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Liam

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Highlights of Women Speak Out about Peyronies Disease
« on: September 13, 2006, 09:38:05 PM »

This area contains highlights from the main Peyronies Disease Discussion Forum topic on "Women Speak Out about Peyronies Disease,...".  This area contains women's experiences with a partner with Peyronies Disease.

As with all the topics on this newly diagnosed board, these topics are read only highlights copied from the main forum.  Go to the main forum to join in the exchange by posting questions and comments.
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Angus

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Highlights of Women Speak Out about Peyronies Disease
« Reply #1 on: November 11, 2006, 01:22:30 PM »

    The following is a one-post compilation of highlights from the Women Speak Out About Peyronies Disease thread. Credit to individual posters is not given, unless the poster has signed the post. Individual posts have been copied into this page and no grammar or wording has been changed from the original post. Entire posts have been copied where possible to retain the context of the original post. The posts are entered in chronological order from the top of the page to the bottom, so the oldest posts will be read first and the most recent posts will be read last. This IS a work in progress and will be added to and edited so check back often.

             
             HIGHLIGHTS OF WOMEN SPEAK OUT ABOUT PEYRONIES DISEASE


Hi, my husband has Peyronies Disease and I hate it.I wish more women would get involved and speak up..and maybe we could help each other get through this.. It’s just not something you can pick up the phone and say hey girl.. my husband has Peyronies Disease after 30 years of marriage I see a wonderful strong man
feel ,lost ashamed and doubting his manhood.. All I could do is be there.. encourage him, help him in any way that I can..  thank god for this web site..



HI,so glad your here,, your all here.. my husband is 51.. Peyronies Disease hit at age 50
I swear I thought it male menapouse at first.. not that I still don't think men go through it I do.. but this was so much more than I ever imagined.. my husband went to our family doctor after being hurt working on the house..
ed occured not even a week after.. he was in alot of pain and swollen.. of course even through it was an accident it still was a sexual matter because it concerned the penis.. our insurance wouldn't pay.. and the doctor gave my husband Viagra.. which really didn't help then.. my husband was so upset with the doctors uncaring attidude
and the fact that our insurance wouldn't help pay to find out what was going on.. that after a year he still hasn't gone to see another doctor.. so I am on my own search to find out what information is out there.. I'm amazed at the many lives Peyronies Disease effects, how many men there are.. how this disease is treated so unfairly..why isn't there more research being done..
thanks for listening to me ramble.. thank you for being here..




As we have discussed in the past, I have always maintained and stated publically "give me a few good women, and we'll beat this thing"...however in the face of Peyronies Disease we have a big issue to overcome.  The reaction of men whose wives, girlfriends, etc  become advocates, activists and really devote focused involvement.

Here are a few "facts" about volunteering "Women contribute more volunteer hours than men...32.2% of women volunteered time compared to 25.1% of men.  Age also plays a part in this..Avg age is 35-44 years old.  (These are national stats). The highest majority of volunteers were married. May seem dry, but thats whats going on.

So here are the questions..How many women involved with Peyronies Disease are doing it with their husbands (boyfriends) approval and encouragememt?  How many posts contain the statement "my husband won't talk about it"?  How many men don't want their condition to be known, even through a partners association with / or connection to any public association, organization or project?

The possibility that the fear of "exposure" by having a mate openly talking about or working on projects concerning Peyronies Disease may actually halt the process needed to confront the issues is more of a reality than we might wish to acknowledge.

It's been my experience that most of us (women) get involved out of a sense of desperation..and from many I have talked to, their men "don't want to hear it".

That doesn't mean we don't continue, my personal attitude has always been "Damn The Torpedos", but it does mean that sometimes it can create even more problems within a relationship.  It is easy to post and discuss, who you are is hidden either by choice or design.  To actively get involved is a whole other issue.

That whole "other issue" is what we keep talking about.  So last question..Gentlemen,  How do you feel about your partners involvement in advocacy, and would you actively support and encourage her?

Take Care,
Marti






Hi, everyone,, my real name is Jenny my husbands name is Bob.. but we call him RL.. He knowsI'm on here and has read most of what i have copied and is trying a home remedy at this time.. sence being here weve actually have talked more.. and have actually have succeced at having intercourse which is something we have'nt done in 6 months.. so yes.. i will speak out.. i will ask for help.. and yes I beg you,, encourage you to keep talking to each other and most important not to forget to talk to and envolve your spouse, girlfriend.. whatever..
good luck to you all.. don't give up!








Hi, all... sorry I haven't written in awhile.. I guess I've given up myself lately.. I showed my husband the letter you wrote to me,, and it actually kinda helped for a day.. then I find out were experimenting to help only him, that until his problem gets better,, my needs will have to wait.. I was punished harshly for masterbating when i was alot younger.,. maybe it had something to do with sexual abuse.. its almost like vodoo.. or something..
just a mind thing,, hang up..thats it..sorry I'm being selfish..but anyways..

The world has changed so much,, you can buy or sale almost anything on the tv.. talk about things I never dreamed people would feel okay talking about ... but maybe the bad things have always been out there.. the things that hurt men and women,, the things that we hind inside ourselves
and can only talk about on a website, chat room, or even in a letter.. maybe if men and women talked more openly about Peyronies Disease, ed, maybe there would be more research, more of an effert to find a cure.. besides having to take injections or surgery to fix the problem..

I won't give up.. and if Oprah called and susan would go..   I'd go in a heartbeat..

Peachb,, ..
This is a wonderful web site.. you've come to the right  place..
theres alot of information.. alot of wonderful people who listen and try to
help.. and everyone need someone just to listen sometimes..





You are so right, we do need a place to discuss, vent, and find hope.  Probably the worst phychological thing this disease does to us is that it isolates us.  Because of it's very nature, those affected won't talk about it.  Even to their partners because, for some, admission of the fears may mean showing weakness.  Not all are like that, but if you read the posts long enough you find it.

It has been said that depression is anger turned inward, and anger covers up fear.  And heaven knows this is an angry disease.  Anger on the part of the man who is aflicted and anger on the part of the woman who is affected by the affliction.

About the only thing that helps that is talking or posting, because at least you hear or see your thoughts.  That helps relieve the isolaton.

What I'd like to hear from the men is what started you talking to your women.  What did your woman do that made you comfortable enough to share what you were feeling and facing.  How are you coping as a couple today?

For Mike and I, we have arrived at a place where it is "ok"..it is what it is and we have learned to live with it.  The bad times are relieved by acknowledging that while it aint what it was, we can still pull together in the same direction and overcome the problems.  In short we work on it.  We attempt to comunicate.  We acknowledge each others right to feel bad or angry at the situation, without having to be angry with each other.  I have had to learn and acknowledge that he may not feel the same way about himself as he did and I can't change his mind, and he has had to acknowedge that I have the right to tell him that I still see him as I always have and it makes no difference except to him.  Those thoughts and feelings once expressed can be worked with as long as we are willing to do so.   I has made a difference in the bedroom because I don't need to reassure him, and he doesn't need to prove anything. We can just relax and enjoy in what ever form it takes. The "fear factor" isn't present anymore.   It is an ongoing process.






Hi all,

My name is Stephanie.  I am 30 and my 31 year old husband of 7 years was diagnosed with Peyronies Disease about a month ago.

 We are still in the early stages of learning about this, but I feel there has to be more for us that what the urologist had to say.  This doctor was very matter of fact and really gave us no hope. He basically said that dh has Peyronie's and that his case is bad (especially considering his age.) He said that it will never go away and that there is nothing we can do about it. He said that the case is bad, but not bad enough to do surgery. He said they only operate on maybe one case in 10 years.

We felt so dejected leaving there and did not really have a good chance to process it all. This was the urologist that the PCP recommemeded, but I am going to push to see another one if things don't drastically improve. You just can't tell me that there is nothing that can be done about this. I refuse to believe that. Do you all think it would make sense to get another opinion, or is the medical profession convinced that we can do nothing except take Vitamin E? 

Anyway, I am glad to find this forum.  It is very frustrating to feel so powerless from this condition.  I look forward to hopefully learning a few things from you all.

BTW, Is anyone having any success with Enzyme therapy??



The situation isn't that bleak. Many urologists simply don't know much about this condition and aren't up on current developments.

There is at least one drug in the works that looks like it might be a winner. It's an injectable enzyme called AA4500 and you can find out about it on other threads in this forum. Although it's been delayed several times, with luck it may be available within the next couple of years.

Although there apparently isn't much research being done specifically on Peyronies Disease, there's a lot of activity on other, similar (and possibly related) fibrotic disorders, and on reduction of scar tissue.  Any therapies coming out of that research might very well apply to Peyronies Disease. Long term, this is the square where I'd put my chips.

There are in fact several surgical techniques in use for Peyronies Disease and theyr'e being improved and refined as time goes by.






Hi Stephanie,

Welcome to the forum although I'm sorry it's necessary for you to be here.

As "j" said in his message, one of the problems with this disease is that many urologists simply don't understand it, how to properly treat it, and especially the devistating mental side of the condition. There are some urologists that are dedicated to research and improved treatments for Peyronies Disease, but they are in the minority. It's so important for the Peyronies Disease patient to educate himself about all aspects of Peyronies Disease, and search out the best Peyronies Disease urologists possible. If you would like to advise what general part of the country you live in, we may be able to help you find such a urologists.

"j" also mentioned AA4500 which is being developed by the pharmaceutical company Auxillium. You can find discussion of this under another topic heading on the forum. Just reading the many discussions on the various topics in this forum will give you a good flavor of where we stand with Peyronies Disease today. Surgery for Peyronies Disease continues to improve but it is usually considered the last course of treatment. Typically it is only performed on patients who's condition makes intercourse impossible, but who still have good erectile function. In any case it should only be done by surgeons skilled in genitourinary reconstructive surgery. Again, there are good discussions on surgery under the "Surgery" topic.

I'm 62, my wife of 38 years is 60. My Peyronies Disease appeared about 6 years ago, and because of our age it has not made a major impact on my life or our marrige. It bothers me a great deal, that's for sure, but if I must live with it the rest of my life, I can do so and still lead a fairly normal life. It's the younger people, like you and your husband that break my heart.

After reading your post last night I asked my wife to read it also. She got up from the computer wiping her eyes and shaking her hear. She said: "It tears at me because I know how it would have been if you had gotten it at that age". Stephanie, I'm not a martyr, but the main reason I'm involved in Peyronies Disease advocacy is because of young folks like the two of you and others that are forum members here. The medicial community in general thinks of Peyronies Disease as a disease occuring in older men. However, those of us who research Peyronies Disease know that it affects far too many younger men. It's a hideous disease that needs greater awareness within the medical community and the general population. That is the thrust of my efforts as a Peyronies Disease advocate.

Know that you are not alone in this fight. Stay active on the forum to learn about the disease, and new advances in treatments. Above all, support your husband and fight his condition as a team, as that can do more than anything else to ease the psychological side of the condition. If you wish to discuss anything with any forum member in private you can do so using the "private message" feature on the forum. Above all stay upbeat, progress is being made.

My Best,

Larry









Hello!  This is my first post here.  If it's not in the correct forum, I'm certain a good and kindly moderator will move it for me.  I have been exclusively dating a man for the past 11 months.  He has always had ED issues, but 1/2 a Viagra always did the trick.  About 2 months ago he started having painful erections and soon after I noticed something that felt like a very small pearl.  It's located at the base.  He went to the urologist and Peyronies Disease was diagnosed.  Now even the Viagra doesn't help (is that typical?)  He was told to take Vit E, which he did.  But then his feet started hurting badly.  He stopped the vitamin E and the pain went away. 

Unfortunately, the Peyronies Disease seems to be getting worse.  He now has a fairly significant dent near where the pearl thing is.  Plus sex seems more painful.  He doesn't say much, but I can tell he's hurting.  Until the Peyronies Disease came along our relationship has been very physically fullfilling for both of us.  I'm still very happy but I know he's worried that I will leave him over this, but that's not even a  consideration on my part, and I've told him so in the kindest and most gentle of terms.  He's just very concerned.  And I mean VERY concerned, which I guess is a very appropriate response. 

I guess my question here is what else can I do?  I'm so new to this...as is he.  Is slow and gentle the way to go?  What does he need most from me?  He has an appointment next week so we'll see what's what after that.  Any advice for a newbie would be very appreciated....thanks!





Apopka,

Welcome to the Forum and thanks so much for contributing to what makes this forum successful.  Women add a much needed perspective.

Your question is difficult because people differ so much.  The progression of the disease also runs very different courses with each patient.  The pain will subside although it may take time. 

From my view, there are 2 things you can do to help.  The easy one is gentle well lubricated sex.  Rough sex, which can just mean fast hard sex or anything that puts pressure on the penis in a bending or squeezing manner can aggravate the pain and the disease at this stage especially.  If he thinks you want "rough" he may endure the pain to try to do what he thinks you want.

The other thing is more difficult but I commend you for making an exceptionally good start.  It is caring for each other psychologically.  Some men appreciate a close quiet talk, some avoid it, but it helps.  Much of ED at this stage is not Peyronies Disease directly.  The age coupled with the extremely disturbing view of a penis that "can't be mine" is very distracting.  It is like trying to keep your mind on sex while the house is on fire.  At times I can now put Peyronies Disease/ED (from prostate surgery) issues out of my mind, but during sex the realization of the ability I have lost used to come  rushing in.  I have a very understanding committed wife of 38 years (since I was 18).  That coupled with my view of life has helped me to progress past the worst and enjoy physical intimacy.  Still, when the intimacy is over reality makes me stop and compare myself to how I used to be.  I still can't quite absorb the fact that I could be limited sexually.

Also get him to go to a good Peyronies Disease urologist that offers more than vitimin E at this stage.

I guess I would say to build his confidence, use a bit of careful humor when you feel it is appropriate, be careful not to make him feel he is cheating you.  Along with that you have to balance the fact that it is not just about him.  Your emotional welbeing may also need some care. 

Good luck and thanks for posting.




Thanks for the helpful words.  I realize that this is affecting him more on an emotional and psychological level than it is physically.  Of course, there is actual physical pain, but I know he's mentally worn out over this. What concens me is that he seems to be withdrawing from me.  We used to speak every night and we'd see each other a couple of times per week.  But now communication is less frequent and I haven't seen him in almost a week.  While this is not completely uncommon for our relationship, I am concerned.  I don't typically bring up the Peyronies Disease, but I have told him that I'm here for him in any form that he needs while he figures out what's going on physically.  I also said that my feelings for him do not start and end in his bed.  Perhaps he needs a little time and space to emotionally figure things out.  Finding the right balance between being supportive and being pushy is a challenge.  I'm guessing his reaction to all of this is typical?  I am anxious to see how his follow up at the urologist goes later this week.



Hi everyone. I have been away from the Peyronies Disease forums for several months, but it is good to be back now. Just registered on this one today.
I recently received notification from the other forum that I had a "private" message there. Since I cannot retrieve that one, I am wondering if anyone on here placed that, and would like me to answer. I know this is a long shot, but it seems to be the only way I can help whomever needed it. Sorry I could not get to you sooner.

For those who do not know, I have been involved in the Peyronies Disease fight for a few years. I was  dating a man who has been dealing with this disease for about 13 yrs. We got involved in this fight (Peyronies Disease)as a result of that, and my(secretly) looking for ways to find as much information as I could. He wouldn't talk, wouldn't tell me what he had, and I was left to my own devices to find out. It was up to me to tell him what I knew he had. Although it shocked him that I had done the research, and more so, that I didn't run the other way, he was greatly relieved. No more hiding, worrying or fear of opening himself up. Great news, we got happily married last Nov.
 Peyronies Disease will continue to be a part of our lives, forever! Since we have to deal with it, why not deal head on, be involved in the fight and keep looking for better ways to handle this. Women, this is your fight too. It sure is mine.





Hi all,  I have been watching this and other forums for awhile and took a break for a long time.   My husband has been suffering from this condition for the past 4 years of of our 6 year marriage.  He is so closed to any discussion of it and seems to have basically give up any hope on anything happening to reverse it.  Heck....there never has been any hope because his actions have only been to ignore the problem and hope it will go away which we all know is foolish and definately ineffective.   The problem is that he has also shut me out as well and I guess I am expected to just accept a life and marriage without any intimacy.   Just celebrated my 45th birthday yesterday and I just am not ready to be without any intimacy in my life.  We have been separated for awhile now but he still wants to be a part of my life.   I am so confused as to what part in this I should be playing.  I love him dearly but I cannot reach him and he will not reach out to others that could give him sound and effective consel regarding this.  I guess that since I cannot do this for him, that I just need to take care of me.  But I am left with the feeling of being alone, rejected, and terribly lonely.   Am not the kind of person to cheat on our marriage but I just don't know how to reach him to get him to understand how I am feeling.   Guess I just needed to vent a bit.   Glad this forum exists so that I could do that.  Blessings to you.


NY_Wife, you're right in expressing these frustrations and probably none of us here will have a simple answer for you. I have something to say and maybe it helps, or maybe it only frustrates you further, but it seems like you're looking for straight-up discussion so here it is.

You feel that your husband isn't actively doing anything about his condition and see that as "foolish" and "ineffective".  But that's also a pretty good description of most of the treatments being offerred today. Others may disagree but as I see it, a guy with Peyronie's Disease today has 3 choices.

1. Endure a very, very nasty surgery that in many cases fails and only makes things worse.

2. Fly around the country seeing Peyronie's specialists and trying tedious and unpleasant treatments and medications that as far as I can see, don't work.

3. Live with it until a better treatment comes along.

My choice at this point is #3 and it's not based on denial and negativity but on experience and extensive reading. Maybe your husband has arrived at the same place for the same reason, and doesn't appreciate the pressure to spend his time and money in an endless and pointless dance with urologists and insurance companies.

The situation isn't hopeless. There are a couple of new treatments in the works that might turn out to be effective. But they're not there, yet. 

I hope this doesn't sound harsh. What I'm trying to say is that talking about feelings and frustrations is beneficial, but pressure to "do something" when there's nothing usefull to do, is not.

Just my opinions, of course.










I understand what you are saying completely!!  And we are so totally not in a postion to be able to throw any kind of significant funds at a treatment that does not have anykind of good track record.  I guess that what I meant by him not doing anything for himself is in the line of opening up about his condition in the form of discussion with anyone if not me as his wife,  in order to treat his feelings of inadequacy.  The very few times that he has spoken to me about this he has stated that he feels like a freak, mutant, and other choice words that I would not care to share because they are just horrible.  He has such a low level of self esteem right now and I just cannot find a way to reach him to let him know how very much I love him and that this love is not based on what his penis looks like.  Lovemaking can take many different forms and is not limited to just intercourse but he refuses to even entertain options in any way to be intimate with me and that is what hurts.  He so very much needs to address these issues and I just know that if he would open up and communicate with others that are going through the same thing it would be beneficial.  I have tried so many times to put him in touch with people from this forum in the past but he will just not open up and right now I am at my wits end about it.  I have finally come to the conclusion that I can only take care of me at this point and I am starting to recognize symptoms of depression in me that I must address before it takes ahold of me in ways that would not help anyone.

I appreciate your frankness and honesty. For me beating around the bush is not helpful.  I know that your words are given in an effort to lend your experience and aid and I welcome it in any way you give it.   Thank you.








Ms NY Wife,
Us guys are so focused on our masculinity, our manhood that many, many men can not admit to, much less openly discuss this disease.  For lots of guys, it is a sign of weakness, a sign of failure and it makes him less of a man.  Not true, but men are wired strangely.  Also, your husband must feel like a failure to you too. Would counseling even be an option for him? or is he going to feel weak about that as well?  Please don't get me wrong, I am not saying he is weak, but frailties just aren't something men deal with very well.  And lets face it...we don't even like speaking to our own Dr's about our defective units, much less talking about the physical and psychological aspects with a therapist.     Good luck to both of you.  To some degree or another, we're all in this leaky boat together.  Could you get him to at least spend some time here...even anonomously?  Might help or at least make him feel less alone.  There is comfort in sharing with other men likewise afflicted.
   









Quote
I don’t want to divorce him , I don’t want to take a lover, I want my life back.

I am sorry I have not been on in the recent months to respond to your post. I am also sorry that more women do not utilize this forum to vent thier frustrations in the same way the men do. I hope you are still coming here, and getting help for you and your husband. The men here are some of the most compassionate and helpful men I have ever seen. They open themselves up to help everyone, and discuss as openly as possible to everyone in hopes of helping  all.  We can use it for te same thing. I do encourage you to continue posting, and hopefully your husband will join in as well. You are totally anonymous here.
In response to your post, no you are not being stupid! All you have done is vent, which is a good/healthy thing to do. This disease is  one that affects both parties of a marriage, not just the man. One thing though, you do not  get your life back exactly as it was before Peyronies Disease. Just as if you had a disease , of any kind, in your body, your husband would not have you in the same capacity that you were before. You go on from here, learning to make adjustments. The best thing that you and he can do for one another is to be honest with each other and find a solution that will work for your marriage. That means actually talking to, not at, each other. Communication about this, and everthing else is of key importance.
Taking a lover is not the answer. Neither is divorce. If you think both of you  feel destroyed now, do either of those things and you will know true pain. You can work thru this and be stronger for it.
If you wish to discuss more in private, I am available. Just leave me a private message, and I will respond, no matter how long it takes me. 
I dont mean for this to sound like a lecture, it isn't, but I have been there and know what doesn't work.
Again, I apologize for not responding to you before this.
I wish you happiness and patience.









Steve,
My other half is a contributing member here.  I thank God for this forum. Without our constant communication about this issue, no telling where we would be.  He always tells me the news, and conversations going on. In fact, I originally, several years ago, found the old forum and turned him on to it. That was a life changing moment in our relationship. Since that time there are no more secrets in our lives.
Men, dont want to talk because they feel their manhood is ruined. Women dont want to talk about it because they have no idea what to do. Both parties feel they are the only people on earth and cant talk with anyone, until someone comes along and lets them know they are not alone. I have found that once they know they are not alone, they become mouthpieces,and won't be stopped. Yippeee.
This is an awesome place to be for information!!

   







hi guys well where do i start..how about NY_wife is my wife and I'm the one that is hidding in a hole and not wanting to come out and face this i cannot believe this has happend to me i look at it and want to scream at the world'why me why me".
 
I cannot talk to anyone about it i have seen one doc about it and just left feeling like i have wasted my time and still feeling lost, i know i have a loving wife who know my problem but i look at her and cannot talk about it i feel sorry for her that she has a husband that cannot be a man the he wants to be for her, even typing this is hard will talk later









I'm mid-50s and have had Peyronies Disease for a couple of years. This forum is the one place where guys with Peyronies Disease are talking about it like grown-ups and exchanging useful information. You'll find out that there's more going on with regard to possible treatments than the typical urologist knows about. 

There's no pressure to post or say anything more about yourself than you want to - but I think you'll feel better being in on the discussion. I think it's a male thing - when there's a problem we want to talk about facts, and possible solutions, and things we can might be able to do about it. 

Just cruise around here and read stuff for a while, and as the questions form, ask away.  After a while you'll feel like maybe you're on a path to somewhere.




Hi everyone, It is me Susan again. I have been reading the posts here, and have been through all the same emotions. My husband has had Peyronies Disease since Dec. 2000. For the first year I cried a lot by my self. I thought about leaving my husband, although that is not what I really wanted. I think having a husband with Peyronies is like going through a death. It is like the death of the way your sex life use to be. I went through crying , anger, depression, and finally acceptance.I wish I could have just skipped to acceptance.
  I use to go on the BTC hotline all the time, and just read and read. My husband would not go on line or talk to me either. I just started to print out articles that fit our situation. I just laid them on the kitchen table and he would read them. He went through massive doses of Vit., the Verapamil injections, Viagra, Cialis, nothing worked.
    After two years of this we bought a VED and sex toys. I also wrote off line for a number of years to another Peyronies Disease wife. She gave me a lot of good advise. We bought the VED and it has put some normalcy back in our life. It cost us $500.00 plus, but worth the money to us. I got an E mail address for some sex-toys and we use them sometimes too. Never, never in my wildest dreams would I think I would buy sex toys, but I wasn't going to settle for a boring nothing sex life. We both wish that things were back to normal for us, but they are not, and probably never will be.
We have sex at least once ot twice a week, and that is good for me. We use the VED most of the time, and sometimes we go solo without it. Our kids are grown so, we can make love all over the house now, and we have tried most rooms. My favorite is when I get home from work and he has the fireplace on in the winter, a glass a wine out for me, and candles lit in the family room, with some music. It works for me there are all types of ways to be intimate, and we try everything we can. I must admit my favorite is the old VED. I love my husband. We will be married 22 years. We have accepted our situation and decided to make the best of it. There is more to our life than a penis, but I still love to make love to him. He has started to talk dirty to me again , I love that too. I am sorry if this is too graphic, but thought the truth might help some men and ladies. By the way I am a lady in every sense of the word, I am just a bit trashy with my husband only. I hope this helps someone.

                                                                                  Love to all Susan




I keep turning down my wife's advances without thinking then my first reaction is to get mad and block her out is this normal she must think i don't want her but i do so much,I think this disease is in the mind with me more then it is in my penis and whats worse i dont even know I'm doing it until she is crying


There is no doubt that this blocking you mention does frequently happen with many people but it certainly is not unavoidable.  In fact a man must learn to face this and avoid it or as you say, Peyronies Disease will ultimately be over shadowed by the psychological damage inflicted in your lives.

I suggest you come to very precise grips with why you would ever reject these advances.  It could be fear of performance, fear of rejection, avoidance of any disfigurement, etc.  Relax over dinner or kicked back in bed and discuss these issues.  At some point you have to trust her enough to know you are safe from judgement or rejection at her hands.  She has no doubt earned that.

If you got my private message to you, you will remember the value I placed on creativity and experimentation until you figure out what works.  Shutting down your sex drive, along with all the associated intimacy, will only rob the two of you.  Creativity, experimentation, and intimacy can truly give you back more than you lost.







I wish to take a moment and let all of you read a post that was made on another forum, sometime back, which is the most profound Peyronies Disease post I have ever read! To me, it epitomizes this fight, this disease, and the heartache we all experience. 
Of all the things we, as couples, have to deal with, reading of one woman's heartache, this expresses exactly what the male distance and anger do, not only to the relationship, but to the eventual emotional state of the wife.

I do have the permission of the person who posted this to give it to all of you.

"My story is not so different from yours. Our sex life had always been great up until the Peyronies Disease..but it wasn't the physical effects that caused the damage...it was what happened to the emotional side of our life.

We too had (and still have sometimes) that same type of disconnect. His anger and frustration was directed at me and a lot of hurtful things were said and done. I think that the anger and frustration just boils over at times, and since we are there we get it. Probably safer to take it out on us rather than outside where there are some nasty consequences.

I finally had to tell him that his anger, hatred, and frustration was destroying our life. In short do something.

The deepest pain was (and some times still is) the total disconnect the anger causes. In order to survive the hostility and hurtful words I had to detach emotionally so as not to get hurt anymore. To me that was far more devastating than the loss of the physical sex. Kinda like having a beloved partner become a room mate.

I always trusted (operative word) him to not hurt me. The effects of Peyronies Disease be and his actions betrayed that trust. So to open that channel again was frightening. Emotional beatings are the worst form of violence, the physical can heal, emotions are a whole different ball game because the destroy what we feel about ourselves.

Counselling helped, it gave me the ability to come out of the forrest and see the trees. For me it was the question of choices. I couldn't (and can't) change his choices, my choice is "can I or do I want to live with his choices and how do they effect me.can I live with it). All of it implies risk..is what we had (or have) work the emotional risk.

Rebuilding trust and reconnection is always the most difficult damage to repair. It can start in small ways, communication and honesty coming first. I had to flatly lay down ground rules that had nothing to do with sex. But had everything to do with what I could accept..and wouldn't. I cannot be the receptacle of his anger, and I can't allow him to use me as such. Love, and proximity is no excuse for any type of abuse verbal or otherwise.

It takes time and work, and a clear personal soul searching to decide if it is worth it. For me the answer was yes. I also had to get real honest with myself and try to find out why I jumped into the anger bag along with him and allowed him to do it...Suggestion..don't wait for the "couples"..seek some clarity for you too. Your answers will come and you can reconnect if both of you are willing."










I refer to the profound re-post by Caring of one womans story of dealing with the devastation brought on by Peyronies Disease to individuals and couples. Serious, sit-down-and-spill questions need to be asked and answered that may lend some insight to the phenomenon of men being knocked totally out of balance by this affliction. The psychological component of this thing affects men profoundly (as can be seen even by recent posts in other threads) and this in turn affects those around us. Why do men get so angry when this affliction strikes? Why do we close down communication to others? Peyronies Disease illicits behaviors in men that are equalled only by the most heinous, physically devastating diseases. These questions should be asked and answered in other threads, and I hope that subjects along this thought develop.
 
   Long ago and far, far away during my childhood there was a comic strip called Pogo. Pogo's most famous quote in print caused quite a stir and may apply somewhat to men and Peyronies Disease today...

    "We have met the enemy... and he is US."

   Lets identify the sources of our behaviors and let the healing begin.







To Angus,
      I agree with your analysis of the situation. Until my husband was willing to talk to me and try different approaches to our sex life we were no where. If you are not working together, then you are working against each other. I am going on vacation see everyone in 6 weeks.
                                                                                                                 Susan





Liam, I’m not sure you or any of the men here are ready for the ladies board! Women in general are not embarrassed nor timid when it comes to speaking their mind…. IMHO no topic is taboo, but that also flows over to the rest of the site as well. Trust me when I say I have been a very good girl in restraining myself with my postings in both areas. (pat’s myself on the back as I pinch a tush or two…)

Ahhhhh was that taunting you? Possibly but realize, we love our men and want to help, some men are willing to accept that some are not. BUT in general we have a kick butt (yup, I cleaned THAT one up too) attitude about Peyronies Disease and supporting one another in addition to supporting our men.

The ladies board is why I checked out this site and I will be forever grateful for it and Christine
!






posted this on the ladies only site and Zig encouraged me to post it here I hope that's O.K.

While I'm new here bare with me please, not sure sometimes if I'm using this forum correctly so I'm just going to dive in. Someone mentioned something in response to my introduction that I'd like to address[probably very casually] never the less. She said she couldn't understand why this condition is embarrassing to men. I think it's very important that we do understand why it is so embarrassing to them and to validate their feelings on this. Men are raised to believe their penises are an extension of their manhood and even their livelihood not only in todays society but through the ages so it becomes a very deep seated belief. And can be very difficult to overcome. Also when they do muster up the courage to go to a doctor for help they're not given much help because the medical community hasn't taken this issue seriously. They have extreme guilt and insecure fears that they may never be able to please a woman. The closest example for a woman I can think of is how we would feel if we lost a breast and there was nothing there but scars. Given those circumstances I would pray for a tender, loving, and understanding man in my life. Thanks for listening hope I didn't offend or alienate anyone.
 
  P.S. I would like to Thank My wonderful and adoring man Zigwyth for coming back into my life, you fill my life with so much joy and affection and bring me and my kids blessings everyday. Your Love Lady Lisa 


   







OCD,
My husband and I dated for 3 years before we got married, and we have only been married for a year.
He has had Peyronies Disease for about 14 yrs or so. During that dating time, when it came time for more intimacy, and it wasn't early in the dating, he never mentioned anything about it. At some point, I asked what had happened, and you would have thought I shot him or something. That was the ONE question he was more afraid of hearing, but for him to open up and tell me all about Peyronies Disease, no way, that wasn't going to happen.  He was terrified  that I would walk away once I knew he had Peyronies Disease. He had resigned himself to a life alone. Only he could tell you exactly how he felt.
He wouldnt talk, so I researched the subject, and confronted him with what I knew. What he hadn't taken into account was the fact that I had already fallen in love with him. The WHOLE person. You see, we formed a loving relationship before I even knew what he had. By that time, well, I wasn't going anywhere. Yes, we deal with Peyronies Disease in our lives everyday, as a couple, and we know there may be another episode at some point. If so, we'll deal with it. If we didn't have that loving bond though, all the good sex in the world wouldn't mean a thing. Peyronies Disease, yes, it sucks for us women too. The love is the thing that holds it all together. Peyronies Disease is NOT a big deal!!!




April 21 2008

--------------------------------------------------------------------------------
I just wanted to respond to Aldars question about how "new women" react to me with Peyronies...

I can recall my encounter with my current boyfriend when I first discovered he had peyronies.  At the time of intercourse, we had been dating, not in an official relationship and had yet to be intimate with one another. 

I, age 20 had been dating my current boyfriend, age 19 when we met in college this past year.  After going out on several dates and getting to know one another on a more personal level it was becoming inevitable that things might become physical.  At the time, I had no idea about his condition, yet looking back on the situation, he had dropped several hints.  I can recall him texting me after making out one night and telling me "theres something unique about me I think your going to find out soon." Clueless about the situation, I figured he was just alluding to the idea of him being 'larger than normal', being a common statement for boasting amongst college boys.  Playing along (so I thought) I urged him to let me in on his little secret, yet he persistently stated that I would find out on my own.  This confused me, but I thought nothing of it.

Fast-forwarding to 'the big night' I remember as we became closer to having sex, he became somewhat nervous.  I am not sure if the nervousness was due to possible embarassment or simply the fact that it was our first time being intimate with one another.  Perhaps it was a combination of both.  As the moment drew near, he lost his erection and became extremely apologetic and nervous.  At this time, however, I had NOT noticed 'his uniqueness' at all, I was simply excited to just be with him.  Assuming he was just nervous about being with me, I assured him that everything was fine-it was just nerves, and I was very excited to finally have sex with him.  After a few minutes of relaxation, he re-gained his erection and we proceeded to have intercourse. 

I did not notice any differences at the time, though his situation is far from average (he curves left and upwards).  I had honestly not noticed anything abnormal or different. However, I found sex to be more satisfying than that of my previous relationships, oddly enough. 

A few days later he brought up the text message that had confused me, by telling me that 'there was something unusual about him.'  I am not sure if this was awkward for him, but he opened the discussion quickly by typing 'Peyronies disease' in the search box online and simply stating that his penis was differently shaped.  Not knowing how to react, I didn't really comment to the situation.  Yet later I went and did some research on my own. 

At this point, we have been in a relationship for a couple months and enjoy a wonderful sex life.  For some reason, however, my boyfriend doesn't really open discussion about his situation.  Rather, he makes jokes about it or doesn't seem to be bothered by it at all.  I remember him saying once; "Its alot like college courses, the bigger the curve, the better." The one time we did discussed it, the only information he relayed to me was that sometimes its hard to take off a condom, his skin gets dry on one side, and that his previous girlfriend enjoyed their sex life also.  Personally, I haven't had any real challanges with the situation, other than some pain when in certain positions and it being tricky to achieve penetration sometimes. We try to make these instances positive, by using them as an incentitive to try new things or open lines of communication.  I think its great that he has a positive outlook on the situation, and after being in a relationship, I fully support him.
 
The only challanges I have personally found, are simply physical, not emotional.  I feel very fortunate for his and my own sake that he does not deal with serious emotional reprocussions because of his situation, and I applaud those who are dealing with the ongoing difficulties and challanges presented to them.  It was my intention to be only respectful in the submission of this comment, and I hope that anything I have said may only be constructive and helps.























































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