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Author Topic: Women Speak Out about Peyronie's Disease  (Read 135878 times)

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Blondeguy

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Re: Women Speak Out about Peyronies Disease
« Reply #50 on: January 10, 2006, 09:01:24 PM »

Wow Susan! I'm impressed. I think you ladies here are wonderful and I hope your efforts to get Oprah's attention work out. It's amazing to me how few people have even heard of Peyronie's Disease. Bless you!
Blonde
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Susan Wells

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Re: Women Speak Out about Peyronies Disease
« Reply #51 on: January 15, 2006, 06:44:59 PM »

Hi everyone,
     There must be a million or so Oprah web sites, finally after searching a bunch of them I found Oprah.com. I think that is her main web site. They will no longer accept regular mail is what I read. They had an E-mail section to submit ideas for new shows, but they had such limited space. I had no room to type my letter over again and since I do not like to do things twice, I told them a little about what I was trying to do and asked for an address to mail my letter. I may never hear from them. I did not tell them the name of the disease, but told them millions of men had it, but few people knew about it. I hope that would get someone's interest. I also told them I was not talking about ED as that has been run into the ground.
Any ideas or suggestions on what to do next are welcomed.

                                                            As Always Susan
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lost2

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Re: Women Speak Out about Peyronies Disease
« Reply #52 on: January 16, 2006, 04:52:24 AM »

Hi susan    Great job on your letter to Opra. Just an idea, but maybe you should mail or e-mail  the letter to Dr phil  or his wife asking for help getting the letter to opra.  They both seem like caring people and if they read your letter, I'm sure they would help in some way or maybe even want to do a show on Peyronies Disease themselves. This disease has not been exploited at all for its show value and they are for sure looking for fresh topics to improve ratings. They could break the "Peyronies Disease secret" to the world.  Also if you record or t-vo the credits after the shows you can get the names of their producers or their assistants, then just call the studio and ask for them by name, who knows?  Anyway, just a thought and again a fantastic letter.   Thanks,   Lost2
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Susan Wells

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Re: Women Speak Out about Peyronies Disease
« Reply #53 on: January 16, 2006, 06:12:26 PM »

To Lost2,
      Thanks for the idea about Dr. Phil. I do have t-vo, not that I know how to work it. I leave for work every day at 7:00 a.m. and return home about 5:30. My  husband is now retired, but does not support me in my efforts because he has basically given up. If I asked my husband to help, he won't, he will just tell me I am wasting my time. In fact, he just walked in a second ago and he wanted to know who I was writing, and I told him I belong to a Peyronies Forum, and he just shook his head and walked off. If anyone can get me any addresses I will mail my letter off to who ever I can get. I got an Email from Oprah's staff and it said they got my Email, but could not guarantee that they would respond to it. That is where it stands for now.
I am coming into a busy period at work so I may not be able to do much more if I can't get addresses. If anyone has time to pursue this that would be great.

                                                                   Thanks to all
                                                                    Susan
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Larry H

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Re: Reply to Susan - Larry
« Reply #54 on: January 16, 2006, 06:49:39 PM »

Susan,

You are doing a wonderful job, and I am going to get addresses and support your efforts with follow-ups. I to am also coming into a period of heavy business activity with trips starting the first of the week to the west coast and returning 2-2-06. Before I leave I'm going to try to get as much done on this as possible. Some things may have to wait until I return, but what's another two weeks since people have been hiding from this issue for 300 years or more.

You are a dear lady, and you warm my heart with your efforts.

My Very Best,

Larry
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dcaptain

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Re: Women Speak Out about Peyronies Disease
« Reply #55 on: January 17, 2006, 12:33:38 AM »

I just was looking for Oprah's address in an effort to help, but instead came across plans for an existing Oprah show where perhaps Peyronies Disease could be brough into the conversation:

https://www.oprah.com/plugger/templates/BeOnTheShow.jhtml?action=respond&plugId=200300001

They would likely have to expand the topic to fit Peyronies Disease into the discussion, but if they weren't willing to have a show devoted to Peyronies Disease, this might be something to consider.  It could be a foot in the door, as they say. 
 
Just adding to the discussion. 
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Susan Wells

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Re: Women Speak Out about Peyronies Disease
« Reply #56 on: March 03, 2006, 11:26:03 PM »

Dear dcaptain,
     I saw your post about the Oprah web site and I pulled up the site. I think this would be a good place to post my letter, but it may not all fit. Does anyone know how to drag it over on the web site listed in dcaptain's post and modify it to fit?. If you do please help me post my letter there. I think it said you could have 2,500 words. I don't know how many words my letter is, I haven't counted it yet. Anyway I am going to take another look at the site. If there are any computer Techie poeple out there I could use your help or suggestions.
                 
                                                                            Thanks all
                                                                             Susan
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apopka

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Re: Women Speak Out about Peyronies Disease
« Reply #57 on: March 16, 2006, 10:40:40 PM »

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!
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Hawk

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Re: Apopka - "What else can I do"
« Reply #58 on: March 17, 2006, 09:09:50 PM »

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. 

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kbmw

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Re: Women Speak Out about Peyronies Disease
« Reply #59 on: March 18, 2006, 03:53:53 PM »

For VJS when you get here.

Hi VJS, I haven’t been here for a few months but I am an old hand at this. I know I speak for everyone to say you are welcome to be here.

First I don’t think the Uro that you are using knows much about Peyronies Disease. This stuff has sudden onset with sometimes radical symptoms.  That was my experience. You did not mention what the symptoms are that your husband is experiencing so I will make some general comments. One, get another uro. Two, if there is pain, wait. It is likely to go away. Three if there is a bend that that is minor and doesn’t interfere with intercourse, consider yourself lucky and just live with it. Finally, once you get recommendations from the Doctor(s) for treatment, reread everything here and make an informed decision. This thread contains more information than most Doctors have.
Good luck.
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Larry H

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Re: Reply to Apopka
« Reply #60 on: March 21, 2006, 10:51:15 AM »

Apopka,

After reading the reply that Hawk sent you I can't really add anything else of value. I would say, and I've stated this many times in the past, that the greatest resource a Peyronies Disease patient can have is a loving and understanding partner in his fight with Peyronie's. This disease attacks a mans manhood, and no matter how mentally strong he may be, no matter how strong the marrage or relationship may be, we all have our periods of negative thoughts and doubts. What he needs most from you is a constant reminder of your support and love, and your desire to be a partner in his fight with Peyronies Disease.

From what I read in your post, that should be no problem for you.

My Best,

Larry
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apopka

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Thanks for the input.
« Reply #61 on: March 21, 2006, 11:21:31 AM »

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.
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Caring

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Re: Women Speak Out about Peyronies Disease
« Reply #62 on: March 22, 2006, 08:45:32 PM »

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.
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Hawk

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Re: Women Speak Out about Peyronies Disease
« Reply #63 on: March 22, 2006, 10:17:24 PM »

Caring,

Welcome to the forum and thanks for the post and the interesting background.  From your background, I would say you have a lot of perspective to add to the forum.

On the subject of "private message", I sent you a private message on this forum.  I just wanted to make sure you were not confusing my message with some other message.

Thanks again

Hawk
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kitty

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Re: Women Speak Out about Peyronies Disease
« Reply #64 on: April 28, 2006, 01:14:55 PM »

My first message to this forum, sorry you will probably hate me, I am ready to give up.I am in my late 40, with a husband of 20 years. About a 5 years ago he found about having Peyronies Disease. It did not bother me at first, sex never was my first priority in life, but to live without it completely? He is trying his best, but this is not good enough for me, everything wrong, the size, the quality etc. I might agree to have  sex 2 times in year, but i want it normal, as it used to be.He want us to talk about it, and what I am going to tell him? I can not bring myself to tell that everything changed, and he just kidding himself. I dont want any alternatives such as an oral sex. Together yes, not instead. So I am stuck. I dont want to divorse him , I dont want to take a lover, I want my life back. Stupid, probably, but I never talked about it, you are guys first.
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Tim468

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Re: Women Speak Out about Peyronies Disease
« Reply #65 on: April 28, 2006, 02:30:23 PM »

Hi Kitty

Thanks for posting here. You might get flamed, but that doesn't seem to happen here too much.

You didn't ask for advice, but I am tempted to give just a little anyway...

First off, talk! The more that you speak to each other about your desires, fears, sadness and anger the better you will be able to move together to a better place. I think that a single man of 70 without a pertner might feel less inclinced to get surgery than a married man of 45 with a wife who really prefers intercourse of "alternatives". But how could your husband simply go that direction alone? He might benefit from knowing how important it is to you to have intercourse, and he might end up going more towards an implant than he might if his situation were different.

None of us make decisions in a vacuum - we need to take into consideration how other folks feel, as we decide what is best for us. I know that the support of my partner has made it easier for me to try things like iontophoresis; I know I wouldn't want to lie down in bed and electrocute my penis if my partner wasn't supportive!

Second, don't give up! We know nothing about the details of your case, and what you have done, but there is always hope and hope starts with information. You and he can learn together what is available - and perhaps you can learn best here.

It sounds like you are really frustrated - and this is a frustrating problem. Hang in there.

Tim
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Christine

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« Reply #66 on: June 11, 2006, 02:06:43 PM »

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.
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j

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Re: Women Speak Out about Peyronies Disease
« Reply #67 on: June 11, 2006, 04:38:12 PM »

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.
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Christine

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Re: Women Speak Out about Peyronies Disease
« Reply #68 on: June 11, 2006, 05:25:57 PM »

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.
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SteveW

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Re: Women Speak Out about Peyronies Disease
« Reply #69 on: June 11, 2006, 06:32:49 PM »

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.
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Christine

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Re: Women Speak Out about Peyronies Disease
« Reply #70 on: June 11, 2006, 08:04:51 PM »

I hear ya there Steve W.  He finally did consent to marriage counseling becuase this opened the door to other struggles that we have.    The trouble is that we cannot even afford the co-pays that are required for such counseling.  And the fact remains that while he could probably be convinced to talk about any other problem under the sun that we have, this topic will probably be off-limits for him in any kind of face to face counseling.  I will again attempt to get him to at least look at this forum and read the posts and see if I can get him to post and at least talk to the people here.  I realize that this is such a sensitive area to discuss...and why it would be difficult to discuss with a stranger face to face.   What I don't understand is why he would not be willing to talk to you all here online.   You can't get much safer than this....   I guess I just have to be more understanding and less judgemental in my expectations of how he should deal with this.   You are right about one thing....you men are wired differently then us women!
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j

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Re: Women Speak Out about Peyronies Disease
« Reply #71 on: June 11, 2006, 09:36:19 PM »

Personally, I can't imagine talking about something like this with anyone but a doctor. And that was no fun either.

I should point out that besides the 3 lousy choices I listed, there's actually another. If you read this forum you'll see guys trying things on their own that might work, but don't have much backing in the medical community. These include VEDs, hyperthermia and traction therapy. These things aren't scams, but aren't supported by much evidence yet, and are tedious, time-consuming and to many guys, more than a bit embarassing.  But one of them may yet turn out to be an answer.
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Liam

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Re: Women Speak Out about Peyronies Disease
« Reply #72 on: June 11, 2006, 10:40:18 PM »

I agree with you J. 

Plus, trying "experimental" methods offers hope and I feel like I'm doing something.

I also am holding on to the hope that collegenase will be very helpful.
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SteveW

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Re: Women Speak Out about Peyronies Disease
« Reply #73 on: June 11, 2006, 11:54:15 PM »

I agree.  If my "experimentation" resulted in even some improvement and information and data that might be passed along to help others.  I will endure.

NY Wife,
Could you gently encourge your spousal unit enought, to at least come on the site and read what is being said?  Non threatening.  If he should decide to participate, maybe you could promise not to log in and read what he has said?  He may perceive that as a threat or embarassing.  I don't know, just reaching here.
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Re: Women Speak Out about Peyronies Disease
« Reply #74 on: June 12, 2006, 04:37:06 PM »

I think it always helps to remind people that when using a site like this forum, you are absolutely anonymous.  You are not going to get junk mail or offers of Viagra, and your friends and relatives aren't going to find out, as long as your PC is under your own personal control and others aren't using it.
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SteveW

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Re: Women Speak Out about Peyronies Disease
« Reply #75 on: June 12, 2006, 11:42:59 PM »

So right you are men.  This is my private place.  The one area where I can complain, b#@ch, whine and vent about my Peyronie's.  My partner is very well aware of this site, but would never, ever dream of intruding on this space.  It is one of the few places where I can seek solace, comfort, information, support and camaraderie with no recriminations.  It's private and secure.  We need that and our fellow men.
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It takes guts to deal with Peyronies Disease.  Almost a 90 degree curve, hourglass effect, VI series & lots of ??

Caring

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Re: To Kitty
« Reply #76 on: June 12, 2006, 11:49:55 PM »

Quote
I dont want to divorse him , I dont 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.
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SteveW

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Re: Women Speak Out about Peyronies Disease
« Reply #77 on: June 12, 2006, 11:58:22 PM »

Caring, Kitty and all the partners...
Encourage your bent other half to join here.  He needs us.  We need him.  It's only as a group, that we can affect change, research and treatment.  No one here makes judgements and all of the site's members are here for the exact same identical reason...the effects of Peyronie's on our lives.
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It takes guts to deal with Peyronies Disease.  Almost a 90 degree curve, hourglass effect, VI series & lots of ??

Caring

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Re: Women Speak Out about Peyronies Disease
« Reply #78 on: June 13, 2006, 12:28:46 AM »

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!!
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englishsyr

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Re: Women Speak Out about Peyronies Disease
« Reply #79 on: June 15, 2006, 03:08:58 PM »

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
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j

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« Reply #80 on: June 15, 2006, 03:44:22 PM »

englishsyr

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.



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Fighter

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Re: Women Speak Out about Peyronies Disease
« Reply #81 on: June 15, 2006, 03:51:57 PM »

Hi Englishsyr,
Welcome to the form... I think you will find that everyone on this form has the same goals on keeping up with all the latest and greatest treatments for Peyronies Disease and much more. I have only been a member for a couple of weeks now and I found out so much info that I never knew about and it has really been helpful. I think the best thing for you to do is start reading about all the different topics and start asking question and learn more about what is going on. Maybe you can start by tell everyone about your condition... how long you had it, pain,medication etc... There is a discussion topic where you log in all that information. Check it out!

Good Luck and welcome!
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englishsyr

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Re: Women Speak Out about Peyronies Disease
« Reply #82 on: June 15, 2006, 03:54:46 PM »

I hope this is the road in the right direction.what i have read so far it look like i don't have it as bad as some have it there is no pain it just looks very strange its like you have a long balloon and while blowing it up you hold the middle then when let go its fully blown but not the part you was holding
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j

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« Reply #83 on: June 15, 2006, 04:07:40 PM »

Yeah that's called an 'hourglass" effect for obvious reasons, and it's a common variation of Peyronie's.  There's some fibrotic tissue in there that doesn't expand like it used to. If you have fibrotic tissue just on one side, you get a bend.

For years, the MDs have been saying there's nothing you can do about this, it can't be fixed or stretched. Most of us on this forum no longer quite believe that. Apparently some guys have gotten improvement by long-term use of a VED.

I know what you're thinking.  When I first realized what I had and started readiing messages on the net about things like vacuum pumps and stretchers, I thought my God I've fallen into in a nuthouse, or a "sex toy" shop, I couldn't imagine using such a thing without feeling like a complete fool. After a while the shock of the whole thing starts to wear off and I realized what we're talking about here is just hydraulic engineering - plumbing, really.  Some urologists are getting persuaded that these devices might help if properly used and there are some actual clinical trials getting started.  I haven't gone this route myself, yet, but I may.

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Liam

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Re: Women Speak Out about Peyronies Disease
« Reply #84 on: June 15, 2006, 04:27:32 PM »

Englishsyr,

If nothing else, you will find out what's going on related to Peyronies Disease here.   You will also have a place to ask question and share info.  It has been a real help to me.

Liam
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englishsyr

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Re: Women Speak Out about Peyronies Disease
« Reply #85 on: June 15, 2006, 04:37:04 PM »

im reading a lot about a VED machine that might help but it sounds like some sex toy to me i will have to read more about it
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Old Man

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Re: Medical Quality VEDs are not sex toys
« Reply #86 on: June 15, 2006, 04:52:18 PM »

Englishsyr:

A good medical quality VED is not a sex toy, but a viable and good means to assist one with Peyronies Disease and ED.
You should contact your uro or MD or uro for more information about one. In the meantime, there is another topic of this form that you can surf through to find out more about them.

Will be glad to work with you in any way. Just let me know how I can help as I have considerable experience in VED usage and/or therapy.

Old Man
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Liam

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Careful what you read
« Reply #87 on: June 15, 2006, 05:10:43 PM »

Always make sure claims are backed up by research.  This is true for any medical condition.

 I felt the same way when the urologist prescribed a VED.  I was embarrassed when my wife told me she would go pick it up from the local medical supply store.  BTW, BC/BS paid for all but $80.

Since then I have come to believe doing something (within reason) is better than doing nothing.  I use the shotgun approach.
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Angus

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Welcome Englishyr
« Reply #88 on: June 15, 2006, 05:49:33 PM »

im reading a lot about a VED machine that might help

  Englishyr, welcome to the board! For now, you need to know that you're going to be alright. There are things you can do to help this condition, and you've come to the place where guys and their partners are getting things done to help relationships and help the condition itself. It's not the end of the world, just a speed bump. You're going to have some questions... read the other threads including the VED thread, and when you're ready, ask away, and you'll get answers. However bad you feel about this today, don't forget... you're still The Man... it will take a little work, but truly, there's good days ahead and you're going to be fine. See you in the other threads.
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englishsyr

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Re: Women Speak Out about Peyronies Disease
« Reply #89 on: June 15, 2006, 06:16:45 PM »

thanks for the great welcome i have received from all of you I feel like I'm not alone but still cannot get over the personal problem i have but in time i hope to talk more about with your help and my wife
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Tim468

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Re: Women Speak Out about Peyronies Disease
« Reply #90 on: June 16, 2006, 09:59:57 AM »

Dear Englishsyr:

Just coming here and posting is a great start. If you go back and re-read your wifes post, you will see kindness, compassion, concern, and love. I read nothing in her words that sees you as less a man for any of this.

If you think that your entire worth as a man is determined by 2 or 3 square centimters of slightly excessively fibrotic tissue, then you are two dimensional. We have a link to a clinic for two dimensional people - just let me know if you want a referral.  ;D

We do, as men, tend to see our value in black and white terms, and a functioning penis can pretty much determine our sense of value as a lover. But it is simply a fact that there is a difference betewen how your penis works - right now - and who you are. Your wife did not fall in love with your penis - she fell in love with you. And as hard as it may be to love her now, I shal boldly predict that the outcome of this mean process will be to bring you closer together as a couple.

Peyronies Disease hurts us all on so many levels, physically and emotionally at the least. But as you learn to focus on your wifes needs despite your struggle with Peyronies Disease, you will learn more about intimacy and love itself. Peyronies Disease can be a fiercely painful gift at times, but I encourage you to see that it might also bring unanticipated gifts into your life, and that you might find a new resilience and strength you never knew you had; and closer to she who so obviously loves you.

And, by the way, here you might find out that there is a lot to do for yourself that can make it better.

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

SteveW

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Re: Women Speak Out about Peyronies Disease
« Reply #91 on: June 16, 2006, 10:30:03 PM »

englishsyr,
Welcome.  Join in and contribute.  It'll make you feel better knowing you aren't alone.  We may not have all the answer...or solutions to this rotten disease, but you will be talking to other guys who have, are or will feel the very same physical reactions, results and emotional ramifications as a result.

Help us help each other.  It's worth letting the walls down.
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It takes guts to deal with Peyronies Disease.  Almost a 90 degree curve, hourglass effect, VI series & lots of ??

Susan Wells

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Re: Women Speak Out about Peyronies Disease
« Reply #92 on: June 19, 2006, 07:25:07 PM »

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
Has anyone tried to post my Oprah letter for me?
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Christine

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Re: Women Speak Out about Peyronies Disease
« Reply #93 on: June 19, 2006, 09:55:37 PM »

Thank you Susan for posting and giving me some idea that there are women out here to talk to.   I have been struggling with this for about 4 years now.  My husband has only just recently agreed to look at this site and start to reach out to others for some support and guidance.  The trouble for me is other than letting him know that I love him no matter what his condition, I just don't know what or how to help the situation.   This weekend I was involved in a head-on car accident and while I am alright, I am home nursing my bruised body.  The good thing is that my husband is here to help me along because when I take the pain medicine I am kinda out-of-it.   I was hoping that while he was here he would spend time on the site.  Well the evening is here and he is in watching television.  Another opportunity lost.  I am going to log out for awhile because I am already feeling groggy.  Perhaps he will sign back on after I am asleep.    He read some info about the VED but is not convinced of their value.  He just calls them sex toys.  I responded with "What would be so wrong with that of they help?"  He just gave me a funny look and went on with what he was doing.   Not giving up yet.  Hope we can talk soon.   
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SteveW

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« Reply #94 on: June 19, 2006, 10:42:05 PM »

the hubby joins us here in an active way.  We welcome him, we understand what he is going through and he is certainly not the only man in the world with a penis affected by Peyronies Disease.  The one thing you, much less the rest of us can force or control, is his willingness, openness and desire to communicate.  Trying to force or even encourage participation will most often be met with resistance.  Men...we DO NOT like admitting faults, inadequacies about anything, much less our dicks or our ability to perform.  That alone, we are trained and conditioned to believe, makes us less of a man.   
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Liam

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Lurking
« Reply #95 on: June 19, 2006, 10:50:16 PM »

It is OK just to come and read all the posts.  That is 100% anonymous and private.  If later you want to participate. GREAT.  If not, that is fine, too.
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SteveW

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Do what works for you
« Reply #96 on: June 19, 2006, 11:25:22 PM »

knowing that we are here, willing to share and support.  Lurking, if that is your comfort level IS fine, just we all hope this site and the people involved, are beneficial to you. 


I certainly meant nothing negative or critical in my last statement.  I was trying to be openly supportive and in a small, feeble way explain how us men are wired.
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It takes guts to deal with Peyronies Disease.  Almost a 90 degree curve, hourglass effect, VI series & lots of ??

ComeBacKid

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Re: NYWifey
« Reply #97 on: June 20, 2006, 02:03:05 AM »

NyWifey,

Unfortunately there are many cheap pieces of crap sex toys out there and because there is so much junk being sold in the way of VED's many people come to believe they are crap and don't work.  I think the latenight commercials with sleezy Ron Jeremy selling penis pills and promoting penis pumps add to this stereotype on VEDs.  The whole idea behind the VED is not to pump up your dick big, but to give you erections and do a  workout to slowly stretch the plaque that one has from peyronies disease.  Your husbands reaction to VED's however is not uncommon and he just needs to continue to read information on them.  You can't force him on this site, you've led him to the well, hes taken a few sips of water, lets see if he comes back for more.  You'll have to walk the fine line of not nagging but continuing to encourage him.  Don't push the VED's just encourage him to go on here.  I personally PMed him and welcomed him and tried to help him and informed him on the VED's. However, many people are posting and stating they've seen results from using VED's religiously. Your doing everything you can, I'd relax and take it easy for awhile so you recover fully!

Best Wishes,

ComeBackid
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Christine

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Re: Women Speak Out about Peyronies Disease
« Reply #98 on: June 20, 2006, 08:55:45 AM »

Thanks guys,   You are really wonderful.  I just need to find some patience in this.  (not one of my many many (lol) virtues)   You are right.  I should be very happy with the fact that he has registered and has even posted a few times.   It is a major step for him.  And these are steps that HE has to make.   I want him to jump in with both feet and although I know that he is not ready for that, it is still my hope.  He needs to just put the toes in first.     I know that he has been here and reading I just want him to direct his questions to you all and not to me.  Mainly because I just don't have the answers for him as some of you might.   ComeBackid, you are right.  There is a ton of crap out there in the realm of VED's. I noticed that he was looking at different sites last night and looking at some that were offered for sale.  I think he understands that how it could help.  However now he is faced with the question of what he needs to look for in one and where to go to get it.   I think even if he does find one that is good that we can afford the next question would be how to use it.   I told him that these are questions that he needs to bring to you all for direction as it is not something that I certainly know anything about.
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« Reply #99 on: June 20, 2006, 04:13:01 PM »

NY. I will personally copy/paste and then email the instructions that I forgot to read first if and when you/he decides to buy a VED. My Uroigist fought/appealed to my Ins. co. for a Good quality VED. They ended up paying for it all! Susan, I admire the fact that you have found solutions with your husband. It gives me hope once I resume my search for a significant other.
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