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Author Topic: Women Speak Out about Peyronie's Disease  (Read 142015 times)

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englishsyr

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Re: Women Speak Out about Peyronies Disease
« Reply #100 on: June 22, 2006, 04:52:36 PM »

has my wonderful wife (ha) has told you I'm looking into the VED machine and getting a price but like she said i do it in my time and do not rush anything to do with this damn it has taken me 4 years to talk about it lol
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ComeBacKid

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Morale Boost
« Reply #101 on: June 22, 2006, 05:35:38 PM »

I put off going tot he doctor or talking about this for 3 years and my condition just worsened.  Not talking about it or doing nothing simply will make you feel a lone and you have no shot at making your condition any better.  I think its time for us men to take a stand, stop hiding in the shadows, come out and address this issue.  Don't be ashamed of peyronies or not talk about it.  Accept it, deal with it, and attack it.  Lets make some noise and take some action instead of sitting around feeling sorry for ourselves!

ComeBackid
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Tim468

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Mr. Rogers once said...
« Reply #102 on: June 22, 2006, 06:54:14 PM »

"That which becomes mentionable, can become managable."

Fred Rogers was a wise man. This quote, referring to death, is appropos to Peyronies Disease.

I have had Peyronies Disease for many years, but have been fortunate enough to be able to acheive an erection and to have intercourse. But even though that is true, I always believed that bringing sex toys and the spirit of play into the bedroom was healthy and good.

It takes a bit of ego strength to use a large dildo with your wife, and to have her enjoy it! (Does she like this more than me??). But men have a tremendous problem remembering how much women love *them* as a whole, and not their parts.

Just my two cents worth.

Tim
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52, Peyronies Disease for 30 years, upward curve and some new lesions.

Jeanne

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Re: Women Speak Out about Peyronies Disease
« Reply #103 on: June 24, 2006, 08:06:15 PM »

My husband has recently diagnosed with Peyronies disease. I am a retired Physical therapist. Years ago I worked in a local hospital and one of the treatment protocols was ultra sound for the treatment of Peyronies. The proceedure was always administered by a male therapist. I am hoping that someone knows the treatment proceedure and can advise me of the parameters and the success of such treatment. Thanks, Jeanne
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ComeBacKid

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Ultrasound not effective in treatment of peyronies disease
« Reply #104 on: June 25, 2006, 12:15:59 AM »

Jeanne,

So far I know of absolutely no published studies that say ultrasound does anything positive for peyronies disease. 

The most effective proven method of treating peyronies besides surgery(which has many side effects) is probably IONO treatments in my opinion.  The most effective (by word of mouth) alternative treatment in my opinion is the VED.  The treatment that seems to work the most is ALC, mainly in stopping pain and inflammation.

ComeBackid
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Liam

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Ultrasound Therapy Link
« Reply #105 on: June 25, 2006, 09:19:29 AM »

Jeanne

Cajunot had a large post about ultrasound therapy that may answer your questions.  Here is a link.  Maybe we can get our friend from the bayous to add something.

http://www.peyroniesforum.net/index.php/topic,68.0.html
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englishsyr

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Re: Women Speak Out about Peyronies Disease
« Reply #106 on: June 27, 2006, 05:03:45 PM »

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
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Hawk

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Re: Englishsyr - Blocking out the spouse
« Reply #107 on: June 27, 2006, 05:20:49 PM »

English,

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.
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Hawk - Updated 10/27/18 - Peyronies Society Forums

Christine

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The Ladies Room
« Reply #108 on: July 06, 2006, 11:21:14 AM »

Hello all,

As some of you are aware this forum is always looking for ways to expand and grow and serve our members in a way that addresses the needs of everyone here.   In my search around the WWW and in looking at different websites that deal with Peyronies, and it's effects, one area has been obviously lacking and that area is one for women.   While it is true that you men are the directly affected gender, the women in your lives are affected in ways that can be equally as tramatic. 

In an effort to address this need, we have established a room entitled "The Ladies Room" where women can gather and share their experiences, expertise, ideas, and generally support each other in a private area.   This area is strictly for the female members of this forum and only registered female members will have access to it.  We of course will always allow posting from them in other areas and encourage them to do so.  However, this is a safe place to come and share their thoughts, feelings, fears, frustrations, or just generally vent where other women will be there to comfort, understand, share and support in any way possible.

As I have been able to see, this will be the only forum of it's kind out there and the hope is that as word gets out it will grow and prove to be a real blessing to those women that are stuggling and searching for support and understanding from others that share their pain.

So ladies, please take a minute, pop in and check out the board, say hello, pour yourself a cup of tea and relax with us for a while.    I look forward to seeing you there!!!
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Hawk

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Re: Christine - The Ladies Room
« Reply #109 on: July 06, 2006, 11:57:44 AM »

As she indicated in her previous post, Christine has stepped forward to tackle a significant undertaking.  In fact, she stepped forward with both the idea and the commitment to invest herself to make it work.  She will moderate and promote this board. Though it is a private area for the women, we are attempting to make at least the title and description visible to all so they consider the value and promote it's success.  ;D Presently all I can do is ask you to imagine a board below the "Off topic" area that women registered on this forum can see.  This will hopefully give those that support us, a way to support each other.  This can only result in a win/win outcome resulting in an even larger capacity to support those they love.

If you are a woman and you cannot see the "Ladies Room" notify Christine by Personal Message, Post, or by email: christine@PeyroniesSociety.org
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Prostatectomy 2004, radiation 2009, currently 68 yrs old - After pills, injections, VED - Dr Eid Titan 22cm 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Susan Wells

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Re: Women Speak Out about Peyronies Disease
« Reply #110 on: July 11, 2006, 10:38:06 PM »

Dear Chris and Hawk,
   I have posted on the new thread. Thanks Chris for undertaking this task. I hope we can get more women to post there. Hawk let me know how I can help.

                                                                                           Susan
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Caring

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Re: Women Speak Out about Peyronies Disease
« Reply #111 on: July 12, 2006, 01:06:48 AM »

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."
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Angus

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Anger source identification
« Reply #112 on: July 26, 2006, 10:18:59 PM »


    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.

     

     
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Susan Wells

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Re: Women Speak Out about Peyronies Disease
« Reply #113 on: July 30, 2006, 12:16:07 AM »

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
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Larry H

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Re: Angus Post
« Reply #114 on: July 30, 2006, 04:46:25 PM »

Angus:

Your parallel to men's behavior and the old Pogo saying is one that I've used several times, and is included in a web site page I'm working on covering "Awareness". It goes to the heart of the problems surrounding Peyronie's treatments.

The ladies are far better at standing up and fighting for a cause then we are, and and our lack of fight has been a problem for years. Perhaps the involvement of Susan and Christine, and all the other ladies on this forum will get the ball rolling. It's time that we stand up as men, come out of the closet, and declare that we have Peyronies Disease, we are fed up and are not going to take it anymore. A good swift kick from the ladies is just what we need.

I'll be getting into this under "Advocacy and Awareness" in the near future.

Larry
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Christine

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Re: Women Speak Out about Peyronies Disease
« Reply #115 on: July 30, 2006, 11:05:19 PM »

We will get our kicking boots out Larry.   Will try to be gentle.
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Liam

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General Discussion (in the Ladies Room)
« Reply #116 on: August 17, 2006, 06:19:28 PM »

Every time it comes up as an unread post, of course, I click on it.    DOH   :::ala Homer:::

 **** YOU MAY NOT ENTER THIS BOARD!!!!!!****

I'll never learn!  ;D

Liam
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BLBC

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The Ladies Room
« Reply #117 on: August 17, 2006, 06:35:18 PM »

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!
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Old Man

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Re: Language clean up
« Reply #118 on: August 17, 2006, 09:49:47 PM »

BLBC:

Some of us old timers are retired Navy guys (37 and 1/2 years active and reserve) and we know the language drill, so don't worry about your terms!!!!

Old Man
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Caring

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Re: Women Speak Out about Peyronies Disease
« Reply #119 on: August 18, 2006, 12:09:25 AM »

True True.
 I am very grateful that we have a women's only room.
We truly are here to learn and support our men, but am thankful we have a place for venting, and woman support.

Thankfully, my DH has curbed my typing tongue a few times or I may have reverted to merchant marine language in some of my responses occasionally. Dont really want to do that.
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Hawk

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Re: Language
« Reply #120 on: August 18, 2006, 12:33:02 AM »

I have no doubt after 26 years working in prison systems and 5 years as a street cop, I could even make some of you guys and gals blush.  I am not concerned with us being offended.  My concern is providing a forum where all people needing help feel comfortable in their desperate search for that help.  We may have many old Navy men and prison hacks here, but we also have pristine house wives desperate to help their 23 yr old husband with a confusing, embarrassing dilemma.  We have mothers showing this site to their sons.  Since toning language down does not offend us, it seems like the only compassionate thing to do so we don't offend the few.  Our goal is to include more, not less, to have a site that doctors will feel confident in referring patients and their partners.  Check the AU site or other similar sites.  While they deal with body parts and functions every day, and even though they too have worked in prisons and other unrefined settings, they display blunt honesty without displaying gratuitously vulgar dialog. 

A few words on the forum have auto censor turned on because we don't need them PERIOD.  Some don't because a patient/member has the right to vent out of frustration, but we should not take license to abuse that and casually saturate the forum with terms that are potentially offense to those different from us.  This should be a place where atheists, the devoutly religious, all races, heterosexuals, homosexuals, liberals, and, conservatives are not just allowed, but where they feel comfortable.

We have been successful because we have used good judgement here and considered others.  We are known in the Peyronies Disease community for running a professional site founded on the judgement of our members.  Because of that we have avoided censorship and also avoided the deterioration of the BTC.  Because of that, we have stood out from every Peyronies Disease site that ever went online.

We should always remember what brought us this far and be true to those principles.
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Liam

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General Discussion/Ladies Room
« Reply #121 on: August 18, 2006, 05:10:24 AM »

The reason I click on it is because I don't read the part that say Ladies Room  :). I am afraid to go in....VERY afraid  :o!

Seriously, I thank God for you ladies everyday.  I'm so happy y'all have a place to communicate with each other and also a place to communicate with us men.  Believe me, I have had some insights from the ladies that have helped me.

But, I will probably still click that link.   (Does someone have a Duff Beer they can pass me?    DOH!!! )
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zigwyth

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Re: Women Speak Out about Peyronies Disease
« Reply #122 on: August 18, 2006, 04:18:16 PM »

I would personally like to thank my new love(Lady Lisa) for coming into my life and proving that women can be ultra supportive and compassionate with us men who are afflicted with this Peyronies Disease. And a  resounding Thank you to all you other ladies here. O.K. I'm walking away, turning my back, now you ladies can start talking again. :D
Ziggy
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Lady Lisa

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Re: Women Speak Out about Peyronies Disease
« Reply #123 on: August 21, 2006, 07:08:26 PM »

I 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 :-*
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Blink

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Re: Women Speak Out about Peyronies Disease
« Reply #124 on: August 21, 2006, 08:32:43 PM »

Lady Lisa, thank you for your post. I believe you hit the nail on the head. I, myself thought of what it would be like to get into the dating scene again. I was horrified to think what would happen if the night was magical and then when it came time for romance, ...........  I'm not a vain man, but you are right when you say that men in general are penis oriented. My wife and I are going through a divorce after 29yrs of marriage. It was her idea. She said she was no longer happy, and needed to find herself. I can't help but to think my peyronies had something to do with it. I do not think that my wife is that shallow, but the reality of peyronies still has me thinking that. I try to look at the bright side of everything. Things could be a lot worse! At least I had the oppertunity to have children. I had a lot of good sex. There are people out there with much more dibilitating injuries and afflictions than mine. I thank God that at this stage of the game, all I have wrong with me is peyronies. I don't think your statements will alienate you from the guys, if it does, they are either in deep denial, or very shallow people.  Keep the Faith...Blink
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Angus

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Long Live Lady Lisa and Zigwith!
« Reply #125 on: August 21, 2006, 09:07:15 PM »


   
    Thank you both for sharing your love story and your thoughts! Thus is the stuff of which love is made!
   
    Three cheers for L.L. and Zig !!!

    Hip hip.......... HOORAY!
    Hip hip.......... HOORAY!
    Hip hip.......... HOORAY!

May you have
Walls for the wind
And a roof for the rain,
And drinks bedside the fire;
Laughter to cheer you,
And those you love near you,
And all that your heart may desire.


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zigwyth

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Re: Women Speak Out about Peyronies Disease
« Reply #126 on: August 22, 2006, 01:37:13 PM »

Thanks Blink and Angus for the positive and caring remarks. Thank you LadyLisa, and the other women that are here by our side. It means so much to us to have Brothers and Sisters in this battle. The emotional toll that this can have on the men as well as their women is something that's overwhelming and hard to explain to someone that doesn't have to deal with it. I myself can be in a very positive mood one day and the next day, let this completely bring my spirits down. I know for now, I don't have it nearly as bad as some of the men here have it and I will pray with all my strength for those men and a treatment for us one day. And as Blink always says" Keep the Faith".
Zigwyth
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ComeBacKid

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Lady Lisa,

Thank you for your compassionate post!  It boggles my mind that a female would not be able to understand why us men would be embarrased, depressed, angry, or just sad about this condition. The majority of women I know are EXTREMELY self conscious about their bodies, and if they had no nipple on one of their breasts, one was much bigger than the other, or one that bent 90 degrees one way, I'm sure they would be embarrased, I know many women who think they are fat and will not wear bikinis out of embarassment. Seems like a no brainer that a caring and compassionate woman should be able to understand that even men have insecurities and give us some compassion. For one to say they can't understand why a man with a severaly bent penis, erectile dysfunction, and other deformities would be embarrased in a modern day where self image is a HUGE part of the society we live in, along with the increasing shallowness and materialism in society, to me is very naive.  Heck some guys are embarrased because of their size when their penises are well within the average range, and they DON'T even have peyronies disease! 

ComeBackid
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IrishB OCD

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"Coming Out" to your girlfriend ;)
« Reply #128 on: November 05, 2006, 11:59:19 PM »

I had to put a little jest in with this post because my last few posts have been so dramatic.

I'm 19 years old and have never had my first kiss.  But it's not like it wasn't available, I just have broken up with every girlfriend I've ever had after the first date (so i guess they weren't girlfriends...) because I didn't want to show them my curved penis, so I broke up right away becuase I know I'd do it later anyway (ok this isn't totally true.  I didn't worry about this untill like freshman year of high school, before that I was just too shy to ask a girl out....cooties ;)  )

So now in two days i have the first second date of my life.  My best friend convinced me to stay with this one some how.  BUt knowing her...and knowing myself It'll probably only be like a week or maybe two till at least we hit like 2nd base (that's the base with the foreplay right?  Whatever, you know what I mean)  and for the first time in my life I'm going to actually tell her about it and go with it...so this is for the ladies (or younger men who go through this same situation with me).

What do I say?

How do I introduce it to her?  What would you wanna hear to prepare you as a woman, or guys what has and hasn't worked for you.  Any help would be pretty sweet.

Thanks
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ComeBacKid

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« Reply #129 on: November 06, 2006, 12:10:28 AM »

I can speak from experience having gone through the high school and college dating years and still being only 22(soon to be 23).  My friend, your moving to fast, foreplay on the second date?  Man you must have a lot of game dude.  I wouldn't say anything until you have a good trust with this girl and she is your actual "girlfriend," cause it sounds like right now you are only in the dating stage.  You need to take it easy man, try not to think about your penis so early on, I know this is hard to do.  You need to get to know this girl and then go from there.  I know I wouldn't recomend bringing this out on the second date, you may very well scare the girl off.  I do know however that the one girl I told about my peyronies didn't even care  at all.  I waited until I knew this girl for a year to inform her.  The biggest problem with telling a girl so soon is they think "disease," and think this means they can get it, hence you scare them off.  I think having peyronies will change your game plan around, if your one who wants to hook up really fast with a new girl, or go around and hook up with a lot of different girls, this will be tough to do.  You will have to find a nice decent girl, and get to know them first.  Then tell them very casually, maybe even make a joke out of it.  If you just had a 35 degree curve or less I'd tell you not to say anything at all, cause a lot of girls think some curve is just normal.  You said your curve is 80 degrees even after surgery?  Did your doctor even say you could have sexual contact or masterbation, let alone a rough handjob by a girl?  Weren't you the one I just advised to take time off sexually and let your penis heal before you do anything?  I think first things first man, you have to let your penis heal, if this means no sexual contact for awhile so be it, you can't risk rupturing more sutures or causing more damage or your curve may get worse my friend.  Let it heal, date the girl, but take it slow, don't go for sex so soon, wait it out, maybe you won't even like this girl once you get to know her anyway...

ComeBackid
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IrishB OCD

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RE: OCDirish
« Reply #130 on: November 06, 2006, 12:17:53 AM »

Yah i know.  Actually I was planning on not "recieving" anything.  And no this probably won't happen on the second date, but I just want to know for when it does come up eventually.  I don't know how long that'll be but we've known each other for a little while before we started dating so it's not like we're strangers.  But per your advice actually I wasn't gonna recieve anything as I said, but I wouldn't be against going to that next level, and just having it be all abotu her even this week, but It will probably be later...but to be honest that's up to when she's ready...I already am.

I just want to be ready and knowing what I'm gonna say before the moment arises.
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« Reply #131 on: November 06, 2006, 06:50:43 AM »

I almost moved the last three posts to "psychological aspects".  But, I think Irish was asking some of the ladies for advice on how to tell a girlfriend about Peyronies Disease.

Any opinions from the ladies (loaded question I'm sure) ;).  Please be honest.
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IrishB OCD

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Re: Women Speak Out about Peyronie's Disease
« Reply #132 on: November 06, 2006, 02:20:38 PM »

Hit the nail on the head Liam.  I PMed Christine and she recomended I posted here to get a response from the ladies.
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Re: OCDIrish
« Reply #133 on: November 06, 2006, 03:11:15 PM »

OCD,

I hope I gave you some good advice, if you'd like some ideas on how to handle more personal situations feel free to PM me and I'll tell you some more personal stories.  I thought you were looking for both female and male responses, particularly guys who are in a similar situation as you.  I logically concluded that after reading your post:

"so this is for the ladies (or younger men who go through this same situation with me).

What do I say"

But again if you need more personal advice shoot me a pm and I'd be more than happy to share my experiences.

ComeBackid
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?
« Reply #134 on: November 06, 2006, 04:09:10 PM »

Nothing quite so beautiful as a relationship built on a total crock of BS.

It would be nice if instead of guys giving a guy's view of what women want, if some women would actually speak for themselves with some honest, blunt input since this is their thread for communication with us.
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Christine

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Re: Women Speak Out about Peyronie's Disease
« Reply #135 on: November 06, 2006, 06:20:55 PM »

ocdirishboy,

I will be happy to give you my opinion but it may not be what you want to hear.  I know this may sound like old school but the fact of the matter is that in my opinion, sex should not be a consideration in the beginning of a relationship.  With or without Peyronies Disease. It is a far to important and sensitive activity to be introduced until the couple is able to establish a sense of understanding with each other and have formed a degree of trust and committment to the relationship.  It is a matter of respect for both of you.  I know that in this day and age and with your age range, sex is something that if you do not engage within the first 2-5 dates, you may consider yourself a loser.  But it is not so.   With all the emotions that come into play with taking that step, you should KNOW that the physical condition of your penis will not be the priority.  If it is, then one should really take a look at the relationship itself and consider if it is really worth it.

As far as how Peyronies Disease is explained....., well if I were the one on the other hand getting the news, I would really appreciate the honesty and understanding of the limitations it has.   That way I would know up front if certain things, (ie positions, ED, premature ejaculation, etc) are an issue.   I would not worry about the term disease.  If explained throughly, it will be quite aware that it is not something that is contagious. Besides, what are women going to catch?  We don't have a penis to start to deform.  If the word disease is concerning you, then don't use it.  Call it a condition, and just refer to it as Peryonies.   

However, back to my first point.  I would first do whatever you can to offset the deformity with other methods such as a VED.  If you are in the early stages, perhaps you will be one of the lucky ones and able to correct for the most part what is wrong.   In establishing a relationship, I would say do that first.  ESTABLISH A RELATIONSHIP of value and then no matter what the case, if the woman truly cares and loves you, it will not matter if your penis has a curve or dent.  Honesty is the best policy in all cases, but you do not have to and should not lay all of your cards on the table at once.

There ya go.  Like it or not, that is my opinion and I am sticking to it.   I am sure that there will be other responses that may be more helpful to you in this regard.   I know that these guys have been this road before and will offer some other suggestions on how to give the news to the other half.

Blessings to you and good luck.

Christine.
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Caring

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Re: Third date....Rico
« Reply #136 on: November 06, 2006, 09:48:23 PM »

Be ready, women are third date...they all have...

Rico,
What planet are you on?? Not every woman has black undie garments and are panting to have some guy maul them on the 2nd, 3rd or even 7th date. Granted,some girls will lay down for anything, but is that what you REALLY want for a lasting relationship?
You know, you aren't talking to a locker room full of guys here, please show some respect for us all.
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Tim468

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Re: Women Speak Out about Peyronie's Disease
« Reply #137 on: November 06, 2006, 10:09:09 PM »

OCD...

Your posts have a sort of rambling quality to them that reflects perfectly the confusion it seems that you are feeling. If you spoke to a woman on a first or second date the way that you write here - well , good luck.

Here is my advice. Slow down. Take the time to do what you need to do in your life. If you need to type slower to make you points better here, do it. If you need to not rush ahead (or away) with women, then slow down.

Be honest. Practice fearless honesty in all areas of your life. This is not so easy. It is often easier to lie, or to BS - but in the end, honesty presented slowly and thoughtfully will do you well in situations where you need to be that way.

Were I on a date that suggested that soon it might become more physical, I would - oh yeah - slow down! And then, I would try honesty. I would say "I am really uncertain and nervous about getting physical with you" - I would say it because it is the truth. You could say "I know lots of guys worry about their penis, but I actually had a problem - I guess I still have it - and it makes me really nervous about rejection". You could say that because it would be the truth.

Imagine saying that to a grinning drunken girl you barely know, laying on your bed waiting in her black panties (s) for you to jump her bones. Sounds scary? It ought to. It sounds horrible to me.

Now imagine saying it to a good looking (and sober) woman, gazing at you with affection and a little lust, someone you know well, who thinks that you are pretty cool. Imagine sitting facing each other on your couch, knowing how the other person thinks and feels because you took the time to find out. Imagine knowing that she cares about YOU. As far as I am concerned, such a converstaion or statement as I suggested above, sounds a lot safer and better with a woman you know than someone you are trying to "jump".

So go slowly, take your time to get to know women, and be honest. It may not be the fastest way to get laid, but it sure makes for a healthier and happier life (and it still lets you have (even better) sex!).

Tim
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Christine

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Re: Women Speak Out about Peyronie's Disease
« Reply #138 on: November 06, 2006, 10:55:30 PM »

Well put Tim!!    If you are looking to estabish a long lasting and loving relationship with a woman, the best way it to get close to her heart and mind first.  If you are just looking for cheap sex with someone you not only don't know well but probably does not care all that much about you, well it is a dangerous game that you are playing there and will lead you to nothing but heartache if not a whole lot worse. 

Give it some thought.  You are really young and have the time ahead of you.   Don't waste it on something that is not going to uplift you in anyway but will only hurt you in the end.

Listen to those that have been there and back again and learn from our mistakes.     Just a suggestion.

Blessings,  Christine
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Re: Women Speak Out about Peyronie's Disease
« Reply #139 on: November 07, 2006, 02:18:52 AM »

I read a lot of things on this forum, and rarely do any of them get my hackles up as the posts about black panties and bras did. I notice now, that that post is edited or missing, but was not edited before lots of us read it.
If I was offended, so will others be, and this forum needs all the women it can get coming here for help. If we find that men are bashing women, and making statements that we are to be used and degraded, then no new women will come, and those we do have will stop responding or coming here at all. YES, it pi$$ed me off!!
Freedom to say what you wish about yourselves,  your circumstances and your penises only helps us (women) better understand what you guys are going thru. When someone, male or female asks for advice, then we all expect to have that assistance given without degrading anyone! You guys want cheap locker room talk, then keep it in PM's.
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IrishB OCD

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Misdirected Conversation
« Reply #140 on: November 07, 2006, 02:46:46 AM »

Hey Guys I'm so sorry.

I didn't mean to start any kind of controversy with this topic, especially one that degraded women.  I especially do not want to offend any of the women who understand and care about this condition enough to come visit this forum and help us, and their partners, out.  Nor did I mean to bring up a discussion over the appropriate time to move to the next level with a significant other, however that was a nice additive to this discussion.  It is nice to hear the opinion of others with/concerned about this condition.

The main thing I was hoping to get out of this, and that I thought others would be interested in, was opinions from women as to what would help ease them into understanding this condition, and stories from men who have experienced this situation: what was has and has not worked for them.

It's the one thing that I have found this forum to be short of since such a large percentage of the men here are older (not old, just older than dating age) and married.  A lot of us do not have an amazing understanding woman who was with us before and after the condition to go through it with us, and to understand how we feel (mine's congenital I don't even know myself before the condition lol.)  And I'm not trying to get others to feel sorry for me or others, just want to explain my concern for this topic.

As always thanks to everyone.

OCDirish
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Old Man

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Re: Old Men Speak out about dating/sex early
« Reply #141 on: November 07, 2006, 09:09:04 AM »

ocdirishboy:

I AM OLD! Seventy seven plus and counting on many more. Having been through the age that you now are experiencing and had a lot of one night stands, I know somewhat of your mindset. At that age, you are interested in only one thing - sex and/or the ability to "conquer" the next date. I am here to tell you that it is not very healthy or wise to persue that course of action in determining where you want to go with a relationship. Keeping one's chastity until they are married is one virtue that I wish that I had done in my life. It has cost me dearly in the long run and we will not go there.

The old adage "been there and done that" is very true. It only states that experience is the best teacher. Now that you have said your piece, gotten feedback, and much needed advice, what are you going to do about it?

There are many of us on this forum that have experience far beyond your years, and I am not belittling you for this, but you need to heed our advice and observe our experience for what it is worth.

Now having said that, let us know if there is anything that we can do to help you. We are all willing, ready and for the most part able to assist you with any problem that arises for you.

Good luck to you and take care.

Sincerely, Old Man
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Caring

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Re: Dating with Peyronies Disease
« Reply #142 on: November 07, 2006, 10:33:28 PM »

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!!!
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« Reply #143 on: November 08, 2006, 06:32:04 AM »

So true, Caring.  If Peyronies Disease is important enough to scare someone away, she is not the right woman.  That fact would have shown up later in the relationship due to some other situation even without Peyronies Disease.  Love and commitment put every problem in perspective.

I always gain such insights when the ladies get going here.  :)

Liam
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Re: Women (don't) Speak Out about Peyronie's Disease (until it's too late)
« Reply #144 on: January 06, 2007, 02:07:23 PM »

Hello all, I'm a new member and this is my first posting so I probably have all the protocol wrong.
Briefly my story is this.
I developed peyronies about 6 years ago, I'm now 65 my wife of 15 years is 45.
When it first became appeared I was scared and embarrassed but we seemed to get by without penetrative sex which was at the time too painful.
After it stabilized at about 75 degrees upwards we could manage sex but not very often and because of the embarrassment and feeling of inadequacy on my behalf we didn't discuss it, also we seemed to have a happy and contented relationship (we have two kids 12 & 13). A year ago it became apparent that my wife was really feeling the loss of intimacy so I became pro-active and bought some 'toys' which after her initial shocked rejection seem to improve both the quality and frequency of our relations.
However things slowed down again because she was less and less keen. Then, bang, after I came back from a trip and was really feeling motivated we made love but as if something snapped in her mind she became upset. The following day we had a discussion and out it all came. This wasn't the man she had married, she didn't love me in the same way any more, had been thinking of leaving me etc. and peyronies is the major cause After a long and painful discussion she agreed to stay but with no sex.
This was 4 months ago and since then I've tried everything to woo her back, get her to join me in counselling etc but without success.
Now after a dreadful Christmas when she said she wanted to leave with the kids and start a new life abroad, I've ended up on antidepressants, Valium etc and am really desperate on what to do next.
After reading all the postings about understanding women I'm sorry to have another side of the story. By the way I have introduced her to the site ans suggested she joins the womens forum but she is basically not interested and wants out.

Any suggestions would be welcome, thanks for being there.

Hugo M

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swimfly

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Re: Women Speak Out about Peyronie's Disease
« Reply #145 on: January 06, 2007, 02:55:28 PM »

Gee Hugo,

I am sooo sorry you are facing such a traumatic set of events and challenges.
Without speaking for other women, I'm certain there is a whole lot more to the story than she's letting on. I supppose there are women who would run rather than accept but, I have not met one yet. Not personally anyway and not in here. If I had to guess, it's the age difference and mortality of that difference that hit her harder than a single physical challenge. I hope things do work out
for you and your family.

Best wishes,  Swim


PS: It would be from my cold lifeless hands that my kids would ever be moved "abroad"!!!! OOPS, sorry, lost it there for a second. I don't know the situation. I really hope for their's and YOUR sake, that it does not happen. Kids are so in need of both parents at 12 and 13.
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Tim468

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Hugo's story
« Reply #146 on: January 06, 2007, 04:33:34 PM »

Dear Hugo,

I am glad you are here. It sounds like you have been through the wringer.

You asked for suggestions so here they come.

First, you can save your marriage but may not be able to. But it is a fact that for many men in your shoes they are simply in a total state of shock, and because they have just been slammed with a lot of bad news, are convinced they have to change to "win her back" (or in your words to woo her back). This means that they become conciliatory and willing to make changes. That is all fine and dandy when it comes to a relationship - but it does not work when it comes to fatherhood.

You have a right to a life that includes your children. Trust me when I say that arginine, pentox, the VED and/or surgery will still be available to you in 2 years. But if your kids are overseas for 6 months (because you agreed to be nice and to give her her way and to hope that she saw how great you were and came  back) and she files for permanent custody - she will get it. And you will get hosed financially because you will still have to support the kids.

You have the right - and if you enjoy your parenthood and your children need you, you have the duty - to tell her that you understand that it would be nice to find herself overseas, but that the children have a home right now and that they will stay there.

When my ex-wife fell in love with someone else, I was blessed to get good advice. My therapist said "That is your home too. You have the right to live there, as do your children. Do not move out to make it more comfortable for her in the mistaken impression that it will save your marriage. You can tell her the following: 'This is my home and this is the children's home. If you feel the need to be with someone else, I would like to invite you to move out. We will stay here and leave the light on for you, with two caveats; don't put it in my face, and the light will not stay on forever'. You have the right to say that to her, and you do not have to give up your home or your children because of what she wants to do."

Hugo, that was good advice. I am still in my home, and my children now live with me 50% of the time, and with their mother 50% of the time. My remaining in the home (if I had moved out, she would have had to sell it) allowed for more stability in my kid's life, than if they had been uprooted from their home and into two new apartments. It also allowed me to maintain a great deal more mental health than if I had been faced with the (unfair) anguish of moving because of her choices. If she had entertained the notion of moving overseas, I would have been in court the next day.

Hugo, it sounds to me like your wife is doing more than writing a red line through a few lines of the script - it sounds like she is throwing the whole script out. You Peyronie's Disease (Peyronies Disease) may have crippled your ability to communicate in a healthy way, and that may have harmed your marriage. But, IMHO, it is more likely that you and she brought to the table the skills that you had. Peyronies Disease is a challenge - but it is more likely just one of many that your marriage (like any) faced. If she is blaming all of her feelings on your Peyronies Disease, she is dodging responsibility for her behavior in the marriage - it sounds to me like she just nailed you with a left hook. You are not to blame - nor is your Peyronies Disease - for what is happening. She gets to make her own choices in life as we all do. If she is chosing to leave you and says it is because of Peyronies Disease, she is blaming you for her own behavior - and that is nuts.

It's nuts.

My hunch - based unscientifically on my own experiences - is that you were getting closer to making her take responsibility for her behavior in the relationship. I recall how devastated I was - TOTALLY devastated - when my ex emailed me that she had never really loved me ever since she found out I had a low sperm count (this is when we were in the middle of the beginning of the end...). My therapist pointed out how I had refused to take responsibility for her bahvior - but made her own it, and she "counterpunched" in his words. The he said: "If you believe that the several million cells that make up the differences in your sperm count, out of the billions and billions and billions of cells that make up who you are, define your lovability as a human being, the you're only a two dimensional man. I have appointments for two dimensional men on Tuesdays - want me to pencil you in?"

All of us are more than our penises. Hell - you have one that works and that could probably be made better with surgery or medications and the VED, which is more than some of us have. But your wife is somewhere far ahead of you, and it is my belief that she went there a long time ago, on her own. Please do not abrogate your duty as a father because of shame or sadness or in the mistaken belief that you can woo her back by being open to anything she suggests (like taking the kids overseas!). In addition to anti-depressants, I would strongly suggest seeing a therapist who will be able to guide you to making good choices in the tough days ahead. I will pray for you to find your way through this, and hope that you and your wife can find a way to survive together.

Tim
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Christine

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Re: Women Speak Out about Peyronie's Disease
« Reply #147 on: January 06, 2007, 11:45:57 PM »

Hugo,

Sounds like Tim just gave you a mouthful of kind, sound, and very good advice.  As a woman, and a wife of a man who is refusing to address his condition or the state of our marriage, I can say that in my opinion she is quite a fool for throwing in the towel on a loving relationship with a man who want to give his all to it.  It would be very easy for me to give up completely on my marriage because of what Peyronies has done to it but I won't.   Please consider heavily your decision to just let her have her own way, not only for your sake but for the sake of your children.  Tim makes very good points in that regard.

I am sure that there are two sides to the story here and it is possible that there are more issues in this than your Peyronies but for the lack of knowledge of those issues it is hard to make any sound judgement on the state of your marriage.

I am tired and I don't want to ramble.  But I do want you to know that your are in the best place here at this forum for support and information.  Many of the gentlemen here have been where you are and will be here to help you work through these feelings.  Please don't give up.  I would also suggest that you seek the counsel of a good therapist to help you face to face.  With the right person, it can be an invaluable gift.   

I will keep you in prayer and hope that you continue to open up to us here and use us in the meantime as a sounding board.  It will help and in turn, your growth will help others.

Blessings to you,

Chris
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Re: Women Speak Out about Peyronie's Disease
« Reply #148 on: January 07, 2007, 04:56:40 PM »

Thanks to you all, Swim, Tim and Chris.
It is certainly a help to know that you are all out there, understand what it's like and have been through it too.
Of course there are other issues but honestly after 15 years together I thought we were in really good shape until this thing exploded and it all came out.  Every time we discuss it it always comes down to Peyronies Disease in the end.
The idea of therapy is great, this is my second marriage, hence the age difference, I went through it with my first wife and as a result we are still good friends and have family reunions with her husband, my wife, our two grownup kids, grand kids etc.
In the current crisis I've been pushing for it since the whole thing started but up to now she has always refused. However I've just gone ahead and booked a first appointment for this week and told her that I'd really like her to come. Judging by her reaction, when I told her, I think she will which will be a really positive step so keep your fingers crossed.
I'm on the other side of the world on a business trip for a couple of days so I'll post something next week.
Hugo
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Susan Wells

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Re: Women Speak Out about Peyronie's Disease
« Reply #149 on: January 21, 2007, 11:07:22 PM »

Hello, everyone, I haven't posted since July.I have been on a roller coaster. We got back from our vacation in Aug., and my Mom who is 83 has been very ill. My sister and I have become her caretakers. She has been admitted to the hospital 5 times since Aug. We have been in the process of figuring out the medicare system and what services she can get. This has not been easy as our ideas of how to best help Mom are not always the same. Caring and doing everything for an elderly parent has put a new perspective to my life and put Peyronies and other such aliments in their place. She has a laundry list of aliments and disorders so we are at one doctor office or the other almost every week.
     I noticed that a subject seems to be lacking on this forum. I have avoided  it because of maybe offending someone, or maybe I wanted to be politically correct. I did not tell all of you what was the major factor which turned me around when I felt like I could not deal with his isolation or Peyronies. Where is God on this forum?? I hadn't gone to church in maybe 10 years when my husband got Peyronies. I Tired dealing with it myself, then doctors and more treatments, then more doctors, then therapy for me. Then I decided before I was about to run away and leave my husband and my life for I don't know what, I decided to go to church. It did not exactly happen over night. I was driving to work one morning planning my escape from my whole life when I happened on a radio preacher named Greg Laurie. I felt like he was talking to me. I had tried to fix everything in my lfe and my life was a mess. I hated everything and everyone, I just wanted to leave. I cried all the way to work. I decided to give God a try and he has been walking with me ever since.  Life as I have learned is not designed to be a paradise and if you are looking for one you will never find it. None of us are designed to withstand all that life can dish out to us alone. We need a God to lean on and to turn all our troubles over to. We are just passing through this world and our stay is just a brief moment in time. We see ourselves more important than we really are. I was baptized in the Pacific Ocean in Aug. 2004.I am not some kind of bible thumping Jesus freak, but I take my conversion seriously because, although, my life is far from perfect, I am able to cope with it all and still feel joy and have a feeling of contentment. My husband's favorite saying is happiness is not getting what you don't have, but being happy with what you do have. What I have is a pretty good husband who happens to have Peyronies, and some other maladies besides. Somewhere in all this pain I found acceptance of my situation. I continue to pray and ask for guidance and strenght in all my problems. One of Pastor Greg's favorite saying is, "That there are no atheist in a foxhole."  We are all looking for something I believe, and I found it in God. Maybe you will too.

                                                 Love to all Susan
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