has said the same!

I realized that a lot of my problems were caused by a disillusioned and unhealthy view on relationships, sex, and how men are viewed by women. I have since learned that a lot of what I thought before this happened was very much untrue. My ex had the same views on sex and relationships, so that brought it into a false reality that made me think everything I have learned was in fact true. Here's the dealio folks:

1. GOOD women will not judge you on your sexual ability
2. Love is NOT based on sex
3. Most women don't care about your penis size or shape. (see #1)
4. More than likely they will be the ones self conscious about their own bodies, a lot more so than you!

To you young guys out there: This is coming from someone who just turned 20. Enjoy yourself. Take the time to learn how your body works, as most men have not. There are things that are a lot worse than Peyronies Disease, and THERE IS TREATMENT. TRY IT.

One of the toughest hurdles was for me to learn to have confidence and accept myself again. Once I did that, things were a lot easier. I thank all of you for your help. It has meant so much!

jimifan

Hi Guys,  I'm new to this forum and found this site as I searched for support for men diagnosed with Peyronies.  It's had an awful affect on my self-esteem, my marriage, my emotions, etc etc.  I'm 39 years old and I've had Peyronies for almost two years, but was not actually diagnosed until June 2009.  I finally went to a urologist once sex became difficult, not due to degree of bend, but because of lack of rigidity and inability to sustain an erection.  I so appreciated reading your posts and, though it forced up a lot of emotions while reading, it was incredible to read accounts from men who understood what I was experiencing.  I've been very isolated emotionally from the moment I was diagnosed.  I think it's the uncertainty and the lack of reliable treatment that initially upset me.

The actual pain during an erection had already begun to subside when the ED problems started.  I'd much rather have the pain.  I've lost well over an inch, probably closer to two inches, in less than two years.

While reading through the forums I'm overwhelmed by two competing thoughts:
1. many men are suffering with Peyronies worse than I am.
2. I'm afraid my condition will worsen to the point of requiring surgery or an implant.

In short, I'm very scared, alone, and glad I found you all.  Look for more posts from me to come...

Bobby

jackp

Jim

Read the post just before yours today. All I can say for Rich is you are wise for a gentleman so young.  Once we understand that our penis does not define us or our relationship it is easy to move forward.

Jim, you said "I'm afraid my condition will worsen to the point of requiring surgery or an implant." If you will read my history you will see I lost 25% of my penile length, that was 1995. I had an implant last October and I now have regained 90% of my loss back and a girth I hardly remember as a teen.

Do not let fear consume you. There are treatments. Surgery should only be considered after other treatments fail. Go to the VED thread to me that is the best therapy short of surgery. Find a Male Sexual Function doctor and not a general practice urologist for the best treatment.

Good Luck, stay focused on the outcome and not the negative.

Jackp


Maverick

Hi, I'm new to the forum as well. I was diagnosed in May of this year - actually I diagnosed myself and then went to see a Urologist that patted me on the back, called me a "champ", and told me there is nothing to do but take Vitamin E. He actually said that Peyronie is a "self limiting disease". I walked out of the office quickly so that the urge to punch him would not overcome me. He obviously has no idea what the full physical and psychological implications of such a disease are.
I'm 31 years old, and still in the angry phase. I'm angry at how there are many sites out there that talk about Peyronie, yet a cure is nowhere to be found. I'm angry how doctors now use Botox to keep faces young, yet nothing has been done about Peyronie since its discovery in about 1743!!! 1743!!! Is this a joke? Is this a bad dream? They have drugs that give men erections, but none that can disolve a piece of scar tissue? The H1N1 vaccine took all of 6 months to develop if not less, but this disease around for over 250 years - nothing.
I obviously sympathize with the stories I read on this forum. However at the same time I ask why there have not been any real posts in the "Awareness/Advocacy/Activism" section of this forum since 2006 or 2007? Is part of the problem the fact that men suffer in silence due to embarrassment and therefore no one knows about this disease until they wake up one morning and notice that something is wrong with their organ. Out of the thousands on this forum, doesn't anyone have friends, relatives or contacts in the health and research organizations? Has anyone asked their buddy working at the pharmaceutical company if he/she could talk to the head of research about investigating Peyronie?
My comments are not meant directly to anyone on this forum. It is just a rant I guess. Personally, I've already started calling and emailing anyone that I think can help. I will post my responses in the relevant parts of the forum based on the nature of the company/organization I have contacted. My goal - cure in under 5 years.
Thanks for listening and good luck to us all. Only by shouting at the top of our lungs will anything be done.

Old Man

Maverick:

Welcome to the Peyronies Disease club!! Sorry to hear that you have developed this horrible mess. You are one of the few that has the "guts" to stand up and talk about their situation. You are right, men for the most part, are very reluctant to talk about their individual problem(s) with Peyronies Disease. They seem to clam up when wanting to talk about their size, shape, sexual disabilities and personal genital problems. Yet, they are very quick to talk about their sexual prowess when in a group talk fest about sex and how they "conquered" a one night stand!

You are right that this mess has been around for over 250 years, nearly 300 now, with no successful "cure" or even a viable therapy/treatment. I have had the mess for over 55 years now with many therapies/treatments gone under the bridge since it first manifested itself after a sexual encounter gone bad. My history has been published through many posts on this forum and elsewhere on the web.

There is really no known cure, therapy or treatment that you can try that guarantees you success. Each individual case of Peyronies Disease is totally different from any other. There are certain similarities, but none are exactly the same nor do they react to the same to therapy or treatment
.
Several guys including myself have undergone many trials and errors in trying to get something that would work or help in any way. To date, there is very few that have had any permanent success stories. My Peyronies Disease appears to be in an arrested state as I have not had a flareup in the past 10 years, just a few problems with impotence due to a radical prostatectomy.

I admire your spunk in wanting to holler from the roof tops about this disorder (can't really call it a disease). So, let the forum know of any progress you make in getting the attention of some source that has enough power to get some research started like the flu influx has gotten. Until and unless a very high up governmental official recognizes the problem and sponsors some bill to provide funds for research, nothing will be done (this is not a political statement - only a thought). I personally know a urologist that attended a former president that had a rather severe case of Peyronies Disease and that president simply just ignored the urging of that Navy urologist to do something about Peyronies Disease and probably to this day still suffers the ill effects of Peyronies Disease. The percentage of men who suffer from this malady is totally unknown, just estimates that cover a wide range.

At present, there are several of us who have had good success with arresting Peyronies Disease by using the VED, traction and some with oral therapy. Implants have been done by several members here with great success. However, it is highly recommended that implants be the "last resort" and all other therapies/treatments be exhausted before having that done. Implants are a viable answer to some cases.

Again, welcome to the forum and keep up your endeavor to find some relief. Let us know how we can help.

Old Man
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

jackp

Maverick

There is nothing I can add to Old Man's post. Just try to give you support. I have had this condition since 1995 and had many frustrating experiences with urologist. You can read about them in Our Histories.
The one thing that I would like to add to what Old Man said is to find a Male Sexual Function doctor for treatment. These doctors are rare. I found Dr. Milam at Vanderbilt for my successful implant, other Dr. Lue in California and Dr. Lavine in Chicago. General practice urologist do not have the skills we need.
Lots of Luck. Always remember never-ever/never-ever ever give up.
Jackp

Skjaldborg

Maverick,

Welcome to the forum. I am 30 and came down with this condition due to a very minor injury in February of this year. I too received some condescension from the Urologist on my first visit. He told me not to think about it and do nothing except take Motrin and that it would probably go away in 3 months. I went for a follow up with him 3 months later and he could feel lots of fibrotic tissue and he explained there was nothing he could do. I had to twist his arm to get on Pentox because he had only ever heard of it being used for complications with Diabetes and never Peyronie's. When I shared with him my desire to seek counseling for the anger and anxiety that comes along with this condition he said he couldn't recommend anyone because, "No one goes to counseling for male sex problems anymore because Viagra solved everything." When I asked him what could be done if it gets worse he just said, "No big deal, they'll just do surgery and put in an implant."

I know some in this forum have had successful surgery and that's great; no disrespect intended and I am genuinely happy that it has worked for them. I just never thought I'd face this bullsh*t at 30 and I am shocked and angry how few treatments are available between "do nothing" and "bore out the corpora of your penis and replace it with a prosthesis." As far as fighting Peyronie's goes, modern medicine has failed in general and Urology in particular is letting down millions of men and their partners when they shrug their shoulders and say, "there's nothing we can do." (Except for a dedicated few such as Lue, Levine, etc.)

As for anger, I've focused my rage into exercise. Anger can be a powerful motivator to get yourself in shape. I've gotten a lot tougher physically and mentally because, hey, what the hell could be worse then a misshapen penis in your prime? The little annoyances that plague our lives become a lot smaller once you've gained some perspective. Everyone gets dealt some crappy  hands in life and for some, Peyronie's is just one crummy card among many.

Again, welcome Maverick. Vent, share, learn and stay tough.

-Shieldwall

Maverick

Gents, thank you for your responses and encouraging words. I see that there is much support here, and more importantly - strength in numbers.
In time I will surely turn my anger into positive action. My hope is that you will all join me in getting some attention brought to this disease/disorder. As I mentioned in my first post, I do not understand why the Awareness/Advocacy/Activism part of the forum has been dormant for so long? https://www.peyroniesforum.net/index.php?board=11.0
I read through the posts but did not find the reason why it went quiet.
So Old Man, any chance that the navy urologist still has contacts in the right places to educate the new president about Peyronie?  ;)
Thanks again for all your responses.

Old Man

Maverick:

Fat chance of that as the urologist is about ready for retirement and he has not been in the Navy for oh so many years now. Therefore, he has lost all contacts in the Navy medical world.

Old Man
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

ComeBacKid

Maverick,

There is no single explanation of why the forum went dead.  We tried to start up some activism projects, but there wasn't much interest there.  I think a lot of men are personally embarrased they have this, and aren't ready to barge out into the streets to have a meetup.  Plus the disease is still rare enough not to really garner enough support in one geographical location.  Go to a breast cancer forum and you will see women everywhere, pouring in the support, marching the capital etc...  I think though the biggest roadblock is who wants to march out in public or be active and say hey everyone " I HAVE A BENT PENIS!!!!! PLEASE HELP ME FIND A CURE!"

Comebackid

voulezvous

I just want to jump in here & say that I don't believe the lack of knowledge or interest on the part of the public (& therefore the medical community) is entirely due to the shame on the part of us who are the victims. I worked in the television field for years & know well-placed individuals whom I have contacted to see if I could get suggestions & help on publicity (talk shows, newspaper articles, etc.). Not a single person gave me encouragement. The lack of courage to present our affliction is not always on our part. Its so scary to men that they live in denial. If Peyronies Disease were life threatening I do believe we would get awareness & a cure but, being an embarassing condition, its easy to pass it off. This is not meant to discourage anyone from attempting to put a spotlight on what we deal with. More power to you.  

jimifan

I am too new to this disease to have a solid opinion.  Don't get me wrong, I'm opinionated, but I'm still on a roller-coaster of emotions that takes me up and down from day to day.  Like Maverick, I wonder why the hell no one knows about this disease.  I sure didn't know about it until my urologist told me I had it.  Nonetheless, I'm guilty as charged.  Other than my wife, I've told no one.  I wonder how I'd start that conversation.  I don't know if it's as much a shame issue as it an issue of pride.  I'm no whiner and I don't think anyone on this furom is whining, by any means.  But outside of here, when we're around others...men aren't supposed to complain about pain, physical suffering, heartache, and things that aren't okay.  We're brought up to be tough, play through the pain, suck it up, and shut up.  But guys wait....my f*@#ing dick doesn't work anymore or look anything like it used to!

I've been wanting to add my "story/history" but don't know where to find the correct place to do it on this forum.  Can someone please direct me to where I should submit that.  

Mick

It's a topic below, presently 3 from the bottom, called Our Histories.


https://www.peyroniesforum.net/index.php/topic,31.0.html

Link added - Hawk

MUSICMAN

"A Final Word

Peyronie's disease is not the end of the world and it's not a terminal illness."

I really like this type of attitude when it comes to our issue. Just because you loose your "sex life" big deal it is not life threatening, you don't need it to stay alive.

Overcomer

Quote from: MUSICMAN on August 14, 2009, 12:13:31 PM
"A Final Word

Peyronie's disease is not the end of the world and it's not a terminal illness."

I really like this type of attitude when it comes to our issue. Just because you loose your "sex life" big deal it is not life threatening, you don't need it to stay alive.


Yes, it's not a 'big deal' to those who don't have it!  Then the tune changes.

astyanax

Quote from: Overcomer on August 14, 2009, 03:02:40 PM
Quote from: MUSICMAN on August 14, 2009, 12:13:31 PM
"A Final Word

Peyronie's disease is not the end of the world and it's not a terminal illness."

I really like this type of attitude when it comes to our issue. Just because you loose your "sex life" big deal it is not life threatening, you don't need it to stay alive.


Yes, it's not a 'big deal' to those who don't have it!  Then the tune changes.

I wish I could have the attitude that's in the original post.

You don't need it to stay alive, having something fatal would be worse of course -- not that that makes me feel much better though :P

Yeah however, it seriously sucks, I wouldn't care anywhere near as much if mine wasn't associated with ED.

jackp

astyanax

Peyronies when associated with ED, how do I say it, sucks is the only word that comes to mind.

My peyronies battle started in 1995. I tried everything available to me. The one thing I did not do was give up. My attitude is never-ever / never-ever ever give up. If one thing does not work keep looking.

The VED exercise worked to help keep my penis healthy, but I hated those constriction rings for sex. My venous leakage and corporal fibrosis was so bad.

About 10 months ago I had a penile implant and it changed my life for the better. Today I feel normal for the first time in years. I will not say that I have been cured of peyronies but at last I found the option that worked for me. It took about 14 years but the one thing I did not do was give up hope and looking for something that would help me.

I know surgery scares a lot of men. It did me!!! You have to find the right doctor, a general practice urologist just does not have the skills I needed. I found that out the hard way, but when he messed up I kept on looking and finally found help. If I can do it you can to.

Just remember never-ever/never-ever ever give up.

Jackp

jimifan

Jackp, you have a way with words my friend!  Peyronies associated with ED sucks indeed, sucks badly.  My curve isn't so bad; it's there, but not so bad I can't enjoy sex.  I've lost some significant length, but I can get used to that (meanwhile hoping I don't continue to lose).  The ED, however, even with Cialis, is the clincher.  The inability to sustain a useful erection, now that plays on my mind, my psyche, my idea of what it means to be a sexual partner, my self-esteem.  I'm great at work.  I'm a great father.  And then there's the ED.  I know it could be worse.  We could be battling cancer, we could be battling HIV, etc. etc etc.  The fact is, however, that we're battling Peyronies and unless you've got it, you've never even heard of it.  So, there is no support; there's no fight for the cure; there's no awareness effort.  It's just a bunch of us trying to suport one another on this forum and trying anything we can read about to regain what and who we once were.  I'm extremely grateful to have found this forum.  It is so helpful to just type this stuff out and know that someone who reads it will know exactly what I'm going through.  I love reading the stories of guys who have turned the corner and give me and others hope.  I'm hopeful that I can help support someone else who feels alone dealing with a disease no one's heard of.

ducard

 :( Hi.I've suffered with this malady for two years. My PCP laughed it off and said he has to tell
patients that they are going to die from some other disease,as if this would make me feel better!
Another general practioner about age 50 never heard of it! The first urologist who had any knowledge of
it basically said there was nothing that could be done and depression was normal and deal with it and left.
I've tried most oral and topical meds w/o success. I have had a very prodigious sex life for the last 30 years and
feel like I lost my raison d'etat. So I have been self medicating,sleep meds every night,benzos daily to cope.
I still exercise and eat well, but also drink alcohol more.I have completely lost all interest in sex(I'm 56).
I was terminated from my job just after my diagnosis,been hospitalized twice in the last year for suicidal
ideation,have not had sex w/my wife in 2 years,still unemployed,cannot afford to see a specialist and try to
find significance in my existance. I've seen a therapist for a year while taking anti-depressants. Can't remember the last time I had fun or a good laugh.It's all I can do to put up a good front while dealing with
my wife and people.I know it could be worse and a lot of people have far more medical problems. Can
anyone identify and have any suggestions?
Thank you  
   

Old Man

Sgtnick:

Well said, Semper Fi!!!

BTW, I am an old salt, Master Chief Petty Officer E-9 type, so I know the drill.

OM
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

Hawk

Welcome and take hope in that we have all been down the road and many of us are happy, confident, enjoy life, and have purpose.  We don't just try to crowd substitutes into our lives to block thoughts of Peyronies Disease but real joy.

The formula is accessible to all but each has to tweak the formula a bit for themselves.  All the ingredients however are found in this topic.  I urge you to at least clock on "home", then go near the top of the page and click on the Child Board

The Child board is a read only compilation of the best posts on this forum to bring you quickly up to speed.  You should read every post on every topic there but especially read every post under "Psychological Aspects".  Those are the best posts from this topic compiled in one post on the Child Board.

Good luck in fixing the one part of this disease that it totally within you control and totally fixable.  The good news THERE IS A CURE FOR THE WORST ASPECT OF Peyronies Disease.  It is up to you to make it happen.

Good Luck.

Hawk
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

jimifan

ducard,

For better or worse, I relate to your situation very well.  Though I have no answers or solutions for you, I have taken a lot of comfort knowing that I am not alone.  That understanding comes from this forum.  Like Sgtnick used to, I still go through a wide range of emotions as I read posts.  I get sad, get angry, get lonely, and feel inspired asll at the same time.  It's helped a great deal to be a part of this forum over the last month or two.  I think it's necessary that I go through the stages of emotions and consider it pretty normal.

Un fortunately, I too have had difficulty with my marriage as a result of Peyronies.  It's been a lonely ride for me and my wife.  I feel your pain, frustration, and loneliness.  But you are not alone.  That's all I can offer you.  Keep posting; keep reading.  Find your purpose here, perhaps.  Please don't give up!


Hawk

Not always, but most often problems in a marriage associated with Peyronies Disease are not about what you cannot do or about the physical changes.  They are far more often about your psychological changes (withdrawal, anger, depression) and what you will not do; intimacy in every form (touching, long talks, walks, a kiss or a romantic dinner).  You have total control over these things and if you choose can do a better job at these things than any man without Peyronies Disease is doing.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

jimifan

Hawk,

I'm not going to tell you you're wrong...cuz you're not

jackp

To all suffering psychological components from peyronies.

No matter your age the psychological componets of peyronies, as I said in a previous post sucks and sucks badly.  Each of us has to deal with it in our own way.

I am a lucky man. My wife and I have been married almost 41 years. She never complained. She saw to it that we had some form of sex. The biggest help was communication - communication - communication.  4 nights a week after dinner the TV and all other distractions go off. We retire to the sun room and for a minimum of 2 hours chat. Whatever the subject, sex, money, grand kids, kids, we discuss with an open mind and do not argue.  Yes we have different opinions but respect each other point of view.

At my low point with peyronies, ED, loss of night time erections, venous leakage and corporal fibrosis. I had just went through a failed implant. The "doctor' punctured my urethra and I had to ware a foley cathater for 10 days. She was sitting by me and said "Jack, I did not marry you for your penis."
You do not have to go through this for me. I told her that I was going to find the right doctor and get an implant for us, then admitted it was mostly for me.

The point I want to make is, your best ally is your wife. Tell her how you feel. If you are scared she already knows that so do not be afraid to tell her. Talk out your feeling and listen to her. You will be surprised how much she really cares if you will only take time to listen. Us men are not good at this but with a little time and practice it will enhance your relationship.

My opinion and a true personal story.

FYI I had my implant last October by Dr. Milam at Vanderbilt. The wife and I are more than happy. We still follow the communication's, It enhanced our relationship.


JackP

LWillisjr

jackp,

Superb post!  Thanks for that. I can echo everything you stated. My wife and I are going on 33 years and she was also my biggest supporter. We always found a way to be intimate, whether it was intercourse, massages, touching each other, etc. Communication was key, and it was harder for me than it was for her.

I needed the surgery FOR ME! It was for my mental well being, and we took the risk and were willing to accept the outcome. We were in it together. She went to every appointment with me, was in the room for every exam, every injection, etc.

This is a very difficult disease for all of us to talk about. And that is why this forum exists. We all start off by lurking, then one day we get the  incentive to make that first post. And then we start develop a relationship and trust the input from no more than a screen name. Then over time PM's and phone calls take place and we start to learn to talk about this this crazy disease.

I ...(like jackp) encourage all of you to confide in your partner if you can. I know not all are as fortunate with a supportive partner. But don't overlook it.

Les
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

MUSICMAN

In my opinion most MD's don't even know what Peyronies Disease is and most Urologists that do know something about it know they have nothing to offer as a cure. Well some will recommend surgery and that might be what is needed. Since Peyronie's disease is not the end of the world and it's not a terminal illness, there is no big deal. I am color blind and that is not a terminal illness or condition but you bet that I wish I could see color like "normal people". Some men find they are happy in their relationship with being close to their mate with out having a normal sex life. Some do not have a bend that makes sex impossible. Since our condition is not a serious problem there is no need to bother looking for help for us. The mental distruction is the worst of the disease but how would anyone know this unless you walk in some of our shoes. A man with no legs can live out his life in a wheel chair but given the chance I would bet he would like to walk with real legs as most people do. These things should not bother me as I am past the point of fathering more children, looking for a mate but I would like to feel whole again. Not that I am bitter I just learned through this disease how miserable life can be.

Hawk

You learned through this experience how miserable life with Peyronies Disease can be but NOT how miserable life CAN be.  There are circumstances that within minutes could make you look back at these as the good old days when "I had few concerns".

None of us ever doubt or miss the point that all men would prefer not to have Peyronies Disease, or diabetes, or MS, cancer, or be homely.  

That misses the points:
Life does not have to be perfect to be great
We are able and responsible to fix the psychological component of this affliction.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

MUSICMAN

Hawk: Thanks for the input. It's like the glass 1/2 full or 1/2 empty issue. My glass never started off being full to begin with. My real issue is that since our condition is not life or death it is not a real concern in the medical community.

Hawk

Quote from: MUSICMAN on August 20, 2009, 02:59:34 PM
Hawk: Thanks for the input. It's like the glass 1/2 full or 1/2 empty issue. My glass never started off being full to begin with. My real issue is that since our condition is not life or death it is not a real concern in the medical community.

In fairness I think that may be an over simplification.  As a cancer survivor in a family full of cancer deaths and other cancer survivors I live with the short comings of the medical/research community at conquering a family of diseases that kills 1/3 of mankind.  It was going to be cured in a few years back in the 60's.  They got fooled and found out the complexity of such issues.  

Clearly the medical community is most responsive to what they see the most.  Doctors really seldom discover cures, they apply the cures they have been presented by researchers.  Good treatments and cures are affected by such things as: money sources, frequency of occurrence, serious of the disease, and finally how difficult the puzzle.  There are many diseases with all the best of all of these factors that remain unconquered.  Peyronies Disease has the worst of these factors.  It is not just an issue of no concern.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

jackp

sgtnick

With the implant you will go through a couple of phases. The surgery is painful. The recovery is a long 6 weeks without intercourse so do not throw away the toys just yet.  ::)

After the implant is activated you can lay on your back with your penis sticking straight up and feel NORMAL again. Then the above will only be a fleeting memory.

Then you can ENJOY your relationship.  :) In my case we/she do things that we never did before in our 40+ years of marriage. We are almost like teenagers again.

I am not cured of peyronies but have met the beast, looked him in the eye and overcame. Thanks to Dr. Milam and the staff at Vanderbilt.

Jackp

Hawk

Sgt,

It is difficult to tell the serious from the tongue-in-cheek in your post.

I wish you the very best with your procedure.  it is probably a good choice.  I utterly reject much of your post however since Peyronies Disease can never rob you of the most important part of intimacy and since many women are sincere and not playing a roll.

I still say the psychological issues are fixable and our responsibility to fix.  I think 9 out of every 10 women would heartily agree.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

voulezvous

I'm afraid that I have to agree with the good Sgt. (I'm also a Marine) that we are robbed of a special form of intimacy - not all intimacy. I may be a little unique but my experience as a single man over 60 with new relationships has been telling (I've had Peyronies Disease since 2006). In 3 new relationships each of the women were absolutely undersanding & reassuring. One even called me courageous. I support the truth that women in general care way far less about our dicks than we give them credit for. Nonetheless, those relationships failed & I am certain that one of the biggest reasons was my inability to have intercourse. Each situation was different but there is a wall that separates love without sex from love with it. We are made by our Creator to become closer through our passion. Sure, the porno industry has it being all about the passion. We must see through the myths but accept reality. This is why my heart aches for those young men especially who write into this board about their fear of manhood loss.

astyanax

Every day is a struggle.

I actually had my dad down with a chat (25 myself, he`s 50) and...  well, I didn`t know what to expect, thankfully we both drink.  He swore he wouldn`t tell my mom.

I told him, he has NO IDEA what this ED does on a persons mind.  

He agrees.  Looks me in the eyes, and tells me I don`t know, I support whatever you want.  In Canada, I believe (sincerely F^@$!ng hope) that any surgery is free.

We keep talking, he has no idea, nobody without ED understands it, partictularly Peyronies Disease, he leaves.

Beating a dead horse is never a good thing, but I just can`t get this particular horse off my head, I am hoping there is some sort of temporary `cure`atleast, surgery or not for me.  I read every post, every day, every hour when I`m around the computer.

We`ll see come Sep 28 what my results are.

God bless and Good luck to all.

young25

I agree with what you said. I am 26 with no hope in sight, though havnt yet told my parents.. they even tried to ask as they saw so many supplements in my house but I coudnt gather the courage. I have no idea how I am goin to live with this forever.

Noway

Im 23 and I cant stand living with this anymore at all. I cant talk to girls and I cant have a girlfriend because of this problem. I told my dad about my problem but hes not very supportive. I dont know how im going to live with this forever. To see a doctor it takes so damn long and it seems like they do very little and try to get rid of you expecially if your young. I dont really trust surgery so I dont know...

LWillisjr

Quote from: Noway on August 29, 2009, 01:08:10 AM
Im 23 and I cant stand living with this anymore at all. I cant talk to girls and I cant have a girlfriend because of this problem. I told my dad about my problem but hes not very supportive. I dont know how im going to live with this forever. To see a doctor it takes so damn long and it seems like they do very little and try to get rid of you expecially if your young. I dont really trust surgery so I dont know...

Noway,
I contracted Peyronies Disease later in life. So I'm not going to pretend that I know what you are going through. I don't know what I would have done at the age of 23. But you can conquer this. It is frustrating because it takes time. Are you currently now using the traction or VED therapy? And some of the oral meds don't require a doctor's prescription. I encourage you to get into a regimen and don't give up.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

Maverick

Quote from: lwillisjr on August 29, 2009, 07:27:39 AM
I contracted Peyronies Disease later in life. So I'm not going to pretend that I know what you are going through. I don't know what I would have done at the age of 23. But you can conquer this. IT is frustrating because it takes time. Are you currently now using the traction or VED therapy? And some of the oral meds don't require a doctor's prescription. I encourage you to get into a regimen and don't give up.

I truly feel that the younger you get Peyronies Disease, the worse it is psychologically. I'm only 31, and I understand what these guys are going through. This is all you can really think about - day and night. You have plans for relationships, plans for a family and this completely bursts that vision. Even worse is the fact that there is so much info about this, but no treatment plans, i.e. a cure. But don't give up guys. Posting your feelings here is a good first step in the battle and don't neglect trying whatever you think may help you in terms of "therapy".
I'm hitting a moral low right now myself, given that I was in the hospital for an unrelated matter for a while without access to vitamins or real opportunity to monitor my Peyronies Disease status. When I got out and checked how "the unit" was working, I nearly passed out when I saw that things were slightly worse. I thought things had gotten stable. I thought I could breathe a little and not worry as much. Now here I am twice as worried and taking twice as many natural therapy pills. I went so far as to try to straighten things myself and heard an audible pop. Now I'm in pain and literally freaking out. Like these young guys here, I'm totally angry with the whole situation and the fact that nothing has been done since the discovery/labelling of the disease.
My anger is propelling me to find ways to get this disease known as commonly as any other. My anger is pushing me to call hospitals and start making lists of private, public, government and media outlets that could either share our stories or start looking for a true treatment. My only hope is that other guys here come out of their shell and do the same.

Hawk

Quote from: Maverick on September 02, 2009, 08:19:35 AM
Like these young guys here, I'm totally angry with the whole situation and the fact that nothing has been done since the discovery/labelling of the disease.

I understand the frustration but an objective look will tell you this just is NOT so.  Many advances have been and are being made.  There are significant advancements represented by all 4 types of surgery.  The use of pentox represents an advancement as does the patient discovered (and doctor recognized) use of traction and VED.  The clinical trials for Xiaflex represent a path forward and there are other great advances in auto immune, fibrosis, tissue regeneration, and gene therapy that are likely to have impact on Peyronies Disease and Peyronies Disease related ED.

Maverick I am glad to see you are focusing your frustration to strike back at this disease through awareness and education rather than the destructive channels we sometimes see.

Never Give Up
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

jackp

Maverick

Hawk has said it better than I can but I just want to add my support. I have had peyronies for about 14 years now.

Like you I was in the hospital about 10 days last year for an unrelated event (see My History). When I came home I thought all I had gained with VED therapy was in vain and I was worse. After returning to VED therapy in a week I was getting my results back.

At 31 you can still father children, have sex with your wife, still love life. So do not ever - never / ever - never ever give up. Find yourself a Male Sexual Function doctor, not a general practice urologist. There is help for you. Mine turned out to be a penile implant. Now at almost 67 I have an erection that would make a 20 year old jealous and make love to my wonderful wife for as long as she/I want.

Jackp

Skjaldborg

Quote from: Hawk on September 02, 2009, 09:28:43 AM

I understand the frustration but an objective look will tell you this just is NOT so.  Many advances have been and are being made.  There are significant advancements represented by all 4 types of surgery.

Hawk, with all due respect, advancements or not, objectively, there is no viable cure. The existence of  this forum is proof of that. Our board on "Success - Accounts of improvement in deformity/erection" has 12 responses out of hundreds of members (and I don't believe I've read anything yet on total recovery) and large portions of this forum are dedicated to every herb or vitamin or cooking spice that may give any last ray of hope of conquering this stupid, no good disease. I am on pentox-off label of course, because there is too little empirical proof of its efficacy-as well as L-Arginine and L-Cartinine because there is nothing else I can do. Yes, there is the surgery option, but gosh darn it, I am a healthy 30-year old with a tiny bit of scar tissue, I am not ready to commit to forever altering my penis. (No disrespect to those who have done this, best of luck to you and maybe I'll join you in thirty years' time).

I think this is what I was getting at regarding my question a few days earlier about creating a topic specifically for younger men. Indeed, we all suffer from the same disease regardless of our age, but younger men and older gentlemen are in fundamentally different stages of life and thus experience this disease in a very different context. Someday, I will be a 60-year old man with Peyronie's, but right now I am 30, trying to start a family and live the life of a healthy 30-year old but I have had my sex life turned upside down. Of course, sexual function problems are difficult in any stage of life, but young men experience them more acutely because our culture expects young men to be sexually virile and because as individuals we expect to enjoy a reasonably healthy sex life at least until our 40's.

I have noticed on numerous occasions younger members posting angry responses only to be chided or lectured at by older members. Sometimes it's warranted chastisement (such as too much profanity, etc.), but in many cases I think it's a reflection of how different generations approach this disease emotionally. We youngsters tend to be angry and pessimistic while the more experienced tend to take a more nuanced view (perhaps because of experience with other often life-threatening diseases). Each approach is valid in its own light.

-Skjald


newguy

I think you should simply create the thread for under 40s and allow people to contribute to it. There's not much mileage to be gained from comparing different age groups here, as it not something people are going to reach agreement over. Each person has their own unique outlook and challenges.

The anger is entirely understandable, it really is, but it's a useless emotion because it doesn't actually achieve anything. This isn't a situation you can escpae from by being infuriated. I don't see what it can lead to that is productive. Again, we all feel that way at times, and people should be allowed to express that, but when all is said and done, it doesn't change the situation we're in.

I do understand that we're not in total control of our emotions at all times, so we all have down times, but our aim should be to try to help people beyond that. And that's not always easy to do other than trying to tell people that it isn't useful to be angry.

Oh, and I don't believe that a cure is the be all and end all. It would be wonderful, but it's not the only way of getting beyond this condition.  

ocelot556

I just started seeing a psychologist regarding how messed up this disease has made me. It sunk in when the girl I loved left me - not for a lack of communication or understanding of the disease - but because we lost the intimacy of sex, and she could not cope with the idea of sex as non-penetrative.

I feel suicidal and hopeless, and know that for the rest of my life my fate will be to meet women, fall in love, and have them leave me for a better man who can satisfy them.

I feel that young men are affected deeper - I don't think if my ex girlfriend, 24, was a 40something mother, she would be nearly as unflappable in her desire to explore other avenues of sexual interaction with me. I think a young woman has more biological demands, and expects a man her age to be able to keep up, and I think no amount of love or understanding can overcome the inherent immaturity and biology of someone so young. Maybe an older woman can cope, mentally and physically, but I have my doubts that in the next 20 years (I'm 25) I'll find someone like that.

I'm not a quitter, though, and I hope that through counseling and cognitive therapy I can overcome my failings and salvage some small tatter of my self-esteem. If I can't make a woman happy, at least I can try and make myself happy.

Skjaldborg

ocelot556,

I think seeing a psychologist is a great start, particularly if they have experience with traumatic injury or sexual function issues.

I'm sorry the last relationship didn't work out. Some might say that, "Well, she wasn't the one." but at 24, who the heck is the one? As young men (and women) we want to fool around and enjoy youth and this disease does take some of that out of the equation to a certain extent. I will say that, as terrible as this disease is, there is always hope for finding someone who makes you happy and who you can make happy (really!). It will take time, you will face ups and downs, but right now, there is a young lady who does not want one night stands and drunken trysts but who wants a serous relationship with a serious man. One of the hardest parts of getting the dating thing together is coming to terms with what Peyronies Disease has taken from you and what it has not taken from you. I think the counseling will be beneficial in this regard. Best of luck.

-Skjald

Christine

QuoteI will say that, as terrible as this disease is, there is always hope for finding someone who makes you happy and who you can make happy (really!). It will take time, you will face ups and downs, but right now, there is a young lady who does not want one night stands and drunken trysts but who wants a serous relationship with a serious man. One of the hardest parts of getting the dating thing together is coming to terms with what Peyronies Disease has taken from you and what it has not taken from you. I think the counseling will be beneficial in this regard. Best of luck.

Truer words have not been spoken.  

I have popped on here in the past and offered my perspective as a women from time to time, generally addressing the issue of men that have shut the women in their lives out because of the pain, shame, and frustration due to the realization that sex is not and perhaps will not be what it once was.   It is really clear after reading these recent posts that the fear and frustrations level goes way beyond how you deal with a relationship that is already established but can be even more devastating to someone that has not had the opportunity to form a true relationship in the first place.

It is true, that for the younger victims of this condition, hope for any kind of a "normal", intimately sexual relationship just seems so far out of their grasp.  But what is "normal" really?  Today's normal is a far cry from the normal of yesteryear.  Ask anyone with a few decades under their belt and they will share with you that dating (or in those days they would call it "courtship") would rarely include sex.  Those relationships were based on things that are far more valuable and constructive to developing a true relationship that will withstand not only the test of time but create a bond and common understanding that there are things far more valuable than having sexual intercourse. I know that in today's world it is completely the opposite and to coin a phrase....the cart is being placed before the horse.  That is what society expects and what you see plastered on practically every media source.  Sex first...develop the relationship second. Trying on the shoe before you buy it for many is the justification for jumping into sex and basing a future on that.   For some of you, the issue is really based on assumptions of what a woman would "expect" and thus you assume that they would find unacceptable.  Some may....but I would really wonder if a relationship that could be ended merely on the basis of this condition would be one worth keeping in the first place.

I would really ask you to consider what the end result of a sexual encounter would be expected from either partner.   Orgasm?  With or without a fully functioning penis.....this is possible via many methods.  Penetration?  Again, if your penis is not capable of this, there are options to get past this with other things.  Exploration with different items can be very sexually stimulating if done with the proper frame of mind when going into it.    Those may be the 2 main answers to the original question.  But please, take it from a woman's perspective here..... and please read it twice if you don't get it.   THOSE ARE NOT THE TOP TWO ANSWERS FOR A WOMAN!!!  We want to be loved.  We want to feel like we matter.  We want to be able to feel that an emotional connection is made and that our souls are connecting in a way that really cannot be described by words alone.  I am not going to pretend that the other answers are not important....they are.  We are human and enjoy sex in that traditional way.  We are created to enjoy it.  However, we desire the intimacy that a sexual encounter provides when true love is involved far more than the specific act of sexual intercourse with penetration.  Any relationship with a woman that is worth pursuing will be strong enough to work through these issues and find a way to pleasure each other to satisfaction even if you have to be creative.  

Please don't get me wrong here.  I am not negating the situation that you guys have found yourself in.   It's tragic and incredibly unfair.   It reeks havoc with you not only physically (which is hard enough to deal with) but the psychological impact of facing a lifetime of "dealing" with it can be incredibly overwhelming.   But the key words here is "Can be".   You can let it destroy your future......OR  you can learn to come to grips with the reality of the situation and focus on a future that can be filled with connections with women on a level of intimacy that will give you far more pleasure and satisfaction than any sexual act can.   I know it sounds far more simple than it really is.    And I also know that there are many women that have been groomed by the present day mindset of "needing" sexual intercourse in order to develop a lifelong relationship.   The choices are limited, but in my opinion, when you find that special woman that really wants to have a "relationship" instead of a "sexual encounter" your physical condition regarding your penis will be the least of your problems.  A relationship that is based on things other than sex is far more fulfilling and rewarding than a million one night stands.  

Trust me....it will be worth the wait and time it will take to find that special someone and the time to develop that relationship BEFORE the issue of sex is introduced into the equation.

Thanks for letting me share.

Blessings to you all.

Christine



May the Lord Bless you  :)

Mick

Hi Christine:

Beautifully put.  It's great to hear from you.  I've missed your wisdom.  You ought to address yourself to the men, especially the younger ones, whom we seem to be having more and more of lately  more frequently.    

Blessings to you, Mick