Psychological Component - Coping with Peyronie's Disease

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Old Man

nycjake:

Sorry to hear that you failed to get back your lost dimensions. But, from what has been posted here on the forum, patients do not always get them back.

The injection you mentioned is called Caverject. It can be a mix of up to three medicines which is supposed to induce an erection. They do not always work for all guys. I had several of them during a bout with Peyronies Disease, and each one gave me more Peyronies Disease symptoms. In addition, I had 12 Verapamil injections which gave me more Peyronies Disease nodules. So, I do not recommend any invasive injection of one's penis.

Anyway, if there is any anything we on the forum can do to help, feel free to let us know. Thanks for sharing your experience in surgery so that this information will be available to any and all who wish to pursue a course of surgery for Peyronies Disease correction.

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

Tim468

Dear Jake

It may be that something can happen to make you better yet. Perhaps the VED and time plus Pentox, arginine and cialis or viagra could help you medically.

Certainly, the improvement is something to be thankful for. Some men never regain a serviceable erection and others never even get sort of straight. Paying attention to your heart and your head will probably lead to a better you than more medicine or surgery. Take care.

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

bodoo2u


nycjake10002

Can I attach a pdf file to a reply?

If you instruct me, I'll definitely do it.

Thanks for all the support. I'm amazed by it. Finally people who understand!!!

Jake

dahc

This is an add on to my comment in Traction. When I came across the photo of my pre-peyronie's erection it set me back mentally. I guess that over the last year I've gotten used to my new penis and maybe the improvements weren't as significant as I once thought. I'm torn between destroying the picture and keeping it as a memento of past glory.

Old Man

dahc:

My suggestion is this: don't destroy the photo. Keep it as a momento of past pleasures, but also use it for incentive to work harder to regain what you have lost. Diligent use of a VED and/or traction can and will produce results with straightening and restoration of dimensions.

However, there are some cases that do not return to their original dimensions, so be aware that this could happen also. IOW, keep an open mind, expect that you can get results and go forth from there. I have been around the horn with this mess and I know the frustration that you feel now. So, hang in there and keep the faith.

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

jackp

dahc
Last Christmas wife and I found a video of ourselves before Peronies. Over the years I accepted the loss and did not realize how much I lost.
Keep the pictures. That is part of whom your are.
My wife reminds me on occasions that "I did not marry you for your penis". With that attitude we have developed a closer relationship. Size only matters in our minds. Lost about 1.25". Gained a lot of love.
Jackp

Hawk

As the years roll by, sometime the penis hangs shorter and the boobs hang longer.  Just part of life :)
Prostatectomy 2004, radiation 2009, currently 74 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Angus

Quote from: jackp on February 21, 2008, 08:51:09 PM
dahc
Size only matters in our minds. Lost about 1.25". Gained a lot of love.
Jackp

   That, my friend, along with the rest of your post is a quote of the year. Posts in the Womens thread show that mens worry about size is essentially pointless from their viewpoint. The womens thread should be required reading for newcomers and oldcomers alike. Thanks for a sentence that makes the seemingly complex size issue rather simple. Kudos!

Aldar

       I'm 37, recently divorced and also recently diagnosed with Peyronie's. I have seen many pictures on the web and I'm not that bad in comparison, I have about a 15 degree bend to the left about 3" down from the tip of my penis and the remaining 3" or so seem thinner, like the growth is wrapped around it a bit. It's really not that bad in comparison, I can still have sex and I have very little pain, but, of course, to me, psychologically, it's vastly different form the nicely symmetric and straight penis that I use to have.
      I have always suffered from depression to varying degrees and problems with my self esteem. I'm 5'10" and 200lbs, but I'd like to be about 30 lbs. lighter and I'm not bad looking, but I have just always had self-esteem issues. Now, after recently divorcing and confronting the task of meeting someone new, I have this deformity to contend with. And even though, like I've said, it's not that bad, it is just yet another brick in the wall so to speak.
    My depression and personality make me very reclusive and I do not deal well with people. Given my current circumstances, I now have to deal with finding a woman to be with. I can be alone, I have been often in the past, but I do not wish to be, but because of my previous problems with self-esteem I now have this additional problem to deal with and I'm just not sure how a woman will perceive me now.
    I have seen several women on this forum supporting their husband or long-term relationship and I understand that just fine. My problem is how is a NEW person in my life, one with no commitment, one that does not truly know me yet, one that isn't yet vested in us, is going to take this deformity, however small in comparison to others that have it. I'm not talking about someone I meet at a bar or anything like that, I mean someone that I date for a bit and then comes the time that we're ready for the physical part of our relationship. I'm genuinely concerned that she will react negatively to the shape of my penis. Even if it's not an outward reaction that I'll notice right away, I'm convinced that there will be a negative reaction.
    I've only had this thing for about a year, I guess that I'll eventually get used to it, but I'm just concerned how NEW women in my life will react and how this ailment just pushes me further in to my hole.
    The urologist I saw confirmed it was Peyronie's but he also admitted to knowing nothing about it. I'm in Louisville, KY and as far as I can tell there is no doctor near me that specializes or has much experience with it. I'm going to see someone in Indianapolis next month, but from what I've read, especially since I don't have that severe a case, he'll probably just tell me there isn't much I can do. Why can't they just go in and cut away the bad tissue while leaving the good tissue? I guess that's why I'm not a doctor.
    I have read a bit on the web and started taking some vitamins/supplements. I'm currently taking the following:
         Vitamin E – 2 x 400mg
         Vitamin B6 - 2 x 100mg
         Acetyl-L Carnitine -  2 x 750mg
    And yes, I know I'm just whining and that many others have it worse than me, but it all depends on our own personal perception I guess.

Tim468

Hang in there Aldar.

I have had my share of anxiety over the years about how I look. I met one woman in 1986 who seemed disappointed in my penis. Other than that, I am happy to report that what women liked about me was my ability to love them well, not only  how I screw. And how one screws, is not dependent on having a perfect shape. So... well, things work out when you work on them.

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

Tim468

Just a brief note to those - especially the young men who come here who are hurting so much - about how we can go on to have a happy life, including sex life.

I just got married yesterday. I had Peyronie's Disease when I met her (and yes I worried about it - a LOT - before we first made love), and still have it. I am very grateful that I am mature enough to feel good about myself even when I don't feel that good about my penis. and although you will hear a lot here about "there is more to you than your penis" etc., the fact is that even without a perfect penis one can still be a good lover and, yes, even fall in love and get married.

So to you guys who are feeling bad about your prospects, hang in there. Life can turn a corner and get better (even when you penis turns a corner and decides to stay around the corner!).

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

Old Man

Tim:

Congratulaltions on your marriage!!!! Hope that you and yours have a very long and happy life together, notwithstanding the Peyronies Disease.

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

crank

Quote from: Tim468 on May 25, 2008, 02:15:07 PM

I just got married yesterday. I had Peyronie's Disease when I met her (and yes I worried about it - a LOT - before we first made love), and still have it. I am very grateful that I am mature enough to feel good about myself even when I don't feel that good about my penis. and although you will hear a lot here about "there is more to you than your penis" etc., the fact is that even without a perfect penis one can still be a good lover and, yes, even fall in love and get married.

So to you guys who are feeling bad about your prospects, hang in there. Life can turn a corner and get better (even when you penis turns a corner and decides to stay around the corner!).

Tim

Congrats to the bride and groom.. ;D

crank

Steve

 :D Tim!  I just saw the great news!  Congratulations to you both!   :D

Now, if you answer any of these emails within the next week, I'll know that you're cheating on your honeymoon! :P Get away from that computer and back to that great wife of yours! :D ;) ;D
Topical Verapamil,
12 Verapamil shots (ouch!),
Now VED - Too many Weeks,
Still 70 Degrees :(

crank

Hey Steve..

My unit turned North this year about like yours at age 72..I've been on here for 3 days in the newly diagnosed forum getting info..

The shock caused me to break out in Shingles 2 weeks ago..I see my gerontolgist in 10 days on this and other matters..He's my wife's Dr. too (51 years married)..I don't expect him to suggest treatment since we can still manage sex, but we will see..

I'm not optimistic at this point on remedies..considering VED and started Vit E,ALC,and Co-Q-10 last week..

If you have any newbie advice for me, please post...You're experienced.. 8)

Thanks,

crank

Tim468

Thanks for the comments guys. Crank, you're just a little nipper compared to Old Man. I think that the VED and some of the supplements is a great place to start.

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

Old Man

Tim:

Thanks for the vote of confidence! I see that you did not take Steve's advice and stay off the forum for a week or so!! Just kidding of course.

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

Tim468

My honeymoon starts in about 24 hours. I will be away for a good two weeks!

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

Old Man

Crank:

Yes, Tim is right. You should start some sort of "treatment" immediately. A lot of guys, myself included, have found that the VED proves to be a good and viable treatment for Peyronies Disease. If started early on after you are diagnosed with Peyronies Disease, the VED can and will give good results.

It has been determined through much trial and error that the three cylinder VED does the better job of helping with Peyronies Disease symptoms. If you would do some research on the VED topic of the Child Boards section of the forum, you will find many posts about the VED and its usage.

Should you have questions about the VED, just feel free to ask and you will receive many answers. Hope you can get rid of the shingles soon as they can be very devastating to one's life style.

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

Old Man

Tim:

Way to go man! TWO WEEKS may just be enough time.

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

crank

Quote from: Tim468 on May 26, 2008, 09:28:47 AM
Thanks for the comments guys. Crank, you're just a little nipper compared to Old Man. I think that the VED and some of the supplements is a great place to start.

Tim

First time I've been a little nipper on a forum.. ;D

Thanks for the replies guys, and the encouragement..I'll be on here daily studying the VED thing and will ask for advice on it if I can psych myself up for the 26 week program,a 3 cylinder unit,manual pump,and lots of grease.. ;D

Tim...have a great time on the honeymoon..cool.. 8)

crank..

Old Man

Crank:

You are not very much a "nipper" or young whipper snapper as we say down South!! I will be 79 this summer and that is not much older than you. Most of the guys do know me as Old Man. I started using that name on another forum and a lot of the guys moved over to this one, so I just stuck with it so we all would know one another.

We will be glad to help you getting a good source and a good price on the three cylinder VED if and when you decide to go that route. We have found a site that sells a medical quality unit for about 1/2 what it sells for from the manufacturer.

So, we are here to help, so let us know.

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

crank

Quote from: Old Man on May 26, 2008, 05:14:05 PM
Crank:

You are not very much a "nipper" or young whipper snapper as we say down South!! I will be 79 this summer and that is not much older than you. Most of the guys do know me as Old Man. I started using that name on another forum and a lot of the guys moved over to this one, so I just stuck with it so we all would know one another.

We will be glad to help you getting a good source and a good price on the three cylinder VED if and when you decide to go that route. We have found a site that sells a medical quality unit for about 1/2 what it sells for from the manufacturer.

So, we are here to help, so let us know.

Old Man

I agree that we are in the same ball park...I have read a ton of your posts and know that you are one of the heavy hitters on this forum...work out 3 times a week at the YMCA and enjoy a romp in the bedroom...plus, you know a lot about Peyronies Disease...I appreciate your posts and plan to make some calls to the companies provided in the links this week...to get more info on the VED subject...

Many thanks,

crank

P.S. I train at a YMCA too, and post on a couple of fitness forums for beginners... ;D






jackp

Crank
After almost 15 years with Peronies and the side effects I did not find this board until last October after a failed implant surgery.
I have a prescription VED that was fit in the doctors office October 06 after heart stents and postponed implant surgery. I did not get good advice or did not listen and put too much pressure to quickly and caused an abrasion that took weeks to heal.
Old Man told me how to properly use the VED and now I do it every day for corporal fibrosis. I have gained back 1/4 to 1/2 inches of size lost to Peronies.
Old Man knows how to use the VED and at 65 I hope to be using my equipment to 79 and beyond.
Loss of 1.25 inches to Peronies was psychologically a downer but a supportive wife made the world of difference. With her support it has not been the problem it could have been psychologically. The ED from the Venous Leakage also has been a major problem. Without the VED I could not function.
Good Luck. There is much help here.
Jackp

crank

Hey Jackp..

Thanks man for the reply..Sounds like you have had a rough time with it...now better..I agree that this forum takes some pressure off..it has me...I feel like I'm at least fighting this deal by getting info and sharing the condition with peers who have it too..It is one hell of a shock when the old reliable tool goes crazy on you..I've spent 5 hours reading and learned some things..plan to keep it up..

Good luck,

crank

P.S. I got a funny email yesterday attributed to Willie Nelson,the singer,on his 75th birthday...He said,"I have outlived my dick."

Old Man

crank:

You have not outlived your dick, just got a setback. It can and will be repaired if you seek help early like you are doing. Just get something started as soon as possible.

Sometimes, all the docs do not know what to do with Peyronies Disease. It seems to have a mind of it's own! So keep up what you doing and get busy with "repair" work.

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

Tim468

You gotta love Willie Nelson, but you also wonder what he and his dick might be up to if he didn't toke weed every day too.

OTOH, I'm not sure if I believe him. It's a great line, but that doesn't mean it's true!

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

George999

The following study has just been posted:

The Chronology of Depression and Distress in Men with Peyronie's Disease - Abstract

Quote from: UroTodayUsing validated instruments, we have demonstrated that 48% of men with Peyronies Disease have clinically meaningful depression that would warrant medical evaluation. This high level of depression stayed consistent across time since diagnosis. These data suggest that most men do not psychologically adjust to their diagnosis of Peyronies Disease and all men with Peyronies Disease should be considered appropriate mental health screening.

Hopefully this will not mean that we will simply be labeled as a "mental health issue" and dumped off on the psychologists so that the uros don't have to deal with us anymore.  - George

Hitman

yeah it seems a lot of doctors like to play the "mental issue" card once too many times.

Tim468

Impact of Peyronie's Disease on Sexual and Psychosocial Functioning: Qualitative Findings in Patients and Controls.

Rosen R, Catania J, Lue T, Althof S, Henne J, Hellstrom W, Levine L.
New England Research Institutes, Watertown, MA, USA.

Introduction. There are no validated scales for assessing the psychosocial impact of Peyronie's disease (Peyronies Disease), which affects approximately 5-10% of men over age 50. Aim. To develop a psychometrically valid outcome measure for assessing psychosocial and sexual consequences of Peyronies Disease. To conduct a qualitative study of men with Peyronies Disease and age-matched controls, and design a new patient-reported outcome measure of Peyronies Disease. Methods. An expert advisory panel identified relevant topics and conceptual areas to be addressed based on clinical experience and literature reviews. A conceptual model was developed to serve as a discussion guide for qualitative interviews with geographically and ethnically diverse Peyronies Disease subjects and controls. Interviews were conducted in a focus-group format by a trained interviewer and were recorded and transcribed for qualitative analysis according to grounded theory concepts. Main Outcome Measure. Focus-group interviews. Results. Focus-group interviews were conducted with 64 men (28 Peyronies Disease patients, 36 controls) in 13 separate focus groups over a 3-month period. Blinded analysis of the interview transcripts identified four core domains: (i) physical appearance and self-image; (ii) sexual function and performance; (iii) Peyronies Disease-related pain and discomfort; and (iv) social stigmatization and isolation. Based on feedback from participants and experts, a new outcome questionnaire was developed to assess core domain responses in a structured, self-report format. Conclusions. This qualitative study helped to refine and broaden the focus of the conceptual model for further assessment. It also confirmed that Peyronies Disease has a major impact on sexual and psychological function in these patients.

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

Hitman

thats not very pleasing. looking forward to the day where more options are available.

Old Man

Hitman:

We all are looking forward to the day when there are more aggressive therapies/treatments for Peyronies Disease. In the meantime, we just deal with our problems and at least try something rather than just waiting for a "cure".

This disorder has been around in the known world since the 1700s and so far there are no definitive treatment/cures found. So, we accept the fact we have it and get on with our lives by trying some form of therapy.

I know there are many men suffering from this disorder that just are afraid to make public their problem. We should band together and do our best to help others cope with this mess.

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

Hitman

I'm not depressed by any means oldman. just saying that someone else might not view this study in a positive manner and maybe drive himself into more misery.

Old Man

Hitman:

You are 110% right! I am sorry that my words did not come out like what I meant them to say. What I was trying to say is that no one should just accept the fact that they have Peyronies Disease and not try to do something about it. This is a very devastating disease and causes much havoc in men's lives.

I realize that all men do not take the same position that some of us do about it and need more help than others. So, bottom line, we are all in this together and should be helpful to each other. Thanks for reminding me.

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

Tim468

Funny, I do not see the study in a positive or a negative light - it's just a description of something we all already know - men with Peyronie's Disease suffer emotionally.

The value of this study is that urologists (who as we have all seen here, are not exquisitly tuned into feelings and emotions) might start to attend to this important aspect of caring for the man with Peyronies (for whom they might be able to do something), even when they cannot do something for the man's penis.

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

pjchap

i've a question i'm 25 i'm surrounded by good friends and family yet i haven't told a soul about my condition.. i don't want to give away any weakness !!. i don't want it to get out in this small town i live in..! i'm afraid of it biting me in the ass!! i've been tempted to tell my ex what i have but that definitely would be bad news!! i'm not a bad looking chap and i've had some nice girls show interest ... i am single but i wont get into anything with anyone of them..!
funny thing is the more i've shown no interest the more the woman want me!!ha ha ha typical woman wanting what they can't get...!! (joke ladies)
but my question is should i be open and tell all my friends and family what i have? i have fallen out with my family alot in the past year for various things .. but i know peyronies onset was tough for me and because i couldnt talk about it they dont understand...!!

George999

1)  No, I wouldn't go around telling everybody.

2)  I WOULD try to find a way to bring my immediate family up to date on it.  One possible way is to tell them that you have a difficult medical problem and that you would like them to come with you to see the doctor so that in case they have any questions you can't answer, they can ask the doctor.  Then make an appointment for a consultation with the urologist and take them with you.  You could check with the urologist ahead of time to make sure he or she is willing to help in this way.  Again, I wouldn't take the whole tribe along, but parents or adult siblings would be possibilities.  The idea is not to reveal this to a lot of people, but to bring on board one or two supportive family members.   This can make all the difference in the world in your anxiety level.  Many uros are excellent in handling these types of  situations.  I few aren't, unfortunately.  Hopefully yours is.  Others may have even better suggestions.  I wish you the best!  - George

LWillisjr

Guys,
I have to admit that if I had contracted this disease at the age of 25, my parents would probably be the last ones I would want to share this with. And typically any doctor during a visit is going to have you drop your pants and examine you there in the office. My wife has been with me on every visit and has been my biggest supporter during this process.

Once I was diagnosed I did share this information with my sons and very close firends. I felt it important for them to at least know about this disease for their own awareness.

So I guess I'm suggesting you share this with those you trust, and not with someone who will run up and downt the streets in your town telling everyone else. Particularly if you don't want others to know. I would encourage you to take someone along to your uro visit(s) if you are comfortable with it. I do find that 2 sets of ears are better than one. Sometimes it is hard to pick everything the doc says, and my wife is better at that then I am. And she helps remind me of questions I want to ask. And the most important aspect, is having someone to discuss this with.

Again, it needs to be someone you trust. You will find posts here about the emotional and psychological impact of this disease.

Now.... on a side note. I'm starting to open up with more and more people people about this. I'm past the embarrasment, and the anger. I feel more people need to know about this, that more men have this than we know, and that we need research and better treatment strategies. This will only come with those of us who suffer from this to speak out, and let the world know this is a bigger problem than society realizes. OK, will step off soap box now and exit the stage.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

Hitman

I have no intention of telling my family about the disease, assuming I'm diagnosed with it. I have found that pelvic floor exercises seem to help, as it looks like my pelvic floor muscles are very tight. I have lost 35lbs of body-weight and I'm going back to my endocronologist. I'm not sure how I will be able to hide the VED from the rest of me family.

Old Man

hitman:

Make time for your VED exercise therapy to be around your normal bath time each day if time permits. If you have a bathroom in your bedroom area use it for all your therapy. If you don't, just take the VED into any bathroom you use, do your thing there, and just don't worry too much about anybody in your family asking questions. If they do, just take them into confidence and relate the whole story. This may help someone else with Peyronies Disease that does not know how to handle the shock of having something wrong with your most prized possession, your body.

I agree with both of the previous posts. First, you do not really want the "whole world" to know you have this problem. But, you should confide in at least your wife and adult sons if you have any. I am now not sure that Peyronies Disease may not "run" in a family genes. Several of my uncles and cousins had Peyronies Disease over the years when I was younger, so I knew all about when I first got it. It was not so widely known then, but my first cousin doctor knew about it.

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

Ben

Hi,
i've been using the ved, taking pills and many more without any real improvement, excpet harder when on ved. I'm am so tired of this condition. I've got a bad shortening and bending... I feel like hanging myself most of the time. I can't accept this disease (2 years now). Do you feel the same ?

Old Man

Ben:

Sorry to hear that you have this terrible mess called Peyronies Disease. There a lot of guys on this forum that share the same feelings you have at the moment. You are wondering "why me" and why do I have to put up with this crazy mess.

As I said, you are not alone in this problem. Most every guy on this forum has it now or has had it in the past and we know what it is like. We are all in the same "boat". Now, I have said that to say that you are in the right place to share your feelings and ask for help. My history goes way back for about 55 years now with this disorder. It is posted somewhere in the Child Board or History topic so I won't repeat it here, but you should read all our histories to gain much knowledge of Peyronies Disease.

In my past history with Peyronies Disease, it has come and gone several times only to rear its ugly head again and again. I have dealt with it for oh so many years and wanted to just drop off the face of the earth because of it, but I worked through it and now I am in an arrested state with it.

So, what I am saying is that you have to deal with it. Keep trying things in order to find something that works for you. This forum is filled up with many areas of exercises, oral therapy and even the VED therapy that has helped many.

Ask any and all questions that come to mind and we are here to help. If we don't know the answer, someone will do their best to find it for you. So feel free to indulge us with your questins.

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

Tim468

Dear Ben,

Those of us here really feel for you. As a man who has had Peyronie's Disease since I was 21 and am now 53, I can tell you this - though it may not get better, you can get better.

I hope that you can get help for your feelings of despair and suicidal thoughts. That deep dark place in our souls we go when things are feeling bad can be scary and apparently endless. But such depression is not inevitable! If you are truly feeling like hurting yourself, I hope that you will get some help for that - and to hell with VED's or pentox.

They say that pain is inevitable, but that suffering is optional. I hope that you can find a way to move ahead with hope and optimism. Feel free to PM me any time.

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

jackisback

I feel this way very often too, Ben.  To be honest, I'm sure now that I was unhappy before Peyronie's and I had suicidal thoughts before, although I doubt many people who know me would predict that. Suicide has been on my mind a lot more since this happened. I fell in love with a girl who accepted me for this condition. I felt like she was an angel who would save me from this doom of suicide or meaningless life, and now that she's left me I often feel that my one shot is ruined and no one else will love me, at least no one I will also love. I never try to get with girls, and sometimes in public I can't believe this restriction no one else knows about is in my life. Like it is a silly bad dream of some horrific, ridiculous disease that doesn't even exist and when I wake up everything will be as it was before.

But the truth is that you are 27, and I am 22, and we both have a lot of life left, which can be a scary thing, but maybe not. This new drug Xiaflex has produced some very promising results for people with Dupuytren's already.  Here is a video of a man who, for all I know, could be the most famous person with Dupuytren's (so it's not just the best case of the study they picked out for the TV piece).

http://www.theindychannel.com/health/16902359/detail.html

He seems very pleased with his initial results, and although it's not a sure bet, I think Xiaflex is a real thing with real potential that we can put hope in for us Peyronie's sufferers.  Just today Auxilium released their second quarter financial report, and cnnmoney reports (search google news)

--  The Company received feedback from the U.S. Food and Drug
   Administration (FDA) on the phase IIb trial protocol for XIAFLEX in
   Peyronie's disease and expects to dose the first patient in the third
   quarter of 2008.

I personally believe this drug has real possibility to make an impact, and a grizzly, horrific end to life would be a sad mistake when there is real hope that perhaps in two years or so we could have the rest of our lives back, several decades of a high quality of life.

Tim468

AHem! ::koff koff::

I am 53 and I want "several decades of a high quality of life" too!!!

You little nippers should expect MANY decades of a high quality of life.

Oh, one other thing - let me clarify. I have Peyronie's disease, it is not cured, I am not hardly any better, and I already have a high quality of life. I wouldn't mind if it was all the more wonderful though.

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

Old Man

Jackisback:

I forgot to mention (until Tim stated his age) that next month 79 years will have gone under the bridge of my life. My first encounter with Peyronies Disease was at the age of 24 so that makes 55 years of it coming and going like a swinging door!

So as I posted to you on the VED topic, just settle down, learn to cope with this mess and you will survive it, believe me, I know first hand! Just keep looking for some therapy/treatment that works for you. Only a very few guys fail to realize some benefit from their efforts.

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

Hawk

Many will know the name Annette Funicello (sp).  She is a celebrity that suffers from MS.  Recently I heard her quoted by a man with significant life threatening, devastating issues in his life.

The Quote: Life does not have to be perfect to be wonderful!

It has caused me to pause and reflect.  All lives consist of blessings or fortunate circumstances mixed with trials and problems.  We choose which aspects of our lives we dwell upon.  Like a small object held close to the face, we can block a huge positive world from view by dwelling on what is wrong.

I am not dismissing the pain associated with real problems and I am not trying to be trite, but maybe we need a topic on what is wonderful about our lives in spite of Peyronies Disease.  Though I have written much about Peyronies Disease, I could write much more about what is wonderful.  I could also write about trials far greater than Peyronies Disease.  I get to choose what to dwell on.

Hawk
Prostatectomy 2004, radiation 2009, currently 74 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Angus


  Post of the year, Hawkster... post of the year.

Old Man

Hawk:

Amen to what Angus said! Glad to see you posting again. Trust that things are looking up better for you.

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