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Author Topic: Women Speak Out about Peyronie's Disease  (Read 170002 times)

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Joshua

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Women Speak Out about Peyronie's Disease
« on: August 17, 2005, 08:01:30 PM »

If you are a woman and have experience with a partner with Peyronies Disease, how has it affected you. What advice do you need? What advice would you give.
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« Reply #1 on: August 20, 2005, 08:39:30 PM »

Antonio       Posted: Thu Jul 07, 2005      2:49 pm   

My wife was too shy to come online and speak out but she wanted me to relay her current feelings about Peyronies Disease with the promise she would elaborate at a later time.

“I am firmly (so to speak) against Peyronies Disease”!

Cleo c/o Antonio
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« Reply #2 on: August 20, 2005, 08:41:29 PM »

cmd       Posted: Thu Jul 07, 2005        3:04 pm       


my wife says a cure is just around the bend.
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Re: Women Speak Out about Peyronies Disease
« Reply #3 on: August 20, 2005, 08:43:15 PM »

Becky      Posted: Mon Aug 01, 2005       2:32 am   

Hi all,
My boyfriend has had Peyronies Disease for about a year now. We are both trying to deal with it - it causes mild Erectile Dysfunction for him and some pain during sex. He gets discouraged a lot, but we are working through it together. I love him more than anything else in the world, and I won't let something like Peyronies Disease come in the way of our staying together.

I think his case is pretty unique considering his age - 21 (I am 19). It is definitely Peyronies Disease though, he has all the classic signs. We are both holding out hope that it will get better with time. Does anyone know if there is a greater chance of it healing itself if the disease onset is at a younger age? That advice and any other encouragement would be great =). I really think he might be the one for me, and I'd love any words of hope from couples who have made it through.
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Re: Women Speak Out about Peyronies Disease
« Reply #4 on: August 20, 2005, 08:44:52 PM »

Wizard        Posted: Mon Aug 01, 2005         9:28 am   

Quote
Becky wrote:
I think his case is pretty unique considering his age - 21 (I am 19). It is definitely Peyronies Disease though, he has all the classic signs. We are both holding out hope that it will get better with time. Does anyone know if there is a greater chance of it healing itself if the disease onset is at a younger age?


Becky,

I will respond to you in the general comments section.

Mr Wizard
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lostlove

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Re: Women Speak Out about Peyronies Disease
« Reply #5 on: October 29, 2005, 11:47:07 PM »

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



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Susan Wells

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Re: Women Speak Out about Peyronies Disease
« Reply #6 on: October 31, 2005, 10:27:21 PM »

Hi everyone, My name is Susan and My Husband has had Peyronies Disease since Dec. 2000. I am just looking for some other married ladies to talk with and maybe form a support link.My husband took massive doses Vit E, had the verapamil injections, He's tried herbs, Viagra, Celais, and now owns a VED. We have been around the block and back with this disease. It almost ruined our marriage, but a man, husband, father, and grandfather is more than penis. It has been very difficult. I was in communication with another lady who's husband had the disease, but lost contact with her. I use to go to the Peyronies.org forum, but it got to mean and nasty for me, so I just stopped going on line.
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lostlove

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Re: Women Speak Out about Peyronies Disease
« Reply #7 on: October 31, 2005, 11:21:15 PM »

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

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Re: Women Speak Out about Peyronies Disease
« Reply #8 on: October 31, 2005, 11:52:08 PM »

lostlove,

I am also 51 and suffering with Peyronies Disease.  Your husband's condition needs to be properly diagnosed by an Urologist.  Your insurance should cover a referral and please don't let your husband's uncaring crap of a GP tell you this is a "sexual problem."  That is a symptom of the disease and treatment absolutely should be covered by your insurance.  I am a member of a group plan (albeit a pretty good one) and I have paid nothing more than my normal office and prescription co pays.  I am currently receiving Verapamil injections and the topical regime as well.  So far I am only out of pocket about $300.  Please get your husband in to see a specialist, even if you have to fight for a referral and argue with your insurance carrier.  Get started tomorrow!  You may have to take up the fight, since many men just won't discuss or admit that they have Peyronie's, because we don't just go around discussing our penises in public.  Male ego, you know.  Best wishes.
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20 years of Peyronie's / Erectile Dysfunction
Tried pills, VED, Verapamil injections, traction, Trimix & more.
Implanted 2/18/21. AMS cx 18cm + 3 RTE. Gay, 67.
Dr Etai Goldenberg, St Lous, MO
Now having lots and lots of wonderful sex!

lostlove

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Re: Women Speak Out about Peyronies Disease
« Reply #9 on: November 01, 2005, 12:37:27 AM »

thanks steve.. I'll try my best..
Jen
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bob

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Re: Women Speak Out about Peyronies Disease
« Reply #10 on: November 01, 2005, 11:28:22 AM »

Jen:
Another point: You indicated that this all started after he got hurt around the house. If it was accident related, even if your health plan has some sort of clause in it that disqualifies treatment for "sexual" problems, it would come under a different category of coverage. Don't be shy about checking with someone on your coverage.

Bob
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Hawk

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Re: Women Speak Out about Peyronies Disease
« Reply #11 on: November 01, 2005, 11:57:28 AM »

I am just looking for some other married ladies to talk with and maybe form a support link.

Susan,

Welcome to the forum.  It is so great that 2 new women members have joined and started posting within the past couple of days.  I am sure if you are patient and persistant at reaching out to other female members of the forum you will build the support group you are looking for.  Also, please be aware that your perspective often helps us and vice versa.  For some it is easier to get an understanding of attitudes, treatments, and other ideas from someone you have a more casual exchange with than a spouse.  The idea is that this will carry over to better communication with spouses and not become a substitute.

Thanks for your contribution.
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Larry H

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Re: Women Speak Out about Peyronies Disease
« Reply #12 on: November 01, 2005, 04:52:39 PM »

Ladies:

Your posts have given me an idea that I want to explore. If each of you would go to the topic "Awareness" and read all of the posts you will see where I have been attempting to enlist men with Peyronies Disease to become advocates in a fight against this disease. If you read all of the posts under that topic you will get a good flavor of why I and others believe this is critical in advancing Peyronies Disease treatments and possibly finding a cure.

The very personal nature of the disease and the nature of men in general my make this effort a mountain to high to climb as indicated from the lack of response. However, in reading your posts the idea came to me that perhaps this is an area better suited for women, or in particular the wives and partners of men with Peyronies Disease. Women have been forceful in advancing such things as brest cancer awareness and other medical issues. I think an organization of say "Wives Against Peyronies Disease" or something of that nature would be a huge step in the right direction.

If such a thing were to come about you ladies would would have several of us as a resource for help and guidance in your efforts. We need to be forceful with urologists, with drug research, with government officials, and the population in general. Again, this is all spelled out in the "Awareness" posts.

Let me also say this, we are not kooks, we are very serious about advancing Peyronies Disease understanding. Personally, I developed Peyronies Disease at age 57, I'm now just shy of 63. I've been married to the same fine lady for 38 years, and we have two married sons, fine daughter in laws, and 5 grandchildren. I know several of the men who post here personally, and they are all good family men. I go into all of this to try to give you some assurance that you are not talking to internet nuts.

If any of you are interested in at least looking into the idea of a womens Peyronies Disease advocacy group post a message under this topic. I know Hawk, the administrator of this forum, and though I have not spoken with him about this matter, I'm sure he and his partner Joshua who be glad to give us an area to work on such an group.

My Best,

Larry H
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lostlove

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Re: Women Speak Out about Peyronies Disease
« Reply #13 on: November 01, 2005, 09:28:01 PM »

Hi Larry,

I don't think any of you are kooks.. I think this web site is a blessing.. its great that you have each other to talk to.. I think your group is a wonderful idea.. I haven't went to the other site yet.. but i believe in all of you.. and I do believe there is too little seen, heard, or done about this disease.. its time to speak out.. bring it out into the world and let people know there should more.. much more done to keep people informed.. more medical attention done to help the suffers of Peyronies Disease.. keep me informed.. i'll help any way I can.. sincerely Jen
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Hawk

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Re: Larry - Awareness
« Reply #14 on: November 02, 2005, 01:13:56 PM »

Those familiar with the Peyronies Disease community know how funny it is that Larry who is a true gentleman and skilled communicator/advocate for Peyronies Disease would need anyone to vouch for him.  For the newbies around, I will vouch.  Larry is as trustworthy and talented as they come.  He has a can-do attitude that gives me hope that we can be a force for positive changes in a setting where change has been too little and too late.

If we have to have women show us how it’s done then so be it.  We have been negligent and derelict in our responsibility as Peyronies Disease patients.  We may remain idle with the lofty thought that we will courageously bear the suffering in silence, but there is one problem.  It is not our suffering alone that we allow to continue.  It is the suffering of spouses, families, and generations to come; generations of our own family that will face this same hell.  If we won't fight for ourselves, we need to stand up and fight for them.  If we won't lead, then lets at least stand shoulder to shoulder with the women that give a damn about us.

I am not asking people to become radical or to act rashly, but I am asking that we systematically and sensibly support the development of a workable plan to do something, and follow the lead of those willing to put some ideas together.

Thanks to the women that give me a new perspective just by doing some posting here.
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lostlove

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Re: Women Speak Out about Peyronies Disease
« Reply #15 on: November 02, 2005, 08:20:50 PM »

Hawk..
what happen with the idea of putting business cards out at local
urolgist about the forum? Has anyone tried .. I'm sorry if i'm coming off
a little gun ho over this matter.. It just makes me want to scream.. i've never felt so helpless in my life.. It just feels like  someone needs to do something.. someone needs to say hey i'm here.. i'm hurting,I have a physcial problem here and just because it may involve intercourse
doesn't mean its just a sexual matter.. it not just who I am, or what I am
but it is me. if my leg was broken,, the medical socity would try to find a way to fix it.. Why because it envolves the penis has it become such a hush subject? Why are doctors so lost about the subject.. maybe its because my guestions were coming from a women and i wanted answers..whoa.. okay
enough of going on and on..till next time..jen
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lostlove

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Re: Women Speak Out about Peyronies Disease
« Reply #16 on: November 02, 2005, 08:22:08 PM »

Susan
Hi,, if you ever need to just talk email me..Jen
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Hawk

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Re: Business Cards
« Reply #17 on: November 02, 2005, 11:26:28 PM »

Hawk..
what happen with the idea of putting business cards out at local
urolgist about the forum? Has anyone tried ..

Jen I am not sure, I actually have not done that yet but I do intend to.  I did make a brief presentation at our Prostate Cancer Support Group meeting.  I am sure that Larry H and Barry Farley are going to work on a plan of action that wil outline a few ways we can focus our efforts.  I encourage anyone with ideas to post them under "Peyronies Disease Awareness".

Larry is out of town and will be continuing his passion when he gets back.
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Susan Wells

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Re: Women Speak Out about Peyronies Disease
« Reply #18 on: November 05, 2005, 10:22:40 AM »

Hi, again it is Susan. I started to post a message last night and I must have hit a wrong key and I was back to my screen saver. My computer skills could be better. Jen, I sent a reply to your E mail, I hope you got it ok. If you want to have a candid conversation off line regarding Peyronies and its effects on my marriage, and how we have survived it, I am willing to share what has helped us. I am sure each couple and situation is unique for each couple though. Some times I know it just feels good to have someone to talk to. I don't always check my E mails every day, so If I don't respond right away that is the reason. Have a good day everyone.

                                                                                           Susan
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lostlove

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Re: Women Speak Out about Peyronies Disease
« Reply #19 on: November 06, 2005, 01:17:33 PM »

Hi, ladies..

check out the oral and herb treatments forum.. found an interesting site..
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lostlove

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Re: Women Speak Out about Peyronies Disease
« Reply #20 on: November 06, 2005, 01:24:19 PM »

Has anyone heard if Dupuytren's disease is an abnormal thickening of the palmar fascia. The contracture of the diseased fascia, which forms a band, cord or pit, is known as Dupuytren's contracture.

could be considered simular to Peyronies Disease.. these fascia are found in the palms of hands drawing up and shortening fingers.. or on the soles of a foot.. could treatment be simular.. i'm looking in to it.. i'll let you know what I find..
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lostlove

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Re: Women Speak Out about Peyronies Disease
« Reply #21 on: November 06, 2005, 01:27:12 PM »

yes it says Penile scarring has also been describe. web site i found is..
 http://www.arthroscopy.com/sp04012.htm

interesting reading..
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Re: Women Speak Out about Peyronies Disease
« Reply #22 on: November 06, 2005, 08:27:52 PM »

Dupuytren's (hands), Lederhose (feet) and Peyronies Disease are generally considered to be 3 facets of the same disease - many guys have 2 or more, or even (like me) all 3.  Even if you just have Peyronies Disease it's good to learn about Dupuytren's because there's more research going on there.
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Larry H

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Re: Women Speak Out about Peyronies Disease
« Reply #23 on: November 09, 2005, 10:33:41 AM »

Jen,

Sorry for the delay with this reply, but I've been traveling on business for the last week and for some reason I couldn't get online with my laptop. Computers are great....when they work!!

If you read all the posts under the awareness topic you know how I feel about the need for Peyronies Disease advocacy, and for all who have been touched by Peyronies Disease to start pushing the subject. As soon as I can put some business issues behind, I'm going to outline a plan of action and ask for comments and ideas to develop a formal battle plan, if you will. I have spoken with Hawk, and I believe he and Joshua will be willing to give Barry and me some forum space to develop Peyronies Disease advocacy.

Needless to say I want you ladies to be active in this endeavor as individuals, or as a group, if you or someone else wishes to form a group of wives of men with Peyronies Disease. I believe that a group of wives may be more effective as Peyronies Disease activists than the men who suffer with Peyronie's.

It is with my sincere appreciation that you and other wives have come to this forum to not only seek help, but to offer your support as well. If we all pull together we will be successful in advancing Peyronies Disease awareness and improving treatments.

My very best,

Larry
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marti

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Re: Women Speak Out about Peyronies Disease
« Reply #24 on: November 09, 2005, 02:49:53 PM »

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

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

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

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

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

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

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

Take Care,
Marti

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Larry H

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Re: Women Speak Out about Peyronies Disease
« Reply #25 on: November 09, 2005, 04:33:47 PM »

It is understood, although not stated, that some wives post in secret because of the attitude of their husbands. On the other hand some wives post with the support of their husbands. It is also true that if a wife chooses to be a vocal advocate she exposes her husbands condition. The decisions as to the level of advocacy, if any, must be a personal decision with each man and each woman. If one chooses open advocacy, I would think that it should be with the full knowledge of both partners.

There must be some vocal or open advocates, but this does not mean that all or even most must be open. There is much that can be accomplished behind the scenes by advocates who wish to remain anonymous.

Larry H
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lostlove

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Re: Women Speak Out about Peyronies Disease
« Reply #26 on: November 15, 2005, 12:54:50 AM »

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

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Re: Women Speak Out about Peyronies Disease
« Reply #27 on: November 15, 2005, 10:51:38 AM »

Note to Jen:

Way to go lady! I say, "tell the whole world about men's sexual problems and how to cope with them".

Good luck to you and we all will be there to help, just ask.

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

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Re: Women Speak Out about Peyronies Disease
« Reply #28 on: November 17, 2005, 11:56:19 PM »

Hi everyone,
     Jen I am glad to here things are going better for you and your husband.
What is depressing to me is that my husband has basically given up. I must give him his due though he has had the painful series of verapamil injections, Vit E until it was coming out of his ears, Tienchi Ginseng, and now he has a VED. I got most of these ideas from the other forum. Nothing has really help him much. He's at the point that he doesn't really want  to hear another idea from me. I guess I would feel better if he would actively pursue help for himself, but he feels there is no help. We don't talk openly very much about his Peyronies Disease, I just run off information and put it at the table where he sits. He use to read the information, but I think he resents me doing this now. We have adjusted to our new sex lives with Peyronies Disease. The only thing that has helped me is an acceptance of this is the way things are. I still hope for a miracle cure, but I doubt I'll see it in  my life time.
    On the other forum they had a list major drug comapnies, I use to send a letter to them about every three weeks for about a year.I was telling them about Peyronies and the statics on how many men probably had it and I asked them if they would develop a drug ot treatment for it. I got one response from one company after a year, and they said they did not do that type of research. I've written to Bob Doyle about 5 times because of his outspoken remarks about Erectile Dysfunction. I never heard from him. I really think who we should all write is Oprah Winphrey. What we need is national exposure. I thought of writing her, but then I thought if she actually contacted me what would I do. The last thing my husband would want is me on National T.V. telling everyone about his problem. No one knows he has Peyronies Disease so we can pretend everything is just great.
     Sorry for the lenghty post, I think I was venting a bit, but I still think the Oprah idea is a good one.

                                                                   All my best to all,     
                                                                    Susan
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Old Man

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Re: Women Speak Out about Peyronies Disease
« Reply #29 on: November 18, 2005, 10:54:00 AM »

Susan:

Never feel that you are just venting your problems here. We are all in this together and must help one another. I am sorry that you are unable to get your husband to read the articles and/or any information about Peyronies Disease. I know the feeling he has because it has become a desperate situation for him. Went through this many times over the past years of my battle with this crazy mess. It has come and gone several times during those years.

This may not be the thread to mention this, but I would definitely urge him to continue with the VED and use a good exercise routine every day. It takes time and patience for the VED to produce results. If it does nothing else, it will keep the organ more healthy than if it is left idle. Glad to help in any way should you need it.

Sincerely, Old Man
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Age 92. Peyronies Disease at age 24, Peyronies Disease after
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Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

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Re: Women Speak Out about Peyronies Disease
« Reply #30 on: November 18, 2005, 08:43:55 PM »

Jen and Susan,

I given thought of contacting Oprah or Dr. Phil for public exposure. If either of you get a forum on national TV you can count me in to be there. That's the direction we are moving in with this awareness issue. You have my support, and when the time comes with what Barry and I are doing I hope we'll have your support. It's past time to stand up and yell that we are fed up with inaction. Please continue to support this awareness issue as it needs to be driven.

Larry
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PEACHB

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Re: Women Speak Out about Peyronies Disease
« Reply #31 on: November 20, 2005, 08:43:57 PM »

Hi everyone,
   I think Ophra is a teriffic idea!!! You could go on in disguise. Also, I'm new as of tonight to this. What is VED??
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Susan Wells

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Re: Women Speak Out about Peyronies Disease
« Reply #32 on: November 20, 2005, 09:27:32 PM »

Dear PeachB,
      I have no problem sharing with another wife what has helped me and my situation. I recently wrote to Jen on this same topic. Since my computer skills are somewhat limited. I'd like to be able to send you the same message I sent Jen so I don't have to retype it a second time.
      Jen if you know how to send my Email over to PeachB Please feel free to do so. If you can give me your E mail address I guess I can get my message out of my sent file and send to you. Anyway I will contact you one way or the other.

                                                                                              Susan
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Re: PeachB
« Reply #33 on: November 20, 2005, 10:14:38 PM »



PeachB, Welcome to the forum and a huge welcome as an active posting member.  In answer to the question , V.E.D. stands for vacuum erection device.  There is a topic with tons of information on this forum.
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PEACHB

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Re: Women Speak Out about Peyronies Disease
« Reply #34 on: November 20, 2005, 10:25:09 PM »

Hello, I am new to this forum or any forum for that matter. I am a wife, married only a little over 3 years and NO intercourse yet!!! My husband has given up. Actually I found this by looking at the similar disease of the hands and found this. I wish I had found it 3 years ago but maybe all is not lost. Thanks for being there!! You have given me hope and maybe I can pass it on to my husband!!

Peachb
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lostlove

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Re: Women Speak Out about Peyronies Disease
« Reply #35 on: November 22, 2005, 01:08:10 AM »

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

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

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

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

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marti

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Re: Women Speak Out about Peyronies Disease
« Reply #36 on: November 25, 2005, 02:17:42 AM »

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

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

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

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

For Mike and I, we have arrived at a place where it is "ok"..it is what it is and we have learned to live with it.  The bad times are relieved by acknowledging that while it aint what it was, we can still pull together in the same direction and overcome the problems.  In short we work on it.  We attempt to comunicate.  We acknowledge each others right to feel bad or angry at the situation, without having to be angry with each other.  I have had to learn and acknowledge that he may not feel the same way about himself as he did and I can't change his mind, and he has had to acknowedge that I have the right to tell him that I still see him as I always have and it makes no difference except to him.  Those thoughts and feelings once expressed can be worked with as long as we are willing to do so.   I has made a difference in the bedroom because I don't need to reassure him, and he doesn't need to prove anything. We can just relax and enjoy in what ever form it takes. The "fear factor" isn't present anymore.   It is an ongoing process.
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Re: Women Speak Out about Peyronies Disease
« Reply #37 on: December 01, 2005, 09:43:16 PM »

Hi all, I still have been thinking about my Oprah letter. If I write a letter and put it on this thread would anyone print it out and send it to Oprah along with me?? One voice will not mean much, but a chorus might be heard. I've got some time off from work in December that I can devote to this project.  I'd like to know if anyone is interested?? Take care.

                                                                                      Susan
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Larry H

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Re: Women Speak Out about Peyronies Disease
« Reply #38 on: December 01, 2005, 10:04:24 PM »

Susan,

You have me on board for one, and I think I can speak for several others as well. Work on it, and if you need any help just ask. I would welcome the chance to sit on camera with Oprah, or Dr. Phil, or anyone else and tell the world about Peyronie's.

My Best,

Larry
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Re: Susan - Oprah Letter
« Reply #39 on: December 06, 2005, 08:57:25 AM »

Susan,

I am not much of a TV personality but I would certainly send a letter.
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Barry

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Re: Women Speak Out about Peyronies Disease
« Reply #40 on: December 07, 2005, 03:04:13 PM »

Susan,
As my good friend Larry said, I too would be interested in a venture with you. I would hope that others on this forum will see the possible value of the type of exposure which will arise if the letter kicks something off. You have drawn my interest, please keep in touch. Also, should you want to talk with me one on one, it would be my pleasure.

Warm Regards,
Barry   
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juicebox

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Re: Women Speak Out about Peyronies Disease
« Reply #41 on: December 13, 2005, 03:43:54 PM »

Hi all,

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

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

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

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

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

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Re: Women Speak Out about Peyronies Disease
« Reply #42 on: December 13, 2005, 05:41:48 PM »

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

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

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

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



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Larry H

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Re: Reply to Stephanie
« Reply #43 on: December 14, 2005, 10:22:37 AM »

Hi Stephanie,

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

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

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

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

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

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

My Best,

Larry
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phil

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Re: Women Speak Out about Peyronies Disease
« Reply #44 on: December 14, 2005, 11:41:34 PM »

Stephanie,

There is a real pyschological component to this disease.  It makes you feel deformed.  But I just went to Mayo and saw people walking around with heart disease and incurable brain tumors and it put things in perspective.

 I  have had Peyronies Disease for about a year and a half, and developed a curvature this past June. I just went to see a Peyronies Disease specialist who told me the best treatment method right now is iontophoresis using a steriodal cream and/or verapimil. The tough part is finding a place that does this treatment.  Usually it is a physical therapy facility.

Also, one could take Vitamin E  ( Unique E)  and Acetyl L Carnitine, and it couldn't hurt to try oral Potaba (need a prescription and it is a lot of pills). You probably should try aspirin or motrin to reduce the inflammatory response.   DHA and EPA from fish oil may help also.

Heat treatment like soaking in a tub or infrared  heat ( just to 102-104 degrees) will help also.

A lot of people have had results with DMSO applied topically. 

Hope this helps.  Don't get discouraged. It could go away on its own.  It is like a scar that will heal eventually.

 




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Hawk

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Re: Phil
« Reply #45 on: December 15, 2005, 07:11:35 PM »

Most know or will soon learn that even the medical community differ strongly on which of the conventional treatments are effective.  Not surprisingly, we differ even more on the less conventional treatments.  

There is some difference of opinion on this forum about every recommendation that Phil made in the previous post, not to mention every treatment on this forum.  With that in mind, lets comment on those under those topics.  The two DMSO posts were moved to the "DMSO" topic.

Byway of comment, even a supportive post like Phil's could have been posted under "General Comments" with a subject line such as: " Re:Juicebox - Women Speak Out"

Thanks for the posts guys
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Susan Wells

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Re: Women Speak Out about Peyronies Disease
« Reply #46 on: January 08, 2006, 10:04:56 PM »

Hi Everyone, I tired to post my Oprah letter twice before , but lost it twice. I think I am doing something wrong, but I am not sure what. Anyway, I decided to try it again. I hope someone will send this letter besides me. You are welcomed to personalize it to fit your circumstances, or edit it as needed, but I hope some of us can send it. I don't have Oprah's address, but I figured we could get it off the net, she works for ABC, that is channel 7 where I live.
       

                                                                                           January 8, 2006

Dear Oprah,

          I am writing to you on behalf of the millions of men and their partners who suffer from a disease that few have even heard about. You appear to be a woman with a social conscience, one who desires to improve the lives of her fellow man by the use of her vast resources and popularity. I am counting on that generous nature and spirit to help make Peyronies Disease a household word like Erectile Dysfunction (Erectile Dysfunction). 
       
          Peyronies Disease is a disease of the penis in which hard fibrous patches build up under the skin of the penis to twist and distort the shape of the penis into bizarre configurations or angles of more or less than 90 degrees, or into hour-glass shapes. The distortion for each man is different along with its severity. The bottom line is many men are rendered incapable of having sex, or in many cases Peyronies leads to Erectile Dysfunction. We were in hopes that you could have your staff research this disease and do a program to inform the public of the disease and to finally bring it out into the open.  You would be doing many millions of men and their partners a public service.
 
          Peyronies sufferers and their partners are very disheartened at the lack of effective medical treatment that is available to them, and at a lack of research that is being conducted by pharmaceutical companies. Peyronies Disease or Peyronies Disease as it is called by those who suffer from it is a "Closet disease" as Erectile Dysfunction use to be before Mr. Dole and others made it a household word. Peyronies Disease carries the same stigma that Erectile Dysfunction use to have. Peyronies is said to be "an old man's disease," the same misinformation and myth that was purported about Erectile Dysfunction. Peyronies affects men from 18 to their 70's and beyond.

          Although, data seems to be in short supply and not consistent, it appears from the research I have read that Peyronies affects about 1% to 7% of the male population of the United States. As of the 2000 census there were 138,371,753 males in the United States. Taking a conservative estimate of 1% to 3% you are still talking about from 1,383,717 to 4,151,152 men in the USA alone afflicted with the disease. Yes, men in the millions suffer from this disease! So you might be wondering why you have never heard of it.

          As mentioned earlier, Peyronies, like Erectile Dysfunction has a stigma attached to it, and that is why those who suffer from it suffer in silence. This disease like Erectile Dysfunction devastates lives, marriages, and families. Acute depression for the men and his partner are side effects of the disease. sufferers talk about ruined lives, guilt, depression, loneliness, isolation, and even suicide. Since we do not have a Bob Dole to speak for us, Peyronies Disease sufferers and their partners want to make the pharmaceutical companies aware that if they could develop a product which would cure or at the very least improve the devastating effects of Peyronies Disease that there would be a "Large Market" for their product, not only in the United States, but in other countries as well. On Peyronies Disease forums there are people writing from the UK and Italy, and other countries asking for a medicine or treatment that works!

          There are support groups and forums on line, some have closed down, and some are still active. If you want to see what Peyronies Disease sufferers have to say about Peyronies Disease go to: WWW.Peyroniesforum.net. What you are going to read there is about desperate people who would be willing to pay almost anything to find relief from this disease.

          On a personal note, my husband, as you may have suspected is a Peyronies victim, he is not writing to you because he is too withdrawn, depressed, and silent at this point to do so. So on his behalf and for all those who suffer from Peyronies, I am asking you again for your help by bringing this disease to the attention of the public and the pharmaceutical companies.

           There is a market for medicine which will cure or give some measure of relief from this disease. Please do you own research on the disease and let me know if you are willing to do a program on Peyronies Disease. On the Peyronies Forum, there are men willing and ready to go on your program to tell their story and to discuss the devastating effects of this disease on their lives. I am looking forward to hearing from you. Thank you for your time.


                                                                                    Sincerely,
                                                                                    Susan L. Wells

         
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Larry H

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Re: Women Speak Out about Peyronies Disease
« Reply #47 on: January 09, 2006, 07:01:36 PM »

Susan,

I can't tell you how delighted I am that you took the initiative to write the letter to Oprah. You articulated beautifully the condition and the need for awareness. You have my thanks and I'm sure the thanks of the entire community of people who suffer from this disease, both men and women.

If you have her address please post it here or let me know by PM and I'll send a back up to your letter.

My Best,

Larry
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Re: Women Speak Out about Peyronies Disease
« Reply #48 on: January 09, 2006, 09:53:53 PM »

Susan,

Thumbs Up!   I salute your contribution, your letter is very articulate.  Please post Oprah's address when you get it.
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marti

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Re: Women Speak Out about Peyronies Disease
« Reply #49 on: January 10, 2006, 01:33:03 PM »

Great Letter Susan!...I would like to ask a favor of you and all the women involved with Peyronies Disease.

I just posted an announcent under the APDA thread here.  Please take note of the information concerning the outcome of the survey we ran on the APDA site.

This year we will be running more surveys and the results will be used in a similar fashion. 

Dr Nelson and I are in the process of designing the quetionaire for two of them.  One particular survey is focused on the affects of Peyronies Disease on the partner and the family life.  Questions like "how has the change in your relationship affected your children"...Questions that go to the very heart of the quality of your family life and how it has been affected from the partners perspective .

We need your input to formulate some of the questions, as each partner has a different view of what is happening, so your personal experiences are vitally important.  I would appreciate it if the men who read this would encourage their partners to respond also.  This will be broad based, and vital to establishing the FACT that Peyronies Disease has a great negative impact on family life.....

If you are interested in helping, and the membership here has no objection, let me know (you can use the personal message if you like and there is no objection).  A one line question or statement on your concern or experience is all that is really needed.

Side note to all of this, the other survey we will be doing is similar but for the men.  It will also be focused on the psych aspect and include questions on how much money is spent on self treatment because little else is available..so start calculating your reciepts! ;) At present there is no evidence that surveys of this type have ever been done, evaluated, or published on the psych aspect of Peyronies Disease.  So lets go get em!

Thanks and Take Care,
Marti
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