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Other Peyronies Disease Discussion Boards => Women Speak Out about Peyronies Disease - PUBLIC Forum => Topic started by: Joshua on August 17, 2005, 08:01:30 PM

Title: Women Speak Out about Peyronie's Disease
Post by: Joshua 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.
Title: Spouse
Post by: Old Forum 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
Title: mine 2
Post by: Old Forum 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.
Title: Re: Women Speak Out about Peyronies Disease
Post by: Old Forum 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 ED 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.
Title: Re: Women Speak Out about Peyronies Disease
Post by: Old Forum on August 20, 2005, 08:44:52 PM
Wizard        Posted: Mon Aug 01, 2005         9:28 am   

QuoteBecky 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
Title: Re: Women Speak Out about Peyronies Disease
Post by: lostlove 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..



Title: Re: Women Speak Out about Peyronies Disease
Post by: Susan Wells 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.
Title: Re: Women Speak Out about Peyronies Disease
Post by: lostlove 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..
ed occured not even a week after.. he was in alot of pain and swollen.. of course even through it was an accident it still was a sexual matter because it concerned the penis.. our insurance wouldn't pay.. and the doctor gave my husband Viagra.. which really didn't help then.. my husband was so upset with the doctors uncaring attidude
and the fact that our insurance wouldn't help pay to find out what was going on.. that after a year he still hasn't gone to see another doctor.. so I am on my own search to find out what information is out there.. I'm amazed at the many lives Peyronies Disease effects, how many men there are.. how this disease is treated so unfairly..why isn't there more research being done..
thanks for listening to me ramble.. thank you for being here..
Title: Re: Women Speak Out about Peyronies Disease
Post by: SteveW 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.
Title: Re: Women Speak Out about Peyronies Disease
Post by: lostlove on November 01, 2005, 12:37:27 AM
thanks steve.. I'll try my best..
Jen
Title: Re: Women Speak Out about Peyronies Disease
Post by: bob 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
Title: Re: Women Speak Out about Peyronies Disease
Post by: Hawk on November 01, 2005, 11:57:28 AM
Quote from: Susan Wells on October 31, 2005, 10:27:21 PM
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.
Title: Re: Women Speak Out about Peyronies Disease
Post by: Larry H 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
Title: Re: Women Speak Out about Peyronies Disease
Post by: lostlove 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
Title: Re: Larry - Awareness
Post by: Hawk 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.
Title: Re: Women Speak Out about Peyronies Disease
Post by: lostlove 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
Title: Re: Women Speak Out about Peyronies Disease
Post by: lostlove on November 02, 2005, 08:22:08 PM
Susan
Hi,, if you ever need to just talk email me..Jen
Title: Re: Business Cards
Post by: Hawk on November 02, 2005, 11:26:28 PM
Quote from: lostlove 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 ..

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.
Title: Re: Women Speak Out about Peyronies Disease
Post by: Susan Wells 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
Title: Re: Women Speak Out about Peyronies Disease
Post by: lostlove on November 06, 2005, 01:17:33 PM
Hi, ladies..

check out the oral and herb treatments forum.. found an interesting site..
Title: Re: Women Speak Out about Peyronies Disease
Post by: lostlove 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..
Title: Re: Women Speak Out about Peyronies Disease
Post by: lostlove 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..
Title: Re: Women Speak Out about Peyronies Disease
Post by: j 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.
Title: Re: Women Speak Out about Peyronies Disease
Post by: Larry H 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
Title: Re: Women Speak Out about Peyronies Disease
Post by: marti 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

Title: Re: Women Speak Out about Peyronies Disease
Post by: Larry H 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
Title: Re: Women Speak Out about Peyronies Disease
Post by: lostlove 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!
Title: Re: Women Speak Out about Peyronies Disease
Post by: Old Man 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
Title: Re: Women Speak Out about Peyronies Disease
Post by: Susan Wells 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 ED. 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
Title: Re: Women Speak Out about Peyronies Disease
Post by: Old Man 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
Title: Re: Women Speak Out about Peyronies Disease
Post by: Larry H 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
Title: Re: Women Speak Out about Peyronies Disease
Post by: PEACHB on November 20, 2005, 08:43:57 PM
Quote from: Susan Wells on November 17, 2005, 11:56:19 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??
Title: Re: Women Speak Out about Peyronies Disease
Post by: Susan Wells 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
Title: Re: PeachB
Post by: Hawk 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.
Title: Re: Women Speak Out about Peyronies Disease
Post by: PEACHB 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
Title: Re: Women Speak Out about Peyronies Disease
Post by: lostlove 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, ed, maybe there would be more research, more of an effert to find a cure.. besides having to take injections or surgery to fix the problem..

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

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

Title: Re: Women Speak Out about Peyronies Disease
Post by: marti 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.
Title: Re: Women Speak Out about Peyronies Disease
Post by: Susan Wells 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
Title: Re: Women Speak Out about Peyronies Disease
Post by: Larry H 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
Title: Re: Susan - Oprah Letter
Post by: Hawk on December 06, 2005, 08:57:25 AM
Susan,

I am not much of a TV personality but I would certainly send a letter.
Title: Re: Women Speak Out about Peyronies Disease
Post by: Barry 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   
Title: Re: Women Speak Out about Peyronies Disease
Post by: juicebox 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?? 
Title: Re: Women Speak Out about Peyronies Disease
Post by: j 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. 



Title: Re: Reply to Stephanie
Post by: Larry H 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
Title: Re: Women Speak Out about Peyronies Disease
Post by: phil 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.






Title: Re: Phil
Post by: Hawk 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
Title: Re: Women Speak Out about Peyronies Disease
Post by: Susan Wells 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 ED (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 ED. 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 ED use to be before Mr. Dole and others made it a household word. Peyronies Disease carries the same stigma that ED use to have. Peyronies is said to be "an old man's disease," the same misinformation and myth that was purported about ED. 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 ED has a stigma attached to it, and that is why those who suffer from it suffer in silence. This disease like ED 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

         
Title: Re: Women Speak Out about Peyronies Disease
Post by: Larry H 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
Title: Re: Women Speak Out about Peyronies Disease
Post by: Hawk 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.
Title: Re: Women Speak Out about Peyronies Disease
Post by: marti 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
Title: Re: Women Speak Out about Peyronies Disease
Post by: Blondeguy 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
Title: Re: Women Speak Out about Peyronies Disease
Post by: Susan Wells 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
Title: Re: Women Speak Out about Peyronies Disease
Post by: lost2 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
Title: Re: Women Speak Out about Peyronies Disease
Post by: Susan Wells 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
Title: Re: Reply to Susan - Larry
Post by: Larry H 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
Title: Re: Women Speak Out about Peyronies Disease
Post by: dcaptain 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. 
Title: Re: Women Speak Out about Peyronies Disease
Post by: Susan Wells 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
Title: Re: Women Speak Out about Peyronies Disease
Post by: apopka 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!
Title: Re: Apopka - "What else can I do"
Post by: Hawk 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. 

Title: Re: Women Speak Out about Peyronies Disease
Post by: kbmw 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.
Title: Re: Reply to Apopka
Post by: Larry H 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
Title: Thanks for the input.
Post by: apopka 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.
Title: Re: Women Speak Out about Peyronies Disease
Post by: Caring 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.
Title: Re: Women Speak Out about Peyronies Disease
Post by: Hawk 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
Title: Re: Women Speak Out about Peyronies Disease
Post by: kitty 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.
Title: Re: Women Speak Out about Peyronies Disease
Post by: Tim468 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
Title: Wife at her last rope
Post by: Christine 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.
Title: Re: Women Speak Out about Peyronies Disease
Post by: j 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.
Title: Re: Women Speak Out about Peyronies Disease
Post by: Christine 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.
Title: Re: Women Speak Out about Peyronies Disease
Post by: SteveW 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.
Title: Re: Women Speak Out about Peyronies Disease
Post by: Christine 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!
Title: Re: Women Speak Out about Peyronies Disease
Post by: j 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.
Title: Re: Women Speak Out about Peyronies Disease
Post by: Liam 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.
Title: Re: Women Speak Out about Peyronies Disease
Post by: SteveW 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.
Title: Re: Women Speak Out about Peyronies Disease
Post by: j 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.
Title: Re: Women Speak Out about Peyronies Disease
Post by: SteveW 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, bitch, 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.
Title: Re: To Kitty
Post by: Caring on June 12, 2006, 11:49:55 PM
QuoteI 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.
Title: Re: Women Speak Out about Peyronies Disease
Post by: SteveW 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.
Title: Re: Women Speak Out about Peyronies Disease
Post by: Caring 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!!
Title: Re: Women Speak Out about Peyronies Disease
Post by: englishsyr 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
Title: new member
Post by: j 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.



Title: Re: Women Speak Out about Peyronies Disease
Post by: Fighter 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!
Title: Re: Women Speak Out about Peyronies Disease
Post by: englishsyr 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
Title: new member
Post by: j 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.

Title: Re: Women Speak Out about Peyronies Disease
Post by: Liam 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
Title: Re: Women Speak Out about Peyronies Disease
Post by: englishsyr 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
Title: Re: Medical Quality VEDs are not sex toys
Post by: Old Man 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
Title: Careful what you read
Post by: Liam 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.
Title: Welcome Englishyr
Post by: Angus on June 15, 2006, 05:49:33 PM
Quote from: englishsyr on June 15, 2006, 04:37:04 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.
Title: Re: Women Speak Out about Peyronies Disease
Post by: englishsyr 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
Title: Re: Women Speak Out about Peyronies Disease
Post by: Tim468 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
Title: Re: Women Speak Out about Peyronies Disease
Post by: SteveW 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.
Title: Re: Women Speak Out about Peyronies Disease
Post by: Susan Wells 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?
Title: Re: Women Speak Out about Peyronies Disease
Post by: Christine 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.   
Title: We all hope...
Post by: SteveW 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.   
Title: Lurking
Post by: Liam 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.
Title: Do what works for you
Post by: SteveW 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.
Title: Re: NYWifey
Post by: ComeBacKid 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
Title: Re: Women Speak Out about Peyronies Disease
Post by: Christine 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.
Title: NY Wifey-Susan
Post by: zigwyth 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.
Title: Re: Women Speak Out about Peyronies Disease
Post by: englishsyr on June 22, 2006, 04:52:36 PM
has my wonderful wife (ha) has told you I'm looking into the VED machine and getting a price but like she said i do it in my time and do not rush anything to do with this damn it has taken me 4 years to talk about it lol
Title: Morale Boost
Post by: ComeBacKid on June 22, 2006, 05:35:38 PM
I put off going tot he doctor or talking about this for 3 years and my condition just worsened.  Not talking about it or doing nothing simply will make you feel a lone and you have no shot at making your condition any better.  I think its time for us men to take a stand, stop hiding in the shadows, come out and address this issue.  Don't be ashamed of peyronies or not talk about it.  Accept it, deal with it, and attack it.  Lets make some noise and take some action instead of sitting around feeling sorry for ourselves!

ComeBackid
Title: Mr. Rogers once said...
Post by: Tim468 on June 22, 2006, 06:54:14 PM
"That which becomes mentionable, can become managable."

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

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

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

Just my two cents worth.

Tim
Title: Re: Women Speak Out about Peyronies Disease
Post by: Jeanne on June 24, 2006, 08:06:15 PM
My husband has recently diagnosed with Peyronies disease. I am a retired Physical therapist. Years ago I worked in a local hospital and one of the treatment protocols was ultra sound for the treatment of Peyronies. The proceedure was always administered by a male therapist. I am hoping that someone knows the treatment proceedure and can advise me of the parameters and the success of such treatment. Thanks, Jeanne
Title: Ultrasound not effective in treatment of peyronies disease
Post by: ComeBacKid on June 25, 2006, 12:15:59 AM
Jeanne,

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

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

ComeBackid
Title: Ultrasound Therapy Link
Post by: Liam on June 25, 2006, 09:19:29 AM
Jeanne

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

https://www.peyroniesforum.net/index.php/topic,68.0.html
Title: Re: Women Speak Out about Peyronies Disease
Post by: englishsyr on June 27, 2006, 05:03:45 PM
I keep turning down my wife's advances without thinking then my first reaction is to get mad and block her out is this normal she must think i don't want her but i do so much,I think this disease is in the mind with me more then it is in my penis and whats worse i dont even know I'm doing it until she is crying
Title: Re: Englishsyr - Blocking out the spouse
Post by: Hawk on June 27, 2006, 05:20:49 PM
English,

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

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

If you got my private message to you, you will remember the value I placed on creativity and experimentation until you figure out what works.  Shutting down your sex drive, along with all the associated intimacy, will only rob the two of you.  Creativity, experimentation, and intimacy can truly give you back more than you lost.
Title: The Ladies Room
Post by: Christine on July 06, 2006, 11:21:14 AM
Hello all,

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

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

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

So ladies, please take a minute, pop in and check out the board, say hello, pour yourself a cup of tea and relax with us for a while.    I look forward to seeing you there!!!
Title: Re: Christine - The Ladies Room
Post by: Hawk on July 06, 2006, 11:57:44 AM
As she indicated in her previous post, Christine has stepped forward to tackle a significant undertaking.  In fact, she stepped forward with both the idea and the commitment to invest herself to make it work.  She will moderate and promote this board. Though it is a private area for the women, we are attempting to make at least the title and description visible to all so they consider the value and promote it's success.  ;D Presently all I can do is ask you to imagine a board below the "Off topic" area that women registered on this forum can see.  This will hopefully give those that support us, a way to support each other.  This can only result in a win/win outcome resulting in an even larger capacity to support those they love.

If you are a woman and you cannot see the "Ladies Room" notify Christine by Personal Message, Post, or by email: christine@PeyroniesSociety.org
Title: Re: Women Speak Out about Peyronies Disease
Post by: Susan Wells on July 11, 2006, 10:38:06 PM
Dear Chris and Hawk,
   I have posted on the new thread. Thanks Chris for undertaking this task. I hope we can get more women to post there. Hawk let me know how I can help.

                                                                                           Susan
Title: Re: Women Speak Out about Peyronies Disease
Post by: Caring on July 12, 2006, 01:06:48 AM
I wish to take a moment and let all of you read a post that was made on another forum, sometime back, which is the most profound Peyronies Disease post I have ever read! To me, it epitomizes this fight, this disease, and the heartache we all experience. 
Of all the things we, as couples, have to deal with, reading of one woman's heartache, this expresses exactly what the male distance and anger do, not only to the relationship, but to the eventual emotional state of the wife.

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

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

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

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

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

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

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

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

It takes time and work, and a clear personal soul searching to decide if it is worth it. For me the answer was yes. I also had to get real honest with myself and try to find out why I jumped into the anger bag along with him and allowed him to do it...Suggestion..don't wait for the "couples"..seek some clarity for you too. Your answers will come and you can reconnect if both of you are willing."
Title: Anger source identification
Post by: Angus on July 26, 2006, 10:18:59 PM

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

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

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

     

     
Title: Re: Women Speak Out about Peyronies Disease
Post by: Susan Wells on July 30, 2006, 12:16:07 AM
To Angus,
      I agree with your analysis of the situation. Until my husband was willing to talk to me and try different approaches to our sex life we were no where. If you are not working together, then you are working against each other. I am going on vacation see everyone in 6 weeks.
                                                                                                                 Susan
Title: Re: Angus Post
Post by: Larry H on July 30, 2006, 04:46:25 PM
Angus:

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

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

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

Larry
Title: Re: Women Speak Out about Peyronies Disease
Post by: Christine on July 30, 2006, 11:05:19 PM
We will get our kicking boots out Larry.   Will try to be gentle.
Title: General Discussion (in the Ladies Room)
Post by: Liam on August 17, 2006, 06:19:28 PM
Every time it comes up as an unread post, of course, I click on it.    DOH   :::ala Homer:::

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

I'll never learn!  ;D

Liam
Title: The Ladies Room
Post by: BLBC on August 17, 2006, 06:35:18 PM
Liam, I'm not sure you or any of the men here are ready for the ladies board! Women in general are not embarrassed nor timid when it comes to speaking their mind.... IMHO no topic is taboo, but that also flows over to the rest of the site as well. Trust me when I say I have been a very good girl in restraining myself with my postings in both areas. (pat's myself on the back as I pinch a tush or two...)

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

The ladies board is why I checked out this site and I will be forever grateful for it and Christine!
Title: Re: Language clean up
Post by: Old Man on August 17, 2006, 09:49:47 PM
BLBC:

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

Old Man
Title: Re: Women Speak Out about Peyronies Disease
Post by: Caring on August 18, 2006, 12:09:25 AM
True True.
I am very grateful that we have a women's only room.
We truly are here to learn and support our men, but am thankful we have a place for venting, and woman support.

Thankfully, my DH has curbed my typing tongue a few times or I may have reverted to merchant marine language in some of my responses occasionally. Dont really want to do that.
Title: Re: Language
Post by: Hawk on August 18, 2006, 12:33:02 AM
I have no doubt after 26 years working in prison systems and 5 years as a street cop, I could even make some of you guys and gals blush.  I am not concerned with us being offended.  My concern is providing a forum where all people needing help feel comfortable in their desperate search for that help.  We may have many old Navy men and prison hacks here, but we also have pristine house wives desperate to help their 23 yr old husband with a confusing, embarrassing dilemma.  We have mothers showing this site to their sons.  Since toning language down does not offend us, it seems like the only compassionate thing to do so we don't offend the few.  Our goal is to include more, not less, to have a site that doctors will feel confident in referring patients and their partners.  Check the AU site or other similar sites.  While they deal with body parts and functions every day, and even though they too have worked in prisons and other unrefined settings, they display blunt honesty without displaying gratuitously vulgar dialog. 

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

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

We should always remember what brought us this far and be true to those principles.
Title: General Discussion/Ladies Room
Post by: Liam on August 18, 2006, 05:10:24 AM
The reason I click on it is because I don't read the part that say Ladies Room  :). I am afraid to go in....VERY afraid  :o!

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

But, I will probably still click that link.   (Does someone have a Duff Beer they can pass me?    DOH!!! )
Title: Re: Women Speak Out about Peyronies Disease
Post by: zigwyth on August 18, 2006, 04:18:16 PM
I would personally like to thank my new love(Lady Lisa) for coming into my life and proving that women can be ultra supportive and compassionate with us men who are afflicted with this Peyronies Disease. And a  resounding Thank you to all you other ladies here. O.K. I'm walking away, turning my back, now you ladies can start talking again. :D
Ziggy
Title: Re: Women Speak Out about Peyronies Disease
Post by: Lady Lisa on August 21, 2006, 07:08:26 PM
I posted this on the ladies only site and Zig encouraged me to post it here I hope that's O.K.

While I'm new here bare with me please, not sure sometimes if I'm using this forum correctly so I'm just going to dive in. Someone mentioned something in response to my introduction that I'd like to address[probably very casually] never the less. She said she couldn't understand why this condition is embarrassing to men. I think it's very important that we do understand why it is so embarrassing to them and to validate their feelings on this. Men are raised to believe their penises are an extension of their manhood and even their livelihood not only in todays society but through the ages so it becomes a very deep seated belief. And can be very difficult to overcome. Also when they do muster up the courage to go to a doctor for help they're not given much help because the medical community hasn't taken this issue seriously. They have extreme guilt and insecure fears that they may never be able to please a woman. The closest example for a woman I can think of is how we would feel if we lost a breast and there was nothing there but scars. Given those circumstances I would pray for a tender, loving, and understanding man in my life. Thanks for listening hope I didn't offend or alienate anyone.
 
  P.S. I would like to Thank My wonderful and adoring man Zigwyth for coming back into my life, you fill my life with so much joy and affection and bring me and my kids blessings everyday. Your Love Lady Lisa :-*
Title: Re: Women Speak Out about Peyronies Disease
Post by: Blink on August 21, 2006, 08:32:43 PM
Lady Lisa, thank you for your post. I believe you hit the nail on the head. I, myself thought of what it would be like to get into the dating scene again. I was horrified to think what would happen if the night was magical and then when it came time for romance, ...........  I'm not a vain man, but you are right when you say that men in general are penis oriented. My wife and I are going through a divorce after 29yrs of marriage. It was her idea. She said she was no longer happy, and needed to find herself. I can't help but to think my peyronies had something to do with it. I do not think that my wife is that shallow, but the reality of peyronies still has me thinking that. I try to look at the bright side of everything. Things could be a lot worse! At least I had the oppertunity to have children. I had a lot of good sex. There are people out there with much more dibilitating injuries and afflictions than mine. I thank God that at this stage of the game, all I have wrong with me is peyronies. I don't think your statements will alienate you from the guys, if it does, they are either in deep denial, or very shallow people.  Keep the Faith...Blink
Title: Long Live Lady Lisa and Zigwith!
Post by: Angus on August 21, 2006, 09:07:15 PM

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

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

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


Title: Re: Women Speak Out about Peyronies Disease
Post by: zigwyth on August 22, 2006, 01:37:13 PM
Thanks Blink and Angus for the positive and caring remarks. Thank you LadyLisa, and the other women that are here by our side. It means so much to us to have Brothers and Sisters in this battle. The emotional toll that this can have on the men as well as their women is something that's overwhelming and hard to explain to someone that doesn't have to deal with it. I myself can be in a very positive mood one day and the next day, let this completely bring my spirits down. I know for now, I don't have it nearly as bad as some of the men here have it and I will pray with all my strength for those men and a treatment for us one day. And as Blink always says" Keep the Faith".
Zigwyth
Title: Of course we are angry, depressed, and embarrased... normal people would be!!!!
Post by: ComeBacKid on August 24, 2006, 02:54:22 PM
Lady Lisa,

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

ComeBackid
Title: "Coming Out" to your girlfriend ;)
Post by: IrishB OCD on November 05, 2006, 11:59:19 PM
I had to put a little jest in with this post because my last few posts have been so dramatic.

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

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

What do I say?

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

Thanks
Title: OCDIrish
Post by: ComeBacKid on November 06, 2006, 12:10:28 AM
I can speak from experience having gone through the high school and college dating years and still being only 22(soon to be 23).  My friend, your moving to fast, foreplay on the second date?  Man you must have a lot of game dude.  I wouldn't say anything until you have a good trust with this girl and she is your actual "girlfriend," cause it sounds like right now you are only in the dating stage.  You need to take it easy man, try not to think about your penis so early on, I know this is hard to do.  You need to get to know this girl and then go from there.  I know I wouldn't recomend bringing this out on the second date, you may very well scare the girl off.  I do know however that the one girl I told about my peyronies didn't even care  at all.  I waited until I knew this girl for a year to inform her.  The biggest problem with telling a girl so soon is they think "disease," and think this means they can get it, hence you scare them off.  I think having peyronies will change your game plan around, if your one who wants to hook up really fast with a new girl, or go around and hook up with a lot of different girls, this will be tough to do.  You will have to find a nice decent girl, and get to know them first.  Then tell them very casually, maybe even make a joke out of it.  If you just had a 35 degree curve or less I'd tell you not to say anything at all, cause a lot of girls think some curve is just normal.  You said your curve is 80 degrees even after surgery?  Did your doctor even say you could have sexual contact or masterbation, let alone a rough handjob by a girl?  Weren't you the one I just advised to take time off sexually and let your penis heal before you do anything?  I think first things first man, you have to let your penis heal, if this means no sexual contact for awhile so be it, you can't risk rupturing more sutures or causing more damage or your curve may get worse my friend.  Let it heal, date the girl, but take it slow, don't go for sex so soon, wait it out, maybe you won't even like this girl once you get to know her anyway...

ComeBackid
Title: RE: OCDirish
Post by: IrishB OCD on November 06, 2006, 12:17:53 AM
Yah i know.  Actually I was planning on not "recieving" anything.  And no this probably won't happen on the second date, but I just want to know for when it does come up eventually.  I don't know how long that'll be but we've known each other for a little while before we started dating so it's not like we're strangers.  But per your advice actually I wasn't gonna recieve anything as I said, but I wouldn't be against going to that next level, and just having it be all abotu her even this week, but It will probably be later...but to be honest that's up to when she's ready...I already am.

I just want to be ready and knowing what I'm gonna say before the moment arises.
Title: Almost Moved Post
Post by: Liam on November 06, 2006, 06:50:43 AM
I almost moved the last three posts to "psychological aspects".  But, I think Irish was asking some of the ladies for advice on how to tell a girlfriend about Peyronies Disease.

Any opinions from the ladies (loaded question I'm sure) ;).  Please be honest.
Title: Re: Women Speak Out about Peyronie's Disease
Post by: IrishB OCD on November 06, 2006, 02:20:38 PM
Hit the nail on the head Liam.  I PMed Christine and she recomended I posted here to get a response from the ladies.
Title: Re: OCDIrish
Post by: ComeBacKid on November 06, 2006, 03:11:15 PM
OCD,

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

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

What do I say"

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

ComeBackid
Title: ?
Post by: Hawk on November 06, 2006, 04:09:10 PM
Nothing quite so beautiful as a relationship built on a total crock of BS.

It would be nice if instead of guys giving a guy's view of what women want, if some women would actually speak for themselves with some honest, blunt input since this is their thread for communication with us.
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Christine on November 06, 2006, 06:20:55 PM
ocdirishboy,

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

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

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

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

Blessings to you and good luck.

Christine.
Title: Re: Third date....Rico
Post by: Caring on November 06, 2006, 09:48:23 PM
Quote from: Rico on November 06, 2006, 03:46:45 PM
Be ready, women are third date...they all have...

Rico,
What planet are you on?? Not every woman has black undie garments and are panting to have some guy maul them on the 2nd, 3rd or even 7th date. Granted,some girls will lay down for anything, but is that what you REALLY want for a lasting relationship?
You know, you aren't talking to a locker room full of guys here, please show some respect for us all.
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Tim468 on November 06, 2006, 10:09:09 PM
OCD...

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

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

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

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

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

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

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

Tim
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Christine on November 06, 2006, 10:55:30 PM
Well put Tim!!    If you are looking to estabish a long lasting and loving relationship with a woman, the best way it to get close to her heart and mind first.  If you are just looking for cheap sex with someone you not only don't know well but probably does not care all that much about you, well it is a dangerous game that you are playing there and will lead you to nothing but heartache if not a whole lot worse. 

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

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

Blessings,  Christine
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Caring on November 07, 2006, 02:18:52 AM
I read a lot of things on this forum, and rarely do any of them get my hackles up as the posts about black panties and bras did. I notice now, that that post is edited or missing, but was not edited before lots of us read it.
If I was offended, so will others be, and this forum needs all the women it can get coming here for help. If we find that men are bashing women, and making statements that we are to be used and degraded, then no new women will come, and those we do have will stop responding or coming here at all. YES, it pissed me off!!
Freedom to say what you wish about yourselves,  your circumstances and your penises only helps us (women) better understand what you guys are going thru. When someone, male or female asks for advice, then we all expect to have that assistance given without degrading anyone! You guys want cheap locker room talk, then keep it in PM's.
Title: Misdirected Conversation
Post by: IrishB OCD on November 07, 2006, 02:46:46 AM
Hey Guys I'm so sorry.

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

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

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

As always thanks to everyone.

OCDirish
Title: Re: Old Men Speak out about dating/sex early
Post by: Old Man on November 07, 2006, 09:09:04 AM
ocdirishboy:

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

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

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

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

Good luck to you and take care.

Sincerely, Old Man
Title: Re: Dating with Peyronies Disease
Post by: Caring on November 07, 2006, 10:33:28 PM
OCD,
My husband and I dated for 3 years before we got married, and we have only been married for a year.
He has had Peyronies Disease for about 14 yrs or so. During that dating time, when it came time for more intimacy, and it wasn't early in the dating, he never mentioned anything about it. At some point, I asked what had happened, and you would have thought I shot him or something. That was the ONE question he was more afraid of hearing, but for him to open up and tell me all about Peyronies Disease, no way, that wasn't going to happen.  He was terrified  that I would walk away once I knew he had Peyronies Disease. He had resigned himself to a life alone. Only he could tell you exactly how he felt.
He wouldnt talk, so I researched the subject, and confronted him with what I knew. What he hadn't taken into account was the fact that I had already fallen in love with him. The WHOLE person. You see, we formed a loving relationship before I even knew what he had. By that time, well, I wasn't going anywhere. Yes, we deal with Peyronies Disease in our lives everyday, as a couple, and we know there may be another episode at some point. If so, we'll deal with it. If we didn't have that loving bond though, all the good sex in the world wouldn't mean a thing. Peyronies Disease, yes, it sucks for us women too. The love is the thing that holds it all together. Peyronies Disease is NOT a big deal!!!
Title: Right Woman and Right Man
Post by: Liam on November 08, 2006, 06:32:04 AM
So true, Caring.  If Peyronies Disease is important enough to scare someone away, she is not the right woman.  That fact would have shown up later in the relationship due to some other situation even without Peyronies Disease.  Love and commitment put every problem in perspective.

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

Liam
Title: Re: Women (don't) Speak Out about Peyronie's Disease (until it's too late)
Post by: Hugo M on January 06, 2007, 02:07:23 PM
Hello all, I'm a new member and this is my first posting so I probably have all the protocol wrong.
Briefly my story is this.
I developed peyronies about 6 years ago, I'm now 65 my wife of 15 years is 45.
When it first became appeared I was scared and embarrassed but we seemed to get by without penetrative sex which was at the time too painful.
After it stabilized at about 75 degrees upwards we could manage sex but not very often and because of the embarrassment and feeling of inadequacy on my behalf we didn't discuss it, also we seemed to have a happy and contented relationship (we have two kids 12 & 13). A year ago it became apparent that my wife was really feeling the loss of intimacy so I became pro-active and bought some 'toys' which after her initial shocked rejection seem to improve both the quality and frequency of our relations.
However things slowed down again because she was less and less keen. Then, bang, after I came back from a trip and was really feeling motivated we made love but as if something snapped in her mind she became upset. The following day we had a discussion and out it all came. This wasn't the man she had married, she didn't love me in the same way any more, had been thinking of leaving me etc. and peyronies is the major cause After a long and painful discussion she agreed to stay but with no sex.
This was 4 months ago and since then I've tried everything to woo her back, get her to join me in counselling etc but without success.
Now after a dreadful Christmas when she said she wanted to leave with the kids and start a new life abroad, I've ended up on antidepressants, Valium etc and am really desperate on what to do next.
After reading all the postings about understanding women I'm sorry to have another side of the story. By the way I have introduced her to the site ans suggested she joins the womens forum but she is basically not interested and wants out.

Any suggestions would be welcome, thanks for being there.

Hugo M

Title: Re: Women Speak Out about Peyronie's Disease
Post by: swimfly on January 06, 2007, 02:55:28 PM
Gee Hugo,

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

Best wishes,  Swim


PS: It would be from my cold lifeless hands that my kids would ever be moved "abroad"!!!! OOPS, sorry, lost it there for a second. I don't know the situation. I really hope for their's and YOUR sake, that it does not happen. Kids are so in need of both parents at 12 and 13.
Title: Hugo's story
Post by: Tim468 on January 06, 2007, 04:33:34 PM
Dear Hugo,

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

You asked for suggestions so here they come.

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

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

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

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

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

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

It's nuts.

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

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

Tim
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Christine on January 06, 2007, 11:45:57 PM
Hugo,

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

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

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

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

Blessings to you,

Chris
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Hugo M on January 07, 2007, 04:56:40 PM
Thanks to you all, Swim, Tim and Chris.
It is certainly a help to know that you are all out there, understand what it's like and have been through it too.
Of course there are other issues but honestly after 15 years together I thought we were in really good shape until this thing exploded and it all came out.  Every time we discuss it it always comes down to Peyronies Disease in the end.
The idea of therapy is great, this is my second marriage, hence the age difference, I went through it with my first wife and as a result we are still good friends and have family reunions with her husband, my wife, our two grownup kids, grand kids etc.
In the current crisis I've been pushing for it since the whole thing started but up to now she has always refused. However I've just gone ahead and booked a first appointment for this week and told her that I'd really like her to come. Judging by her reaction, when I told her, I think she will which will be a really positive step so keep your fingers crossed.
I'm on the other side of the world on a business trip for a couple of days so I'll post something next week.
Hugo
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Susan Wells on January 21, 2007, 11:07:22 PM
Hello, everyone, I haven't posted since July.I have been on a roller coaster. We got back from our vacation in Aug., and my Mom who is 83 has been very ill. My sister and I have become her caretakers. She has been admitted to the hospital 5 times since Aug. We have been in the process of figuring out the medicare system and what services she can get. This has not been easy as our ideas of how to best help Mom are not always the same. Caring and doing everything for an elderly parent has put a new perspective to my life and put Peyronies and other such aliments in their place. She has a laundry list of aliments and disorders so we are at one doctor office or the other almost every week.
     I noticed that a subject seems to be lacking on this forum. I have avoided  it because of maybe offending someone, or maybe I wanted to be politically correct. I did not tell all of you what was the major factor which turned me around when I felt like I could not deal with his isolation or Peyronies. Where is God on this forum?? I hadn't gone to church in maybe 10 years when my husband got Peyronies. I Tired dealing with it myself, then doctors and more treatments, then more doctors, then therapy for me. Then I decided before I was about to run away and leave my husband and my life for I don't know what, I decided to go to church. It did not exactly happen over night. I was driving to work one morning planning my escape from my whole life when I happened on a radio preacher named Greg Laurie. I felt like he was talking to me. I had tried to fix everything in my lfe and my life was a mess. I hated everything and everyone, I just wanted to leave. I cried all the way to work. I decided to give God a try and he has been walking with me ever since.  Life as I have learned is not designed to be a paradise and if you are looking for one you will never find it. None of us are designed to withstand all that life can dish out to us alone. We need a God to lean on and to turn all our troubles over to. We are just passing through this world and our stay is just a brief moment in time. We see ourselves more important than we really are. I was baptized in the Pacific Ocean in Aug. 2004.I am not some kind of bible thumping Jesus freak, but I take my conversion seriously because, although, my life is far from perfect, I am able to cope with it all and still feel joy and have a feeling of contentment. My husband's favorite saying is happiness is not getting what you don't have, but being happy with what you do have. What I have is a pretty good husband who happens to have Peyronies, and some other maladies besides. Somewhere in all this pain I found acceptance of my situation. I continue to pray and ask for guidance and strenght in all my problems. One of Pastor Greg's favorite saying is, "That there are no atheist in a foxhole."  We are all looking for something I believe, and I found it in God. Maybe you will too.

                                                 Love to all Susan
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Christine on January 22, 2007, 10:04:47 AM
Hi Susan,   Glad to see you back again.  We have missed you!   And yes you make a great point about faith and how it can carry us through during these very trying times of dealing with this condition.  If it wasn't for my faith in my savior, Jesus, I can say that I would never have made it this far in dealing with my relationship or life in general.   Continue to seek His wisdom and comfort and you will be amazed how better each day will bring.

As far as the topic on this forum, it has been not addressed due to the fact that we are a vast community here with many different beliefs and in respect to the guidlines set forth, discussion of religion of any kind is discouraged here on the main forum.  However, if you want to PM me or bring this discussion to the Ladies Room, I am sure that we can toss the topic around a bit.

I am sorry to hear about your mom and I will add her as well as yourself to my prayer list. 

Blessings to you,

Christine
Title: Re: Women Speak Out about Peyronie's Disease
Post by: RiseNShine on February 13, 2007, 11:38:47 AM
Good Morning!
I just found this board and was very excited that there was a "womens" section because I really need some good sound advice.
I have a very unique...or so I think..situation. Late last year the "love of my life" called after 13 years. We had been involved in the early 90's for over 3 years and he pulled a "Cut & Run" that devastated me for quite awhile. He did call me several times afterwards...he had moved back to his home state... but I was still so hurt and angry by the supposed rejection the conversations were not pleasant on my end. I think I broke my phone hanging up the last time :D Fact I'm sure i did.

We are now in our early 50's and much has happened to us both over the years, each with a unsuccessful marriage well behind us and now each dealing as home caregivers he for his elderly mother and me for my 27yr old physically disabled daughter(her injury happened after he left) as well as being single parents.

He's been divorced for 3 years and says he's had my phone # for over 10 yrs. While he was married he says he called my at least a dozen times but hung up before anyone answered... then again after the divorce not knowing if I was still married. He said it took 3 beers ...he rarely drinks...to get the courage this time and almost hung up when my teenage son answered but asked for me anyway. I can tell you a day never went by that something didn't remind me of him.

When he called it was as if the 13 yrs had totally evaporated. We talk once or twice daily and plan to reunite sometime this spring. The logistics of travel and as caregivers have actually been a blessing because we've had a great chance to talk, think things over & reconnect and I can tell you there is nothing that hasn't been discussed. Which brings us to why I'm here. Within 2 days of his first call he brought up his Peyronie's which he has been dealing with for 2 years. I specifically asked if this was a factor in his divorce and he says no as he wasn't diagnosed till a year after the divorce was final and they had been estranged for 5 years prior to that.I will have to trust him on that but it honestly doesn't matter to me.
I have sent him any and all info I could find because it really is very difficult for him and I can feel his pain and the wistfulness of how we were years ago. He continues to go to his urologist and they did an unsuccessful procedure on him 12 months after he was first diagnosed...it sounds like they did a excision of the plaque that further bent the penis ..he says it is literally an "L"  and the plaque has returned...which sent him into a deep depression that he is being treated for...he also sees a therapist. I've dealt with so many medical issues with my daughter that I am very comfortable dealing with "situations" so there is no fear or rejection on my part.

When we finally get together...probably next month for his birthday...I need to know the best way to make this easy for him. Will we be sexual? That is probably my biggest question..I don't want to do anything that would cause him to feel rejected or less than. If we are how? So any and all information would be appreciated.

Thanks
Melissa

Title: 13 years and maybe sex..
Post by: Tim468 on February 13, 2007, 01:55:25 PM
Hi Rise-n-shine,

Several quick thoughts. First the sex part. It might be worthwhile to discuss this up front. Perhaps you could make a no-sex rule before the visit to remove the anxiety that wondering might engender. OTOH, if you are thinking very romantically about him and he about you, you might need the rule even more! Consider it... I know that I wuold be thrilled to hear a woman say something like:

"I am really anticipating your upcoming visit, and I have been fantasizing about sex together and how good that could feel. But I am also anxious about rushing that part of our relationship and us screwing up by moving too fast. I'm also worried that you might be real anxious about how we might do with sex because of the Peyronies. Would you be willing to make a pact NOW that we will not have sex (though it might be real fun to come close!) during your visit to give our relationship some time to grow in closeness - especially given our past?"

For me to hear that would be very relieving, because it would remove the concerns about performance and acceptance. Moreover, it would confirm to flirty aspects of the dialog and excite me to know you wre even thinking of that - often women are not as clear about their desires as they think they are, and men are often in the dark about her desire.

Finally, it might be worthwhile to look at the reality of why you did not persist as a couple before you jump in. There is often an imagined euphoric recall of prior events that skims over the negative feelings at a time like this. You might recall the infatuation you felt, but forget the arguments or the pain. Here is an on-line article I found through google about this topic - might be interesting.

http://www.aarpmagazine.org/lifestyle/Articles/a2004-07-20-mag-oldlove.html

Tim
Title: Re: Rise-n'-Shine
Post by: Hawk on February 13, 2007, 05:48:32 PM
Welcome to the PDS Rise-n-shine.  As a new member I want to thank you for your post and make sure you are aware of the difference between the 'Women Speak Out" topic (this one) on the main forum, and the PRIVATE, FEMALE ONLY section that only registered women can see.  Christine has added you to the Private Women's Forum" so you now have the option to post in both places.  The only reason I mention this is to assure you understand the differences in the privacy of the separate areas. 

As men, we appreciate input from the women and hope we can offer useful perspective to each other that we can never get alone.  I think you can see the benefit of this from Tim's response.  Women are welcome and encouraged to post in all areas of the forum.
Title: To Tim & Hawk
Post by: RiseNShine on February 14, 2007, 11:16:27 AM
Thank you both so much for responding.

I had read about the women's site but at this point I'm more concerned about him than myself and am looking for a man's perspective on how one copes with relationships. I am sure there will be a time soon enough were I'll need advice from my own camp.

Since he has been dealing with it for several years and I am essentially new on the scene even though we have history,I thought it unbelievably brave of him to throw this on the table so early. We had agreed that we would only speak truths and I believe we have.We didn't break up because of other people but his fear of commitment...which apparently had resolved itself 6 mos. after he left the state...that was the phone calls that I wouldn't let him get a word in edgewise... because I was still smarting at what was my very first "rejection". Pride & Love are like oil and water.

With a 13 yr gap between our last phone calls and 14 yrs since we've seen each other I find him to still be the same person, older of course but still pragmatic as hell....
which I loved until it worked against me ;D

Anyway thanks and any of you guys that have any more tips...they will be "muchly"  ;)appreciated
Melissa
Title: Re: Women Speak Out about Peyronie's Disease
Post by: harchunk on February 18, 2007, 08:17:12 PM
I myself was just diagnosed w/ Peyronies Disease and you will find out that you learn to apreciate even more all aspects of being intimate.  Oral sex, foreplay etc...... ;D



Quote from: RiseNShine on February 13, 2007, 11:38:47 AM


Quote was removed for duplicating a post by quoting it in its entirety.  Quotes should be confined to quoting the specific portion of a post one is responding to.  Hawk
Title: My husband won't let me love him, what should I do???
Post by: Chichibug on February 22, 2007, 12:49:48 PM
hello to all of you, and thanks for reading.

I have been lurking on these forums for awhile, and have just signed up under the women's only area...  and as good as that forum is, I can't get a man's opinion there.

my husband and I have been married for 7 years, and dated about 2 before that.  he wanted to be sexually active with me at the beginning, and mentioned that he had peyronies (there was an ever-so-slight curve).  after that he really became distant over the years, as this condition progressed.  we are now at the point where we qualify as a sexless marriage.  (we can go from once every 6 months to once every 3 months... it is deeply depressing and lonely to me.)

I love my husband.  I love everything about him.  i mean EVERYTHING.  he is awesome, amazing, beautiful, brilliant, giving, etc., etc.,...  but he won't let me love him.  I am kept at a distance.  kisses are nothing more than a peck (the same as he'd give his mother or sister).  hugs are sideways and short--and if I hold on too long, I get pushed away, with a pat on the head.  I am dismissed, ignored, chastised, teased, etc., when I try to get close--not even asking for sex, but just touching in any way...  there are times that i revert back to using humor (i am the ultimate jokester) by flashing him or touching him out of context--but i get told 'you're funny'... dismissed again. 

when we do have sex, I tell him that I LIKE the curve--and it is true, true, true...  it 'touches' me in a great way--and it's like we are made for each other.  I don't know if he doesn't believe me or what, but he doesn't respond, and it certainly doesn't encourage more sex... 

he doesn't talk about this.  he gets cards from the urologist reminding him that it's been x years since his last appointment, and he throws the cards away.  the doctor (this was at least 5 years ago) prescribed to him the vitamin e I read about here... and it just made him really sick and didn't do any good anyway...  I think he doesn't see any hope. 

I told him that I found this site, and forwarded him some info on one of the docs here... I emailed it, and then as I pressed 'send' i felt like I had invaded his privacy and felt bad, so I called him to warn him of the incoming email... I asked his forgiveness for sending it... and told him I didn't want him to be mad... he said that he wasn't mad... and said he thought this doctor sounded good.  but that was over a week ago and there has been no mention nor action since. 

so here I am... I have questions, but can't ask my husband...

does peyronies hurt?  I mean, does sex hurt?  after sex?  I certainly do not want to hurt him.

does peyronies make it impossible to ejaculate at times?  difficult?  painful?

does peyronies lower your desire?  (I know he had active sexual relationships before me, and it seems like it's only me that he's had the lowered desire with...  I keep thinking it's ME.  I am disgusting, repulsive, fat, whatever...  but I am told by friends that i am not any of these things...  I am 5'9", 130#, size 6...  not ugly--but i feel that way--, etc...  but that's another thread.)

is there hope???  any real hope???  it's been years since its onset, and it has definitely changed him physically.  it's a complete left hand turn now...  but I must say, it's absolutely beautiful to me.  (sorry if that's too graphic)

how can I tell him/show him how I feel?

oh, and the added 20 dollar bonus question:  I bought some sex 'toys', on the advice of a friend... I thought he'd enjoy the added spice, but now think better of even telling him I bought them.  should I keep them to myself?  I would hate to have him think that these 'toys' are somehow a replacement for the real thing... 

thanks for reading, thanks for understanding, and thanks (in advance) for any replies I might get.

sincerely,
Chichibug

ps. if he comes here, he'll know who I am... my screen name is a dead giveaway... if you see this, dear husband, I LOVE YOU and want us to be close again.  I miss you.  I want you. 
Title: Chichibug
Post by: Steve on February 22, 2007, 02:42:07 PM
Wow, I can feel you pain.  I know what a sexless marriage is like--we were down to once a year until my Peyronies Disease popped up, and that's been 2 years ago!  But that's for another thread.

Reading your story, and from my own experience, I'd like to put in my 2 cents worth.

For me at least, no, sex/erections don't hurt, but I've read of many sufferers who do have pain, at least in the beginning.  It usually goes away with time.  Also, I don't think that there is anything that would physically prevent ejaculation, but there's always that psychological component.

Based on your story, I think that the problem isn't with you, or physically with your husband.  I know that I and many others often consider themselves 'deformed', and unattractive/undesireable to our partners.  Usually (I think) these feelings pass with a loving partner and time, but it sounds to me like you husband is still feeling that he's the one who's not desirable, not you.  Just as you keep feeling that you're at fault "i keep thinking it's ME", I think he's convinced himself that it's him.

If that is his state of mind (putting myself in his shoes for the moment), I think that if he were to find the 'toys', it would just reinforce his feelings of inadequacy, so I'd suggest getting rid of them at least for now.

The best thing would probably be to see a shrink, but the next best thing would be to get him here on the forum where he can talk anonymously to others with the same problems (and some much worse than his, I'm sure) and see how we're dealing with Peyronies Disease.  You might want to find some good posts/discussions, and have him read over you shoulder for a while.  I'd think that once he realized that he's not alone or deformed, that he'd be willing to talk with others here on the forum, and I'm sure that that would go a long way to helping him cope.

Good luck,
Steve
Title: smotherd....
Post by: Rico on February 22, 2007, 02:57:20 PM
Some men don't like being smotherd, maybe cooking a good meal for him and saying something nice is all he wants, and there is nothing wrong with that.... I don't know how old you are, but for me a older woman flashing herself I don't find that sexy..... and a peck on the check or small hug isn't bad either, one doesn't have to play tounge hockey to be kissed right..... I think the problem is more you than him.... get a hobby... most men don't mind playing golf or going fishing ect.... all this wanting to make love all the time or have this great sex life is just more pressure on him, the Lord knows men have enough on them the way it is.... maybe you should look more again at the things he brings to the table instead of worrying over not getting enough...
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Fighter on February 22, 2007, 03:54:23 PM
Rico that was mean! Why shouldn't she want sex no matter how old you are? Don't listen to him! It is not you no matter how old you are! I am almost 50 years old and I love to have sex and be intimate with my wife. My opinion is that maybe he is having ED problems? I know from being on this form that many of us have ED problems from Peyronies Disease? Is your husband in pretty good shape? If not I would suggest that you and your husband start eating well and working out. I found from doing this with me and my wife that when you workout you start to feeling good about yourself and that enhances you bedroom activity. I don't want to say that you and your husband are out of shape but I know from my own experience that this has helped me with this terrible disease. Try it... what do you got to lose?
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Chichibug on February 22, 2007, 04:04:33 PM
steve--thanks for your reply.  I think you're right, he does carry shame and feels uncomfortable with his body.  I will drop another hint about this board.  maybe he will try to at least read here--I don't know if he'd ever post, though...
I have tried to get him to talk to our pastor or a counselor.  he won't...  he wouldn't even bring it up. 
I also agree with you about the 'toys'.  I have kept them well hidden, and ignored the advice to just bring them out...  I think it would be taken wrong.  now if he ever said, 'hey, i'd love to try... (fill in the blank)' and I happen to have the toys right there, then cool.  :)
I am sorry that you felt deformed in the slightest.  we all have 'something' that is different, and there is beauty in those differences.  I hope that things have turned around for you. 
thanks again for your honesty and informational reply.  I appreciate your time, your clarity, and your openness.
--Chichibug

rico--wow, your post really hurt me.  I mean, really.  I don't 'smother' my husband.  not in the slightest.  I cook good meals all the time, and keep an immaculate home.  i say nice things all the time.   I am not the type to say (or even consider saying) anything that is not uplifting or 'nice'.  and 'tongue hockey'?  a peck on the cheek can be a nice change, but when that's 'all' the physical attention you get from your husband, it gets a little (a lot!) stressful and lonely.  a hobby?  I have lots of hobbies.  I have lots of outside interests, and not all of my personal-worth verification comes from my husband.  I do not pressure my husband for anything--not sex, not anything.  I don't even talk to him about it.  I do appreciate what he gives to the relationship and I am often telling him and others how totally proud I am of him (i thought i had clearly illustrated this in my post).  and not getting enough???  two or three times a year--do you consider that a reflection of a healthy marriage?  not two or three actions of 'intercourse', but two or three times that we are even close physically?  and of course you meant to hurt me with your post when you addressed me 'flashing' my husband.  I am often taken for a college student and am still carded.  I know that I am sexy and fun--and that's the message I am trying to send 'sexy and fun' to my husband when I do this.  (you act like I do this all the time...  I do this once in a blue moon...)  I don't understand why you posted this angry message to me.  you think this problem is more me than him?  ouch.  I suppose your post is just the reason I haven't posted or talked about this with anyone.

oh, and i am in my 30's.  my husband is in his 40's.  not that that matters.

and my husband has hobbies, too... 
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Chichibug on February 22, 2007, 04:13:22 PM
hi fighter,
thanks for sticking up for me.  I am SO glad that rico's wasn't the first (or last) reply.  I would have never come back. 
both my husband and i are in really good shape.  we eat really well, and get a moderate amount of exercise.  his job allows him to spend some time in a gym, but lately he hasn't had time... so he's been walking a lot. 
I would love to be able to 'talk' to him about ed and the peyronies.  I think after learning more of your perspectives here I will be ready very soon to just start talking and tell him all i have learned here. 
my husband and i are usually doing projects together--this is fun for both of us.  we built a huge greenhouse, a woodshed, and plant trees around the property.  we are always doing 'home improvement' projects and right now are planning another addition to the house.  we work well together.  like I have said, he is a great guy, and he can 'do' anything.  it's really amazing.
thanks for your support.  I do appreciate it.
--Chichibug
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Fighter on February 22, 2007, 04:33:13 PM
You sound a lot like my wife and I... we are the same we do a lot together and we are in pretty good shape. The only thing that doesn't sound like us is the sex department. My wife and I have a great sex life and when Peyronies Disease came into my life I thought it was going to end my sex life. I have had Peyronies Disease for about 2 years now and in the beginning it did hurt but now it does not. As time went on with this disease some ED sat in but I really tried working out harder eating well and taken supplements. Now the ED does not affect me too much but I think I owe that to this form because there is a lot of information here and it really did help me. I would try to get your husband to start reading about the different ways you can fight this disease. On a more lighter note... try surprising him one night with a romantic dinner,wine, ect... when he comes home from work. Then after dinner take him and put on the sexiest thing you can find and give him the most seductive dance you can come up with. That always works for men... we like change... do something different. Guarantee... he likes that! LOL 
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Chichibug on February 22, 2007, 04:49:19 PM
howdy again fighter,
i am glad that you and your wife didn't lose your sex life as the peyronies set in. 
i have tried the plan you laid out--the dinner with wine and sexy lingerie... i threw away all of the lingerie because he didn't like it at ALL.  that was years ago.  maybe things have changed enough now that i should give it a try again...  i have offered to fulfill any fantasy he has (with the one exception of not including other people) but he says to keep things like they are.  i know he is a shy person in this way, but i can't believe that there isn't just one fantasy in that head of his...  ::)  heck, i have some of my own, but he has never asked.... ;)
i will try this plan again.  maybe after that 'works' i'll bring up this board.  who knows?  the timing isn't mine... ;)  when it's right, it's right.
thanks again, and i am sooo happy that you are enjoying your life. 
--Chichibug
ps what treatments are you using for the peyronies?  what supplements?  my husband takes some supplements (mostly just herbal antioxidant types), maybe i can slip in some more for him.  :)

oh, and i have been meaning to say that i LOVE your picture. 
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Fighter on February 22, 2007, 04:59:06 PM
I will PM or respond later on what supplements I have tried and use. I am on my way out the door. If you go to the "Oral Treatments - Vitamins, Prescriptions,Herb,Supplements" Thread... you can read and get a lot of information on the different things the guys have been trying.

That picture is exactly like... well use your imagination!
Title: Fighter
Post by: Steve on February 22, 2007, 05:22:55 PM
Fighter,
Thanks for calling Rico out on an overly harsh post.  He sounded quite angry at Chichibug, and I'm sure that he didn't mean anything personally (as I'm also sure that he doesn't know her).  I can only assume that he has some issues of his own, and her post struck a nerve.
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Tim468 on February 22, 2007, 07:04:03 PM
Steve, I think that you are right about Rico's post. It was uncharacteristically harsh, but somewhat characteristically too quickly posted.

All of this stuff is hard to deal with and we all deal with it differently. The problem is not sex, it sounds like it is communication. All attempts to communicate directly about this problem, as well as indirect communication are failing to get the desired result.

I would sit him down and explain that your happiness as a couple requires that he give more to you than a peck on the cheek. I would ask him if he is suffering over this or if he believes that this is good enough. If he wishes it was better than ask him if he would be willing to join you in seeking help with it. Then I would look for a couples therapist who speciallizes in sexual dysfunction, because that is what this sounds like.

He may need to have his testosterone levels checked too - too low and one's libido takes a walk. If he can intellectually realize it is not enough even if he feels OK about it, then he might be willing to look into it.

Tim
Title: Re: Chichibug
Post by: Hawk on February 22, 2007, 10:47:14 PM
Chichibug,

Please forgive me for doing something very uncharacteristic.  I am posting to you on this thread even though i have only rapidly scanned the posts since yours and Rico's.  I saw Rico's post right before I left for work and could barely endure not responding.  As we approach 8,000 posts (I am sure I have read over 99% of them) I have never seen a post I was more shocked by than Rico's response to you.  I am glad that you got additional perspectives before I could return and post.

As you can tell from the posts, Peyronies Disease may hit all men in similar psychological ways but since men are not all the same, we react to that impact in different ways and from different perspectives.  I truly felt for you, your plight, and what your husband is going through.  I completely understand that it is because of your respect and admiration of the other things that your husband brings to the table that you desire intimacy with him.  Regardless of your age, if you are even reasonably responsible over your physical condition, a flash should be welcome flirtation that most men would enjoy on several levels.

I agree that communication is the key problem.  Pain or problems ejaculating are very unlikely issues.  Men can easily ejaculate without an erection.  I also agree that the toys should be his idea until communication convinces you it will be a boost and not a huge, hurtful setback.  If he suggests it and you pull them out of the closet, that is a risk.  Until communication is established, you cannot know if your husband is just suffering from a low sex drive (common in many men without Peyronies Disease), or if he is so distracted by his loss and feelings of inadequacy that he cannot be carried away by the moment.  Maybe it is neither.

In addition to the normal advice of: have him come to the forum, go to counseling together, cultivate conversation about hopes, dreams, goals, fears;  I would recommend something like reading the book, "The five Love Languages" together.  My wife is a visual learner and i do great as an auditory learner so in our case, she often reads and I listen, then we discuss.  Though we have read many books together, that book ranks very high as one that gave me a compassionate tug over things I had been inconsiderate of.  I am referring to things that in no way related to Peyronies Disease, but the point is that reading and discussing this book generated deep thought, consideration, and communication, between us.  Since that is likely a component of your marital issues, it may be a catalyst to renew a more psychologically intimate relationship.  If it does, the rest will work itself out.

Finally, read every word of the "Psychological Aspects" topic.  This is a psychological disease and for that there is known treatment and full recovery available.

Thanks for your post and the insight you shared.  It was a huge contribution.


Hawk

PS: Your comments about getting men's opinions on the main forum are true.  Peyronies Disease is a couples disease and we need perspective from each other.  The Ladies Room is here to enhance the support the Peyronies Disease Society provides, it was never intended to segregate us from each other.
Title: The truth...
Post by: Rico on February 23, 2007, 01:07:43 PM
Chichibug:

I just want to say I'm sorry if  you took my post as a attack on you. I just wrote what I felt from my point of view. Sometimes less is better. People on here  can say, oh put a stripper pole in your bedroom or wear this or that, but I disagree with this.

Peyronies isn't always the problem also, today over 50% of marriages have problems with sex or intimacy, one of the couple seems not to be getting what they want, and between 10 to 20% of all couples say they don't have sex.... so once again I don't think it is a just a peyronies issue....

I do believe in tough love also, I know that men sometimes don't feel comfortable talking about some issues, and probally wouldn't want there spouse to be putting information out in public without them knowing it, this is a trust issue.... I know you say nice things also about your husband and are trying to save your marriage.... I believe in my heart what I told you with a pinch of salt might be some of the better advise for you, or I wouldn't of said it. People are like mirrors, what they reflect will be reflected back to them.... one can feel a sense of not being content from there partner, and this can drive them farther away... it is not your fault or your looks or anything like that and you have to remember this..... maybe taking time to discover something new you always wanted to do and let this go for now and give him space, step back and adjust might be better for the relationship.... if you drag him to consoling, it could back fire, but then you have to say, I'm willing to walk away from the marriage if I can't resolve this, for it might come to that....

You have to also understand that men have different degrees on peyronies and supplements aren't going to cure a bad case.... I'm sure at this time also your husband feels that he is not meeting your physical needs and emotional needs..... I know you can't fake this, so at the end of the day you have to say, if it doesn't change, what will I do.... for there is a good chance it might not....  remember again it is not you, life gets in the way sometimes... some people show love different also.... I would think about buying a lap dog also, they have unconditional love...fill you with kisses all day.... I do hope in my heart that you will find peace soon within yourself about this matter and remember it isn't you and many people find this in there marriages.... it seems we always want what we don't have also, and sometimes what we really need is right there but we don't see it....

God Bless..

Rico
Title: Re: Aerochick
Post by: Hawk on February 23, 2007, 04:41:53 PM
Chichibug,

I have to thank you for one other thing.  There is an old saying that says silence is golden because it hides so much. 

Thanks for getting Rico to express his true sentiments about relationships and how women should satisfy their needs.  One might wonder why Rico does not advise all of us to buy a lap dog, forget about our broke dicks and stop whining about women not understanding us.  I guess it only works one way in some peoples world.  I wonder if Rico would have the same view of women withholding intimacy from a relationship? 

OK, I am done wondering now  ;D

I am a 57 year old traditionalist and rather conservative, but I for one, place way more value on women than that.  This sentiment makes my blood pump like a good workout.

Please consider the majority view you will find here.

A quote from Rico to stun the senses:
QuoteI would think about buying a lap dog also, they have unconditional love...fill you with kisses all day....
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Fighter on February 23, 2007, 04:46:29 PM
LOL... Hey Rico... I got a little female lap dog and I got to tell you that she just don't make me happy like my wife can? I think Rico has found the solution to all of our problems. LOL
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Tim468 on February 24, 2007, 11:39:57 AM
Dear Chichibug and Hawk and others,

I am not going to defend Rico for trying to say what he says the way he says it. Sometimes I struggle to follow his logic and get confused about it - and when that happens, it is more or less like a Roschach test of where *I* am when I read it...

So here is an alternate view of what I heard him saying; or let me say it in my own way:

When a partner in a relationship withdraws, we may be unable to reach them or to "make it better" no matter what we do. To that extent, we are thus responsible for how *we* feel about what is happening - our partner is not responsible for our pain or suffering. Looked at that way, one can find some things to appreciate and love in a relationship, even while grieving the losses. I heard Rico trying to suggest ways for her to make herself feel better that do not involve her husband changing. Since it is *possible* he will not change, suggesting she find a way to care for herself is not bad advice.

I just think it was spectacularly inartfully given.

A lot of us try to "fix" problems. I could suggest she seek marriage counseling, or decide whether or not to end the marriage, or to have an affair - I could come up with all sorts of "solutions" to her problem. But ultimately, when our partner cannot fulfill  our needs, we have to decide if that is a "need" or not, and if there is anything we can do about it. Sometimes we simply live without that which we want. Rico's "Go tough" policy doesn't work for me, though.

I hope that the communication can get better in Chichibug's marriage. The withdrawal may have nothing to do with Peyronie's Disease - I bet the odds are even in that regard. It could be a million other things, some scarier than others. I'd want to know if he is asexual in general, or if he is simply turing off to her. Is he afraid? Indifferent? Compassionate? There are lots of ways to go forward.

But I think that I would suggest that she start with herself. She can go to a therapist and see what her options are. Sometimes we want to shake our partner awake and say "Can't you see where this is pushing me??" (away), but doing that often simply makes them feel put-upon and angry. So for me, getting help with ME is the first response I have to relationship problems in my life. I hope it can work out for the best, with a happier and wonderful ending.

And you know what? Along that path, a nice loving dog ain't that bad! A lap dog is great in fact - it just is not enough.

Tim
Title: Re: Women Speak Out about Peyronie's Disease
Post by: RiseNShine on February 24, 2007, 04:56:49 PM
Tim, I am going to have to agree wholeheartedly with your take on Rico's comments. That is how I read it and was shocked at the responses.
Sex  is very emotional  for both males and females and with our puritanical streak we walk a thin line of love and hate...we hate that we love it so much.
I'm just curious why Chichibug is upset with her husband...she came into the relationship already knowing there was a problem physically.
We women think we can slap a band aid on anything and make it all better. When it comes to boys and then men we need to realize that just ain't so. I raised my 18 yr old son by myself while dealing with horrible disability issues with his sister who is 9 yrs older. Thank God I found a book when he was quite young that opened my eyes about males...I am the only sister of 3 brothers my ex husband was from an all boy family so I've been observing men for years without ever realizing it and believe men get the short end of the stick because of what society expects from them.
The book is called "Raising Cain: Protecting the Emotional Life of Boys". After reading it, it was like the fog lifted and things I had observed over the years were validated. Males are MORE sensitive that females are but nature has forced them to shield their vulnerability from the get go. Your husband is hurting emotionally that he cannot be all you want him to be, hell he can't even be all HE wants to be.

Love won't cure anything but "compassion and empathy" should be carved in stone on the marital headboard most especially the  peyronie's  sufferers.

I am of course speaking as someone who is entering a relationship with a peyronie's sufferer BUT I have armed my self with as much knowledge as possible and lowered expectations so we can't go anywhere but up! ;D

14 days till we meet and sex is on his agenda...at HIS request.  Who knows what will happen no matter I am prepared for just snuggling in his arms to a crazy erotic adventure. I give him permission to call the shots as long as it's mutual and no one gets hurt. ;D While it's been over a decade since we've been together we feel as though the clock stopped after the last time we saw each other. Perhaps we are fooling ourselves but that will be for time to decide as my eyes are wide open :)


Title: Re: Women Speak Out about Peyronie's Disease
Post by: Christine on February 25, 2007, 11:31:08 AM
I have sat back and read this thread and FINALLY I have had the opportunity and time to think a bit and would like to give you all my two cents on this subject.   I may get change back but that is the beauty of this forum.

Chichi's situation is similar to my own therefore I can not only understand her position but empathize with her feelings.  When you enter into a marriage with a man that you love and adore you expect certain things that would always be a constant in the good times and in the bad times.  This being that you would feel loved by this man and that TOGETHER you will partner to work through the struggles ahead.  Granted this expression of love can take many forms.  For some it can be just verbal or just in the things that one does for the other (ie, work, support, financial) but most women will also need and desire that old fashion expression of love in the form of physical contact.  I am not referring solely to sex in the intercourse form.  I understand that Peyronies Disease does horrible psychological things to a man and causes them to retreat into themselves and avoid anything that would cause sexual stimulation for fear that they cannot complete the task. Understanding the situation does not always make it easier to take from the other side. 

When you are still doing all you can for your husband in the normal sense, like cooking good meals, taking care of the house, mending socks (well I don't do that, I just buy new ones), you question, what do I need to do to get him to pay attention to ME and just take me in his arms and let me know that I am the woman that he loves, that he adores, and that he will cherish for the rest of his life.  You want to be told that no matter what happens, that he will always be there for you and that he does care about the pain that we too are going though.

Here you find a women who loves her man with all her heart and is held at arms length at all times.  You don't get even the slightest touch or emotional encounter.  You don't get to feel his arms around you or engage in a kiss that feels like it's from a man that loves and adores you.  If you get a peck on the cheek on his way out the door, you then count that as your sexual encounter.  When you attempt to initiate some kind of activity you are pushed away and told to leave him alone.    Now at first, a person can take that kind of rejection and understand it's origin.  But after weeks, months, and even years it can start to drain on you.  You hate any kind of conversation with friends when they speak of having romantic evenings with their spouses because you know that can never be with yours.  I used to look away at horrible acts of violence in movies but now I find myself looking away at romantic ones as well.  It is just too painful to see what I cannot have and want so much.   It is very hurtful to feel like your husband (while you know that they do love you) cannot try to see past his own shortcomings and at least attempt to give to you the kind of physical contact that we as normal women would love to have with with a man that we love and adore.   There are no expectations here.  Nothing ventured, nothing gained, But that attempt would speak volumes.  The knowledge that the man cares enough about your needs enough to put his inabilities aside to try to meet them to the best of his ability.   

For better or worse......that is the vow we took when we married.   Therefore, given that we do love our husbands and do not want to leave the marriage, we are only trying to find a way to make this situation go from worse to better in the realm of any kind of emotional intimacy.   

Yes,  I agree that some kind of marriage counseling will be beneficial to the situation but that itself leads to another problem when you are dealing with a man who holds to the theory that you do not air any problems to strangers that lends to a whole other issue.  He won't talk to you....he won't let anyone else help you open that door to conversation.  Where do you go from there???

And for what it's worth....we have TWO lap dogs, and they get far more loving attention than I have received in I don't know how long!  It's sad when I am jealous of them!
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Tim468 on February 25, 2007, 01:34:20 PM
Christine, thanks for your post.

I reread my post, and I hope that I am not coming off as non-compassionate for Chichibug's plight. It IS a plight in that she is suffering in her relationship because of intimacy issues. I have learned the hard way, though, that my healing in my marriage (which ended in her having an affair) started (and ended) with me. In that situation, my wife withdrew emotionally and physically, and knowing she was in love with someone else was terrible; the pain of being replaced is pretty profound. I think the pain of being neglected would be about as bad, IMO.

My point is that Peyronie's or not, she has to take care of herself. If he cannot or will not try to make what is not right, right, then she may have to end the relationship to find her own happiness. But I have also heard of women or men who have stayed in marriages that had lost a lot for other reasons (economic safety, for the kids, etc). I one day came (not overnight) to the conclusion that I could be happy alone, and invited my ex-wife to leave. Now, about 7 years later, I am in a happy relationship and doing well - even though my Peyronie's is actually worse.

I followed my own path, and when I was sticking to the marriage "no matter what" I was thought a fool by many, and when I finally decided it had to end, I was thought to be coming around "too slowly". But for me, the main thing was finding a way to be happy by myself, and that did not depend on her loving me, in the final analysis.

I do not haves a strong "druthers" about Chichibug's marriage - but from what she says, it seems that she is hoping greatly to make it work and to guide it back to a more physical and loving physical relationship. Since that is what she wants - and I have to accept that SHE is the expert when it comes to her! - I must say that for me, the way I got there was by taking care of myself. And I remember vividly being told by my therapist that if I ended up alone, or reunited with my wife, the path was the same - self-care.

Self-care in not mutually exclusive with caring for others (like a mate) but it is the starting point IMHO. From what she said, it sounds to me like Chichibug is acutely aware of this, and is doing a lot to make herself as happy and healthy as possible (which is why I found Rico's post so offensive in its' assumptions about her). I just want to endorse that viewpoint of self-care and to let her know that the paths we walk can be hard and sad at times, but with persistence, and luck, we can sometimes get what we want. So I hope for her that talking frankly to him about what it will require for her to be happy in the marriage gets his attention and that his response is as loving as it ought to be.

Tim
Title: I didn't mean to create this controversy
Post by: Chichibug on March 05, 2007, 07:51:45 PM
Hello All,
Well, after being away from the board for awhile, I gathered up my courage to return just to say that I appreciate all of the feedback here.  I didn't mean to create such a firestorm, and didn't mean to polarize anyone or create any controversy.

I just wanted some facts about how men feel with this.  Physically and Emotionally.  Reasons why a guy would keep someone he loves so far away.  I don't know much about Peyronies, and a lot of what is written here is over my head.  I was hoping to get some real-life perspectives.  I did get some, and I appreciate your honesty. 

I won't ever leave this man.  He is everything to me.  I didn't mean to make this all about sex--it's not about 'sex'.  It's about any form of intimacy at all.  I was wondering if other men had suffered this way, and if so, how did you deal with it?
It's about me understanding how this feels--does it hurt, and if so--how, when, where, and how long? 

My details of my relationship were to provide some background, and to hopefully show you that I LOVE my husband and want nothing more than the best for him.  If the best means that he has to stay distant, then so be it.  It's not a deal breaker for me.  (not for financial reasons, either--but because I LOVE him.)

Yes, I knew that there was something called Peyronies when we were engaged.  It was VERY slight, and didn't pose a problem physically with him.  I had no idea that it would progress.  So to say that I knew what I was 'getting into' isn't true.  I wasn't privy to that information.  Like I said, it wouldn't have been a deal breaker, and isn't a deal breaker, so that's not the point.  I was just looking for information. 

I have heard that some of you have found healing through various means--this is the sort of information I have been seeking.  Personal stories, and ideas on how to overcome obstacles are very helpful.

Christine is right--unless you've been rejected for years without discussion, you don't understand how it feels.  I will gladly deal with this rejection if I know it's this or not have him around.  Like I have said again and again, I LOVE him.  ALL of him.

Thanks again,
Chichibug
Title: Re: Chichibug
Post by: Hawk on March 05, 2007, 08:23:32 PM
Welcome back!


You asked an honest question.  We answered.  There is no need for you to apologize or express regret.  We are big boys and can endure some difference of opinion and controversy between us.  We almost always manage to do so without personal attacks or giving or taking offense.  Some of us simply did not agree or approve of the defensive, blaming, nature of a post.  Knowing the individual, it took us by surprise.

I do wish you would read the entire "Psychological Aspects" topic.  There are some great posts in there that will help you to get inside on the the head of a man with Peyronies Disease.  You will see different perspectives.  We do not all react the same.  I think I could have my penis amputated, and in between bouts of depression and anger, I would still dive into whatever sexually intimate activity I thought my mate was sincerely interested in.
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Tim468 on March 06, 2007, 08:18:25 AM
Hi Chichibug,

Welcome back!

The firestorm here was over a strange response that tried to blame you for what he was doing.

None of us can easily climb into the head of another and say what is "best" for them. for me, if I was involved with a person who refused to be intimate (I don't mean just physically), that would be a deal buster. For me, that would be the one thing that I could not tolerate living without. So it is interesting to hear someone say that would not end it for them. It sure would for me!

Since that is so, it is difficult for me to figure out how I would act if I were in your shoes. What I do know is that ultimatums are not the same as requests. Expressions of needs and desires are where I start. But for me, a marriage means a partnership. For me, that does not mean a one way street in terms of giving. If I felt I was giving but not receiving intimacy, then I would ask my partner if she really desired to be married to me - if she was unhappy or wanted a form of intimacy that met her needs better than I could do. I would see no point in forging ahead if my partners needs were not being met.

I say this because I believe that expressing our inner self is an important part of being alive. If a man cannot express himself, he is guaranteeing unhappiness in his life. Unfortunately, that means that for many men in marriages they are unhappy, and particularly blind as to WHY. Women are often culturally used to responding to men and taking direction from them; men are not and need to learn (often) to be influenced by their wives. But if that is not a two way street, unhappiness is to be your lot in life. I am uncertain what would make you want to stay in that situation, or why that would promote a feeling of "love". But if love is a warm feeling of closeness and intimacy, it doesn't actually sound like you have that.

A terrific link to one of the better people for getting this stuff is at the Gottman institute  - http://www.gottman.com/ . My favorite link is to the relationship quiz - http://www.gottman.com/marriage/relationship_quiz/

and his test for how we make what they call "bids for connection".  - http://www.gottman.com/marriage/relationship_quiz/quiz2/


Maybe something at this site can help you and eventually help the both of you. I will pray for that for you two, because it sounds like you have a solid foundation of affection and respect that could help you rebuild your intimacy.

Tim
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Gator on July 12, 2007, 03:41:35 PM
I received the following message. The sender is a new member and is having trouble posting. Perhaps someone here could respond.

I feel really stupid, but I can't seem to navigate my way through the system to post a comment on the forum Undecided.    Not sure what my problem is.  But here is my question as I think I might need a guys perspective on:

My boyfriend and I have been together almost two years.  We have been sexually active for a little over a year now.  Neither of us have ever been with anyone else nor do we plan to as we hope to get married several years down the road.  I do not ever recall a time were intercourse has not been painful for me or at times uncomfortable for him.  When erect, his penis has a downward bend.  The bend is quite severe, were even the missionary position is impossible unless I elevate my lower half really high up so that he can get in.  And it is is still painful.  We seem to have difficulty with many positions even though he wants to try different things.  It is either painful for me or he falls out.,etc. (sorry I hope this isn't too much information)  Recently I asked him "Why does it bend like that"  he said that he didn't know but it had always been like that.  I started looking on line to find out what might be "wrong" with us.  I came across Peyronies Disease and Congenital Curvature which I think he might have.  How do I bring up the subject and tell him that I think we might have an "issue" without hurting him.  I don't want to hurt him, but I think we need to talk about it.  I am so worried that I am going to say the wrong thing. Can you please advise me?  Perhaps you can throw this question out there for me and tell me what might be the best way for me to handle this.  Thank you so much.

Sorry, I feel like an idiot, I am sure posting is easy, I'm just not catching on to quickly haha!!

Thanks
Title: Re: Man's Perspective
Post by: Liam on July 12, 2007, 04:46:59 PM
First thing, unless you are being intentionally rude and vulgar (which I doubt you have ever been), you can describe whatever you need to without feeling like you're offending anyone.

I am assuming this is to make things better for you in your life together, not a factor of whether you stay together or not.  Because if it is the latter, no surgery or treatment will fix that.  That relationship will fail, regardless.  But, the fact you went to the trouble to post here makes me sure its the first.

There are some cases of the penis becoming smaller (length and girth) as well as other complications related to corrective surgery :(.  Make sure you can live with this before you broach the subject. 

If you are sure, ask if he has seen a doctor about it.  Approach the subject as making the physical act better.  Try to separate physical from emotional.  In other words, let him know whether or not he does anything, you still want to spend your life with him.  Put it out there and let him talk.  Men like to fix problems (I do).  Maybe he'll take the ball and run with it. 

Its not an "issue".  Its a chance to make things better.  ;)

Again (please remember I don't know how you feel) if you can't live with him just as he is, don't say anything.  Just end it.  But, if you love him and are committed to the relationship, do not hesitate to discuss it with him.

Joanie just posted in the Surgery topic.  You can ask her questions about plication.

Good Luck,
Liam

Surgery study pdf file:   http://www.blackwell-synergy.com/doi/pdf/10.1046/j.1464-410X.1997.02988.x

Title: Re: Gator - Memer trouble posting
Post by: Hawk on July 12, 2007, 08:03:07 PM
Gator,

Thanks for assisting this member.  My first concern is with this member being isolated because she is having trouble posting.  Please PM me or have her pm me so Christine or I can help her post.  She needs the support that can only come by feeling free to participate both here and in the Ladies Room.  This link may help her https://www.peyroniesforum.net/index.php/topic,316.0.html

Hawk

To the Lady: I agree with all that Liam said and want to reemphasize that first you have to be sure if the current condition or any worsening side effect from surgery is a deal-breaker for you.  If you are sure you are with him regardless, then you can encourage action.  Obviously you cannot pressure him to do it to keep the relationship or encourage him to do something then leave if it goes bad.  I get the impression that is not an issue for you.

I would ask him,
QuoteDo you feel frustrated because we cannot not make certain things work the way you would like them to?

If he says yes then tell him you to want him to experience the things he desires and that you are excited to help him in anyway possible.  See if he clearly identifies the  problem as being the curve.  If so ask him has he ever researched a solution.  I think it will soon become obvious if he is interested in this or if he is content.  If he is content with the current condition then you have a problem that requires precision communication skills on your part.  I suspect he will respond positively however.  When he does you can offer to help him research on the internet etc.  You could direct him here or simply report back if he wants  to avoid the forum.

Also, if at any point you feel you have revealed more than he is comfortable with on the forum, contact Liam, Christine, or me and we will fix that and anyother forum problem you may have.

Hope to hear back from you. 
Title: Re: Women Speak Out about Peyronie's Disease
Post by: lynn on July 12, 2007, 08:09:13 PM
Thank you for your response.   No I will never leave him  :o !!!  I love everything about him and us.  I want him to know we are in this together.     I hope you didn't mis-interpret me, our intimate relationship is wonderful in many many other aspects its just when it comes to actual  intercourse it can be a bit uncomfortable and then becomes a bit awkward.  I just don't want to hurt him, that would not be my intention so I have been apprehensive about talking to him about it. We are both young and I want to go about it the right way.  Its just hard telling him that I think there might be something different ( I hesitate to say the word wrong) and that I think he should speak to a DR.  Which I think will be hard for him to do in the first place let alone that fact that we are young and 20 & 21 years old.   Whatever his decision, I will support him.  I have read about the surgical options and how it could effect his size and I would never ask him to do that especially not for me.  Whatever his decision, I will support him.  I just want to make him aware of it and then go from there.  Thank you for your help.
Title: Re: Women Speak Out about Peyronie's Disease
Post by: lynn on July 12, 2007, 08:25:00 PM
Hawk,

Saw your message, I think if I stay on this page and keep replying this will work.  I think I am doing this right now??
I would like it to be so much better for him.  I mean he reaches orgasm but it just seems hard on him.  He is always asking if I am ok, is he hurting me etc.  I will definetly take your advice and see if feels that the curve is our problem.  I do want it to be the best it can be for him.  In the meantime till I get up the courage to talk to him about it I will try to find a position that we are both most comfortable with. 

I have recently read something about Du????? Something that is on the right hand that goes with Peyronies Disease?  Does this make any sense to you?  What is this and is it something I can look out for?  Thanks

Title: Re: Women Speak Out about Peyronie's Disease
Post by: Christine on July 12, 2007, 08:28:22 PM
Lynn,   it sounds to me that you are your BF is very lucky to have such a caring and resourceful gal in yourself.  Communication is the key with dealing with situations such as this and your love for him will show in that.  Perhaps when you start talking about it, you could share with him that you have been doing some research and have found a site that may be able to offer some suggestions, options, and even some answers that he may have always had but have been apprehensive about bringing up to anyone.  The beauty of this kind of venue is that he can get the answers that he may be seeking and still keep his anonymity thus lessening any embarrassment.

I am so glad you are here and I do encourage you to share in the Ladies Room as well.   I am sure that your steadfastness will be a blessing.

Christine
Title: Re: Lynn
Post by: Liam on July 12, 2007, 09:29:30 PM
QuoteHe is always asking if I am ok, is he hurting me etc.

I'd bet he would be relieved for you to discuss it with him.  He knows and he know you know and you know he knows, now.  ;) So go for it.  :)

The other condition you mentioned is Dupuytren's Contracture (Disease, Condition).  It can be in either hand.
http://en.wikipedia.org/wiki/Dupuytren's_contracture

There are several other fibrotic conditions related to Peyronies Disease.  However, a congenital (since birth) curve is only related to Peyronies Disease in that they both cause a bent penis.  Congenital curves are not necessarily fibrotic.   :)
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Gator on July 12, 2007, 09:34:08 PM
Lynn,

This is a very helpful site for you and your lover.

hope you get some insight and informative information that you can share with your partner.

Best of luck,

Gator
Title: Pain while attempting intercourse
Post by: turquoise on January 02, 2008, 02:24:41 PM
I have recently been doing research on Peyronie's Disease and related topics because of my husband's penis downward curvature almost like a banana. We are both fairly young - mid-twenties- newlyweds and have not been able to have penetration sex since we began trying. It is so painful for me that we cannot even fully penetrate. Does this happen to other wife/girlfriends? I am just not completely sure if the pain is a result of his curvature or if it is that I have a problem also. He is looking into surgery (losing size do to surgery isn't a big deal to us because he is large as it is), and this issue has brought us closer in our relationship...I just want to know if anyone else gets this sort of terrible pain trying to penetrate. Thanks!
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Old Man on January 02, 2008, 06:14:26 PM
turquoise:

Look for a PM from me as soon as you read this.

Old Man
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Tim468 on January 02, 2008, 07:52:36 PM
Dear Turquoise,

Hard to answer this one - but before you and your husband consider surgery at all, it may be of great help to see a good physician accomplished in the realm of sexual medicine. Problems that have gotten in the way of successful intercourse include poor positioning, poor lubrication and poor timing. Working on this with the help of someone who can talk to you both very frankly is worth the effort, potential embarrassment or cost. I would NEVER let someone operate on me until I knew that all non-surgical options had been explored completely.

I would also be able to discuss this more in PM's if any of it is too hard to talk about here. If it is not too hard, remember that which we learn how to mention, we can learn how to manage. Plus another couple may come here and read it and be helped.

Tim
Title: Re: Women Speak Out about Peyronie's Disease
Post by: maddie on March 29, 2008, 06:03:53 AM
Hello all, I'm 27, my partner is 28 and has been told the bend in his penis is in fact peyronie's disease. We have been together for 3 years and have had a fairly decent sex life up until now. When I suggest we try intercourse to see if he can penetrate or not he doesn't want to. He says it doesn't hurt him so I can't understand why he won't attempt to penetrate. It's been months now since we last had sex and I'm not a selfish person at all but I'm starting to feel like i'm losing that sexual connection between us, the spark is going away as i keep getting shut down by him.

Am I being selfish? I don't know. This effects me as well and he doesn't seem to be taking that into account. All he see's is that I'm being needy and trying to make him feel bad about it.

I won't ever leave him for this physical problem he has, but I also can't live my life (at 27 years old) with a completely sex-less lifestyle. I very much enjoy sex, and that was one of the many things that attracted him to me.. But now I feel like it's never gonna happen anymore, and this frightens me.

Anyone else getting this?
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Tim468 on March 29, 2008, 09:25:45 AM
Hi Maddie,

It happens all the time, unfortunately. I wrote something that might be helpful to you.

http://www.peyroniessociety.org/intimacy.htm

In general, I can't tell you what to do - I wish I could. But I do advise you to hang in there and to encourage him to understand that you love HIM, not just his penis in a certain shape or function. Often, this takes time, and some men never get it - they remain balled up in so much pain that they cannot see beyond their own fog of pain and hurt.

In general, I would suggest empathy and demonstration to him that you respect his struggle. You might be able to get him to engage in therapy with you - if not, go yourself. For now, it sounds like you have become somewhat invisible to him. This is not about not loving you. It is about sadness that he can't love you the way he wants to or that he thinks you desire. Letting him know that you miss rough and tumble sex as well, but that you do like slow and careful sex a lot too, can remind him that there are  ways he can love you.

Hang in there.

Tim
Title: Maddie
Post by: Steve on March 29, 2008, 09:35:27 AM
Hi Maddie,

While being a guy, I can't exactly know how you're feeling, but I can at least give you this guy's opinion of what your husband's going through...
The loss or perceived loss of being able to have sex is an extremely scary thing to us guys (from first hand experience).  It makes us turn inward and not consider as deeply the effect we have on those who love us.
On top of that, your offer to "see if he can penetrate or not " might be scary from his point of view.  His fear is that he will not be able to penetrate, which will just confirm his worst fear that he'll never have sex again EVER!  On top of that, he fears that if he can't penetrate, that he'll lose you to someone who can!  In his mind, as long as he can put off that certainty (in his mind), the better.

The key word in all the above is fear!  Anything you can do to calm his fears will go a long way to bring you two back together.  My suggestion is to focus initially on just cuddling to instill in his mind that you do still love him.  As he gets comfortable, you can move to more foreplay, and even some oral if either of you are into that.  When the time is right, don't ask him to try and have sex, just tell him "lets have sex".  Anything you can do to take the 'pressure' off him to 'see if it works' I think would help.

These are just the opinions of one guy who'se gone through a lot of those same feelings and fears.

Good Luck Maddie, and always stay in love.

Steve
Title: Re: Women Speak Out about Peyronie's Disease
Post by: jackp on March 29, 2008, 10:56:54 AM
Hello Maddie,
As a over 12 year veteran of Peronies with a loving wife mind if I give you a few tips that worked for US.
1. Stop the pressure to penetrate. It only makes matters wosrse, the more pressure the less responce.
2. An older counselor taught me a trick when the wife was having problems just after going through menopause. Give him at least 2 orgasms with penetration before trying penetration again. The way you give him orgasms does not matter the fact that you lovingly do it is.
Remember the old TV show where the waitress always told them to "KISS MY GRITS". The fun part is finding the GRITS. It is different for everyone.
3. Get him to a good urologist. The side and after effects of Peronies can be as bad or wosrse than the onset. With proper treatment he may be lucky like myself and the curve correct in 12-18 months.
4. Look at Old Mans VED 26 week program. You may be supprised at how well it works. The secret is slowly and keep the pressure to a minimun. You can over do the VED and cause problems. I did and thanks to Old Man I do not hurt myself anymore and has help regain some size.
Good Luck to you and the hubby. There is a ton of information here. Someone always willing to help.
Jackp
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Old Man on March 29, 2008, 11:53:53 AM
Maddie:

WOW is my first impression of your post! After reading it all the way through and reading the previous posts, I thought it necessary for me add my 2 cents to their suggestions.

I am called the Old Man on the forum because I am just that - old and getting older at 78 plus. My Peyronies Disease appeared at age 24 when a real good sexual encounter went terribly bad. My penis was literally broken and Peyronies Disease developed very suddenly. Won't go into all the details of treatments and/or therapy that have gone under the bridge of life since then but they have been many and varied.

I will state that I am very familiar with the situation that your partner finds himself in at the moment. What your guys do in the next few weeks will set the stage for your relations in the future. Both of you must "bite the bullet", realize that maybe conventional sex is not available, but as it was said in an earlier post, there are many other ways of having real good enjoyable sex if you are into doing them or can start doing them. I know first hand that putting off some form of treatment or therapy can and will devastate your relationship.

My history has been posted earlier on this forum and it covers over 50 years now of having Peyronies Disease symptoms. However, as it has been mentioned the VED therapy did the job for me. Today, I am virtually free of any Peyronies Disease symptoms and sexual relations with my wife of 45 years is just an enjoyable as it ever was.

So, try to get your partner to realize that this is not the end of the world, but just another bump in the road of life that you and him together should overcome. I will be glad to help in any way, private messages and /or any other means that would provide help for you guys.

Sincerely, Old Man
Title: Re: Women Speak Out about Peyronie's Disease
Post by: maddie on March 29, 2008, 06:19:14 PM
Thank you very much Tim, steve, Jack and "old man"! I really do appreciate a man's point of view here and will certainly take your advise and go foward from here. He has gone away for 10 days on business now so I will take this time to myself and will really look forward to his return. I totally understand how scarry this must be for him, I too would be frightened to death if something similar happened to me. I do love him dearly, all of him and will continue to forever.. Peyronie's or not. I am going to get him involved in this forum upon his arrival. I only just discovered it online today myself, and from what i've already read I think he too would be very interested to get involved.
I really appreciate your replies.

Your Truly,
Maddie
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Old Man on March 29, 2008, 08:26:39 PM
Maddie:

We all are here to help in any way possible. So, feel free to call upon us at any time. Ask any and all questions that may come to mind. If we don't know the answer, will try our best to get one for you.

Hang in there and let him know that both of you have our support.

Old Man
Title: Re: Tim - Link
Post by: Hawk on March 30, 2008, 03:50:06 PM
Tim, I fixed the link on your post and routed it to the webpage you developed on that topic.  I am not sure where else you may have been directing the link or if we need it somewhere else as well.

I suggest that all follow Tim's link if you have missed reading this write-up on intimacy and Peyronies Disease.

It is easy to follow the link to the our website and pop right back over to the forum.

Again, the link is http://www.peyroniessociety.org/intimacy.htm
Title: How do "new" women react to men with Peyronie's ?
Post by: Aldar on April 12, 2008, 10:02:41 AM
I have seen several posts where women who are in a long-term committed relationship come to terms with and support their man's Peyronie's problem. I was wondering how do women that men just meet react? After all, women in new relationships do not yet have the emotional commitment and intimate non-sexual knowledge of the man they are dating, whereas married women or those in long-term relationships do. I know a common answer would be that if they really love or like you, the physical wont be as important as the emotional, but I'm talking about women/relationships that have not yet reached that point.

So what have been some of your experiences with new women in your life after the relationship becomes sexual and they find out about the Peyronie's ? Comments from both men and woman would be appreciated.

-Adam
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Tim468 on April 12, 2008, 02:14:15 PM
I was nervous. I was also turned on as hell. So when I got hard, I felt better than if that had not happened!

Of course, soft, I look normal...

So for me, several things probably made it easier emotionally.

First, despite my desire to do so, I did not go to bed with her right away. That helped; we had more of an emotional connection at the outset. (I did sleep with a woman I went home with from a party. She was tipsy, if not flat out drunk. Things went fast. My curve is upwards and could be seen as within the realm of "normal" (ie no right angle turns). With her, the fact that we were drinking made it easier - but not better for us in the long run). So in general, I would advise going slowly.

Second, we had spent some time making out and not having sex. So the buildup by the night in question was pretty intense.

Third, being unsure if we were making a good choice, we took a long time and so by the time we went to bed, it was late. We did not go to bed in the middle of the afternoon. So, in the dark, it is harder to get the visual, and the differences (even the dents and angulations that we obsess about) are not as obvious to others as they are to us. At least, they are not as obvious as "abnormal" to others.

Interestingly, even though I have developed some new dents of which I am very aware, she still says it "doesn't seem any different". So partly, our own fascination with our own penises makes us forget that they may not see it as looking weird even.

If I had a much more angulated penis, and/or if I had major ED, I would have to talk about it first. I would say that I had something that was hard for me to talk about, and important to me ,that I wanted to tell her. Then I would say that I had developed a problem that led to a change in how my penis got erect. It no longer looked the same, and/or it was harder to get hard. I would say the truth.

Young men worried about this might be amazed to find that telling the truth works very well!

Tim
Title: Re: How do "new" women react to men with Peyronie's ?
Post by: sunny12 on April 21, 2008, 03:09:04 PM
I just wanted to respond to Aldars question about how "new women" react to me with Peyronies...

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

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

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

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

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

At this point, we have been in a relationship for a couple months and enjoy a wonderful sex life.  For some reason, however, my boyfriend doesn't really open discussion about his situation.  Rather, he makes jokes about it or doesn't seem to be bothered by it at all.  I remember him saying once; "Its alot like college courses, the bigger the curve, the better." The one time we did discussed it, the only information he relayed to me was that sometimes its hard to take off a condom, his skin gets dry on one side, and that his previous girlfriend enjoyed their sex life also.  Personally, I haven't had any real challanges with the situation, other than some pain when in certain positions and it being tricky to achieve penetration sometimes. We try to make these instances positive, by using them as an incentitive to try new things or open lines of communication.  I think its great that he has a positive outlook on the situation, and after being in a relationship, I fully support him.

The only challanges I have personally found, are simply physical, not emotional.  I feel very fortunate for his and my own sake that he does not deal with serious emotional reprocussions because of his situation, and I applaud those who are dealing with the ongoing difficulties and challanges presented to them.  It was my intention to be only respectful in the submission of this comment, and I hope that anything I have said may only be constructive and helps.
Title: Sunny12
Post by: Angus on April 21, 2008, 06:09:50 PM
Thanks for posting, Sunny12. That is an easy to understand, well written post with thoughts that echo posts by other women in this thread. I wish your post and others like it in this thread were required reading for men who are newcomers to the board, and some of us old timers should read it as a refresher course on objectivity with this disease. It is posts like yours that help men keep a perspective on this condition, and that we sometimes worry about things that don't really deserve all that worry energy being expended on it. I hope your boyfriend is active on our board (or will become so), and I'm glad to see you here sharing your thoughts. And........ welcome!
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Tim468 on April 22, 2008, 06:59:11 PM
Sunny,

I agree with Angus. Such a clear and level headed post might do a lot to reassure a man who was afraid of intimacy.

Tim
Title: Re: Women Speak Out about Peyronie's Disease
Post by: maddie on May 16, 2008, 11:13:52 AM
Hello again everyone. Sometime ago i spoke out about my partner recently finding out his peyronie's disease. He has woken up with errections and has complained of pain. So painful that he has stopped all intimacy between us cause he doesn't want to acheive an errection anymore. Is this a typical side effect of the disease and if so, how long does it normally last? I know every person is different but personal experience may be of help. I have suggested he make an appointment with a different urologist to have it checked out again.
Thank you
Maddie
Title: yes it's typical
Post by: j on May 16, 2008, 09:38:06 PM
Pain like that is typical in the early stages but usually goes away.  That's what happened to me. 
Title: Re: Women Speak Out about Peyronie's Disease
Post by: newguy on May 17, 2008, 12:24:39 AM
Maddie - I appreciate that this is a very troubling time for both of you, and urge you both to be open and honest with each other. It's important to talk about these issues and to be there for one another.

Has your partner visited this forum at all?  Does he take any supplements or medication for his peyronies ( https://www.peyroniesforum.net/index.php/topic,22.msg14252.html#msg14252 ), as many sufferers will be lacking in that area? It's 'possible' that he could receive some relief from pain if he takes a more pro-active approach. I only mention this, as from your posts, I'm unaware of any treatment your partner is receiving.

Title: Re: Women Speak Out about Peyronie's Disease
Post by: LWillisjr on May 19, 2008, 10:13:46 PM
Maddie,
I can't encourage you enough to talk to your partner and to get to a urologist who specializes in this. This forum can help direct you to some very good ones depending on where you live. If Peyronie's goes untreated, things can get worse even if the pain goes away. The plaque can calcify over a period of time and this cannot be reveresed.
Title: Re: Women Speak Out about Peyronie's Disease
Post by: maddie on May 20, 2008, 06:54:12 AM
He won't talk about it.. Everytime I bring it up to try and understand better what he's going thru he gets angry and yells at me that it hurts a lot and he doesn't want to talk about it!! I've put him onto this fourm but he doesn't seem interested in checking it out. I really don't know what i can do to help him when he clearly doesn't even want to talk about things. He is back in the UK at the moment and I have suggested he goes to see another urologist to get a 2nd opinon on treatment options. The only thing he is currently taking is Vitamin E tablets. Is there anything else he can take to minmise the pain? I think that's the worst part of it right now for him.. it's been painful for him to get an errection for over 2.5 months now. He has not masterbated nor have we had any sexual activity in that 2.5 months.. which i'm not complaining about because i know it's physically hurting him to get hard.
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Old Man on May 20, 2008, 10:18:02 AM
maddie:

I have worked with many guys in my counseling program for prostate cancer in my local support group. The hardest part of my work with the guys was to get them to accept that they had a problem that treatment could help.

It is somewhat like getting an alcoholic to admit they are one, a person must first realize that there is a problem before they will seek help. Then and only then can anyone help the affected person. If he takes the offensive every time you approach the subject, maybe getting one of his most trusted personal friends involved could help. By approaching him in a very subtle way that your partner would not know that you instigated the conversation, he might just open up and talk to that person.

Maybe others here will have some input also.

Old Man
Title: forget Dr. Phil
Post by: j on May 20, 2008, 04:46:54 PM
My feeling is that there is nothing to be gained by pressuring him to "do something" or "talk about it".   

This is a very hard thing to come to grips with and it takes time - sometimes quite a bit of time. Get a diagnosis from a knowledgeable urologist, sure. That gives it a name and takes away some of the feelings of shock and weirdness. Then, let things be. Running to different doctors won't help, and you're likely to get a different spin from each one, just creating more confusion.   The reality is there's no really effective treatment at this time.  Traction devices and use of a VED may help but for a guy new to this problem, those things just sound like an embarassing nightmare. 

Each of us has to handle this in his own way and the standard Dr. Phl approach - basically a demand by others, to talk about a problem in excruciating detail - only makes things worse.   His image of himself has taken a serious hit, right where it hurts most. Don't subject him to a second attack, on his privacy.


These are just my opinions and others here will certainly disagree.

Title: Re: Women Speak Out about Peyronie's Disease
Post by: Tim468 on May 21, 2008, 12:44:15 AM
I agree that there is nothing to be gained by "pressuring him" to talk.

However, you are in  a relationship, and he has a role to play in your life. If he yells at you when you express concern and love for him then he needs to see that behavior as hurting you. You can certainly talk to him about that - to say " I am concerned about you but when I try to talk to you about my concerns, I feel sad because my attempts at connection do not seem to work" (or something like that).

Having listened to men come here and rant but be unable to really take self-caring actions, I have wondered what really happened when they said "she left me because of this". I have often thought that they were unaware of how much pain they were in  or how toxic it was to others.

Hang in there.

Tim
Title: Re: Women Speak Out about Peyronie's Disease
Post by: maddie on May 21, 2008, 06:51:36 AM
I do love him and would not ever consider leaving him because of he peyronies.. however the new "shutting me out" is really starting to take a tole on our relationship. I am in no way "pressuring" him to talk. I only meerly suggested that maybe he looked at this site and he may see that he's not the only one in the world dealing with this. But since being diagnosed his entire attitude has changed.. I feel as though he's pushing me away and now it feels like we are more roommates who sleep in the same bed than two people in love with eachother. I do ask him from time to time if the bad pain is still present.. and he takes that as me asking "are you ready to have sex yet" which is completely false and I've explained this to him. I only want to know how he's feeling... that's all. I guess just keeping my mouth shut and dealing with this "silent" period my own way is all that i can do at the moment.

Thanks guys for your replies. They're greatly appreciated.
Mad
Title: anger
Post by: j on May 21, 2008, 07:53:44 PM
I've probably already said too much but...  if he's just totally locked in by anger, then yes he needs to realize that, and start to understand its effect on you.

Reading between the lines I am wondering if there are other things wrong in his life right now, and maybe nothing positive happening for him that might offer some compensation.  Has his job turned to crap?  Some tangly family situation dragging him down?   

I'm 50-something and to some extent at least, I can manage this problem and go on with my life. But at 28, this would have hit me like a brick between the eyes. The shock, anger and embarassment would have just knocked the wind out of me, psychologically and it would have taken me quite a while to pull myself together.  That is all I'm trying to say. 

Sometimes in life, all we can do is try to lighten up, step back and look at the big picture for a while before going on.   Things can get better, and wounds can heal.  Like tim468 says, hang in there.

Title: Re: Women Speak Out about Peyronie's Disease
Post by: jackisback on June 13, 2008, 01:19:03 AM
Ok, maybe I'm out of line here, but I see that there is this totally private forum for women here that only women are allowed to see.

I'm sorry, but doesn't this create the wrong impression? I would think that these general forums are mainly to help the men involved and the fact that the womens forum must be private...well it strongly implies to me that these women are stating some hard truths. Saying some things that would depress the hell out of the afflicted who are trying to be optimistic and get on with their lives.  And by having these forums, but making them private, well, it's just going to make us all assume the worst things are being said. For a single guy like me, it's not a nice thing to think about.
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Tim468 on June 14, 2008, 09:00:29 AM
jackisback,

Your last line says it all: "For a...guy like me..."

Your post seems to be about you and your insecurities. I can say that no one has ever raised the concerns that you just raised. Previously, women had posted here and been subjected to some moderately crude responses that made it harder for them to post. The private forum allowed them more freedom to talk about what they are going through in helping their partners.

Overwhelmingly, the posts by women have been supportive of the partners, and focused on trying to understand why their male partners with Peyronie's Disease were shutting them out, or ignoring their pleas to get help, or refusing to talk about their feelings. Once in my memory, a woman expressed flat out anger at her partner's refusal to get help, and that she did not want to plan for a celibate life (he was refusing sex with her).

The private forum is not about women ridiculing men, nor is it about women joking etc. It is women getting support from each other in their efforts to support their partners in coping with this illness. Your concerns really say more about how tough this illness is on your sense of wholeness and manhood. Believe me, you are not the first guy who has suffered greatly in trying to cope with the uncertainties of this illness! Thinking that women are going to laugh at you and that if they do, it will do something terrible, is par for the course when someone young gets this problem.

Hang in there. As you figure out what your best options are, fear that it is all over for you will get better. Then, what women might say to each other on a support forum will not seem so mysterious or off-putting.

Tim
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Christine on June 14, 2008, 12:29:15 PM
Tim, I could not explain it better.    The Ladies Room is not a place for male bashing.   In many cases the women who contend with the helplessness of this condition do a great job at bashing themselves.   

It is a place for women to be able to really let their feelings show.   So often there are feelings of anger and frustration that we just need to get out. We struggle with the best way to be a help for our partner when they keep us at arm's length.   For those that are not dealing with this condition it is hard to imagine or understand what we deal with and in that light it is not comfortable to discuss with just anyone.   For our significant other who is dealing with their own feelings of anger, frustration, and similar emotions, it can be hard to dump what we carry around on them for fear of making the situation worse.   

Together in the Ladies Room, we can really be free to talk about what is going on inside us without the fear of being ridiculed.  We can uplift, support, and discuss with each other topics that are geared to just women.   It's a fact......we are wired differently.   Given the fact that we urge BOTH partners to engage and use the forum and also given the fact that both parties are at times not in the same place of acceptance, the privacy of the Ladies Room gives a woman a place to vent and share thoughts without the worry of their better half reading more into their words than is actually there.

Quite often the ladies post in the general forum and many are willing to give our insight on topics presented.  In the past, those insights are valued by the men who fear that their attractiveness to women is damaged because of Peyronies Disease.  We are all in this together. 

Thanks for your candidness jackisback.  You are not out of line.  Your question may have been pondered privately by many and posting has given the opportunity to explain.   

Blessings to you,

Christine

Title: Re: Women Speak Out about Peyronie's Disease
Post by: Hitman on June 15, 2008, 04:11:47 AM
I want to thank Christine for sharing her thoughts. This is often very common among some of the families I've seen who have a male relative with prostate cancer. Often the daughter or wife would speak out about the condition while the man stays silent. I'm not sure why that is, but it seems that it is too embarrassing or a big "taboo" as if we've committed a crime. I think that men have to speak out more and society shouldn't vilify them for it nor should they stick their heads in the sands. Its not just women who have problems but men do as well and we need to make these issues heard. If women had prostates and suffered from our ailments things would have been different.

But my experience with some of these private chat rooms, generally has not been positive. too much gossip, ridicule and cheap talk about other people/members. (Not implying anything about this women's private chat room). Unlike some members here I'm not married nor do I have a girlfriend. I don't have issues addressing my wife's needs and concerns but I just tend to be weary of some chat rooms because some people are very good at talking trash behind your back (again not my attention to accuse anyone). However I don't let this cloud my judgement.

anyhow enough of this rant.
Title: Re: Women Speak Out about Peyronie's Disease/men don't speak out.
Post by: Old Man on June 15, 2008, 09:33:56 AM
hitman:

You are 100% right about men generally not wanting to speak out about their "private" health problems. Most don't even want to talk to their partners/wives about anything. Years ago, 1995 in fact, I was subjected to prostate cancer which resulted in a radical prostatectomy. Shortly afterwards, my uro asked me to become a counselor for the group in talking with men who had been diagnosed with prostate cancer. That resulted in my being asked to work with the American Cancer Society as a counselor for prostate cancer.

Several of us in the prostate cancer support group were asked to take a course of "counseling procedures" under the supervision of a urologist. The uro gave us the necessary information to be able to talk with men who had been diagnosed with cancer. The ACS then provided us with prospects to work with on their decision about their cancer.

It was soon realized by us that men just did not want to volunteer any information about themselves in their private area. Some even would not ask questions about what they faced. They would just clam up and not say anything. Usually, we tried to get their partners/wives involvled in the conversation and they asked more questions than their husbands/partners. Some even then would not talk about their problem.

Why this occurs, nobody seems to know, except that men want to be the macho type and think they can conquer everything on their own. When it comes to prostate cancer, Peyronies Disease and other maladies in the private area of men, they should just bit the bullet, step up the plate and face their problems head on, but they won't. Have no clue as to what can be done to help with this situation other than to just open up and let go.

The above is just my considered opinion based on my counseling experience with men over the past years.

Old Man
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Hitman on June 15, 2008, 01:03:18 PM
speaking of prostate cancer I've read that the funding has gone from I believe 40ish million dollars in 1995 to 447 million by 2007 which is good to hear. Really like you said men should speak about the subject more openly.
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Christine on June 15, 2008, 04:24:32 PM
Hitman, 

I understand what you are saying completely.  Please let me make clear to all the men that male bashing is fervently forbidden in the Ladies Room.  Our purpose is to uplift, support and share ideas of how we can help each other as well as the partners that we care about that suffer this condition.

Just wanted to make that clear to any that think we are just gossiping in there.

Blessings to you,

Christine
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Hitman on June 15, 2008, 05:26:56 PM
Christine

I was not singling the Ladies's forum out and if it sounded like that then I sincerely apologize. I'm sure that you and the others are doing your best to help your partners. Its also not something I should be discussing because I'm a single guy and have nil experience with such issues.

thx for sharing
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Christine on June 15, 2008, 07:22:23 PM
No problem, Hitman.   You just voiced a concern that has been shared with me privately by PM by a few others and in doing so gave me the opportunity to make clear to all our purpose and possibly set some minds to ease that were feeling that men were getting thrown under the bus in there.   Speaking as someone that is very familiar with the underside of a bus, I thank you for words.

Christine
Title: Re: Women Speak Out about Peyronie's Disease
Post by: jackisback on June 18, 2008, 02:22:28 AM
Tim - yeah, it was about me and my insecurities. I thought that's what this forum is all about (that and physical improvements)

"Once in my memory, a woman expressed flat out anger at her partner's refusal to get help, and that she did not want to plan for a celibate life (he was refusing sex with her)."

I would say she had every right to be angry!

Also, to Tim, Christine, anyone else - yes, i certainly understand that it's not good to have an atmosphere here where a woman has to chose her words too carefully, and i'm sure that the women's room is created with the best of intentions. No offense to anyone, and I'm glad the forum is here.
Title: Re: Women Speak Out about Peyronie's Disease
Post by: susielou on June 18, 2008, 04:33:28 AM
HI EVERYONE
i have just joined this forum as i was perusing the internet about peyronie's disease, as i am beginning to think my boyfriend has it. is he only 20. there is a small lump halfway down the penis and the penis bends a little when erect. we still have great sex, but after we have alot of sex, i begin to get very sore and inflamed. i have never had this from too much sex before and i was beginning to think it was from the shape of his penis, and that little ridge that sticks out. that is how i heard about peyronie's disease. do you think it could be the beginning of peyronie's, even though he is only 20? as far as i know, he doesn't know anything about the disease, thought i have noticed that he is a bit self conscious about the shape of his penis. the other noticeable thing is that he takes a long time to come, like a really long time. which is great most of the time, but i begin to get sore!

anyway, i just wanted to hear what you guys thought about it. i dont want to confront him about it with my own diagnosis until i know a bit more about it.

and does it always get worse? is his erection likely to bend more and more as he gets older? or does it sometimes just stay at that level?

thank you guys, i really appreciate your comments.
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Tim468 on June 18, 2008, 08:13:28 AM
Getting sore is probably about the length of time that intercourse lasts, rather than the shape of the penis, IMHO.

Talking about it could be tricky. Perhaps starting by asking him if he is self-conscious or concerned might be a place to start.

Talking about sex in general can be tricky for that matter. At 20, men usually still have a lot to learn about women. Talking about how you feel might be a good start. For all you know he is concerned that if he doesn't "last a long time", that you would be disappointed in him (more than one guy has masturbated during the day to make it easier to last longer that evening).

If the bump and bend are new then he is probably very concerned about it. If it is congenital, then he is probably just self-conscious about it. In either event, talking about it might be helpful!

Tim
Title: Re: Women Speak Out about Peyronie's Disease
Post by: zone611 on June 27, 2008, 06:06:35 PM
I have Peyronies and I am able to still have sex with my Girlfriend, what I was wondering since my penis is bent (down) would that prevent her from getting pregnant?

We have talked about this and I am in the process of getting a fertility test which I suspect will be normal.  She thinks that because it is bent (down) and is not totally erect that the possibility of getting pregnant is reduced.

I did talk to my doctor about this and he explained that as long as there is penetration she can still get pregnant. basically having Peyronies does not change the outcome or reduce the changes of getting her pregnant. I am able to archive a full erection (bent) and Penetrate her with no problem. Some positions are more problems then others. (can anyone offer any suggestions)?

I hope someone can help me here because I very much want to have kids and I have heard conflicting ideas on the subject. I have had Peyronies for about 10 years and only recently have decided to investigate it further.

Please Help

Zone611
Title: Re: Women Speak Out about Peyronie's Disease
Post by: crank on June 27, 2008, 07:19:41 PM
Hi Christine...

Did you notice that zone 611 registered as a guest and has no profile posted..??

Did you notice that zone 611  posted the same post in 3 forums..??

I suspect that zone 611 is a fraud...thinks he/she is funny..maybe I'm wrong..we'll see...

crank
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Christine on June 27, 2008, 11:46:43 PM
Crank,  I believe you are correct.

If I understand the process correctly.  He registered, posted and then removed his registration which is why he appears as a guest now.   

I will notify Hawk about him.

Thanks,   Christine
Title: Re: Women Speak Out about Peyronie's Disease
Post by: LT48TM on June 28, 2008, 12:07:54 AM
Christine,

Is it possible that Zone611 posted in 3 forums because he / she is new to this post? Maybe he / she is self conscious about there condition.

I think they should be given the benefit of the doubt. I know I am new here and would expect fair treatment.

LT
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Christine on June 28, 2008, 12:13:07 AM
You are absolutely correct.   And I apologize if my assumption is incorrect.   However, I find it very strange that zone611 removed his registration after posting.  This is something that one does not do by accident.

I may not know the entire story regarding this situation.  But I also find it strange that he would come to a Women's Speak Out thread to post his question.

It the policy of the PDS to not censor posts and give all a fair opportunity to express their questions and interact to achieve the same goal.
Title: Re: Women Speak Out about Peyronie's Disease
Post by: LT48TM on June 28, 2008, 12:27:02 AM
I do not find it suspicious they went to a woman's speak out forum since there question was regarding pregnancy and children and what effects it might have with a family. All the other forums approach Peyronies from a male standpoint maybe they wanted a female point of view.

I would agree that they posting to 3 forums is a little strange but one could explain that they wanted to make sure all bases were covered. As far as he / she deleting there profile again they might be self conscious and they deleted there profile.

Just my 2 cents worth.

LT
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Tim468 on June 28, 2008, 10:45:02 AM
Taking the post seriously...

If it can go in and ejaculate, then your penis can cause a pregnancy.

Peyronie's causes no effect on fertility unless impotence is part of it, and one can therefore not have intercourse at all.

Consider that the final word (in all modesty) and ignore "conflicting reports". I have no idea who would say that Peyronies Disease causes one to have difficulty getting pregnant - my advice is to ignore them.

Tim
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Christine on June 28, 2008, 02:20:50 PM
LT48TM,

Your points are well taken and understood.   Thank you very much for offering a positive perspective on this.  I appreciate the input greatly.

Blessings,

Christine
Title: Re: Women Speak Out about Peyronie's Disease
Post by: maddie on August 12, 2008, 11:26:52 AM
Hello everyone, well it's nearly 8 months since my partner was diagnosed with Peyronies Disease and the pain is still very much there for him. We have not been able to have any sexual contact for the entire 8 months. Is this normal that the pain lasts this long when he gets an errection? he has been to 2 urologists and both say to continue with the Vitamin E and have also given him some ibproufin (sp?? sorry!) cream. Nothing is working and our sex life is now completely at a stand still. What is the next step from here now? I'm 28, he's 29 and this is starting to put a strain on our relationship as there just isn't any intimacy there at all anymore.
Title: Maddie
Post by: Angus on August 12, 2008, 04:19:32 PM
Hi Maddie... does your partner read or post on this board? Encourage him to do so, and seriously consider changing urologists. Find a uro that will prescribe Pentox and get something going besides Vitamin E and Ibuprofen cream. Those two are the same as doing nothing at all. Find a uro with Peyronies experience that will listen to why Pentox is good for this and will prescribe it. There are other things that he can do to help as it sounds like he's still got inflammation. If he's in enough pain to prevent intimacy, then the relationship needs to be treated as well. This is an earth shaking condition, but there are ways to treat the Peyronies and ways to treat the relationship. I encourage you to post in the Womens message board if you haven't already done so. All is not lost... but a different uro would surely be a good place to start.
Title: Re: Women Speak Out about Peyronie's Disease
Post by: j on August 12, 2008, 05:42:33 PM
I'm not really the type who offers advice on serious personal issues; but, I've been through this myself. So here goes.

Peyronie's is a like a brick in the head. It's a hard psychological blow and it takes a long time to get to some sort of understanding, and maybe even acceptance, of what's happened. In my case, many months - actually years, if I'm honest about it.  It makes a guy feel shocked, depressed, angry and just plain weird.   And the physical pain can last quite a while - also months in my case - depending on where the fibrosis is in relation to nerves and other structures.   

Eventually I did get somewhat used to my new non-straight self and for my wife, it never really was a problem I guess, although it took me a long time to accept that.  If a guy still has a reasonably normal erection and things aren't too uncomfortable for the woman, well then life goes on.  I try to think of it as sort of an athletic injury that just needs to be worked around.

I hope my fumbling reply is at least a little helpful. 


Title: Re: Women Speak Out about Peyronie's Disease
Post by: maddie on August 12, 2008, 07:34:05 PM
 hi angus, we have been searching for a good urologist for months now with no luck. we are privatehelthcare covered in the uk but have not been able to find someone who can help him...he just gets mad every time i bring it up.. tonight i suggested we had a cuddle and i was turned down again. i feel more like his roommate than his partner. i don't  know what to do. i'm lost and often without words.. just tears of losing my relationship more and more each day. i don't kmow what to do. i've been so supportive, i'm at my breaking edge.. i love this guy more than life itself, sex is not important but intimacy  between us is.. i need to know the spark is still there....as far as he's concerned in my opinion i'm a selfish bitch and i'm pushing him asway....
Title: Maddie 2
Post by: Angus on August 12, 2008, 08:35:33 PM

   Maddie, it's plain and simple... he's going to have to help himself. He is crushed by this, and lashing out at those near him. He thinks life as he's known it is over. Men that get this often think they are no longer men, but something else, and they don't know what, but whatever it is is not good in their minds. The name calling is unfortunate but will have to stop, and this will happen only if he gets the proper perspective of what is happening to him and realizes that his anger must be checked at the door. He must somehow discover that life isn't over; this is an injury or condition that can be treated, and not with Vitamin E. He will have to settle down, look at options, and ACT. He thinks he's alone in this; as you can see by being on the forum, that is NOT the case. He has friends here; he just hasn't met us. Try printing out some pages of VED and Pentox posts and present them to him for reading offline. Hopefully he will do a turn-about and realize that there ARE men who are doing things that are working, if not only for their Peyronies Disease but for their state of mind. He needs to realize that Pain is Inevitable in life; Misery is Optional. Might be hard to grasp that at this moment in time, but it is true. He also needs to settle down enough to where he can read the Child Boards of this Forum and ask that first question here. And that first question is a doozy for men... it's HARD for us to admit to other men that we've got a problem here. But he needs to do it, and soon. I wish you two the best. Ask questions often, as much as you like here. We've got him covered; he just doesn't know that yet  :)
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Tim468 on August 12, 2008, 08:40:00 PM
Hi Maddie,

I am sorry to hear that you are going through this. Frankly, I think he needs a kick in the ass to get going. So let me play devil's advocate (and I know I am preaching to the choir to you). So what if two urologists do not have much to say? Start with a primary practitioner who is willing to work with you, and get him or her to prescribe pentox (trental). Keep asking and bang on doors if you need to to find a urologist who is willing to do more than nothing.

It might help to start the VED to stretch out the tissue or it will get worse (often it does, at least).

OK - so I ask myself - why am I telling you all of this? The problem is that he is not doing what he can to help himself, or to help the relationship. It sounds like you are doing a lot more than he is. It makes me want to hit him in the head with a brick to get his attention!

OK - enough venting for now.

Why does he get mad when you bring it up? Is he passive and willing to simply rest on what the doctors said? If he is relying on them, he is in for a surprise when a year passes, and then all they offer him is surgery - which runs a good risk of making him worse! Is he mad because he wants to avoid thinking about it, and your questions remind him?

He may think that you are mad at him for being "imperfect".

Could be a lot of things... but if he is not willing to talk to you, then you are going to be stuck. You could explain that your future as a couple depends on the two of you seeking counseling together, and then following through. I think that you have it right - this is a relationship problem, not a penis problem.

Hang in there. You are doing more than many others would. Tell him that you love him but that you want him to listen to you and to respect what you are trying to say.

Good luck, Tim
Title: Re: New need some men's opions
Post by: mari on October 13, 2008, 08:18:45 PM
 

--------------------------------------------------------------------------------
Hi there!
I am new to this and will
not go into all the details of hubbies erratic behavior, just let me say I discovered something going on completely by accident. He left his email account up one morning and was running late. I got on the pc and thought I had left my account open..long story short, he has joined several porn dating sites. ( he does not know I know of this)  I decided to seduce him one night and then he told me about a curve upwards in his member, and that he was having problems maintaining an erection.  We made an attempt and it was painful for both for both of us.......we have made several other attemps with the use of Cialis....to no avail. Made an appt with the Dr. and he referred us to a Uro Doc. Hubby has been more than willing to
let me go to appts with him, as I have a bit of a medical background and know the ?'s to ask.
Hubby has an appt with uro on the 14th of Nov. In the meantime i have been doing lots and lots of research.............Here at this forum. I have been known to be called the "research queen" at times lol. We discussed his erratic mood changes (along with other things) and he has agreed to take the following, Please share your thoughts on this, if you will.

Super B Complex with vit c and Folic Acid. 1 x a day
Vit D3. 1 x a day
Vit E. 1 x a  day
One Source Ultimate Men's Multi Vit. 1 x a day (lots of goodies in this mix).
Gently applying Corona Bag Balm every evening to his member.

I work in an office building where there is a Dr. of holistic medicine down the hall, she also does PT and other things as well. I talked with her and she feels perhaps he may benefit from accupunture and E Stim. Maybe this will help break up the Fibrous tissue slowly. I was shocked when i told hubby about it and he was willing to give it a try!!!!!! We will wait to do that until we speak with the uro of course. I wanted to post this regime on the womens area in the mens forum for their opinions as well,  Christine sent me here, any and all opinions are welcome..constuctive critisism as well.
My regards, and thank you for considering my many ?'s.
Mari
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Tim468 on October 13, 2008, 10:37:38 PM
Mari,

It sounds like you and he have a lot on your plate. I am not sure how best for you to integrate the two issues together. He is either slipping towards sex addiction (if not already there) which is a risk for those with sexual afflictions of any sort - they can get a need to feel sexy or to reach for greater levels of stimulation to get erect - and porn helps that sometimes.

So dealing with what sounds like a new sexual problem (from what you say it is not clear if the curve is new, or you just discovered it after a (long?) period of sexual inactivity), and dealing with a possible infidelity are two very different issues.

I suspect that if you do not trust him, that your ability to help him or support him will wither. So, from my viewpoint, dealing with the porn dating sites is really something that has to come first. I would not have sex with him if it is possible that he has had sex with someone else.

E-stim does not have much chance of helping - there are better avenues of treatment for him to find. I would speak to him pronto about the sex crap, and then send him here (hate it if he found out you knew by reading here!).

Tim

Title: Re: Women Speak Out about Peyronie's Disease
Post by: jackp on October 14, 2008, 07:16:44 AM
Mari
Sounds like your husband is looking for help in all the wrong places,
He will have to get himself off the porn sites. Easy NO! A suggestion would be have sex with him as often as possible. I do not mean intercourse, there is more than one way to have sex. One key is communication - communication - communication. No finger pointing just communicate about your lives, hopes and dreams.
My wife and I shut of the TV and go to the sun room at least 5 days a week. Talk starts about our day, our kids and grandkids. How do you feel today both physically and mentally.
Problems in the past when either of you wants to talk the other just listen in a nonjudgemental way. Things of the past don't matter but if thy are causing Post Trauma Depression let it out.
My wife has always been a talker and I just set and listen. This is a second marriage for both of us but we have been married 40 years now. I did not talk much. When I retired last year had to dig up some old military records. My ex wife started having affairs while I was in the Air Force. After the divorce I went into a deep depression for over 2 years. I built up a wall and would not talk about it. The Post Traumatic Syndrome hit me very hard and the importance from the peyronies hit me real hard. Over the last several months i learned how to communicate. Tore down the wall around my heart and made our relationship even more stronger.
Yes at our age 65+ we have sex 2 or 3 times a week. Now always intercourse but you do not have to have intercourse to have sex. Once youall learn this things will improve.
As for fibrosis get him a VED and go to the VED section. Old Man can give you a routine that will help. Over the last year I have gained back about 1/2" of loss from peyronies and corporal fibrosis.
Good Luck, just remember
Communication - Communication - Communication
Jackp
Title: Re: Women Speak Out about Peyronie's Disease
Post by: mari on October 14, 2008, 06:36:24 PM
He was having problems with ed,  We had been having sex on a fairly regular basis for about six months with the help of Cialis. Then he began to become withdrawn and started being very argumentative with me over little things. In retrospect, I feel he was pushing me away because of the anger, confusion, embarassment and frustation of the curve ( i was not aware of it yet at this point). In turn I was getting frustrated too and feeling very hurt....what the heck did i do to make him appear to be angry with ME all the time?? Sooo...I took the bull by the horns so to speak and deciced enough was enough, got him into the bedroom and well  :-[.......i won't go into some of this, but it finally came out that he had a problem and showed me, I told him that was ok, not to worry, but when he was unable to even achieve and  maintain an erection, he gave up. I told him i understood and that was ok. I then got on the pc and looked at ed info, found this site that had a pic of a penis with peyronies....called him over to look at it and he shouted OMG that's it!! I made a Dr appt the following day, went with him and sure enough the PCP said it was peyronies and referred us to the uro.

It was a few days later i discovered the porn. Now in his defense, I think he was trying in his own way to become aroused.....maybe not wanting me to know of the problem.....thinking he could "fix" it on his own.
He hasn't met with anyone, I do trust him, we will be married 25 years next July.

As far as confronting him regarding the porn, I think that would be detrimental at this point. My focus is on his mental status and his self esteem, I'm putting my own feelings aside to support him through this.
I did have webwatcher installed . to watch the kids and am now tracking his visits to those sites...they have declined somewhat, so am relieved on that point.

In my previous post I listed some vit, what are your thoughts on those?? We plan on having him take those for a week and try the last cialis in the bottle this weekend to see if any improvement has occurred. I did mention the ved to him and he looked at me funny!  Need to ask Uro about that too.

I wanted to add that he does know I am coming to this site and getting as much info as i can before we go to the Uro. He's fine with that and i told him if there are any questions he has I will gladly ask them on his behalf. I am the one that does all research for anything we need that pops up in life..............love to research! lol

Sorry for the novel, but felt I needed to clarify a few things and add some extra insight, I know this messes with a man's mind and want to be as compassionet (sp?) and as understanding as i can be, that's why I joined this site.
I am very greatful for your candid responses.
Thank you and best regards,
Mari
Title: Re: Mari
Post by: Hawk on October 15, 2008, 01:50:47 PM
Mari,

Your posts deserve a thanks and require no apology.  Your support for your husband shows your commitment and selfless attitude.  He is fortunate to have a partner like you to work through tis with him.

In regard to your recommended protocol, I would refer you to this recent post by George and only add that I would strongly recommend a Vacuum Erection Device (VED) and/or a traction device.

Please click on this link
Quote from: George999 on October 13, 2008, 11:26:27 AM
Despise,  Let me make it easy for you,...

4)  At the same time as you are doing 1 thru 3, you can take things like Acetyl L Carnitine 2g per day, full spec Vitamin E 400-800mg per day (the synthetic stuff is useless), and Vitamin D3 (start with 2,000IU per day).  There are other things you can add to this later, if you scroll back over this thread and read carefully, you will find a lot of useful info.  You should also read the VED thread carefully.  BUT it is very important that you start with a medical diagnosis so that you know exactly what it is you are dealing with.  I really wouldn't worry a whole lot about the masturbation issue.  Obviously you shouldn't be doing stuff that causes trauma to your penis or any other part of your body for that matter, but typical generic masturbation does not cause or exacerbate Peyronie's.  - George

Title: Re: Women Speak Out about Peyronie's Disease
Post by: Charlie50 on January 19, 2009, 10:27:40 PM
Hi,
My husband was just diagnosed with Peyronie's after having had a total hip replacement surgery. He complained after he woke from surgery of pain on his penis. I looked at it and noticed a blood blister and alerted the Dr.'s and nurses. They all said that the blister was normal from the catheter. The pain bothered him, but we felt that if the medical personal said it was normal, it must be. Fast forward to 3 months later when we wanted to resume being intimate, and I noticed upon feeling his penis that there was a rather large bend in it. When I shockingly asked him what was wrong, he informed me that he had noticed it because it hurt when he would get morning erections. He failed to mention it to me as he thought it was no big deal. Anyhow, I made an appt for him ASAP with a Urologist. The Urologist imformed us that it indeed had plaque and it was Peyronies. He felt that it could be from the catheter. He told him to take vitamin E and told us to come back in 6 months. Anyone else here think that the catheter could have caused this?
I am only 46 and so frustrated to think my sex life is over. He is too, but does not seem to have the drive I do and this is causing problems in a 21 year marriage. HELP!!!!!!!!!
Title: Charlie50
Post by: Angus on January 20, 2009, 01:28:59 AM
  Welcome to the forum. You and your husband will have support here. There is a vast amount of information on things he can do for relief and we will help make finding those things simple. Instead of repeating it, I refer you to the post just before yours by Hawk. Read that and follow the suggestions on what he should begin taking right now, and how to proceed from there. Do not wait to begin these supplements. If your husband chooses not to join us on the forum in the future, convey as much information as you can to him on useful supplements, the Vacuum Erection Device and its protocol and advice on finding a GOOD urologist. You recieved the stock uro Peyronies answer that has been given for fifty years and more... take vitamin E and see me in six months. This by itself does not work at all and that is documented here. Some things like Viagra and Pentox are prescription drugs but you can read the documentation here about their usefulness. Several men here have found relief and curve improvement using the Vacuum Erection Device (VED) and that is documented here as well.
    And your sex life together does NOT have to be over. However, with Peyronies, you must work to get it back. There is enough information here to get him on a multi-level approach to relief from this hideous condition. And yes, the catheter most certainly could have caused his Peyronies. Until someone invents a better, gently way to catheterize men, there will always be the danger of penile injury from being catheterized.
    When you have questions, post away...               Angus
Title: Re: Women Speak Out about Peyronie's Disease
Post by: jackp on January 20, 2009, 11:15:49 AM
Charlie50
Welcome to this forum. I am in the minority here that believe Vitamin E is helpful with peyronies. My case started in 1995 and my urologist at the time put me on 400IU of Vitamin E 3 times a day and Potaba. The good thing is that in about 18 months my curve straightened but the bad thing is I lost almost 1.5 inches in length. Urologist at the time said that there was nothing I could do.
I took vitamin E until 10/06 when I had chest pains and had to have stents. Dr. then put me on Plavix.
To make a long story short my condition worsened over the years and developed ED, Venous Leakage, and Corporal Fibrosis. (Corporal Fibrosis was because of trimix shots trying to get an erection, little to no help.) 10/06 I was scheduled for a penile implant that had to be postponed for a year because of heart stents. 10/07 during implant procedure the doctor punctured my urethra and aborted the procedure. At that time  (10/06) I was 100% impotent and asked the doctor what could I do. He prescribed a VED for me that was custom fit in his office. Instructions were not great and hurt myself by over pumping, after that only used sparingly. After the failed implant 10/07 I started to do research and found this site. Old Man gave me a VED exercise for the VED I had an followed his advice. Within a few weeks I notice my penis was feeling healthier and that the length was starting to come back. In that year of so I gained back about 3/4 of an inch.
Local Urologist could not help me and finally I was refereed to Vanderbilt (200 miles away). Dr. Milam told me to keep up the VED exercise but because of the peyronies scar I had gained back all I could.
I know you are far from this but 10/08 I had a successful implant and now have a normal sex life. Surgery is always the last option.
IMHO get him on Old Mans VED exercise as soon as possible. This should help keep his penis healthy and keep size loss to a minimum.
With his sex drive down he should have his testosterone checked. Not just total but all the most important testosterone is the bioavailable, disregard the total T the bio should be at least 70% of the upper range of the lab.
I know this may be too much information all at once. Just encourage him to have sex as much as possible, sex is not defined as penis in vagina there are many ways to have sex, use your largest sex organ The Brain.
You are a long way from where I started. The other important advice I can give you is not to try shots in the penis for ED, that is what caused my corporal fibrosis.
Good Luck, there are many here that are willing to help. Peyronies is different for all of us. FYI I am 66 now.
Jackp
Title: Re: Women Speak Out about Peyronie's Disease
Post by: UK on January 20, 2009, 11:28:55 AM
Charlie

Hope this helps - it came form a FAQ to a Peyronie's expert.

Q: What are the implications of Peyronies Disease secondary to catheterization trauma as regards the causal factors of Peyronies Disease? Why would inflammation in the urethra lead to Peyronies Disease? Why would injury to a separated part of the penis find its way to the tunica?

Dr. Mulhall answers: There exists no evidence that urethral catheterization causes Peyronie's disease. Indeed, as you point out the "injury" would be remote from where the vast majority of the plaques are located. It is likely that the trauma that is implicated in Peyronie's disease development is far more subtle in most men than that which may occur with urethral catheterization. Remember there are millions of men every year who are catheterized for a variety of reasons and thousands who live their lives with a catheter in place permanently and yet they appear to have no higher incidence of Peyronie's disease than the general population.

My opinion is that its a possibility if the curve is ventral or down as that is where the urethra runs, however if the curve is up or sideways I'd be inclined to agree with the doctor that its not linked to the catheter.
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Hawk on August 18, 2009, 08:58:37 AM
I am just bumping this Topic up where it can be seen so women can see it and feel comfortable posting here if they have general questions.  We have had no female poster on the main forum in months although we do have several posts a week in the Private forum.

Title: New Woman to site
Post by: Dancegrrl on December 12, 2009, 02:17:36 AM
Hi all,

I have perused the site a bit on behalf of my boyfriend.  He has had Peyronies for a few months and it is getting worse quickly (pain, no bend). I helped him find a good urologist who is a specialist in Peyronies and he saw him, was prescribed drugs which he has been taking for a couple of months.  He has had no improvement and is in a lot of pain, feels the scarring/nodules (one on each side of the shaft) are getting larger.  He is depressed...sees no options and is not inclined to get on this site, explore alternative treatments...I found several postings on alt. treatments that seem promising but I don't know what else to say to him to get him to try the site...he's a "typical" guy only more of a loner than most and sharing this with anyone except me is currently not something he wants to do.  Our sexual relationship has not been great in the past as his libido is much lower than mine and he is mostly interested in "hard sex" not loving sex...so it's ironic that now this has come up...i don't think there is much sex in his future at least in the short term, but certainly not hard stuff.  Any advice for getting a guy who's great but really hurting physically and emotionally some help?  Are there any new trials that he should look in to?  What are the top 3-4 alt treatments that people are finding helpful?  Is chinese medicine an option?   Thanks!
Title: Re: Women Speak Out about Peyronie's Disease
Post by: chiguy on December 12, 2009, 08:45:38 AM
Dancer,

It is important that he find a urologist that is willing to work with him. I imagine he is on some combo of vitamin e, l-arginine, pentox, and maybe a stimulant like Viagra or Cialis.

I took vitamin E and motrin for a while, but the pain persisted. After taking prednisone and alleve, the pain eventually subsided around month 9 or 10. Most sufferers stop experiencing significant pain around this point.

Many members also use a traction device such as a VED or Fastsize. There is a VED section in the forum. Mentally this disease takes a toll, which causes further problems such as ED, so it is important to stay positive.
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Skjaldborg on December 12, 2009, 12:32:34 PM
Dancegrrl

Cognitive or behavioral therapy may be helpful. The first part of the disease (the active phase) is most difficult because of the pain, the sudden changes and the emotional turmoil. It will get better but it will take time. I am a very introverted person but talking to a therapist has been very helpful for me in dealing with my anger about this disease. It may also help your boyfriend grow as a lover and as a person when he learns that there is more to life than "hard sex."

I would not put much faith in alternative treatments-they are not medically proven and some may be scams. Stick to the medicines prescribed by the urologist, in particular your boyfriend should try pentoxifylline if he's not already on it.

-Skjald
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Dancegrrl on December 12, 2009, 01:26:20 PM
Thanks to both of you for your helpful responses.  Very nice.   Good to know the pain subsides with time and I'll look in to the VED option and medication you mention.  Cheers!
Title: Re: Women Speak Out about Peyronie's Disease
Post by: ohno on December 12, 2009, 06:17:42 PM
First of all he should be thankful to have a girl friend like you, secondly he should immediately get on pentox (you can find Dr. Lue's study easily on this site or just enter Dr. Lue in search). There's no getting around that this condition sucks but he should really be pro-active especially if this he is in the early stages. He can learn alot from this site - traction is a pain in the butt, however it has helped me quite a bit. Good luck
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Lea on December 14, 2009, 05:51:55 AM
Hi my name is Lea I'm 31 and my husband is 31. The scary thing I've come to realise is although I've been with my husband since high school and only ever been with each other I've not known just how a normal erect penis should be. I've only ever seen my husband really till I saw on the internet of how they should be compared to a bent penis. I've known my husband since he was 16 and from the time I first experimented with him at age 18 I thought it was the norm. So sadly I realise that he may have Peyronies for an extremely long time already. Since I started writing articles about this topic it has actually caught my attention with regards to what my husband's penis looks like. It has shocked me and now it concerns me. I have left subtle hints and emailed two websites about the topic and just suggested he read it. I don't think he did. I don't think he has any pain but his penis stands verticle hugging his body. And the force it has when trying to gently move it away from his body seems a bit reluctant.
I don't know what to say or how to say it to him. As I don't want to hurt his feelings and just want to help him.
Can anyone give me any advice about how I should go about this or perhaps how to approach the subject with him.

Kind Regards
Lea
Title: Re: Women Speak Out about Peyronie's Disease
Post by: jackp on December 14, 2009, 09:51:42 AM
Lea

All men are different just like all women' breast are different.

It could be just the way he is. He was like that at 17-18 and it was not a problem then. What is the problem now?

When comparing him to internet porn you are not doing him or yourself any favors.

Jackp
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Lea on December 14, 2009, 11:11:57 AM
Hi Jackp,

True all men are different and perhaps it is the way he is. I guess the problem we are experiencing recently is that sex has become a bit awkward not just for me but for him too. There have been a few times where we've just abandoned the situation after some time trying.
I don't actually compare him to internet porn as I'm not really interested in that sort of thing. It really does nothing for me.
I guess how I've compared him is to a similar website on Peyronie's disease that shows examples of the effects peyronie's has caused.
It has just concerned me a little.

Lea
Title: Re: Lea
Post by: Hawk on December 14, 2009, 04:45:26 PM
Lea,

It does not sound like your husband has Peyronies Disease but then you have not given a lot of information.

Peyronies Disease is not characterized by the angle in which the penis is attached to the body, but on a deformity of the actual shaft.  There is usually a bend, curve, or dent in the shaft itself.  Many if not most men that get very firm erections tend to have a penis that stands upright at a angle that would cause the penis to lay against the stomach when the man is laying down.

Also, Peyronies Disease is a progressive disease.  It usually appears with a rapid onset of deformity and then progressives in stages after that. Peyronies Disease ALMOST NEVER occurs in men in their teens.  When it does it is almost always the result of an memorable injury.  If he has a deformity at all, if may have been there since birth (congenital).

Title: Re: Women Speak Out about Peyronie's Disease
Post by: Lea on December 14, 2009, 04:55:50 PM
Hi Hawk,
After some further reading on the forum here I realise it may not be Peyronie's disease, but possibly congenital curvature. With my husband it doesn't matter if he is laying down or standing upright the angle of the penis doesn't not change or move.

cheers
Lea
Title: Re: Women Speak Out about Peyronie's Disease
Post by: jackp on December 14, 2009, 08:17:41 PM
Lea

Some internet sites have ulterior motives so I was somewhat brash this morning.

With the additional information he needs a complete check up with blood work for testosterone. He may be on the low side. Some men start loosing testosterone in there early 30's.

Good Luck

Jackp
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Lea on December 14, 2009, 09:00:09 PM
No worries Jackp, no offence taken.

I think the best thing my husband can do is just get a full check up that way he'll know where he stands and then I'll be right beside him to help with whatever it may be.

My husband and I have gone through a few hurdles that could well have torn us a part because we didn't communicate but believe it may be ok as we have survived the dark hurdles and passed them. So I'll tread lightly and ask about his health background that I don't know about as I'm sure I know at least 90% that associated with other parts of his body.

I think 'Old Man' suggested that it may well be congential curvature since I believe he's been this way since I've known him in high school. I don't know of any injuries to the groin area he may've had as that is the area of health I don't know about. No matter I'll just take it a step at a time.

Thankyou

Lea
Title: Re: Women Speak Out about Peyronie's Disease
Post by: LWillisjr on December 14, 2009, 10:39:27 PM
Lea,

I think it is admirable of you to take such and interest in your husbands "male health". But I would also encourage the two of you to talk about it with each other. I know it can be difficult, and many men don't want to think about being different or "not normal". As jackp stated, we are all different.

However..... after saying that, I think it is important to understand further what is happening. IF your husband's size and shape has always been the same, then I too am having trouble comprehending the problem you describe. Each man's erection angle is different. Some point straight out horizontal to the ground (while standing), while others may point almost straight up (while standing). As long as the erection is fairly straight, I don't know of anyone having issues with intercourse based on their erection angle.

So there real question is, what if anything has changed. If his erection is bent or has changed, then you may want to investigate further to truly understand if he does have something like Peyronies disease. There is a good (non porn) picture if you go to wikipedia.com and search on "Peyronies Disease". There is a picture of a somewhat extreme case pictured there.
http://en.wikipedia.org/wiki/Peyronie%27s_disease (http://en.wikipedia.org/wiki/Peyronie%27s_disease)

There are several men on this forum including myself who have Peyronies Disease and are happy to offer advice. I've been extremely blessed and also married my high school sweatheart, and she is the only one I have known as well. We are going on 33 years of marriage, and would love to see you and hour husband work past this hurdle and add many more years to yours as well.

Les
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Lea on December 15, 2009, 12:37:35 AM
Thanks Les,

I've tried to go more indepth in the PM I sent you about the changes I'm experiencing. As mentioned I wish I could draw a picture as its hard to explain what I see and everyone interprets the information differently. Unfortunately my scanner is not working but will get a new one soon. As maybe the picture could explain more than what I can write.

I do value any information anyone is able to offer so maybe I can understand more and perhaps approach things in a better manner.
I do apologise for the vague information as I do lack the information about how my husband feels and any details he may shed light on. So I do understand that is hard to know for sure which or if anything is actually wrong with him until I sit down with him and have a chat.

I'll probably talk to him from the angle perhaps how we both feel when we have sex does he feel anything different and maybe lightly touch what I may feel is different. Perhaps that way I am not overly directing or suggesting that something is wrong with him. I know its such a sensitive area to talk about I just want to get it right without him feeling bad about things too much.

Cheers
Lea
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Skjaldborg on December 15, 2009, 12:21:04 PM
Lea,

I am one of the younger guys with Peyronie's (age 30) as I acquired this disease earlier this year. This has been a difficult time for me and my wife of 5 years (we have been together for a total of 10). One thing that has helped us is to try to frame things in a positive way, particularly with regard to changes in our sex life. Some of my physical changes down there have necessitated some improvisation during love making. If something is uncomfortable or not working we say something like, "I really like X, let's try that instead," and we try to view it as a chance to try new things and experiment. Afterward, we discuss things that worked and didn't work. Honestly, it's not that much different from before in that we have always tried to give pleasure to the other and communication is a key part of that.

Also, it might be best not to have a big "sit down" chat with him. For men, sit down chats happen when we are in trouble and may put us on the defensive. Try to ease into it by talking about your sex life in a positive light and then ask about any discomfort he is feeling or that you are feeling. The goal of communication is to make things better for the both of you.

Best of luck,

-Skjaldborg

Title: Re: Women Speak Out about Peyronie's Disease
Post by: Lea on December 15, 2009, 04:05:05 PM
Thank you Skjaldborg

Good idea, I hadn't thought of it in that way but do understand where you're coming from.
From time to time when things arent working I have suggested "Can I show you something I enjoy". With kids around we've learnt to steal some moments with spontenaety which unfortunately has become a bit difficult in the last few months. But we'll definately experiement a few other positions that may also give both of us pleasure. Over the last few months it has been difficult to climax together, he usually waits for me. He does get a bit disappointed when I've not been able too, but that may not be necessarily his fault but possibly my own. But will try to avoid any sit down approach and perhaps look into more of his likes and dislikes and go from there.

Thanks again.

Lea
Title: Re: Women Speak Out about Peyronie's Disease
Post by: iamthewife on February 23, 2010, 05:18:32 PM
This just seems so surreal to me that Peyronies Disease is something that my husband is up against, and with that so am I.

My husband is 42, I am 32 married for just under 4yrs and we have two little boys under 3.  My husband has always had an incredible sex drive, ability to maintain an erection, an ABOVE average length and girth and it wasn't until mid July of 07' that his began to change.  We were having sex and we just moved wrong and he literally bent his penis.  It was excrutiating pain for him, and although it didn't "break" there was some bruising.  Our sexlife returned to normal once he "healed" but I did notice that it was not as spontaneous, and I was making the moves first versus him looking for me.  I just attributed it to us being new parents, and the changes that come with that.
At the end of 08' he began noticing a small nodule on the shaft which I could not feel nor see, but he insisted it was there which really freaked him out because he thought it was something cancerous.  We did our research and came up with the conclusion that it was Peyronies Disease.  Shortly after that time he began complaining that he felt that he was losing length, and that sex was a bit painful at times, or if he had an erection it could be uncomfortable.  Before I knew it our sex life was just about obsolete.  I thought it was me, I obviousley was still carrying extra baby weight lbs from having two kids back to back..we were experiencing severe financial difficulties, new marriage, had to move, etc etc..and our marriage was just on constant high alert! 
For the past 6 months or so I have been asking him WHY WHY WHY, what is the real deal...again thinking it has to be me.  He could not give me answers.
We have been in counseling for almost 9 months now..and just the other night we finally were together and his penis not only is it not as long, and he has lost girth it has significantly curved upward. 
I am not bothered by it at all, and as much as I have tried to convince him that it is a plus in a girls book because of our anatomy he is severely freaked out by it all and is just now allowing himself to accept that he has Peyronies Disease.
I am here for him, and love him no less..and want to do everything possible to help him not only regain his confidence but of course break down this scar tissue, and help the the curvature stop and hopefully straighten.
I am a bit confused on what really works, what doesn't...
Anyone that can help?
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Skjaldborg on February 23, 2010, 06:05:06 PM
Hi iamthewife,

Peyronie's Disease is very difficult for both the men who have it and their partners. I am very sorry you have to go through it. Being supportive and getting counseling are two very good steps forward and I commend you and your husband for doing that.

You haven't mentioned if your husband has sought medical treatment yet and I suggest he go to a urologist as soon as possible. There are also male sexual health specialists such as Dr. Lue in San Francisco, Dr. Levine in Chicago and many others around the country who are up to date on the latest treatments for this disease. You can look through the forum boards to find out more information. These specialists can provide the best information on surgical and other treatments as well as assist with issues such as erectile dysfunction, a condition which sometimes accompanies Peyronie's Disease.

There is no cure for this disease but there are some prescription treatments and surgical options that may ease some of the symptoms. I, as well as many other members on this forum, have used a prescription medication called pentoxifylline. This drug helped rapidly reduce the pain I felt (pain much reduced in about 3 months) and has helped bring my physical appearance down there very close to where I was before this disease. You and your husband may want to print out the study that was done on this drug and show this to the urologist. It may be found here: https://www.peyroniesforum.net/index.php/topic,772.0.html

You and your husband are not alone and there is much information here on this forum to help guide you through this difficult time. Let me also say that although medical treatments may not bring your husband back to exactly as he was before, the pain almost always goes away within about 12 months and sometimes even sooner. I also found counseling very helpful in getting past the anger and fear I felt at the beginning. Since coming down with Peyronie's in February of 2009, I have dealt with the physical and mental aspects of this disease as best I can, my wife and I are back to having great sex and she is now pregnant with our first child. Things maybe tough for you now but they will get better if you face this together.

Best of luck,

Skjalborg
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Tim468 on February 23, 2010, 07:09:52 PM
Dear Iamthewife:

Have him come here. Tell him that you love him just the way he is - that will help. But remind him that if HE wants to try to regain length or straightness, he will have to do his homework and not be afraid.

He could start by coming here and reading, especially the part for beginners. He will find that the information he can get here will often be more than he could get at a doctors office. Hopefully that will arm him to go to the doctor with specific questions and empowered to take back control of his life.

Hang in there.

Tim
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Old Man on February 23, 2010, 10:13:42 PM
Dear Iamthewife:

OK, you have my permission to show your husband my history with several bouts of Peyronies Disease as well as DC over the past 56 years plus now. If I can still maintain a good sexual life at my present age of 80 plus years old, there is still hope for him to recover at least some of his lost dimensions and serviceability in the sex department.

Tell him to come on the forum and read the histories of the many guys who have posted their symptoms, their treatments and where they are today after their endeavors to regain their previous male posture.

There are many stories that should give him at least some encouragement to seek as much information and help that he can to obtain some good results. If I can help in any way, just let me know and I will be there for you and him.

Old Man
Title: Re: Women Speak Out about Peyronie's Disease
Post by: lojoes on April 12, 2010, 11:27:43 AM
I am using my husbands account that i created for him!  He was diagnoses with Peyronies this year.  I am a ripe old age of 37 and he is 42.  Our sex life is not OVER however it is definatly not where it used to be.  I will stand by him no matter what, but would love to be able to make love without me thinkinghe is in excruciating pain!  We are currently working on trying to get the Verapamil 15 % Gel paid for by our insurance company, as apparently there is a Sole provider provision in the state of PA.  Im not even sure this is going to work.  Can anyone else tell me what may or may not be a great drug to try?
Title: Re: Women Speak Out about Peyronie's Disease
Post by: chiguy on April 12, 2010, 06:10:29 PM
Pentox. Pentox has seen the most success with members of this forum. It is prescription and it costs about $20 per month. Most people see results within a week or two. It takes the pain away by reducing inflammation. Not sure if we have heard of any peyronie's friendly doctor in PA, but a lot of urologists won't prescribe it. There are tons of posts and studies on here that show the effectiveness of it, so if you can't find a peyronie's friendly doctor, mention this forum.
Title: Re: Women Speak Out about Peyronie's Disease
Post by: lojoes on April 12, 2010, 07:22:27 PM
Thanks so much!  My husbands Urologist seems to be pretty good about helping out in anyway.  My  husband is going to try to talk to him in the morning and see what he feels about the pentox....thanks for the suggestion!!!
Title: Re: Pentox
Post by: Hawk on April 14, 2010, 12:08:03 AM
Welcome to the forum.

You will likely have to do more than just ask since most urologist don't even know the role of Pentox with peyronies treatment.  You may want to print the studies from 2 topics in our Resource Library found here https://www.peyroniesforum.net/index.php/board,10.0.html

You will find the studies as attachments to the bottom (earliest) post in each of the two Pentox topics.

Also, you should register your own account and besure each of you log in and out with your own account.

Hawk
Title: Re: Women Speak Out about Peyronie's Disease
Post by: lojoes on April 22, 2010, 03:50:39 PM
My husbands urologist is AWESOME.  He called us an asked us for the forum information etc....and has prescribed my husband the Pentox.  He is a GREAT Urologist.  IF anyone is from PA.  Let me know in a message and Id be happy to recommend him. 
Title: Re: Lojoes
Post by: Hawk on April 28, 2010, 11:14:21 PM
Keep in mind the Pentox is usually taken with Arginine (accessible over the counter at heath food/ supplement suppliers) and low dose Viagra (or cialis, or Levitra).  This is referred to by many as the PAV cocktail.

Title: Re: Women Speak Out about Peyronie's Disease
Post by: Brenda on May 07, 2010, 11:00:15 PM
Quote from: Joshua 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.
Title: Re: Women Speak Out about Peyronie's Disease
Post by: magistramarla on August 12, 2010, 06:46:07 PM
Hi Guys,
  I'm new here, since my husband has just gotten a tentative dx of Peyronies.  I don't seem to be accepted into the ladies' forum yet, so I'm posting my question here.
  I've been researching what has been mentioned on this board about Glucosamine/Condroitin, and I'm a bit confused.  I've been taking it, along with MSM, for 10 years for my joint problems.  Since he runs and bikes quite a bit, my husband also started taking it several years ago.  Could this have contributed to his getting Peyronies?  Should he stop taking it?
Thanks,
Marla
Title: Re: Women Speak Out about Peyronie's Disease
Post by: GS on August 13, 2010, 09:10:06 AM
Marla,

I've taken G/C for probably 15 years or more and I got Peyronies Disease 28 months ago; so, I don't think there was any correlation between the two for me.  I was 58 when I got it.

The fact that most men get Peyronies Disease when they are older combined with the fact that most of us in our 50's and 60's are taking a lot of prescription meds and over the counter supplements is probably just a coincidence.   IMO, we would have gotten Peyronies Disease with or without the meds.

GS
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Rachel on August 27, 2010, 12:14:23 PM
Quote from: lojoes on April 12, 2010, 11:27:43 AM
I am using my husbands account that i created for him!  He was diagnoses with Peyronies this year.  I am a ripe old age of 37 and he is 42.  Our sex life is not OVER however it is definatly not where it used to be.  I will stand by him no matter what, but would love to be able to make love without me thinkinghe is in excruciating pain!  We are currently working on trying to get the Verapamil 15 % Gel paid for by our insurance company, as apparently there is a Sole provider provision in the state of PA.  Im not even sure this is going to work.  Can anyone else tell me what may or may not be a great drug to try?

I am the same age as you, and in the same position... regarding the sex life. If you can, please try Pentox. It has taken the pain away from us, and though sex is now not as it was before, we can still have sex and are trying for a baby, so try getting Pentox... and i wish you the very best of luck. Its hard being 'younger' and still trying to be normal. Wishes. R
Title: Treating Peyronies
Post by: ComeBacKid on August 30, 2010, 12:23:41 PM
Yes, I would second Rachel's comments, pentox has worked well for me.  I have talked to one person out of ALOT of people that claimed topical verapamil worked for him, many said it did nothing, and had to battle insurance company to get it covered.

Check out our report on topical verapamil, and look into pentox (trental) which can be gotten at almost any pharmacy for about $25 per month supply at three pills per day.

https://www.peyroniesforum.net/index.php/topic,328.msg3276.html#msg3276

Comebackid
Title: Re: Women Speak Out about Peyronie's Disease
Post by: gecko on October 03, 2010, 10:40:07 AM
I found this website by searching Peyronie's disease. I quickly found this to be a reliable site that is just what I was looking for. My husband is recently diagnosed & of course very depressed at the hopelessness of this disease. When we finally got in to see a urologist we only saw the PA because again (the 3rd time) he was unable to make our appt. I was just so glad to see someone & frustrated by the office never offering me a visit with a PA in the first place to get an appt. sooner. The PA & others I talked to said if you really want to get to see a urologist sooner to go to the ED. Of course the office manager didn't think that was appropriate & my husband's pain for over 6 months & deformity the last 2 is not considered an emergency. I am a RN. We will be proactive & cautious in managing his care & I am grateful for this forum to help us do so. We already saved $400.00 by ordering a VED from links we found through this site vs. ordering from the rep the urologist sent us to.
I will recopy & or add to this first introduction when I find the introduction area mentioned in Christine's welcome message.
Thanks to you all,
Gecko
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Mike_O on October 03, 2010, 03:53:07 PM
Gecko

Welcome to the forum and site - I encourage you and your husband to read the wealth of info here. I have found this info much more helpful than anything the medical community has to offer at present. VED therapy has been very therapeutic to many here. Please post any questions!

Mike_O
Title: Re: Women Speak Out about Peyronie's Disease
Post by: metooonrio on November 24, 2010, 05:59:58 AM
have just found this site...is it still active?  I can't seem to find any recent posts
Title: Re: Women Speak Out about Peyronie's Disease
Post by: LWillisjr on November 24, 2010, 06:54:34 PM
The site is very active.
Title: Re: Women Speak Out about Peyronie's Disease
Post by: trena on December 01, 2010, 06:07:43 PM
Its great to see this site still exists.  Its been 4 years since I was here last.  A lot has changed and yet stayed the same.  It just helps to read things from others and know you are not alone!
Title: Re: Women Speak Out about Peyronie's Disease
Post by: qweeny on August 31, 2011, 05:29:51 AM
Hi everyone, I'm new and have found some courage to post here. My partner of 5 years has recently been diagnosed, we are both 29. When he told me the diagnosis, he did not explain the potential impact this might have on us. I did lots of research and here I am. I figured, I must find a way to help him and to deal with this together. He is now more involved and we have had some discussion of the next step. This site helped us decide on some supplements for him and I'm hoping there is a way to get Pentox in the UK...

I'm really scared and feel as if I'm being shoved in some random direction of life. I have no idea where this will take us and feel that our plans together are shattered. We had just started to try for our first baby and now neither of us knows what to do. Starting a family is on hold. We don't know for how long and the future seems extremely uncertain.

My partner is amazing and is keeping positive. He seems to be at the first stage of Peyronie's and I hope that we can find a way to treat his symptoms. At the moment he experiences pain and needless to say this has put a strain on our sex life. I'm scared to approach him and we seem to be avoiding that part of our relationship. It's very early days and I can honestly say that I don't know what to do. I jump between feeling positive that we will get through this and feeling really down. I want to be strong for him, but it feels as if we can't even plan our future together.

Anyone ever been through this at a time of planning a family and life together? I feel lost.
Title: Re: Qweeny
Post by: Hawk on August 31, 2011, 08:36:43 AM
Qweeny,

Welcome to the forum.  I hope you find the information and support you need.

I share one man's perspective. I feel for your turmoil.  it is normal and to be expected that your emotions would swing from one mood to another as you confront and sort through this.

Ultimately, what this means in your lives depends entirely on the two of you and your commitment to each other.  In turn, that is influenced by your priorities, your view of marriage in general, and many other factors.  Every situation is different.  I can tell you that I view Peyronies Disease as being more of a psychological issue than a physical issue.  I say that because the physical aspects can be managed or compensated for in other ways.  It is the physiological aspects that are often allowed to destroy lives and relationships. 

The same set of physical symptoms that drive one couple apart often push other couples closer together.

Best Wishes
Hawk
Title: Re: Women Speak Out about Peyronie's Disease
Post by: GS on August 31, 2011, 09:47:50 AM
Queeny,

I have had Peyronies for a little over 3 years now and once I got over the pain associated with the acute phase, our sex life has returned to pretty much normal.  I started with a 45 degree curve and now have a 35 degree one.  I have no pain now and have no trouble ejaculating.  So, life is good, even with peyronies.

Once the painful phase is over, regular intercourse depends on the degree of curvature.  We have no trouble, even with a 35 degree bend.

My advice is to not awfulize the future, get the supplements and have him start VED therapy.  That's been a huge asset for me.

Good luck to both of you.

GS
Title: Re: Women Speak Out about Peyronie's Disease
Post by: qweeny on August 31, 2011, 10:29:50 AM
thanks guys for replying to me, it's so helpful being able to communicate about this.

Hawk- I agree that where this leads is dependent on our commitment, priorities and our individual relationship. I guess in some ways this will give us a huge insight into our relationship with each other. I also agree about the psychological aspects being more of a challenge. At present me and my partner are trying to find a way to deal with is together...but he prefers the not talking about 'negative stuff' (meaning fears, worry, talking about how to approach intimacy) and I'm more of a deal with it head first talk about it and look for solutions, even if it is difficult. I'm scared that I'm not strong enough to be supportive and it makes me feel terrible. My mood swings are loud and clear signs that i'm not feeling very strong in this (yet?) and I worry about how it will affect him...I suppose it's a big wave and we have to go with it. Thank you for your reply!

GS- your response is very positive. When I'm in my 'up' moods about the whole thing, that's what I keep telling myself; That it's early, he started supplements 3 days ago, he has been referred somewhere to talk about a pump (is that a VED?) and that things will get better. I'm determined to keep working on maintaining this outlook more permanently. I really love him and want to muddle through the tough bits. Your advise to not awfulize the future is spot on. I think in many ways it's the uncertainty of things that is so hard to accept (but then again, nothing is ever certain). I'm glad to hear that you have come through this. Thank you!
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Old Man on August 31, 2011, 10:44:46 AM
qweeny:

Just read your original post and the answers to it. Yes, the "pump" is a VED (vacuum erection device). The VED therapy has been a huge help to a lot of guys on and off this forum.

There is a whole section of posts/threads devoted to the VED therapy and your should avail yourself of that experience. The forum considers me to be the VED guru and rely on my vast experience in the VED therapy world.

After you have read through the posts about VED therapy, the experiences of others and looked at the VED board where the protocols for VED therapy is listed, let us know if there is any further questions you and your partner may have.

VEDs are available in the UK and there are several guys that live in the UK that can give you the sources where they obtained their VEDs. I am sure you will be hearing from some of these in the very near future.

Again, feel free to ask any and all questions about VED therapy and I will be more than happy to help in any way.

Regards and sorry to hear that he has joined the ranks of the Peyronies Disease family. However, there is light at the end of the tunnel. I know because my Peyronies Disease history dates back for over 58 years now.

Old Man
Title: Re: Women Speak Out about Peyronie's Disease
Post by: qweeny on August 31, 2011, 10:58:36 AM
Old Man- thank you so much! It's great to know that there is so much information and support about VED's and I shall venture in to that topic soon.
I will probably spend a whole day reading. I think finding out what we can do is really empowering.

My partner is still to hear back from being referred to the clinic to talk about VED's but it's a great idea to get familiar before the appointment. On the one hand, I think as it's that kind of clinic the advice might be good, but after the urologist appointment...not so sure.

Thank you for offering to help us with any questions!
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Old Man on August 31, 2011, 12:24:34 PM
qweeny:

You are most welcome! That is what we do on this forum, help any and all that need it. If you need any private or personal assistance, feel free to send me a private message off the public forum.

Best regards, Old Man
Title: Re: Women Speak Out about Peyronie's Disease
Post by: LWillisjr on August 31, 2011, 06:24:48 PM
qweeny,

Glad to see you finally got registered. Sorry for the delay.
Title: Re: Women Speak Out about Peyronie's Disease
Post by: qweeny on September 01, 2011, 04:40:48 AM
Hi Iwillisjr!

Thanks so much for being there in the mean time!  :)
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Davea on September 01, 2011, 06:22:01 AM
Hi Qweeny,

Regarding where to get a VED in the UK, I got mine from iMedicare. Phone 0208 207 5627 Speak to either David Breen or Vishvam. Website http://www.imedicare.eu/onlinestore.html.

They were very helpful to me.

If you need anything else let me (or any of the other guys) know.
Title: Re: Women Speak Out about Peyronie's Disease
Post by: qweeny on September 03, 2011, 09:53:20 AM
Thanks Davea! Really appreciate your input on this thanks! It so great that so many of you are coming to our rescue! :)
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Davea on September 04, 2011, 12:04:11 PM
Qweeny,

No problem at all. A couple of things you should know about the VED:

1. Old Man is the expert (hope none of you other guys object to me saying this!).
2. The VED recommended from the iMedicare range is the SOMAcorrect Xtra - the one with 3 tubes.
3. This VED comes with some 'accessories' for erectile dysfunction (ED). If you don't need them throw them away. In my opinion (and you can ask Old Man for his view) they could make your partner's condition worse.
4. There is much written on this Forum about using the VED but following the protocol (https://www.peyroniesforum.net/index.php/topic,697.0.html) is very important. I (along with many others) have suffered some very worrying injuries from not doing so.

Hang in there.
Davea
Title: Re: Women Speak Out about Peyronie's Disease
Post by: qweeny on September 21, 2011, 06:13:10 AM
Hi guys!

It's been a while since I have been on here. My partner and I are feeling more optimistic. Although there are good days and not so good days, we are hanging in there and thinking of this as just a hurdle to get over.

My partner has had an appointment at a VED clinic and he has been measured for a VED and so on. The doctor there was surprised that no one had spoken to my partner about his Peyronies (he was quite shocked to see the VED's there) and nicely wrote to our GP to say it was disappointing that he had not been prepared. Also, he booked him in for tomorrow to answer any questions we might have.

We had been trying to find a way to see a specialist to prescribe him Pentox, and had lots of good advice from people on here. Luckily, his father lives abroad and knows a doctor who was happy to prescribe Pentox for my partner, and it arrived in the post today!  ;D He is also taking all the wright supplements, so hopefully the pain will subside in the near future.

To anyone who is on Pentox, we know he should stay on in for at least 6 moths, but my partner wondered on average how long it would take for the pain to subside taking Pentox?

We can't afford the VED just now, but hopefully will get one soon. Just wanted to update on our progress.

Thanks to everyone for all the support.

queeny x
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Skjaldborg on September 21, 2011, 12:29:38 PM
Quote from: qweeny on September 21, 2011, 06:13:10 AM

To anyone who is on Pentox, we know he should stay on in for at least 6 moths, but my partner wondered on average how long it would take for the pain to subside taking Pentox?


My pain went away in a matter of weeks. It takes about a month for pentox to take effect but when it does it is very noticeable. Best of luck.

Skjaldborg
Title: Re: Women Speak Out about Peyronie's Disease
Post by: qweeny on September 22, 2011, 09:26:48 AM
Skjaldborg,

Thank you so much for your response. I hope it is the same with my partner- it definitely gives us hope, especially with regard to having a healthy sex life and trying to conceive.

Thank you again.

queeny x
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Skjaldborg on September 22, 2011, 10:25:30 AM
Qweeny,

My healthy and happy one-year-old daughter was conceived while I was on pentox. It has the side effect of increasing sperm motility (really!) :)

Best of luck,

Skjaldborg
Title: Re: Women Speak Out about Peyronie's Disease
Post by: qweeny on September 22, 2011, 10:46:57 AM
Wow! Really, how cool is that!  ;D I guess you've been through everything we are going through now. It's fantastic to see how positive you are and you must be over the moon with your little one! Really makes me feel good about the future.

Would you mind if I PM you sometime with regard to some of the stuff that's coming up with peyronies, the relationship and trying to conceive?

queeny
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Skjaldborg on September 22, 2011, 01:50:52 PM
Qweeny,

Feel free to PM anytime.

Best,

Skjald
Title: Re: Women Speak Out about Peyronie's Disease
Post by: qweeny on November 14, 2011, 07:48:50 AM
Hi everyone! I though a bit of an update would be nice. Things seem to be getting better, my partner has continued with the oral treatments (supplements and pentox) and it does seem to be helping. He has noticed a reduction in the curve, has really hard erections, the 'lump' seems to have gotten smaller and sex feels the same as it used to!

There is a slight downside that with all that extra blood flow, my partner says it actually hurts more at the moment when he has an erection. He has been taking the meds for around 2 months now.

So far we are keeping sexual activity for around my fertile time as we are trying to conceive, which means we generally have sex twice around that time and once the week before.

We are both feeling much more positive and can't wait until the pain issue resolves; that at the moment is the biggest issue for us.

Hope this brings hope to all those on pentox and the other supplements- we think they DO work! :) xx
Title: Re: Women Speak Out about Peyronie's Disease
Post by: mike67 on November 14, 2011, 08:42:23 AM
Thanks for this encouraging post Qweeny. I am sure everyone here is happy for you and partner with the progress being shown to his condition. I am still waiting for the suppliments to show they are working and probably will have to go for V I or surgery. But my priorities are different than yours as a couple. I turn 69 today so life is a little different at this age. I hope things continue on an uphill slant for you and yours.
Mike
Title: Re: Women Speak Out about Peyronie's Disease
Post by: qweeny on November 14, 2011, 10:17:23 AM
Thanks Mike! a very Happy Birthday to you!!! All the best to you too, whichever route you decide to go for.  :) xx
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Skjaldborg on November 14, 2011, 12:41:52 PM
Quote from: qweeny on November 14, 2011, 07:48:50 AM
my partner says it actually hurts more at the moment when he has an erection.

I experienced this symptom as well. This went away completely for me by the 3 month mark, probably due to medication. Best of luck to you guys!

Skjaldborg
Title: Re: Women Speak Out about Peyronie's Disease
Post by: qweeny on November 15, 2011, 05:14:46 AM
Skajald- thank you! We are thinking it's a part of the process that will pass, hopefully it will be as speedy as it was for you! Thanks again, your positive story has been inspirational xx
Title: Re: Women Speak Out about Peyronie's Disease
Post by: HFB on February 20, 2017, 07:18:38 PM
Quote from: jackp on January 20, 2009, 11:15:49 AM

I know you are far from this but 10/08 I had a successful implant and now have a normal sex life. Surgery is always the last option.
IMHO get him on Old Mans VED exercise as soon as possible. This should help keep his penis healthy and keep size loss to a minimum.
With his sex drive down he should have his testosterone checked. Not just total but all the most important testosterone is the bioavailable, disregard the total T the bio should be at least 70% of the upper range of the lab.
I know this may be too much information all at once. Just encourage him to have sex as much as possible, sex is not defined as penis in vagina there are many ways to have sex, use your largest sex organ The Brain.
You are a long way from where I started. The other important advice I can give you is not to try shots in the penis for ED, that is what caused my corporal fibrosis.
Good Luck, there are many here that are willing to help. Peyronies is different for all of us. FYI I am 66 now.
Jackp

Is increasing size or girth a possibility and to what extent with an implant or is it only to get rid of the bend and make it stable for intercourse?
Title: Re: Women Speak Out about Peyronie's Disease
Post by: LWillisjr on February 24, 2017, 06:07:07 PM
jackP hasn't been on the forum for awhile. There are others though that have had implant surgery. I believe in some cases some length and girth can be regained. You might check in the 'surgeries' section for some of these responses.
Title: Re: Women Speak Out about Peyronie's Disease
Post by: KikiO on February 10, 2018, 06:05:04 PM
My husband of 10 years just had his first injections yesterday. He is in pain and feeling so down. I urged him to join this group, but he didn't want to admit that he needs help. I miss his old 'self' too, but how can I help him know or believe he is loved just the way he is? If he doesn't believe it himself... Any thoughts on what you, if you're a man, wish your significant other had said while you were going through treatment? Whats the best support a wife can offer? Thanks for any advice....
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Stabler on February 10, 2018, 06:22:20 PM
Hello Kikio,

Welcome to the forum, has your husband done any other treatments? When you say that he cant admit he needs help can you explain that more... He is getting the injections (Xiaflex I assume) so it sounds like medically he knows he needs treatment and if he is getting injections then he must be seeing a urologist that is at least knowledgeable about Peyronies. It will be good for you to hear from the men in this forum to help you understand what kind of support your husband may need or how to help him understand you are there for him.

It is good that you have told him about the forum, there is a great support system here for him if he becomes interested. Maybe if he knows that he can just browse the forum without having to post that might help him.

If you have any questions please feel free to contact me

Stabler67
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Discofeet on July 22, 2020, 03:49:52 AM
Hello everyone, thank you for being on this forum, I have spent the past 3 months reading through and trying to get through this situation. My wonderful boyfriend has peyronies, we met in December, it was love at first sight. He started with the acute pain in March and since then We have seen 2 urologists (1specialist) and are following their advice.

What we have found to help the most is daily massage of the penis with pure vitamin e oil.

I am finding it so hard to cope with the lack of intimacy.  He feels unsexy, and I try to do everything I can to boost his confidence(he is the sexiest man alive in my eyes and the condition doesn't affect how I feel about him).

I want to support him 100% but I feel so undesired and just sad. He is able to have an erection with pain. Sorry if tmi but He doesn't like going down on me, so he usually touches me to get me off - about once a week.

His social media habits make me feel so insecure, for example in the last 2days he has followed 4 hot girls on Instagram. I don't get it. He says he doesn't want to masterbate and feels unsexy, so why follow them? I spoke to him about it; He unfollowed a bunch of the ones I voiced my concern about, (ie huge titted 18yr olds :|) and then a few weeks later followed them again - one of them was an old date.



We have a great relationship otherwise and I would do anything for him to make his life easier  (I do all the housework, cooking, daily massages etc). It devastates me when I see another hot girl that he's added. Maybe I am overreacting and if we weren't affected by the peyronies I wouldn't care who he was looking at, but knowing he is lusting after other women when he isnt doing it to me or have a normal intimate real life relationship makes me feel so depressed. I posted here instead of the women's forum because I'd love male input.

Love and healing to you all xx
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Hawk on July 22, 2020, 12:47:23 PM
Peyronies Disease or no Peyronies Disease I think you have legitimate concerns.  I can't help but think he would feel the same if you did the same with photos of guys with six-pack abs and bulging swimwear.

I have to be truthful here.  I can also not relate to him not liking to perform oral sex.  If he can please and drive the woman he loves wild then why wouldn't he?  The only way I see these behaviors as being Peyronies Disease related is if intimacy with you makes him feel pressure for intercourse which he cannot perform and flirtation on the internet makes him feel safe because nothing is expected.

I think you need to consider how sex was prior to Peyronies Disease for some of these answers and maybe have a long, direct, sit-down talk addressing all of these issues for the rest of the answers.  If he does not want to sit down and communicate then you have an additional problem.

Experimenting to see what works and what does not with no expectations or demands can add more spice to a relationship after Peyronies Disease than existed prior to Peyronies Disease.

How does he feel about joining the forum and seeking help and education here?


Title: Re: Women Speak Out about Peyronie's Disease
Post by: projectpd on July 22, 2020, 07:25:58 PM
wow, what a possibly complex situation. Hawk's reply seems very insightful: I can only add not every man likes oral sex in any situation , e.g.  I didn't like it with my extremely beautiful gf because she was extremely hairy (otherwise I would have ).
Can you tell if he still desires you (e.g. thinks you're beautiful, wants to draw/paint you, massage you, gets jealous of other men's attention, has fantasies about you, etc)  , or if he's gone off for some reason unrelated to Peyronies.
"What we have found to help the most is daily massage of the penis with pure vitamin e oil." Massage is helpful, but otherwise this statement seems a bit naive, and really just scratching the surface- there is far more to learn. .  "vitamin e" is a joke (unless you look up the latest research on it which is actually very interesting)
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Hawk on July 22, 2020, 09:16:45 PM
Not to sidetrack the topic but a person who does not immerse themselves in the pleasure of performing oral sex cannot be good at it.  Not sure how you cannot love something that gives your partner pleasure.  Not sure what my line would be but it is way past there.
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Discofeet on July 23, 2020, 03:59:37 AM
Thank you Hawk and Projectpd for your thoughtful replies. 

Last night he was very upset and said he is feeling depressed, I suggested therapy & he dismissed it. I suggested joining the forum he said no. None of his friends understand, Apart from the urologist I'm the only person he can talk to about it. I let him vent and try to reassure him. I think he's really scared, it's heartbreaking I can't imagine how he must feel.

Projectpd, I meant the massage helps with his pain management. He is taking supplements, viagra, lots of exercise, no alcohol& a low inflammation diet. We have been told by the urologists (UK) that his only options are to manage the pain and use the pump towards the end of the acute phase. That's it - we just see what he's left with at the end of the acute phase.   
We both read the forum but most advice seems anecdotal. Do you think we should add something else to aid the healing? Do you have an opinion on heat therapy lamps?


Unfortunately I think modern relationships are different. There is so much choice on social media and women eager to post revealing photos it's like a buffet. It's sad that this is the norm but my friends have said that's what guys do - have a wank bank on their phone of screenshotted women. I am going to continue to support him and just let it go, I don't want to be 'that' kind of gf, monitoring him. I trust and love him, if he cheats I'm gone, but there's no evidence of that. Maybe looking makes him feels better.

I have made it clear I'm not going anywhere and there is zero pressure from me for sex. My worry is that he's actively trying not to get aroused by me (erections are painful) and it is changing his view of me. Any sexual intimacy is on his terms atm. I think I'll do a night where I give him a full body massage with candles and try to be romantic. Arrgh relationships are hard! Thanks again for your insight, it's actually helping me just to talk to people who understand. He would benefit so much from joining the forum. 
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Paolo on July 23, 2020, 05:23:11 AM
@discofeet.
I have had good experience with Acetyl L-Carnitine (ALC) for pain management during my acute phase, 1 gram x 2 day. If he tries it get it with Alpha Lipoic Acid (ALA) included. Many people who don't eat meat are deficient of ALA.
Pain should ease in about 1 week, if you try it please update thread.

DMSO with Aloe Vera gel can also help pain relief, apply after washing or shower. Pain is extremely debilitating, physically and mentally.

Good luck
Paul.
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Discofeet on July 23, 2020, 10:56:42 AM
Thanks for your advice Paul, we'll do some research and try those. Anything is worth a shot. I'll let you know how we get on with it.

All the best



Quote from: Paolo on July 23, 2020, 05:23:11 AM
@discofeet.
I have had good experience with Acetyl L-Carnitine (ALC) for pain management during my acute phase, 1 gram x 2 day. If he tries it get it with Alpha Lipoic Acid (ALA) included. Many people who don't eat meat are deficient of ALA.
Pain should ease in about 1 week, if you try it please update thread.

DMSO with Aloe Vera gel can also help pain relief, apply after washing or shower. Pain is extremely debilitating, physically and mentally.

Good luck
Paul.
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Hawk on July 23, 2020, 11:42:50 AM
I too would recommend the ALC.  There are studies that suggest it helps and it clearly helped my pain at least because I started and stopped it 3 times to made sure that was what was helping.  Hopefully, you have read the survival guide.  If not read it together, probably twice.  It is a lot to absorb with casual reading.  Here is the link https://www.peyroniesforum.net/index.php/topic,3180.0.html

Be a little cautious with the candles etc.  It might be perfect for him but many men think "Oh I see, she really wants sex and has it all planned out and I can't do that."  They then feel like they didn't satisfy your sexual need, feel like failures, get angry and there is a blow-up.   There is a saying that is generally true but of course with exceptions.  Women give sex with the goal of intimacy, men give intimacy with the goal of sex.  To a man, all intimacy ends in intercourse or what is the point and that is what he is apt to read into the candles, message, etc.  Now if he is up for sex, no problem.  If you both know in advance that sex is not the end goal, no problem, but communicate to avoid misunderstanding.
Title: Re: Women Speak Out about Peyronie's Disease
Post by: projectpd on July 23, 2020, 04:10:14 PM
Hi Discofeet, sorry, have only just got back to the forum.  Thank you for your kind words. I usually post on only scientific/technical matters, not personal/emotional, because that's my educational and professional background.  But it's appreciated to be able to post on that sort of thing.

So, yes, I am sure you should get a heat lamp.  In no particular order, this is because of about 3 reasons,

Firstly, the (albeit rare and small) studies on hyperthermia, which did not use a heat lamp to generate heat, but, they still did use heat and that was the assumption on what was the active agent.  Although there was weird stuff in one about energy dosage that I thought was bizarre: Heat is heat.

I posted about this, as you may have read from my previous posts. I was surprised the lamp I got seemed amazingly good value and is especially excellent at being able to position the light beam at just exactly wherever you want it. Much better than any normal lamp I ever had. I would even highly recommend it just to use for a normal reading lamp.

Secondly, using heat helps with both stretching and VED, this effect is really obvious, am sure everyone agrees.

Thirdly, heat usually helps with topical (=through the skin) substance absorption. (increases skin permeability)

I have been using fairly intense heat for some time since then and not found any noticeable adverse effects.

Rice socks or heat pads are not the same, because they use simply contact with hot materials to conduct the heat through the skin, this seems to me not as good as infra red light which irradiates it directly through the skin, with a lower capacity for blood vessels to transport the heat away.

Having said this, I keep meaning to make a little rig to allow tiny infra red emitters to be worn over the penis and shining on it , as this would be more convenient, and save electricity bills. Regarding the latter, I did get a lamp that came with a 125 W  infrared bulb.  I had read a recommendation here, to get a 250W bulb, but the electricity bill would be more, even if the bulb is compatible  with the lamp.  With a 125W bulb, you probably have to be more careful as it needs to be about only 6 inches from the penis. 



yes it seems hard to understand about his behaviour, if you mean that has changed directly as a result of the Peyronies Disease.  After all he'd have exactly the same problem with someone else, or by the sound of it even more so, and same problem with masturbating. It is true that painful erections are unpleasant, I remember the pain outweighs the pleasure! I didn't look into enough possibilities as much as I could have to fight the pain and inflammation. Antinflammatories seems to be the most obvious thing (e.g. dexamethasone, diclofenac, and many substances such as discussed in threads such as DMSO + X).  Options that seem likely to be useful to deliver them directly include DMSO, iontophoresis, liposomes, and yes massaging with oil and heat.  I did use serrapeptase, orally, which seemed to work a bit.

since you think massage helps, you may be interested I bought a 10,000Hz "percussion massager" from Aliexpress. I have no evidence whatsoever that this is either safe or effective - maybe it's dangerous! but I like it!

Title: Re: Women Speak Out about Peyronie's Disease
Post by: Discofeet on July 28, 2020, 07:47:15 AM
Sorry for the late reply guys. You see I didn't even think about that Hawk, it's so helpful to have a mans insight on it. I asked him but he didn't seem keen :-\ So nothing has changed really in terms of intimacy. The survival guide is very helpful! 

Quote from: Hawk on July 23, 2020, 11:42:50 AM
I too would recommend the ALC.  There are studies that suggest it helps and it clearly helped my pain at least because I started and stopped it 3 times to made sure that was what was helping.  Hopefully, you have read the survival guide.  If not read it together, probably twice.  It is a lot to absorb with casual reading.  Here is the link https://www.peyroniesforum.net/index.php/topic,3180.0.html

Be a little cautious with the candles etc.  It might be perfect for him but many men think "Oh I see, she really wants sex and has it all planned out and I can't do that."  They then feel like they didn't satisfy your sexual need, feel like failures, get angry and there is a blow-up.   There is a saying that is generally true but of course with exceptions.  Women give sex with the goal of intimacy, men give intimacy with the goal of sex.  To a man, all intimacy ends in intercourse or what is the point and that is what he is apt to read into the candles, message, etc.  Now if he is up for sex, no problem.  If you both know in advance that sex is not the end goal, no problem, but communicate to avoid misunderstanding.
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Discofeet on July 28, 2020, 07:58:52 AM
Project this is great info, thanks so much. I'm definitely going to get him one, he has been using a rice sock. The lamps are quite reasonably priced in the UK.

The percussion massager sounds interesting! I always thought aliexpress was a dodgy site, but if it give you relief then it can only be a good thing!

Thanks again, I'm going to do some more research into the lamps.  :)



Quote from: projectpd on July 23, 2020, 04:10:14 PM
Hi Discofeet, sorry, have only just got back to the forum.  Thank you for your kind words. I usually post on only scientific/technical matters, not personal/emotional, because that's my educational and professional background.  But it's appreciated to be able to post on that sort of thing.

So, yes, I am sure you should get a heat lamp.  In no particular order, this is because of about 3 reasons,

Firstly, the (albeit rare and small) studies on hyperthermia, which did not use a heat lamp to generate heat, but, they still did use heat and that was the assumption on what was the active agent.  Although there was weird stuff in one about energy dosage that I thought was bizarre: Heat is heat.

I posted about this, as you may have read from my previous posts. I was surprised the lamp I got seemed amazingly good value and is especially excellent at being able to position the light beam at just exactly wherever you want it. Much better than any normal lamp I ever had. I would even highly recommend it just to use for a normal reading lamp.

Secondly, using heat helps with both stretching and VED, this effect is really obvious, am sure everyone agrees.

Thirdly, heat usually helps with topical (=through the skin) substance absorption. (increases skin permeability)

I have been using fairly intense heat for some time since then and not found any noticeable adverse effects.

Rice socks or heat pads are not the same, because they use simply contact with hot materials to conduct the heat through the skin, this seems to me not as good as infra red light which irradiates it directly through the skin, with a lower capacity for blood vessels to transport the heat away.

Having said this, I keep meaning to make a little rig to allow tiny infra red emitters to be worn over the penis and shining on it , as this would be more convenient, and save electricity bills. Regarding the latter, I did get a lamp that came with a 125 W  infrared bulb.  I had read a recommendation here, to get a 250W bulb, but the electricity bill would be more, even if the bulb is compatible  with the lamp.  With a 125W bulb, you probably have to be more careful as it needs to be about only 6 inches from the penis. 



yes it seems hard to understand about his behaviour, if you mean that has changed directly as a result of the Peyronies Disease.  After all he'd have exactly the same problem with someone else, or by the sound of it even more so, and same problem with masturbating. It is true that painful erections are unpleasant, I remember the pain outweighs the pleasure! I didn't look into enough possibilities as much as I could have to fight the pain and inflammation. Antinflammatories seems to be the most obvious thing (e.g. dexamethasone, diclofenac, and many substances such as discussed in threads such as DMSO + X).  Options that seem likely to be useful to deliver them directly include DMSO, iontophoresis, liposomes, and yes massaging with oil and heat.  I did use serrapeptase, orally, which seemed to work a bit.

since you think massage helps, you may be interested I bought a 10,000Hz "percussion massager" from Aliexpress. I have no evidence whatsoever that this is either safe or effective - maybe it's dangerous! but I like it!
Title: Re: Women Speak Out about Peyronie's Disease
Post by: projectpd on July 28, 2020, 12:20:43 PM
that's great!, also it is easier than a rice sock, to do massages and/or stretches combined with heat. Also possible when using a VED.

The massager is also definitely quite an experience. There are no power settings, just different speeds. I looked for 10000 revs/min after reading a few comments such as:
https://patents.google.com/patent/US9265689B2/en
"For scar tissue therapy, a frequency range of 140 to 200 hertz is chosen with 170 hertz being optimum. "
(170 Hz=10200 rpm)
I could find no source for that claim, but thought I might as well have it. Most of them I saw did not.
I got the cheapest on Aliexpress that had that spec. I am sure it would be wise to only use a very little massage at first and see how it goes.

It's not a dodgy site, imo, but it can take an unpredictably long time to receive the goods, but that's well known. I usually have received exactly what I ordered.
Title: Re: Women Speak Out about Peyronie's Disease
Post by: P1992 on July 28, 2020, 10:57:57 PM
projectpd,

Could you say the specific name of the electric massager you purchased on the aliexpress website? Can it work for the chronic phase of peyronie's disease? Does it act similar to shock wave devices?
Title: Re: Women Speak Out about Peyronie's Disease
Post by: projectpd on July 29, 2020, 08:47:10 AM
It is model Wil000012. Seems to be cheaper now than when I bought it, £22. incl. shipping.
Top branded models are not cheap e.g. £549. So I don't know how long it will last. There is no fault with it so far. Perhaps it should need to be looked after carefully e.g. not over used (overheated) or knocked about.

Can it help with the chronic phase? I don't know. There is no research on it I can find, and I will not be able to tell as it is not the only thing I am doing. I have read that "massage cannot soften scars over two years old".  I thought that even if it does not help the scars directly, it may help absorbing topical stuff .

Vibrations are not at all the same as shock waves.  Then again we don't know exactly by what mechanism shockwaves are supposed to help Peyronies Disease.  I would like to think that there  might be some overlap of the effects, and it doesn't strike me as being as risky. For example there is no pain whatsoever, it's just pleasant.
Title: Re: Women Speak Out about Peyronie's Disease
Post by: latoyban on July 17, 2022, 06:52:15 AM
Quote from: Chichibug on February 22, 2007, 04:49:19 PM
howdy again fighter,
i am glad that you and your wife didn't lose your sex life as the peyronies set in. 
i have tried the plan you laid out--the dinner with wine and sexy lingerie... i threw away all of the lingerie because he didn't like it at ALL.  that was years ago.  maybe things have changed enough now that i should give it a try again...  i have offered to fulfill any fantasy he has (with the one exception of not including other people) but he says to keep things like they are.  i know he is a shy person in this way, but i can't believe that there isn't just one fantasy in that head of his...  ::)  heck, i have some of my own, but he has never asked.... ;)
i will try this plan again.  maybe after that 'works' i'll bring up this board.  who knows?  the timing isn't mine... ;)  when it's right, it's right.
thanks again, and i am sooo happy that you are enjoying your life. 
--Chichibug
ps what treatments are you using for the peyronies?  what supplements?  my husband takes some supplements (mostly just herbal antioxidant types), maybe i can slip in some more for him.  :)

oh, and i have been meaning to say that i LOVE your picture.

Sorry for the off topic but I wanna share something
My boyfriend 'laughed' at me when I wore sexy lingerie, well he didn't exactly laugh but he did metaphorically slap me in the face.

So it's Valentine's Day and I want to do something nice for him so I got and buy some nice underwear. Then on the big day I tell him to go get me a drink from downstairs and then when he comes up im wearing the underwear. When he sees me in this lingerie (https://www.upliftedlingerie.co.uk/best-bra-to-wear-with-tank-tops) he doesn't really react... So I ask him whether he likes his present and he replies it's nice but he prefers me natural (ie naked)..... Now before doing this I had been so nervous not because I have body issues but because I was worried (I have quite bad anxiety about everything) that something like is would happen, so as you could imagine I was really quite upset but I wouldn't let my bf see this.

After this I spoke to my boyfriend and he said he was really sorry and that he gets that he completely under reacted but that he had been drinking (had a whole bottle of white wine to himself) and that he got a bit body conscious himself when he saw me.
My problem is is that I still feel awful whenever I see that lingerie or that incident is brought up... It really brings me down and makes me feel so unsexy and URGH. What should I do? Am I overreacting?
Title: Re: Women Speak Out about Peyronie's Disease
Post by: Hawk on August 24, 2022, 08:27:38 PM
This topic is locked.  The original poster has not been active on this forum for 15 years,