Psychological Component - Coping with Peyronie's Disease

[Tim468]

Good point Hawk,

As they say, pain is inevitable, suffering is optional. Better yet to see what can be wonderful!

Tim

[Hawk]

Alcohen,

Though I have much of my own to think about I think about a few of your posts from time to time.  There is a missing element in the discussion that resulted after a few of your comments.  It is clear that you are suffering and that much of the suffering, in fact the majority of the suffering is emotional and psychological.  This is very understandable.  My concern is that it is the one area that you can do something about and I have not seen anything to suggest it is being addressed.

In one post you said:

My girlfriend offered to try her mouth the other night and I had to look down just to make sure that it was making contact with my penis in any way.  I did not feel anything.  I just politely asked her to stop and slinked away depressed.  This condition is unbelievably horrible.

and in another:

To know that when I look at myself in the mirror I will see something disgusting.  And to know that if I tried to, I WOULD NOT BE ABLE TO HAVE SEX.  It is not possible for me to give my girlfriend, who is a virgin, that experience.  I can't even masturbate anymore.  Everything in my life has been completely stripped away.

Rather that me typing a book, I will simply suggest that Peyronies Disease can destroy lives in much the same way facial disfigurement can destroy lives.  Often it is more the perception and self-loathing that destroys relationships rather than the lack of an erect penis.  Like disfigurement, it destroys some lives while others prosper in spite of the challenge.

If you self-protection causes you to tense a muscle that results in pain, you would learn to stop.   By the same token, if your self-protection causes you to withdraw from intimacy then you should also learn to stop.  This is not a matter of shear will.  It is a matter of learning and facing many of the fears you withdraw from.  It may or may not require some expert professional help.  The good news is that it is universally understood to be the most damaging part of Peyronies Disease and it is the part that has a known fix.

I would suggest that you read this thread from start to finish or at least "Highlights" in the "Newly Diagnosed" "Child Board"

I would also hope that those that have been successful, or those that are making progress with such issues will jump in with input.

Generally, women and men see these issues very differently and men can learn from their input since in reality it is our perceived lack of acceptability to females that causes much of the pain and withdraw.  Our fears become self-fulfilled prophesy.  Maybe some of the women that read the main forum will comment.

Hawk

[alcohen]

Thank you for the message Hawk.  It is just that EVERYTHING involved with that area hurts.  It is impossible to stop thinking about that area all the time because I cannot walk without aggravating it.  If I ever bend down to pick anything up I feel pain on my glans.  I feel pain and discomfort on the sides of my penis whenever I walk.  I already can only wear my boxers turned around backwards the ridges where I normally would pee through on the front really hurt when I walk.  Still, my pants irritate me if I move at any normal walking speed.  When hands touch my penis it is just torture.  Some parts of it feel numb while others hurt.  Sometimes though, when I have a great night out my girlfriend and she is trying to pleasure me I get caught up in the moment.  My penis is nowhere near hard enough to actually penetrate but I have my eyes closed and she is very gently masterbating me and I am able to ignore the discomfort and pain.  But then, all of a sudden the discomfort and pain returns.  And then the discomfort grows.  

I then decide to look down at my penis and of course it is almost completely soft.  Even though I am incredibly attracted to the girl that I am in love with and am in the heat of the moment, the pain will start and my penis goes flacid.  I am above her/on top of her and at this point any amount of friction does nothing...whether it is me brushing against her stomach or wherever.  Unfortunately the root of my problems sexually is not psychological but the psychological aspect is affecting me in all other areas of my life.  To know that I will at best experience pain and a half-flacid penis after a great night with my girlfriend is just destroying me.  I see others happy and I am jealous.  That is ridiculous.  I have a great girlfriend that I love but I feel like I cannot show it.  When I look her or think about her I still get excited but then I FEEL PAIN!  And my penis does not get hard.  I can definitely feel something blocking blood flow.  I can feel mounds in there.  I can feel discomfort when walking.  I can feel discomfort when sitting as it has shrunk and it more recessed than normal and hurts when it lays on my chair instead of when it used to dangle down between my legs.  

Somebody here spoke of Anhedonia.  I wish.  Unfortunately I don't not have pleasure.  I just have lots of pain that impedes the pleasure and stops it from ever happening.  Right at the end of my wet dreams I have pleasure and then I have to clean myself up and wash my sheets.  I am not able to have pleasure with my girlfriend BECAUSE of my pain.  Then from that I am not able to enjoy other areas of my life.  I used to like to run and lift weights at the gym.  Run?  Haha, my penis hurts like hell when I try to do that.  When it hurts the most I look at it, and yep, looks like an hourglass.  I am assuming scarring is there that is blooking my shaft from expanding at that point.  Trental has done nothing for the two months I have been taking it.  

 Sorry for the negative outlook.  I am just in too much pain in every facet of my life.  Four months ago I was the happiest person any of you could ever possibly have met.  Then, one night where I was masterbated twice later and everything falls to pieces.  I do not understand.  I try so hard but everything just feels impossible.  Where I could once see my future it is now blank.  I cannot see past this period in my life and to even think about having to deal with this issue for the rest of my entire life makes me shudder.  I just cannot do that.  

I don't understand what I did wrong to deserve this.  As a child I was that fat kid and was always made fun of.  That hurt me psychologically until the end of high school.  Even though I was no longer that kid I still hurt and felt like nobody would ever want to share their life with me because I had no confidence at all.  There were several girls at this point in time that realized they could take advantage of my niceness and would use me.  I was always depressed and saw help for it.  In college I ended up dating a girl who cheated on me with her ex-boyfriend.  She then went back to him.  Not having any experience at all with dating in general hurt me in that relationship and the after effects lingered for a couple years as my confidence was zero again.  I decided to turn my life around though, got over all that, and began working out.  I felt confident about myself, and noticed that girls were noticing me.  I found the one that I connected with more than anything and pursued her.  She became my girlfriend and I could not have been happier.  

Now this.  

It just does not make any sense at all.  I tried so hard to make both me and my parents happy who love me more than anything and apparently by trying I have now hit what appears to be an impassable wall.  I am so worried about ruining my girlfriend's life too.  I am so confused, upset, and angry that this has happened to me!  None of my friends care because they don't really believe me.  They just can't see themselves ever being in a position that I am in and don't believe is possible.  I never would have either.  Because of that though, there is no sympathy shown for me.  They assume that when I don't want to go out with them somewhere because my penis hurts too bad to move that night that I am only doing it because I am lazy.

Whatever.

 

[LWillisjr]

alcohen,
I'll echo Tim's thought. I believe everything you say. But it doens't make sense for you to have so much pain, yet your are able to ahve a wet dream. Usually this involves getting adn erection and ejaculating. It seems the pain would cause you to wake up first. It just seems odd that you can get erect and ejaculate while sleeping, yet so much pain to prevent an erection while awake.

[George999]

It is certainly possible to have pain when awake, but no pain when asleep.  I have experienced that.  I believe it to be based on the effect of melatonin levels, but that is just conjecture.  In any case, I have experienced times with rampant inflammation type pain during the day only to have the pain level subside to nothing at night.  That IS certainly believable as far as I am concerned.  I do find it strange that touch results in pain and yet he has seemingly indicated before that he is experiencing a lack of feeling.  That would seem odd.  Either there is feeling or there isn't.  You don't feel contact pain when the area is numb.  - George

[George999]

The studies on Vitamin D continue to flow forth.  The latest finds that the same deficiency in Vitamin D that can cause autoimmune problems can also cause depression.  How very interesting!  The same anomaly that may very well be making one susceptible to Peyronie's may also be contributing to making them overly depressed about it.  Yet another reason to get plenty of Vitamin D via both the mouth and the skin!  - George

[alcohen]

Lwillis and george, to answer your questions, I feel both numbness AND pain.  How is that possible?  Because it is on different areas of my penis.  The area that I used to feel the most sensation from which is right on the underside of my shaft towards the top is now almost entirely numb.  Both the left and ride sides of my shaft are NOT NUMB in any way and that is where I experience the majority of my pain.  Also, I have pain on the top of my penis on the glans and pain on the top part of my shaft.  None of those areas feel numb.  It is just the area that I used to have the most sensation that is numb.  That is also the area that I remember looked like it was skin healing immediately after my "incident" happened.  Make sense?  I swear I am not making anything up though I wish that I was.  

To answer the question about the wet dreams, I have woken up while I am still ejaculating each time they have happened.  In each situation, I have had only a VERY partial erection.  When trying with my girlfriend to get hard I have gotten much harder than that and that is where the pain is most prominent.  

So now hopefully my dilemmna is more understandable?  I am experiencing so many different levels of pain and strange occurences.  

Examples:
1. Penis hurts when I am walking (constant pain, I do not want to walk anywhere)
2. Penis hurts when I am standing still. ( I have found ways to stand perfectly still and cross my legs where it sometimes does not hurt)
3. Penis hurts when I am sitting in a chair.  (All the time unless I slouch severely and have my legs hanging off the chair)
4. Penis hurts when I try to go to sleep. (I am only able to sleep soundly when on my stomach.  When I try to do so there is a lot of pain from pressure on my penis.
5. Penis hurts when touched on the sides (always, but sometimes it feels warm and hot to the touch and hurts more than other times)
6. Penis has hourglass indentations (sometimes, and when this occurs my penis is in its most flacid state and also I hurt the most)
7. Area of sensation is numb (always occurs, though sometimes a little tiny bit of feeling slips through...  my guess is there is something under my skin there that is blocking or squeezing off most of the nerve endings.  or the nerve endings are destroyed..)
8. Penis is twisted and tilts to the left side at the midway point (Seems to only be prominent some mornings.  These mornings are when I wake up and am in pain)
9. Penis is so flacid that I feel like it is not even there (every couple days, mainly at night.  there is ZERO blood flow of any kind to anywhere in my penis.  upon inspection and intentional stimulation nothing occurs.  i am not stressed out when I am trying to stimulate it either!  in these situations all I can do is laugh and just think of how ridiculous this all is  like a bad nightmare)
10. Penis hurts after I pee (75% of the time.  Most of the time not all of my pee will come out when I go to the bathroom.  I shake it and make sure it is all gone and then after it is back in my pants more of it comes out.  This happens after I feel pain.  
11. Penis has double stream of pee (25% of the time.  There are two distinct streams of pee that come out of my penis.  This never happened even once in the hundreds of thousands of times I would go to the bathroom before my incident.  Now it happens a quarter of the time I pee.  One stream goes downwards, the other stream goes straight and upwards.  Perhaps my urethra is damaged?  Oh joy)  

Mix these all up and you will see what I am trying to live with.  On any random day I will experience one or all of these symptoms.  I have bad days or horrible days.  If it is a horrible day I will know it right when I wake up.  Usually these are symbolized by my penis being twisted.  On these days I don't want to do anything at all but I force myself too.  Because I know nobody would believe me if I told them exactly what was bothering me if I skipped out on doing things.  

I am at my wit's end here.  I just cannot believe that this is how the rest of my life will be.  That is a long time.  I am sorry to all of you who have lived with this and are living with it still.  Noone deserves to have to try and live like this.  This is completely ridiculous...

[didi20031]

alcohen
I feel so sorry when I read your postings!!! It sounds really terrible!!! I suppose you have already seen lots of different doctors and urologists?!?!?!

I am not a medical doctor and I have no idea what can cause so terrible symptoms, but I have the impression that you may have (at least) two different medical conditions and not only peronies (if so). I know I'm repeating myself (I have already posted that under "open questions" but I don't know if you have read it) but have a look on www.pelvicpainhelp.com. Read about the symptoms which are described there. Maybe it it has nothing to do with your problem, but it only costs you a few minutes of time. Give it a try!

I wish you all the best and hope your situation will get better soon! I'll keep you in my prayers!!!

[Tim468]

Hang in there Alcohen.

It sounds really rough.

If I were you, I would start to save for a trip to San Francisco to see Dr. Lue. I would write to him first and explain as well as possible with as LITTLE WHINING as possible (I say this so prominently, because you emotional pain is so big that it tends to hide the reality. That is, we periodically see young men who come here totally in a panic about something that it probably not Peyronie's. As might be expected, when they go to a urologist, they get blown off as mental cases. The problem is that folks who have HUGE sadness and anger tend to get lumped into the same category by urologists! So it is VITAL to be dispassionate in describing what is happening to you, as you were in most of your post. THEN you can say I am an emotional wreck because of this).

If you cannot see him you should consider finding an equivalent expert to see.

It would be expensive and it might take some time to arrange, but why not?

Tim

[Old Man]

Alchoen:

There is one thing that you have not mentioned in your posts. That is, have you asked your uro on any trip to see him/her if you might have a very severe prostatitis infection. Several times in the past, my symptoms sounded similar to yours. It developed that I had an urinary tract infection along with prostate infection.

Antibiotics cleared up those symptoms, but did not, or course, help with my curves and other Peyronies Disease problems. Suggest that you try to get an answer about a possible infection problem.

Old Man

[tina]

           Dear all my name is Tinaa and am not very sure if am allowed to write in this room or not but all what am thinking of is that I need your help both as couples as I do believe that once you figure out such a problem it's gonna affect both of the partners at the same time. My story is that am trying to rescue a true love that goes back to many years, and for certain reasons behind our dreams we couldn't meet for years , then now after we could find each other and we could have the chance to share our feeling that had been hidden for ages , after all of this our relationship started deteriorating suddenly with no obvious reason at least for me at the beginning.   Then after I could figure out that there was no other possibility than Peyronies Disease behind this issue I;ve tried so many ways to find the right way to get through and I felt helpless and hopeless as he kept silent all the time.  I couldn't believe that this Peyronies Disease could be behind this pain until I reached this wonderful forum, where I could feel of how much he is aching in silence long time ago. and I didn't think that this could be the problem because honestly it means nothing for me and I don't see it as a problem at all as I do love him for himself and not any other thing. Now he started to withdraw from this relationship and I don't want to lose him, he means everything to me in this life .

              The story goes back since he was a teenager after having an accident that leads later on to this bloody hill Peyronies Disease. and now he is in his 4ties .my question is what are the treatment possibilities after this log period of time and , and how can I discuss this issue with him as I've mentioned before that he is silent almost all the time, and the only thing I could get from him is that he doesn't deserve me. I know it is a very sensitive issue but I will do all my best to stand by his side and never leave him.  If he doesn't open this issue shall I take the first step and start??   Is it right to do so?? I don't want to hurt him at all , he has enough on his plate and I wish I could take all his pain.

             Please my friends tell me what to do and I will never say no . I do prefer to die rather than losing him.

God bless

[Tim468]

Hi Tina,

Two issues pop up to mind.

First, you are in love with someone who doesn't want to talk to you - and it sounds like an old love that is renewed. But it may have some problems if he cannot talk about his feelings. So working on the "Peyronie's Disease" problem is but part of what you must deal with; I think that you may have more to talk about.

Never the less, it would be best to start somewhere and to start making an observation. Make it as NOT a judgment as possible (ie "you are talking to me less now than you did a year ago" or "I noticed that your wonderful penis is a bit more bent than it was when we were teenagers"). Then express your feelings (ie frustrated, concerned, loving - identify how YOU feel) - so tell him what you are feeling. Then tell him the thinking behind the feeling (ie "I am concerned because you seem to be in pain" or "I am frustrated because I think that communication is important but we are not communicating in a way that meets my needs", or "I think that you might worry that I would find your penis unattractive").

Then make a request - something as simple as "Would you be willing to tell me how you feel when I say this?" or "Would you be willing to tell me if I am right about this?"

It would be a start...

The other thing - please reconsider the hoping to die instead of losing him.

Tim

[Angus]

  Welcome to the forum. I made a post a few years ago in the "Our Stories" thread that I said a lot of things the way I see them. I'm going to copy/paste a section of what I said in that post, and I still believe it to be true regarding relationships. Peyronies involves couples; not just the man. Here is the excerpt from my post... it is addressed to men:

The facts for me are (1) There ARE things that can be done to combat Peyronies Disease and (2) The life-force of a partner must not be underestimated. Talking/dialog MUST be a part of the healing; decades of society based conditioning has groomed men to base their apparent degree of manhood on penises, when in fact this is such a small part of the total manhood picture. Do not close off and keep quiet... open up and start talking to your partner. Take action and attack Peyronies Disease with a plan and most of all, remember that you are a man and this Peyronies Disease mess is a speedbump, not a deal breaker. If you are reading this, you have found the experts forum... read, devise a plan, and know that you have total support and help here.

   I kept my Peyronies hush-hush and never, ever talked about it with the girl I was engaged to (now happily married 3 years to the most wonderful woman in the world, and yes, it's the same woman... yay!). One evening she asked me about the curve. After a moment of shocked amazement that someone would bring this up, then realizing it was because she CARED enough to bring it up, I was totally and ease; once she got me talking, she couldn't shut me up because I went on for hours about what I'd gone through trying to do something about my Peyronies. Your man is hurting inside and doesn't know what to do, and he thinks he doesn't deserve you, and he thinks he is less of a man because of Peyronies. It devastates men and they withdraw. There ARE things he can do for therapy, all outlined in the forum. It does not matter how long he's had Peyronies. Success stories from men who use the Vacuum Erection Device can be read here. A protocol on how to use it is here, as well as recommendations on the best ones to buy. There are supplements he can begin taking that help heal inflammation and promote general health. The body must be treated and the mind must be treated. When he learns of your support things will be much, much better. You must tell him what you posted below, that the Peyronies is nothing to you and that it's ok. If at all possible, see if you can get him to at least come and read some of the forum to see what we're about here. Tims suggestions on how to bring the subject up are good... use them. Let us know how it goes.

[Angus]

  You should bring the subject up. If he shuts off and walks away, no, do not nag, badger or push the issue because he is not ready. A hard line approach at this time may drive him away. All you can do is say what you need to say in a calm way and hope he responds. He has to make a choice: listen to you and recognize your support for him, or turn and walk away. I hope he listens to you, but he may shut you out. The choice he makes after you talk to him is his alone.
  Some time back a lady posted here who's husband refused to talk about his Peyronies. As I recall she printed pages from this forum and layed them on his desk in hopes that he would read. This is an alternative; talking is the best and first thing to do. No one can say how he'll react but I do hope that his reaction is positive and that he does not shut you out further. He should not use shyness as something that exempts him from talking to you. Shyness prevents a person from talking openly with a stranger or new acquaintance; you are neither of those and have known him for years, so shyness should be no excuse for shutting you out.
  There is a chance that he will shut you out and not talk. But then, there is the chance that he will be receptive to you and your talks will lead to positive action to help his Peyronies. If he will not talk at first at least suggest that he read the "highlights" of the forum commonly called the Child Boards as he could get a quick overview of what content the board has. Here is a direct link:

https://www.peyroniesforum.net/index.php/board,18.0.html

[Old Man]

tinaa:

I support Angus's post below 100%. My Peyronies Disease started as a result of a bad sexual encounter when I was 24 years old. In those days, 1950s, there were no known "treatments/cures" for Peyronies Disease. In fact, there was very little known by uros and PCPs either about what to do with the disease.

Many treatments were tried with little or no success. However, I overcame the trauma of losing the benefit of one's most prized bodily possession. Just kept on going and trying different things. Won't go into my entire history, but today I am virtually free of any Peyronies Disease symptoms.

My history is posted elsewhere on many topics throughout the forum. If at all possible, try to get your man to read posts about all the guys that have listed their histories. There are many and varied things that have been tried, some successful and others not, but at least they tried to get rid of this horrible mess.

I am now over 79 years old and have dealt with this problem since the age of 24. So you see, it can be overcome if one just hangs in there and keeps a positive attitude about it all. We all can feel for you and your man because we have been there and done that with Peyronies Disease. Let know if there is any way we can help to get him to come on the forum and learn what can be done to help with his problem.

Sincerely, Old Man

[Old Man]

tinaa:

WOW, what a position to be in at a time like you guys are having at the moment. I am reminded about the phrase that is used in the world of alcoholism. An alcoholic has to admit that he needs help before he is willing to submit to treatment much less help from anyone.

It is the same way with Peyronies Disease. He has to admit to himself that he has a major problem and needs help. He must realize that he and he alone has to come to grips with the fact that his manhood is at stake. If he does not try to get some help, he could be permanently changed to the point there would be no help for him. I know of at lease one doctor friend of mine who waited too long to get help and was totally unable to even urinate unless he used an enclosed type urinal.

As we all know, surgery is considered the last resort when all else has failed. Surgery has its place in Peyronies Disease treatment and/or therapy, but we reserve that for only the worst case scenarios. We have success stories on this forum after surgery, so you can see that it does help too.

Suggest that you print out some of the posts from the forum about success stories from the various threads and what the guys did to achieve their success. Maybe, just maybe, if you left them around the house where he could pick up on them and read about our stories it might help.

Keep us up to date on any progress, or lack thereof, and maybe someone can come up with some assistance for you guys,.

Old Man

[Angus]

    There was a chance that would happen. The man feels terrible, has taken a hit with Peyronies disease but unfortunately has chosen to be miserable over this... or something else. Think about any other issues that might be going on that aren't Peyronies related that might be influencing his behavior and shutting you out and consider addressing those, if there are any.
    Every relationship has speed bumps and knocks along the way, and Peyronies for him, stacked on top of possible other issues, may be the thing that got him down so low that he's closed off now. You're not only dealing with Peyronies, you're dealing with a huge issue: communication. He's got to realize some time that this is a couples thing in this case, not an individuals thing.
    Go with Old Mans suggestion and print a few success posts and leave them around where he can discover them on his own and possibly read while in his space. Consider getting out of the house as a couple and do some things that you enjoy as a couple... movies, go dancing, sight seeing, whatever. This would place you two in a lighter, happier setting where communication may flow and not be forced by bringing up a subject that he is purposefully ignoring at this time (Peyronies). Communication of a lighter nature should come first in an easy, no-stress situation. Once this gets established and both of you are comfortable and words are flowing, then subjects of a more serious nature would be less threatening to both of you. Get him out and have some fun and put Peyronies as a discussion topic aside at first... let good times flow and laughter abound by choosing things to do that you both love. He must realize on his own that life is not over and that laughter and good times still to come is a gift to be treasured. Communication does not come with luck; it comes with effort, sensitivity and friendship. Without these things in place, a discussion about Peyronies Disease would be very difficult to begin. Keep us posted.
   

[Aoli]

I have a question for anyone who has actually been dating with this condition, not married or in a relationship. Have you encountered any horror story experiences with the reaction of your partner? It seems that one would simply appear as "damaged goods" and not worth sticking around with for very long regardless of personality (which might keep them around for a while, but not with any sense of permanence in mind. Certainly not monogamous while in the relationship, since they need it and you two aren't serious). I'm scared to date because inevitably they'll want to have sex and I'm not capable of penetration, not to mention the unpleasant aesthetics of it. That could be a disheartening reaction the first time they see it. I'd rather avoid people entirely than get a nasty response from someone. Nobody's ever seen me naked before in a sexual situation so I'm scared of getting a terrible first reaction. I'm okay and happy when I'm alone (Really. It's what I'm used to so it's comfortable for me), but if someone does something to make me feel bad about my body the first time I'm in that situation, I think it will really hurt my confidence in myself. I'd just like to hear some personal experiences from people who are in the dating scene just to put things in perspective. Good or bad.

If you're already in a relationship or married then your partner would obviously have some sense of attachment to you and probably wouldn't leave you over it. I would hope. So kind words and support always appreciated, but not the type of story I'm asking for. Unless of course it was one from a time when you were dating and not in a committed relationship. Thank you.

[Port]

Have you encountered any horror story experiences with the reaction of your partner? It seems that one would simply appear as "damaged goods" and not worth sticking around with for very long regardless of personality (which might keep them around for a while, but not with any sense of permanence in mind. Certainly not monogamous while in the relationship, since they need it and you two aren't serious).

This is the major drag that accompanies the diseaese.  The curve itself wouldn't be so bad as long as you could maintain your erectile function.  I'm in the same boat as you.  Since getting the curve, I've developed more plaques on the otherside of my penis that I think has effected erectile function.  I rarely get morning erections and my dick is pretty much just a useless appendage at this point.  A lot of days I feel like a damn eunuch.  I don't have a girlfriend, but a lot of times I'd like one but I shy away from them because I know they'd never accept me.

[Tim468]

Tinaa,

I do not mean to pry, but I am completely confused about a couple of things. There is no delicate way to ask this, so please bear with me.

1) Have you and your partner had sex yet? I cannot tell if you have or not, or by what (other) method you found he had Peyronie's Disease. In other words, have you seen that Peyronie's is a (the?) problem with your own eyes?

2) You stated that the relationship got worse. But I am not clear how you are relating that to Peyronie's Disease. Did he have Peyronie's Disease before you met? If the problem is longstanding, then why would the relationship get worse more recently?
I apologize for being confused. But it seems I have heard that he has had it for a while, but things have gotten worse between you two more recently. Therefore, I am not sure why Peyronie's would be the reason.

What I *thought* (from what I read/heard) was that he has had Peyronie's for a while, but it has interfered with intimacy as your relationship has progressed from close friendship to physical intimacy. But as I read the other messages, I am less certain I understand what is going on.

The reason it might be important is this: if he has a longstanding problem with Peyronie's, then it seems to me he would have longstanding emotional problems due to it (if he were to get emotional problems - many of us do not). Therefore, if he were to change in his manner around you, could that be because of a worsening in the condition, or is it new? If there is no change or the problems is not new, then the change in behavior and intimacy may be due to something completely different.

In any case, I think that you have the right to ask him to tell you why his behavior towards you has changed. If he cannot tell you, he may not know himself. But if he is withholding his emotional life from you, then you may want to reconsider whether or not you are making a sound choice in a partner.

Tim

[Tim468]

Dear Aoli and Port,

I have had Peyronie's since I was 21 or so.

I have had (too many!) inconsequential sexual encounters with women who were not attached to me emotionally or that interested in perhaps even me. I never heard one comment at all. I have had a few questions about the shape after a few sexual encounters.

For me, an erection is still much better when someone else is helping make it happen (s) and I have to say that I have had my share of self-doubts about my penis, though far fewer about ME. I think that is probably why I took the risk of rejection despite having a "bent penis".

One woman seemed (in my mind) not so interested and we drifted apart quickly, and I wondered... but she was about 6'2" tall and I think she wanted a bigger man in all ways, not just penis size and shape. (FWIW I felt like a puppy climbing around on his mother when I was with her; it felt a bit weird to me too).

Taking risks is something that we all have to learn to do. Getting rejected (yup, had that experience far before I got to the "taking off pants" stage!) happens. It usually happens because of who we are not because of how we look (including our penis).

If you cannot get an erection even with an injection (I propose that this is an important part of a work up for erectile dysfunction), then you will need to get that fixed before you have sexual intercourse with anyone. Even then you can still have sex with a woman.

Good luck - I suspect that the problems you face ahead also lie between your ears and not just between your legs. Attend to how you deal with this, for it can make any of us emotional wrecks.

Tim

[Aoli]

I can get an erection, but I am scared of making things worse by using it. My flaccid and semi-erect state bother me way more than my erect state. My erect state is about a 30 degree curve to the side towards the top and a little bit up and the base. It's shrunk some, but it's still an acceptable size. I don't know if I can comfortably get into a sexual position, but that's not what's bothering me. I think I could deal with that. I don't want to try to insert it because I'm afraid of further injury.

I wish my flaccid state was normal again, that's bothering me the most. It feels harder and now has the same curve to the side as my erect state. Semi-erect causes it to pull to about 45 degrees to the side before extending again. Very recent change. I'm scared of pain developing and I'm just worried that keeping people around will be difficult. I would like some general intimacy even if I'm not being touched much. I thoroughly enjoy rolling around and kissing, and I can enjoy touching other people. My own personal health is my primary concern. I'd like to be able to use the restroom without having to readjust and it feels like negative sensations are beginning... I can't quite tell. If my flaccid and semi-erect states were normal again I could just ignore it and I wouldn't mind being undressed in front of others.  

Are the women here upset because they can't have their partners penetrate them or are they upset because of the personality problems with their men? Women have all sorts of gadgets that could take care of the penetration portion, and would probably feel better since humans don't have bonus features like vibration. Doesn't seem like it would be of dire consequence to them personally if penetration was the only issue.

[Tim468]

Aoli,

I think that it might be helpful to read what the women have actually said.

They have rarely complained about the penis itself - the complaint is about emotional withdrawal by their man from them. I remember one angry outburst at the disease, more at that than the man himself.

A lot of us here have argued a "use it or lose it" attitude. I do not think I injured myself more at all by having sex. In the last ten years I have had to let go of more athletic sex, but that is about it.

The VED offers a way to maintain regular "stretches" without needing to actually have sex, and probably works better at correcting curvatures. But avoiding erections and sex has led much more often to worsening than almost anything else (short of self-abusive activities that are too rough).

Tim

[Christine]

Aloi,

While I am speaking clearly for myself here, I think that my opinion is shared by many many women.  Please listen to my words and know that I mean every word I am about to say.

If it came to be that I found that I could NEVER have sexual intercourse again with my partner due to his inability caused by Peyronies Disease or any other condition, it would NOT affect my love for him one bit. My love for him was not built on the condition of his penis and is not conditional to that either.   However, in the same light, I would always expect to be able to have all the other aspects of a close, intimate, and romantic relationship with this man that I love so dear.   There are so many many other ways to have that kind of relationship.  Some physical, some emotional, some just conversational.  I want to feel that the man I am in love with holds me in his heart and is open to share his life with me which would include the good as well as the bad.  I would want to know that I am allowed to support him in his trials and that he would be willing to show me comfort and love in any way that he is capable of.

You should not dwell on what you cannot do.....but emphasis in your mind what you can do and do it with love, and caring in your heart for the one that you love.

Now you may be wondering...how can a women fall in love with me when I have this problem???  Well, to me the answer is simple.   Why are you basing your relationship on your problem???   A good relationship that holds much value should be established  and nurtured for a long while before the subject of your penis should even be an issue.   I know, I know.....it may be an old fashioned way to look at things. But believe me, if more couples took the time to get to know each other and develop a real relationship BEFORE establishing a sexual relationship the problems couples have that send them to divorce court would probably be a whole lot lower.

My advice,  take your time....don't let your condition rule your future.  Any woman that truly loves you will not base her love on what you can't do....but will love you for what you can do, and will want to share your life and fight this war together.  Don't shut her out of your life, be honest, let her love and support you and most of all be a partner in every aspect.  

So many men feel that their life is over at the realization that their condition has hindered their future abilities to have intercourse.  The anger period and the depression period is so hard for them to take and they reject and push the woman in their lives as far from them as possible. In my case my husband would refuse to even hold my hand....now what does that simple act of affection have to do with his penis or the lack of his ability to use it???  This is what confuses me to death!!  When they can clearly see that this woman is not rejecting them why are they not grabbing tight to the one person who can help them, support them, and love them through one of the most trying times in their lives.  Why push the one person who already loves you away and then wonder if you will ever be able to attract a woman.  YOU ALREADY HAD ONE!!!  Or they resolve themselves to being alone and without a women and turn into a lonely depressive individual.     ok...so I know I am talking more about my own experience here but it's a story that I am hearing time and time again.  

I guess I am just saying that if you have a loving partner that is willing to stand by you and work through this condition and fight the fight with you....then let her.   If you don't have a partner and am worried about your ability to get one.....start by establishing a relationship that is not based on sex which is probably good advice with or without Peyronies Disease.   You will probably see that if you find a woman that loves you, and I mean truly loves you, the condition of your penis will not be the issue.....but establishing ways to show your partner that she is loved and that her feelings are considered will go farther than you think.

Just my two cents.    keep the change.

Blessings,  Christine

[Hawk]

You gotta love Christine and the value of what she says when she finally decides to post and say it

That was an awesome post that every man here would do well to ponder.  Maybe that post should be printed and left on a few desks for husbands that shut their wives out.

Back rubs do not require a straight rigid penis. Nor do conversation, compliments, a nice meal out for two, or a movie together.  

If a man is saying, "I have Peyronies Disease so I can never take you out to eat, have meaningful conversation, rub your back, cradle you in my arms, or tell you "you are gorgeous" again then he is surrendering to major impairment that will make him much less satisfying as a partner.  In fact he is admitting he has given up the thought of being a partner at all. Before worrying about what supplement or device might straighten his penis a few degrees he would do well to fix the part of him that has a guaranteed fix.  that is of course the psychological aspect that is almost always what devastates relationships and happiness.

Because Peyronies Disease takes away one thing, do not be like a spoiled child and throw away everything else that you can still provide and experience.  That includes sex.  Sex does not even require a penis much less a large straight erect penis.  I will be the first to admit i loved having mine and I miss it but I will not lose everything because I lost one thing.

"Life does not have to be perfect to be wonderful" Annette Funichello

[Hitman]

although I'm the least experienced out of the bunch here there are lots of ways to get creative like Hawk said

deep warm loving hugs can do wonders you know. intimate foreplay, massages and oh don't forget flowers-- I don't mean the fake ones--- and your fingers  

a little bit of imagination can go a long way.

[Aoli]

To Christine:

Thank you. I appreciate what you've said, but it seems I've led you all to misinterpret who I am personally. I'm not surprised, as this is generally a forum where the young are irrationally upset and define their lives by their organs. Even so, I'm sure that people with that outlook can benefit from your words. I am accustomed to being on my own prior to the affects of injury. I enjoy being alone more often that I do with friends. Just a personality trait. It's relaxing. I'm very warm to people when I'm around them. I will NEVER, EVER push someone away because I'm having a problem. I learned my lesson about that before this was an issue. I don't avoid arousal (quite the opposite in fact), but I simply don't think the shape can permit any positions I would personally enjoy or would feel pleasant for her or me. It'd be nice but I'm able to do without. I'm just trying to keep it from getting worse. Don't want to have serious problems in non-sexual situations too, which is the case with some people. My current concerns are predominately health related. People with WAY more serious problems than me do just fine. I'm a winner. My personal success and my sex life have nothing to do with each other. I'm a tad jaded towards the mature behavior of others my age however, so I wanted some examples of how people have reacted when it came to sex without commitment in the dating world. I'd still like some actually, I want to know what range of reactions I can expect. That way I won't have any nasty shocks.

Those experiences would also help to elucidate how this affects a woman's interpretation of someone on a more primitive level. Emotional attachment screws with that so I can't use that information. As far as I've observed women generally project certain traits towards someone with genitals of a certain size on a primitive level. Appears more masculine, more alpha, etc. It's just like the halo effect and someone's facial attractiveness (pretty=good, so we assume more good things about those we find attractive, just as the inverse is true. Our perceptions will inevitably change when we get to know the person, but when you don't have a strong relationship (platonic or not) to a person, the halo effect holds true. Never seen an exception to that phenomenon). I have no clue what psychological effect that someone whose body is afflicted in this manner might have on a woman's mind. The rational mind is dominant in interaction, but emotion and attraction are purely primitive. Case and point, a person might meet a very successful person who is attractive, but if they don't feel attraction for the other, they can't rationalize themselves into feeling it no matter how smart a strategic move it would be. Which is exactly why what qualities people say they want in someone (what one should rationally desire) are often incongruous with they types they pick. I want to know how a physical issue of this sort might influence someone's personal image of you as much as I want to know what visceral reactions I can expect. I don't trust the rational words of people. I prefer to decipher how their brain's work because they will try to rationalize themselves into correcting any personal grievances. When people feel something negative about someone they like, the rational mind that houses their values makes them feel guilt and they try to correct it. And that's what is left unsaid to the partner out of fear of hurting them and personal guilt for feeling that way until they can bury the feeling of, "I wish X area of my life was more perfect for me."

It's all perfectly natural and I'm okay with it, but your experiences will help me make make sense of someone's primitive reaction and work around it. Can't fault humans for being human. Bad experiences may be with more shallow people, but they're often more honest about how they truly feel and that's valuable information for me.

Medically, it seems like using it would cause pressure against the curve, which will cause even more scar tissue. So that's why I don't think I'll be using my body until it gets better.

[Angus]

Home Run, Christine. Your post made the Highlight Reel!

[voulezvous]

It always amazes me how much we men bear an incredible willingness to feel shame when we had nothing consciously to do with our condition.

I have never had a discussion with a man who didn't agree that he would date a woman he was attracted to even if she had a mastectomy. Yet women see the loss of their breasts as a disfigurement that would not be tolerated by a man who might otherwise be attracted to them. Doesn't that seem familiar?

Personally, I have had Peyronies Disease now for nearly 3 years & in that time have dated 4 women who learned of my affliction during the course of our relationship. In that time period there were 2 ladies that actually had sexual relations with me - as far as they could go - & 2 that didn't. My most recent partner was one of those. Interestingly, I found myself telling her about my Peyronies Disease on our 2nd date. Her reaction was to admire my courage for telling her. If anything, it was a "turn on" to her.

The upshot of this is that I am no longer dating any of these women but I am convinced that not a single one of the breakups had the slightest to do with the condition of my penis. Most often it was because I am simply not ready for a long term relationship. Every lady who I informed expressed nothing but compassion & never made me feel inadequate. Now I don't doubt that there are women who will run as fast as they can if they learn about my "problem". However, I believe that these are the same people who would run from any congenital defect.

Let me tell you, friend, if I spot a woman who attracts me because of her looks, her wit, her intelligence, etc., etc., I am definitely going to do my best to meet her & ask her out. I trust my own judgment of the kind of women I like - as a person first - to have confidence that I will not be rejected because of my genitals. By the way, I am 66 years old!

[Supportive1]

Aoli and all - I read the men's threads regularly and share regularly in the womens forum, and am finding so much information and support here.  I am so grateful.  I have been dating my guy (who has Peyronies) for about a year.  The sex stopped once the Peyronies progressed to where insertion was painful to him and actually impossible due to the bend when he got an erection.  That is when ALL intimacy stopped on ALL levels.  No more touching, no more kissing, no more hugs, no more snuggles, no more back rubs -- nothing because of his fear of getting an erection and his not being able to perform and satisfy me.   I feel rejected, which in turn makes me feel fat, ugly, unattractive, unwanted, etc.  Even though whenever I see him, I see a handsome, sexy man, who I want to sit next to, hold hands, hug, kiss, and cuddle up with overnight.  But he wants no part of it, and consistently pushes me away, fearing that "all of that" will lead to sex.  It is horribly difficult for me to imagine staying with him; but ONLY because of his constant rejection of me.  If only he would allow some sort of physical intimacy and closeness, I know I could stay beside him through this, no matter how long it takes for him to get "better" whether that be physically or psychologically, or God-willing, both!

One of the other ladies wrote this in one of her entries the other day.  It is so true.  And I hope by sharing this on the men's page, that someone, if just one guy, gets it, it will save a loving relationship!!

"The only thing they can legitimately blame Peyronies Disease for is the bend in their willy. All other actions are theirs alone, and they have to own up to them."

[Old Man]

Supportive1:

WOW! What a position to be in with your man. It would be difficult for anyone to endure such a situation in normal times, much less in a bout with Peyronies Disease.

I realize where you are coming from, but there is something that might lend a thought as to why he does not like the "foreplay", for want of a better phrase. Some men have a sexual makeup that does not take much intimacy to get them "in the mood" and the experts says this is a term called over sexed or have a large sexual appetite.

OK, Peyronies Disease strikes and renders him incapable of getting an erection and performing like he was used to doing. The pain with Peyronies Disease can be very severe and devastating. Fear enters the picture when he even thinks about having any physical contact with the opposite sex. I know this feeling very well when Peyronies Disease first struck for me. I was not married at the time, age 24, full of vim, vigor and vitality and had many opportunities to date and have relationships. I just shut down and kind of went into a shell  for quite some time. Finally, got some help with the Peyronies Disease and things went back to somewhat "normal" again.

So, what I saying is that if your man is still young enough to have intense feelings about sex and the problem of Peyronies Disease interferes, he is really on the down side. Now, where do the two of you go from here - that is a hard question to answer. Somehow, some way, the two of you have to get a mutual understanding for the problem and seek professional help if you cannot work this out together. I know that you have a problem in getting him to open up and talk, so you have to work on that first. If you can get him to talk, you have most of the battle won. After that, you need to reach a point where the problem is mutual and both understand what to do.

I am not a doctor, but have had many chances to work with guys, gals and sometimes couples in getting them back on track. It is a major problem with some guys that are very energetic, sexually virile and need constant sexual relations to keep them happy. So, use the above for what it is worth and I hope and trust that you can get satisfaction with him soon.

Old Man

[Jazz]

Christine, you hit the nail on the head, so to speak, and no pun intended.  I have not yet posted in the Ladies' Room, but still intend to do so - mostly I've been lurking in between doctors' visits with BF. What an awesome post.  And I hope you guys are listening......

Jazz

[alcohen]

deep warm loving hugs can do wonders you know.

" In my case my husband would refuse to even hold my hand....now what does that simple act of affection have to do with his penis or the lack of his ability to use it???"

I don't know about his case and I hate to be a downer, but in playing devil's advocate here, there are times where things as simple as what is being mentioned here HURT LIKE HELL.  There are times during the day when my penis hurts more than it usually does.  As I have said here before, it hurts all the time but it hurts worse when I am getting an erection.  The pain is not always the same when getting an erection, and the pain is reduced if I get an erection and am in just my boxers (with them turned backwards so that my penis does not brush against the ridges on the front of course) but most of the time when I am in pants and get an erection the pain and discomfort is almost unbearable.  Sometimes the pain subsides momentarily but it always comes back.  

Holding hands with someone you love or giving them a big hug is the most wonderful feeling in the world.  If I had it my way I would be completely back to normal. But since that is not in the realm of possibility in any reasonable time-frame I would settle for having a normal non-sexual life.  That I cannot do.  Most of the time when I hold hands with my girlfriend I hurt in some way.  This is first and foremost a physical hurt.  Clearly it is affecting me psychologically but the pain is paramount to all.  Just walking around on a daily basis is a chore.  I have to try to just ignore the pain.  I take 2400 mg of Motrin daily, 900 mg of Lyrica, and Trental as well.  Unfortunately it doesn't help.  I used to love to workout, to keep myself fit, and to eat healthy.  I find that any physical activity hurts and as a result I have given in to at the moment not even trying.  

I still hug my girlfriend and hold hands with her.  But most of the time IT HURTS.  That is the cruelest punishment I can ever think of someone having to deal with.  I feel cursed.  And I found out the cat my girlfriend and I adopted from the humane society 2 months ago (who is now six months old) has FIP and will soon die.  

[Hawk]

Alcohen makes some important points and all the women here need to pay attention.

While Alcohen's degree of pain is very near the high end of the spectrum (some men have no pain), pain is not unusual during the first 6 to 18 months.

So the issue is knowing whether the withdraw and lack of intimacy is due to actual physical pain or due to psychological issues.  I am sure that any women who would trouble herself to post on this forum out of concern for a relationship would understand a man avoiding physical pain and even understand the time needed to address the psychological trauma of Peyronies Disease, but in the end, the statement

"The only thing they can legitimately blame Peyronies Disease for is the bend in their willy. All other actions are theirs alone, and they have to own up to them."  Is VERY true.

Clearly conversation and dinner out does not cause painful erections so there is no excuse for withholding these.

[Christine]

Alcohen,

I understand what you are staying completely.   If it were a physical pain that was keeping him at bay I would not have ANY issues with his restraint.  Actually I would completely understand his withdrawal.  He used to tell me that often just a simple touch from me would make him aroused and if that was at all true, I certainly would not want to be the cause of any pain to him physically.  Actually in the early stages of my husband's condition this was the case.   However, I was referring to his actions after a few years into this and long past the physical pain had subsided. By that time it was really becoming hard to stay at arms length from the man that I love.  It sounds like your condition is even more severe then that of my husband and for that I am trully sorry for your situation.  

I cannot imagine the pain and discomfort both physically and emotionally that you men go through.  It really makes me crazy that there isn't anything that we can offer our significant others other than a shoulder to lean on and an ear to listen.   If that is all we can offer, it pains me that he won't accept that because I love him so very much and his emtional pain hurts me as well because I hate what it has done to us as a couple.

I pray so hard that something comes to light soon in the medical world to find something to substantially help you all!!!

Blessings,  Christine

[alcohen]

Thank you for the replies.  I am glad that I am able to use this forum to compare my symptoms with people who are having similar ones and see about finding ways to deal with them.  I need to find some way to make the pain stop.  

One other point...when just walking around and doing everyday things is very painful I do have a right to legitimately blame the Peyronie's Disease for that.  

And playing devil's advocate on the dinner and conversation bit, I believe some men may have a psychological issue with that.  

Firstly, they do not want to hold hands or touch because of fear of pain.  The human body is conditioned to not want to do something that it knows will bring about a painful response.  

Lastly, they have the memories in their head of when conversation and a nice dinner out led to a very intimate and/or sexual experience afterwards.  I believe this is more often the case when men develop Peyronie's while they are dating or are married to someone.  When they are shutting out their lover in these situations after developing Peyronie's, I believe it is because they have stopped seeing the point in doing the situations at all.  

They picture themselves having the nice dinner out, dressing up, putting on cologne, etc., and then afterwards coming back to the house where their significant other is now in the mood and wants what every woman wants, needs, and deserves...intimacy with the man they love.  The man is afraid of this not only because of possible feelings of inadequacy if he is insecure about the shape of his penis, but ALSO because of the physical pain that will come with the possible intimacy.  

So therefore things are linked together.  If intimacy leads to severe pain, and dinners out ultimately will lead to intimacy, then some men will shy away from everything all together.  Men can also fear the discomfort and akward situations that can arise when they have to see their partner sad because they know what is happening is bringing the man pain.

For me personally, it really hurts to see my girlfriend upset because she sees that I am in pain.  Because I love her, I want nothing more than to see her happier than anything.  

Just some thoughts...

[Hawk]

And playing devil's advocate on the dinner and conversation bit, I believe some men may have a psychological issue with that.  

Firstly, they do not want to hold hands or touch because of fear of pain.  The human body is conditioned to not want to do something that it knows will bring about a painful response.  

Lastly, they have the memories in their head of when conversation and a nice dinner out led to a very intimate and/or sexual experience afterwards.  I believe this is more often the case when men develop Peyronie's while they are dating or are married to someone.  When they are shutting out their lover in these situations after developing Peyronie's, I believe it is because they have stopped seeing the point in doing the situations at all.  

They picture themselves having the nice dinner out, dressing up, putting on cologne, etc., and then afterwards coming back to the house where their significant other is now in the mood and wants what every woman wants, needs, and deserves...intimacy with the man they love.  The man is afraid of this not only because of possible feelings of inadequacy if he is insecure about the shape of his penis, but ALSO because of the physical pain that will come with the possible intimacy.  

So therefore things are linked together. ...

Alcohen,

Sorry but physical pain may be beyond your ability and hence your responsibility to address.  That is not so with psychological pain which is our responsibility to own, address, and fix.  It may require professional help but in the end it is our issue and our responsibility to get over.  Your example helps one to understand the challenge but it does nothing to remove the responsibility.

I encourage all women to click on this quote to read a more in depth explanation of the mountain men must climb.

Click this quote header

They must however climb that mountain.

I have laid in bed with tears silently rolling down my cheeks in the dark during foreplay because I morned the loss of what was.  Sex made it impossible not to acknowledge the contrast and loss.  That being said, it was still my mountain to climb.  I would like to think I have pretty much scaled that mountain.

[tinaa]

Dear friends

         This is a short notice to tell you that am going to post a question in our room as well as it will be also posted on the male general discussion room, so please do your best to participate and share your opinion and thoughts,

The question will be:

   Dear friends

For all you who had suffered either recently or for a  long time from Peyronies Disease, and as you know for sure, this condition not only affected you but also us as your partners, I want to ask you:

1- Do you think that we as your partners have any role that we can offer you in order to get out of your silence and pain??

2- what were your expectations from your partners to support you ??

3- In which ways do you think we can help to get out of this situation??

4- If you want to ask your partner to do one thing to you , what would be that be???

please try to answer these so it is clear for us to understand the way you think as males and as Peyronies Disease affected people in order to do our best to be by your side and support you.


God Bless  

[newguy]

I still hug my girlfriend and hold hands with her.  But most of the time IT HURTS.  That is the cruelest punishment I can ever think of someone having to deal with.  I feel cursed.  And I found out the cat my girlfriend and I adopted from the humane society 2 months ago (who is now six months old) has FIP and will soon die.  

although I'm the least experienced out of the bunch here there are lots of ways to get creative like Hawk said

deep warm loving hugs can do wonders you know. intimate foreplay, massages and oh don't forget flowers-- I don't mean the fake ones--- and your fingers  Grin

a little bit of imagination can go a long way.

Very sorry to hear about the cat  . I'm sure you both have given it lots of love since you adopted it, so try to concentrate on the pisitive, however difficult it may be. Try to stay positive about all of your problems no matter how difficult it may be.

[jackp]

tinna
My wife was the first to notice the curve on vacation in 1995.

It is hard to give an exact answer to your questions because it has been 13 years.

One thing my wife has never complained!! Kept the sex live good and modified our positions for both of us.

One day she noticed the shrinkage from peyronies. She asked it it was smaller. I told her yes. She told me no matter what "Jack I did not marry you for your penis."  She has never mentioned it again.

The peyronies, ED, venous leakage and corporal fibrosis got so bad that doctor recommend an implant. The first doctors attempt at an implant was aborted because he punctured my urethra.  In the recovery room she told me not to worry this will not change things between us.

I started research on Penile Implants. She told me not to do this for her. I told her I was doing it for us and to be honest myself.

I spent many hours on the computer. Went to several other doctors. I finally found a local doctor that refereed me to a male sexual function specialist at Vanderbilt.

The implant was successful and I am almost 5 weeks post op. She is just as excited as I about the outcome.

My implant was not for just ED but the complications from Peyronies.

M live by my faith and my attitude is NEVER EVER - NEVER EVER - NEVER EVER give up. Just because one med or doctor could not help did not stop me from looking for one that could help.

The only advice for you and your husband is communication, communication, communication. Laugh and cry with each other. Hold each other, and never ever stop having sex. Sex is not always penis in vagina. You can have fun in a lot more ways.

My wife and I have been married 40 years. Learned a lot the hard way. Peyronies is not the end of the world and/or sex.

For assistance with sex and shrinkage go to the VED section and contact Old Man. In a year I gained almost 1/2 of the shrinkage. A good marriage counselor could also help get the communication going.

Jackp

[tinaa]

Dear musicman and jackp

    First of all let me say thank you very much for being so honest in your reply, I know it hurts to feel just like you are (lets say) not satisfying your partner as u wish, but did you ever ask yourself (if this is what you are looking for ) whether your partner is really satisfied and happy or not,???
did you ask yourself what we really need from you as partners??? believe me we as females when we truly love somebody these things would never change the way we feel , love, and the way we treasure our beloved ones, BELIEVE ME. but the only thing that could really change the way we express ourselves to you as our partners, is the way you treat us, so we are reacting according to your behavior, and this doesn't mean that our love and commitment will be conditional, NEVER,  it's just we will keep trying to fix whatever happened and will happen , and will keep trying to send you indirect msgs that we will always be there for you, and to be honest with you.  If we don't find any response from your side after many trials, the only way we think about it is that you don't love us anymore regardless of the reason and this is more than enough to push us far away from you. as we don't believe that this disease is really enough to keep you isolated and doesn't give you the right to deprive us of the love we spent ages in building and dreaming of, the thing that could drive us crazy to the point that will make us just make a decision to block our heart from EXPRESSING OUR LOVE TO you.


The other thing. did you ever think about ( is this the only thing in you that could make you really a man???) if yes then after losing it what are you??

Let me share with you some thoughts. Do you think that the God doesn't know what is going to happen with you and me in our life??? HE KNOWS......MORE AND MORE. so did you try to ask yourself what was behind this WHY ME GOD?? am sure you did that millions of times, but I didn't mean in a way of blaming God for doing this for you. But in a more mature way that goes with ( OK God thank you for giving me the chance to test the love of those people around me and to offer me this true precious love that is and will always be NON CONDITIONAL and believe you are very BLESSED to have it. then try to move to the next step of how can I use this to help others who are suffering and are still in pain  (I am sure no one can ever feel this pain unless he passed through the same experience ) so maybe God wants to use you with those people who really need your support and courage. Did you ever try to think of others rather than yourself, while you still have a loving caring and committed partner??? WHAT ELSE DO YOU NEED??
YOU are being BLESSED
YOU are still being LOVED
YOU are a MAN with or without that organ. ( This is really the way it is and the way we believe ).

And all that we need from you, JUST YOU yourself even if you will lose all the your other organs we SILL TRULY LOVE YOU. and you will always be a MAN in our eyes.


and the last thing I want to tell you:

IT'S OUR RIGHT TO BE ALLOWED TO HOLD YOUR HANDS AND BE WITH YOU WHILE PASSING THROUGH ALL OF THIS , AND IT'S OUR RIGHT TO LOVE AND BE LOVED BY YOU.

DON'T LOSE YOUR FAITH

[jackp]

tinaa
Satisfying partner. It never occurred to me to stop satisfying my Princess. When my erection was only half hard I would find things other than penis in Virginia for sexual satisfaction. Slowly introduce oral sex, find her G spot, get a vibrator. I introduced these gradually and in a loving way. Do not push. My approach was to always satisfy my Princess. I asked nothing in return.
What did I get in return, Kissing, stroking, and oral sex from a lady that once thought it to be "dirty." She always kept me satisfied and the times we could manage penis in vagina it was special for both of us.

Stop the indirect messages. Have a talk with him and tell him exactly how you feel about him. Men do not get indirect messages. A quiet place with a glass of wine, sit close and let him know how you feel and give him time to respond.

I never let my penis or size of my penis determine if I was a man. Penile shrinkage can be a blow. When that happens get a VED and contact Old Man for instructions. He can in most cases regain some of his size back. I tell the true story of the three of us that ran together in our early 20's. Juniors claim to fame was his 9" penis, Billy had just over 3" and I was in the middle with 5.5"
Who got the most sex? Billy. Junior never could understand why the girls would not fall over him. Some of the girls said that they wanted pleasure not pain.

I am blessed. A wife of 40+ years. 3 Children, 2 grand kids. I pray every day that my son and grand son be spared peyronies.

I have a strong faith in God. I also believe that we have to do things in Gods time and not our time. My time for an implant was 3 years ago. Gods plan was 5 weeks ago. God lead me to the best doctor in the southeast. He put in the implant that other doctors could not do. Will I have all I had before peyronies? No. What I will have is a penis that has a usable erection. What else could I ask for.
My Princess will be home waiting for me when I come home next week after I get the implant activated. We will probably act like newely weds. She says she has something special or me. I told her that she is all I want.

He is going through a tough time. Be supportive, help him find his faith. Faith in God can do anything. My Princess fought me that years ago and I will never forget it.

If you need a friend just knock. If you need support lean on us. If you need a good doctor some of us have some you may try.

Keep the Faith

Jackp

[Old Man]

jackp:

Only one comment --- well said!!!!

Old Man

[tinaa]

You are really a wonderfull support group.

God bless you

[LWillisjr]

Jackp,

Thank you and what great comments. My wife and I have been married 32 years. And we were very fortunate early in our marriage to learn to focus on each other's pleasure. Recently we have even begun to council with young couples, and we have even done weekend relationship seminars focusing on sex. It seems that many younger people are entering the relationship with a "what's in it for me" attitude. Not all think this way, but it seems to be more accepted these days.

This was all before my Peyronies Disease. And my wife and I have also worked through it as you did. Learning new positions was just part of the experience and the fun. And since having Peyronies I have been able to share this with friends. And I have since learned of their ailments and issues they are having to deal with. It seems guys don't talk and share much, especailly when it comes to ED and other urological issues..... let alone Peyronies. And regarding Peyronies specifically, I've been emailed from guys all around the world who have read my story and are seeking advice. Some have even called me to speak and discuss over the phone.

And yes, we also have a strong faith in God. And we believe there is a purpose for everything. And He has allowed me to go through this for a reason. Is it to simply help and encourage others? I don't know. But if we are not here to help others....  then what is our purpose?

I do know that God is using many on this site. There is no single cure or we wouldn't be here. But knowledge is a tremendous asset. So He has used many on this site to share, to encourage, to offer help, to offer alternatives, at times to disagree, to recommend, and to offer compassion and understanding. It is a terrible disease, and hopefully there is the once and for all cure just around the corner.

Until then, it's up to all of us just keep doing what we are doing.

[despise]

hi everyone im taylor mcgarry im 17 years old and just got diagnosed with peyronies disease. forgive me for no caps but its faster for me to do this. ok i am going crazy right now my penis is hardening and going left like a hook. its freaking me out i mean how can it be just hard and uncomfortable to all of a sudden bend left? i mean what the hell man! it seemed like it was getting better and now it seems like its getting worse. can anyone please help me out? what can i possibly do to make this better? i need good information though because i am young, i am willing to do anything but i dont want to end up making it worse. so please if anyone can give me good facts on how to heal this it would be beyond greatly appreciated. any pills i can get from the vitamin shop or anything. i dont care how much it is i will save up and buy it if it can help the peyrnoies disease. as for coping with it i been taking xanax illegaly. 1 bar a day so far and its alright but i just took my last bar. i have been smoking lots of pot and cigs and doing no physical excercise which is obviously really bad for my peyrnoies disease. i am signing up for a gym memborship right after i send this message. i am going to smoke a couple more cigs and quit. as for the pot and xanax im not to sure. as long as i am physically excercising it will help. they do help me mentally but im asking your guys opinions. even with a lot of cardio excercise and healthy lungs do you think that smoking pot and taking xanax could harm my peyrnoies disease in any way? any help here would be awesome guys. any pills suplements etc........ thank you all i llove you guys for being strong and living with this. i know now the feeling of hopelessness and i plan on helping others after i get through this.

[Tim468]

Taylor,

I write a lengthy and thoughtful (at least I think so) response to a similar post by you in another thread a few days ago.

So take some advice already, instead of asking for more of the same.

Tim

[jackisback]

Despise, i feel what you say about needing some substance to calm you down. I understand this need and where you're coming from. There have been a few times where I just had to take some pain pills to keep from going crazy. But taking a bar a day is really not smart. Sorry but you really need to calm the F~@< down. That, pot, cigs, you're doing all the wrong things. Cigs, caffeine, stimulants like that need to be the first thing to go. If you're really that high strung you need the Xanax for now, then at least wean yourself off the other stuff. It seems that you're in a scary place right now, most of us have been there, but have faith that you will eventually get to the place where you have more control psychologically.

[Hawk]

Dispise

I think you have received some good input so I will not respond to what has already been said.

I will comment on the "Please forgive the no caps but it is easier and faster for me".  This forum is for the ease and convenience of all.  There are ten thousand posts here that much work went into writing and organizing into topics for your convenience.  It would be easier and faster for me to shut the forum down but I think of others.  When you post and ask to receive, you can surely take the the few seconds extra to consider the thousands of others that will read the exchange.

Thanks or understanding the point and not taking offense.

Hawk

[Hawk]

Discussion on a post initiated by Valkrest about a possible inappropriate medical exam, were moved to the topic "Urologists and other Doctors"