Psychological Component - Coping with Peyronie's Disease

[despise]

Sorry for my laziness. I apologise. I am very scared and have recently been talking to my ex girlfriend. Im so happy im not alone in this anymore but now I want to get better so I can have fun like a 17 year old should be having! I am not ready to try anything sexually. I have stopped smoking cigs and I am recently working out. As for the marijuana and xanax thats going to be a little harder.

[George999]

despise,  I can only tell you that any amount of marijuana is bad for you and not only for your Peyronies.  Additionally, unmanaged amounts of Xanax are bad for you.  But you alone have to grasp this.  Once you get it, there IS help out there.  But the really big issue is that you understand and acknowledge that they are bad for you.  Its just like with food.  Once people really understand how their body reacts to various kinds of foods, they have no problem to change their diets.  You really need to understand that this is NOT a moral issue (although some folks try to limit it to that, which is not helpful), it is a personal health issue.  You need to decide whether you want to choose good health or choose to continue to ruin your health through bad choices.  The rest, the addictions and all that, are easier.  If you really want to be healthy and you want it bad enough, there are doctors around that will be more than happy to help you with any physical addiction issues.  On the other hand, if instant gratification is your priority, you might as well save your money and your time, and kiss your long term health goodbye.  There are worse things out there than Peyronies, and I am sure you don't want to find out what they are.  I think you are a plenty sharp young man and capable of making some wise decisions here that will guarantee you a better future.  But only you can make those decisions.  I wish you the very best.  - George

[mac10]

Psychological harassment that is what I have been dealing with from some of the people I work with in the workplace. I am not sure how they did it may have been some form of beta blocker we think. I can tell you that I had problems with my vision mostly in the center field of my vision just before the  symptoms started. I live alone and had not been with anyone for some time they knew this the officers that did this knew that it would work I know from the harassing comments. I just want people to know that some how it is possible to induce this disease on someone. Your problems with Peyronie's disease maybe of someone other than yourself in the making but I can tell you that its one of the hardest medical problems I have had to deal with I just hope I don't lose my mind in the process.

[Tim468]

Dear Mac10,

I am not sure what is going on in your life, but it sounds like you would benefit from psychological help. My advice is to seek the competent care of a psychiatrist and psychologist. They can compliment each other - the MD can prescribe medications and the psychologist can do talk therapy with you.

This disease is hard enough without struggling with the emotional aspects alone. Underlying mental health problems can make it even worse. Best of luck to you.

Tim

[Hawk]

The only thing that needs to be said or responded to by anyone on this issue, has already been said by Tim468.  I encourage you to follow his suggestions.

Administrator
PS: Since this was started with a repeat post that is posted in the "Psychological Aspects" topic, these posts will be merged under that topic since they have NOTHING to do with an education and awareness campaign.  Duplicate post was deleted.

[mac10]

I have been advised to stay away from this group till this is settled have a nice day.  

[jtnester]

For the longest time, I felt that my problems with Peyronie's was purely physical.  I thought that the device implanted into my penis ruined my desire and ability to ever have sex.  Now after four years, I am beginning to open to the idea that sex is still possible and that I just have to get myself in the right frame of mind. Granted it will take the right person, and will involve getting used to activating the device.  That's my worst problem; I'm afraid of the device.  I've only tried it once in all of these years and I'm no longer even sure that I got it to engage completely.  Any body else with this particular mental hang up?  Sorry that I didn't post this correctly.  I replied to another posting in error; but I'm not fully acquainted with how the layout works.

jtnester

[Hawk]

JT,

I am glad to hear you are ready to extend some effort on this.  Any new change takes time to adjust to.  I think you should go through a program of activating your prosthesis at least once or twice a day.  I am sure you will find that the first several times will not be as good as it will eventually get so expect some disappointment at first.  You may have had some shrinkage and you will also get more skilled and coordinated at using the pump device.

I think working on this has the potential to build some confidence and quality of life, especially if it eventually results in some personal interaction that you have been missing.


Hawk

[jackp]

JT
I agree with Hawk.

You might try what I did when my implant was activated last December. Pump up the implant and hold for at least 5 minutes 2 times a day. Do not try to use the implant until you have done this at least 3 times.

It is going to be sore!!! No way around it. I take 800mg of IB for arthritis and found that helped for the soreness.

The first time I tried to use the implant (sex) was after following the doctors suggestion. I waited until I had pumped up the implant 4 times and was holding for 10 minutes. That was the first week of December and the soreness was so bad I had to quit about 1/2 way though. By Christmas sex was good by New Years sex was amazing. Now I wish I had it 10 years ago. I can now activate the implant discreetly and she does not know I have it active until she feels it.

Like a couple of us guys on the implant board related to the first time we had sex with a girl that never had sex before she was sore. Now it is your turn.

Take it slow and easy. I bet if you let her your lady will be more than willing to support you.

Jackp

[j]

jtnester - usually I don't comment on these psychological things but your post hit a nerve.

I don't have an implant, I'm just 'bent',  but I went through something similar - I felt shut down, out of it, for a very long time.  And that feeds on itself - after so much time has gone by, you feel like it just wouldn't be possible to get going again.  But, you can.

The key for me was this:  rather than pressuring yourself to get into the "right" state of mind, think about getting out of the "wrong" state.  A bit of travel, new surroundings, helped in my case.  

Don't beat yourself up because you haven't used the implant, it doesn't matter.  I think jackp is right, just start using the thing and get accustomed to it.  I had to get over the hurdle of realizing that my "bent" equipment still functioned, and it's changed appearance didn't really matter.  It's just plumbing.

[MUSICMAN]

I think the issue of men and their perception of "their" sexuality has been a problem for all with or without Peyronie's Disease.  ( Note I have been told by medical staff that I don't have a disease, I have an affliction. )  At times some have issues if their penis is big enough or if they perform well in comparison to others. "jtnester" seems to have had a implant that would work but is afraid to use it. "J" states that he had some lows in his life until he realized that his equipment was just bent but still functional. Auxilium will not allow you in the trial of Xiaflex unless you have a bend of at least 30 deg.

I have had issues in my life that in reality were much more traumatic than my issue with Peyronie's. I must say that the psychological problems with this disease has hit me harder than I thought possible. If my bend was 30 deg. or less I would consider myself cured. If Xiaflex was to remove 1/2 of my bend I would still be bent at a condition of more than most on this forum. After 35 years of marriage I feel attracted to my wife but can't perform. In the last year I can see our relationship has changed to some degree due to this. I have tried most methods for treatment but really need surgery.  I would go now for surgery (knowing the risk) but financially it is out of the question.

Some say that it is only your penis and that will not stop you from having a great life.  This may be true but I do know it has changed my great life in to one of mental anguish.


Post edited to full width.  no wording was changed
Hawk

[j]

musicman, if for even one second I sounded like I was minimizing this problem, or saying "get over it", I apologize.   Oh, and it is a disease not an "affliction", it's a type of fibrosis that can affect other parts of the body (and does, in my case).  An "affliction" sounds like something out of the Bible.

Although I'm functional today, I don't know how long this will last. My areas of Dupuytren's contracture continue to progress, my Peyronie's may do the same.

W might be about the same age (late 50s).  Peyronie's tends to kick in at this point, but so do other things related to aging in general, and it's hard to separate the two. Until Peyronies Disease came along, I'd sort of been putting off aging -  I was in good physical shape and didn't feel much different from how I felt in my 30s.    When Peyronies Disease hit it was like a big overdue bill had to be paid - and I had to start seeing myself in the mirror as I really was. Ouch, it felt like I almost turned gray overnight      My wife also has normal issues associated with aging.   Separating all this from Peyronies Disease, in my head, helped somewhat.

Hang in there - I think Xiaflex is going to be coming on strong in the not-too-distant future.  

[Jonny13]

Hey all,
As a younger "sufferer" of the disease (I am  24), I am curious if anyone has gotten any positives out of this interesting disease.   Personally, I have already experienced some ED problems because of this, and in fact I brought the disease on myself through some youthful stupidity (I know I'm not alone here).

For example, has it made you stronger in some way mentally?  Has your relationship changed for the better in any way?  Or maybe it has just made you more aware of your body, you have gained medical knowledge, you know more about the practice of medicine, etc.  At the very least, I've already found the positive of meeting (in a way) this group of very intelligent and goal driven people

Look, there is a possibility that this will be with me for the rest of my life, and you as well.  Just thought I would bring this up, since  I've been dealing with the mental aspects of being a newly diagnosed person getting started on other aspects of life (grad school, getting to know some nice women, etc.), I'm really curious what you have to say.

Cheers

[George999]

Hey Jonny,  I don't expect to have Peyronie's forever and I'm 61.  I hang out on the research sites and I see researchers closing in on the solution to fibrosis and cancer rapidly.  Where not there yet, but barring some total cataclysm, I expect powerful new treatments soon that will make todays treatments look trivial.  Peyronie's has really gotten me to explore the science behind it all and I am more positive today than ever, and I have been positive about this since it started over four years ago.  I indeed look at it as challenge and I have grown a great deal as a result.  I a strange kind of way, I am thankful for it, but I have to admit, I look forward to being rid of it as well.  That said, I have to admit that I am not as affected by it as some of you are and that helps a great deal in keeping a positive mental attitude.  It also helps to be older in a sense, but that also means I have less time for a cure so its a kind of two edged sword.  But even now, it is possible to stop it in its tracks with Pentoxifylline and Vitamin D and things are only going to get better.

And when it comes to women, it is us guys who place such great importance on sex.  An awful lot of women really don't care.  Many of them value security and romance more than sex.  Believe me, if a female falls for you, I suspect there is a better than even chance she will be happy to take you just as you are, Peyronie's and all!  For sure my wife has taken it in stride, other things are far more important to her.  - George  

[Hitman]

i always thought you were a smart "young" man George  

[arnday]

Hi everyone

I think I made like 1 post before or something but anyways ill tell you all where I am now disease wise. Im now 20 years old, over the past 2 years my plaques have grown without interruption. They now cover somewhere in the region of 80% of my penis. Im in intense pain both when flaccid and erect. My curvature is at such an extent that sex is impossible. Ive found doctors and urologists to be of little help and honestly im quite sure that im just going to kill myself now. I thought maybe in the past that there was some hope of beating this disease, or at least being normal enough, but you lot and I know that with such extensive plaques which im quite sure surpass most peoples on this board, theres no way back for me. Frankly I cant face being 20 and forced into painful celibacy for the rest of my life, ive barely coped with being unable to have sex for the past two years. I dont get how you guys do it, living like the freaks we are.

Andy

[Hawk]

Andy,

Your post touched me.  Since you have not posted, I have no idea what the specifics of your condition are, what you have tried, who you have consulted.  I can tell however that you are in a lot of emotional pain in addition to the physical pain.  The physical pain will certainly go away eventually, even if you do nothing.  The emotional pain is up to you to fix.  And you can fix it as well as do a lot about your condition (which is a separate issue).

I encourage you to communicate with us on a more regular basis and share the details of your condition along with your thoughts and emotions.   You should also consider professional help in dealing with the psychological issues. You have to trust that you are currently looking at the future through a fogged up window.  You cannot make decisions about the future on that basis.

I also want to address some misconceptions.  I have the knowledge based confidence that in your life-time there will be solutions to issues even as complex as total regeneration of tissue.  These things have already been successfully done in vitro and in animal models.  So your conclusions that you are destined to a painful life of celibacy are based on a lack of knowledge or your clouded view of reality caused by emotional pain.

Force your chin a bit higher, square your shoulders, and carry yourself as thought you can work through this and you will work through it.  As Johnny 13 wrote, you will likely gain much in the battle besides just improving your physical condition.

Regards

Hawk

[Jonny13]

Andy,
As you can see I check this site very often, with the main reason being that it gives me comfort to know there are many people like me from all walks of life fighting this battle.  But it is also because it is fun learning things from people more intelligent than me.  Stay here and learn, from me and everyone.

I too am young.  I am 24, but contracted this when I was 21.  And I did it from being stupid.  However, I lived literally 3 years without giving my ED problems more than a glancing thought.  I was out traveling the world, enjoying life, making amazing friends, and trying various jobs.  Now that I have very little to do, it suddenly dawned on me that something is wrong with my body.  

THink about it.  3 years and I barely blinked an eye, and people I know call me the happiest person they know.  

Now I am going to school again soon, and will be for a long time.  I know what will happen.  I will often forget that I have this.  I will find purpose in school and in my life.  And I will meet amazing people, like those on this board, who will become friends and mentors.  And then afterwards, my dream is to use my degree to help people who are far less fortunate than us.  And maybe the disease will sometimes be a reminder of why I am chasing this degree in the first place...not for money but out of love for people.  And, yes, we are fortunate.  

Remember that.  Trust me, I know that there are 100 medical problems I would rather have than Peyronie's.  However, I'd rather have Peyronies than a 1000 other medical problems.  Think of all those who can;t walk, have various "real" diseases", don't have enough food, and even don't have enough water.  And yet many of them keep living and smiling.  

I like interesting people.  I think this disease will make us into interesting and deeper people.  And while it may scare away those shallow women out there, it may become something like a screening mechanism.  Amazing women won't care, and may even find it cool, to know that we are strong enough to deal with something like this.

One last thought as I lie here in bed.  I've had 2 categories of sexual experiences in my short life.

1.  The type where I have a fun 15 minutes, but then cannot wait for the woman to leave so I can watch TV and strum my guitar...do anything but be around her.

2.  The type where I wake up in the morning and could never be happier because I am lying next to an awesome person whom I really care about.  The sex was great, but that is not why I am so happy.  It is because she is there with me.  IF this is the reality...minus the instertion part... we will have to deal with, it is a good one.  No it is not the best.  But it isn't too bad for sure.

Hang in there and use it as motivation for other areas of life.  And even a close family member told me I informed her of it...it's only one area of life.  In our society, we are bombarded with the idea that our penis and virility makes us a man.  Look outside of the box.  This is not true.  Look at people such as Stephen Hawking and other amazing people who are FAR less fortunate physically, yet, literally, "are the man".  Funny, but today he and others are my heroes as well.  Let them become yours.

Well, this turned out a bit long.  I apologize if it is a bit out of order and bumbling, but these are my thoughts this morning, Andy.  Life is your decision, and trust me, there are so many awesome things in life it is not even funny.   Don't miss out on them.  Remember, I'm not one of these wonderful "geezers" on this site, like I said.  I'm a young tike too...but I'm going to deal with this and fight, and maybe even advocate for it in other arenas one day, and I hope you do the same.

Jon

[Tim468]

Dear Andy,

Hang in there. Your first post was painfuil to read, and it sounds like you are not making much progress emotionally in dealing with this tough blow that life has dealt you.

You are much more likely to suffer from your emotional pain, than from the problems with your penis..

Here is a picture of what the good surgeons can do right now with a completely fibrotic and non-functional penis - one that does not get hard at all and has dense fibrosis:

https://www.peyroniesforum.net/index.php/topic,30.msg9079.html#msg9079

In the picture, they create releasing/relaxing incisions, and then place an implant, along with grafts.

And, on the research front, Dr. Atala has already created a functioning penis in a rabbit. Yup - they cut the poor guy's penis OFF and built a new one, attached it, and it worked. This was done as a proof of concept (in other words, to show it could be done). This WILL be available to you within ten years.

http://www.webmd.com/news/20060523/lab-grown-replacement-penis-in-future

In ten years you will be 30, in the prime of life. You have the capability of getting a functioning penis that would work for sex within six months should you go the surgical route. You could have a recontructed penis within ten years. These are facts - they may not be what you signed up for when you decided to become a human who likes sex (IOW, an adult like us) but we are all in the same boat and are getting through, all of us, with options just like you.

Finally, you have posted here twice. You might gain more from this community in several ways. YOu could post more here, and gain support from those of us, who, though we have not met you, feel greatly for you and what you are going through - and we have been or are going through the same thing. Support is a good thing.

Secondly, you could learn about what you could be doing here. By reading and listening, you might find that you could A) see a better urologist, and find out who that might be, B) start on more "experimental" therapy like Pentox, C) start using the VED and learn how from those who have done it before. In many many ways, coming here will potentially help you in terms of learning, and DOING something for yourself. Depression has a terrible way of keeping us from doing what is good for us.

Finally, by posting here words of support for others, you will come to see that when we start to help others, it helps our own state of mind.

All these suggestions are good things, and I strongly encourage you to follow through on them. You absolutely need better help with your psychological state, as it is a threat to your life right now.

So please stay around and learn, post, and hopefully start to take steps to get better.

Tim

[jackp]

Andy

Take it from an "old cuss" there is something that can be done.

After a failed implant attempt 10/07 I started my quest for the best doctor in the southeast for help. With all my problems a local doctor said that I probally would have to have complete corporal reconstruction. For that no one in Memphis had the skills so I was refereed to Dr. Milam at Vanderbilt. I do not want to go into a long story here but you can read my History under Our History thread.

To make a long story short I did not have to have the radical corporal procedure. The right doctor can be a blessing. General practice urologist do not have the skills you need a penile specialist or a Male Sexual Function specialist.

Good Luck and remember never-ever/never-ever/never-ever give up. Like Tim says there is something for you.

Jackp

[McNally]

Are there any groups meeting in the Chicago area? I know this may sound weird, but I would really like to talk to someone face to face about all this. I'm a patient of Dr Levine's - I'm in the Xiaflex study - I'm currently seeing a therapist (for a lot of things, but this is a big one of them). I would be willing to host. Is anyone else feel the need to get off the computer & into real time? Has this been tried before? Are there reasons this is not a good idea? I think (hope) I'm in the placebo group. I'm 70+% curve & trying to figure out where to go next. I'd just like to talk. McNally

ps I moved this - this seems like a better fit than "General Comments"

[Hawk]

McNally,

I know of no reason a face to face support group would not be a good idea other than the problem with finding enough of a concentration of men in one local willing to meet.   While we have thousands of members, lets guess that 1500 are in the U.S.  Let us then guess that half of them are regulars (active on the forum, (700) and that about 500 of those are willing to meet face to face.  These are VERY rough guesses but that would be about 10 representing each state.  With that number I am sure there are some areas with a concentration that could support a meeting but most could not.  Local ads may pick up a few more.

The PDS certainly supports your effort and wish you well.  If you care to post information we encourage you to do so.

[ComeBacKid]

Mcnally,

Hawk is right, not enough people and they are to scattered.  However if you talk with people via pm, they may be willing to call you on the phone and talk, sometimes talking is good to heal the soul, even if it has nothing to do with peyronies.  To have a local meetup you'd almost need another topic like prostate cancer, or ED to draw enough people to make it worthwhile, and this would defeat the point of a peyronies meetup.  

Comebackid

[UK]

McNally

If you are a patient of Levine and you are set on having a support meeting group - which is a great idea - book a room somewhere,  ask Levine for his help in maybe distributing a mailshot to addresses of patients of his in the local area and see who turns up. If he is a good guy he might let you use his clinic, which would give people more confidence it wasn't some sort of set up. You may be surprised, sometimes all it takes is to ask.

[McNally]

Thanks for all the information guys. I esp like UK's idea of involving Levine & I'd like to see if I could get any interest from a counselor to maybe lead or moderate. But to start, if just a few (2 or 3) of us can get together to talk (vent, whatever) over some beers or coffee I'd be willing to organize, host, whatever. Anyone here from Chicago, please send me a message if your interested & we can give it a shot. In case I haven't mentioned before, I'm 58 & in the western suburbs, but get into the city frequently.

[McNally]

As suggested, I talked to Dr. Levine yesterday about the idea of a Chicago area support group. He felt that there are more than enough people in the area to "support" such a group (no pun intended)    It's just a matter of reaching them & seeing if they'd be interested in this type of group. He said he'd be willing to distribute information about such a group to his patients. He also offered to come speak to such a group! And finally, he gave me the name of a therapist who I might interest in "facilitating" such a group meeting.

All in all, not bad! Thanks very much for the idea UK! Now I have to get something together to distribute, thru Levine's office, here, ads, whereever. If anyone has idea for a group that I could use as a model, please let me know. I'm thinking of looking into things like cancer support groups and such.

Again thanks all.

[Old Man]

McNally:

I work with a cancer support group in my home town known as US TOO. This is an International  prostate cancer group. Google the name and you will find the phone numbers and a whole lot of information about them.

They will be glad to assist you in forming a local chapter of US TOO or perhaps your own group as you see fit, etc.

Old Man

[Hitman]

McNally:

I work a cancer support group in my home town known as US TOO. This is an Internation prostate cancer group. Google the name and you will find the phone numbers and a whole lot of information about them.

They will be glad to assist you in forming a local chapter of US TOO or perhaps your own group as you see fit, etc.

Old Man

does the group raise money for prostate research?

[Old Man]

Hitman:

As far as I know they do not do fund raisers for promoting research. They do try to lobby for research money where all possible. They have not been too successful in doing this. We as a group do local work in clinics for the public at any function we have the opportunity.

We wish that more attention could be placed on prostate cancer research by the government organizations responsible for allocating funds, etc.

Old Man

[RichB]

I am at a loss.. I am 19 and I have disease that effects old men... I have not even begun to experience my life yet.. I am but a freshman in college and I won't even get to experience it to the fullest.. Why me? What have I done to deserve this? This baffles me to no end.. I feel alone.. I feel worthless. I just want to go back in time and tell myself to take it easy. Tell myself not to do this or to do that. Tell myself something. What am I to do? I am but half the man I used to be.. I can't even feel affection for my current partner anymore . I can't feel the same joy I have always felt. I don't feel the same anymore. Life seems meaningless.

I have spent my entire life experiencing the discipline of abstaining from sex until it was right. The moment I do feel it is right, it is instantly ruined.

Every time I ask the Lord himself if I am going to be alright, I get a strong resounding feeling of affirmation. I will be alright. But when? When will I find relief? In what way? Will this case mysteriously disappear? Is it possible that I am not only an anomaly in the age group, but an anomaly in the disease pattern itself?

My doctor told me I will make a full recovery. I must confide in that. Until I find out I will not be ok, I must assume that I will be ok.

All I want relief from is the pain.. The pain.. I can't stand it. It is a constant reminder that I am some freak of nature. It never goes away, it never subsides. Whatever I do helps nothing.


 

[nemo]

RichB, I know it's very depressing and panic-inducing dealing with Peyronie's, but you should also realize the majority of men dealing with Peyronie's have fulfilling sex lives.  It's rare that Peyronies Disease stays so acute and causes a deformity that actually prevents sex.  Even in that case, there is surgical intervention that can help remedy this.  From reading your posts, I don't think it's even clear that you have Peyronies Disease - at least you're not showing any noticeable deformity, correct?

So, I understand your pain and despair, but also realize most of the guys on this forum have Peyronies Disease and most of us also have sex.  Peyronies Disease isn't a death sentance for sex in most cases, and while you may feel that way now, it is highly likely you'll learn to deal with it and enjoy sex once again.  I suspect you strained a ligament or something and as your doctor says, you'll see a full recovery in time.  Either way ...

I'm pulling for you, friend,
Nemo

[RichB]

I have noticed some sort of deformity. It isn't strong, and it isn't something that is life ending so to speak, but it is there. There is only one thing I am unsure of though. I have always had some kind of penile deformity, the one that happens since birth. I haven't had an erection feel the same since I have had symptoms. I have speculated with some that I might be passing a kydney stone or something of the sort which is actually causing the pain. The pain itself seems to fluctuate. When flaccid, the penis never actually becomes "softly" flaccid, and it seems kind of swollen. Every doctor I have seen says everything looks normal. It feels hard when flaccid, and after I move it around a bit and squeeze it and such it kinda gets "back to normal," y'know. The pain is now on the top right before the glans on the shaft. But it does seem like it bends more than usual when I am getting an erection.

As far as I know, a months time since any trauma is way too soon to develop any symptoms or signs of peyronie's... But who knows, I have had doctors tell me that it could happen and doctors tell me its highly highly unlikely.

I am scared. Very scared.

[RichB]

Oh, and I apologize, I mean no disrespect when using the term "old men." I come from a long line of long living "manly men" and I know that being old is in no way a bad thing. I would have never gotten through most times in my life with all of your infinite wisdom. I hope I can be as much a help as you are to people some day.

[jackp]

Ronald

The psychological aspect of peyronies is the strongest emotion a man can have.

Most men here understand your pain. The pain (emotional) is not between our legs but between our ears and the sooner we accept that the better we will be. I have been dealing with this for 14 years and never-ever/never-ever/never-ever gave up. When you are less endowed like myself the loss of about 1 1/2 inches would put you down if you let it.

Surgery is the option of last resort. Try the VED exercise. After 13 years I gained back about 3/4 of an inch. If the three cylinder VED is not available in your country the single cylinder will do with just a little modification. You can read about that on the VED thread and if you have a problem or question Old Man will be more than glad to help.

Circumcision is a personal thing. In some cultures it is normal in others it is not. I was circumcised at 5 that was 61 years ago so I know nothing else. I have a friend that had to have a urethral stricture repaired in his penis about 3cm. They used his foreskin for the graft and he is now happy with his outcome. Like I said surgery is the last thing you want to do.

Your partner seems content with you the way you are. My wife of 40 years never complained and we had an active sex life even when I was 98% impotent for the three years leading up to my implant. Your partner can be your best line of support, lean on him some and reap the reward.

Just a reminder, post under the appropriate title. You can read my story under the Our Histories section. Any question feel free to ask or send me a PM.

Jackp

[despise]

jackp!!!! please help me out! your friend with the urethral stricture!!!! do you know any of his symptoms? and explain his outcomes please! i believe i have a urethral stricture and well its been driving me mad. if you could please please get back to me it would be beyond appreciated. thank you.

[despise]

richb i am experiencing swollen hard painful flacid penis as well. just keep trying dude! im not a professional but when a urologist tells me nothing is wrong i don't care because i know something is wrong. you can't give up man. im 18 and we have to keep strong. our futures depend on it. i have been extremely depressed and dropped out of my high school. its sad but i realized i really need to grow up regardless of my condition and graduate high school. i let this get to me and well it destroyed me mentally and even physically. do you have any hobies? skateboard? play music? whatever your into man keep at it and keep trying to get help. be strong and you will survive it. people have defeated so many things im telling you man there is help for us. even if worst comes to worst life isn't only about sex. there is sooooooo much more man! you into any extreme sports? look at travis pastrana dude. double back flip are you kidding me? i saw that live and was amazed. you should watch his show on mtv nitro circus. it shows you how much fun life can be! and it has absolutely nothing to do with sex! it sure as hell is painful but ill tell you what i rather risk and be hurt to have fun then die depressed and lonely. crap i rather die then be like this.

[jackp]

despise
My friend with the urethral stitchery is doing very well now no more problems. I will tell you as much as I know.

He was having a hard time urinating. He had a couple of surgeries here (Memphis TN Area) by a well known urologist and it only helped for a while. After the second failed attempt he pressured the doctor more help and he finally referred him to Dr. Milam at Vanderbilt (Nashville TN).

His stricture was 3 cm in his penile shaft. To do the procedure they had to go in and remove 3 cm of urethra and replace it with a graft. He was never circumcised so the graft came from the circumcision. He had to ware a foley cathater for 7 weeks. Make a couple of trips back to Nashville for follow ups.
The surgery was "23 hour" out patient.

Now it has been a couple of years and everything working well. I asked him about the circumcision and he said he gladly gave up the foreskin to relieve the stretchier.

The doctor did tell him that in time he may have to have an implant because of the damage to his penis but so far things are working great.

A few weeks ago his wife and I were talking and she knew I had just came back from Nashville. She said how was Dr. Milam and how great he is.

Note: There are very few doctors like Dr. Milam. He is a Male Sexual Function Specialist not just a general practice urologist. I was talking with the rep from AMS the other day and she said that he would take on difficult cases most doctors failed at. My case was not a stricture but peyronies, ED, venous leakage and corporal fibrosis. The head of the Department of Urology at the University of TN Medical School Memphis could not help me. The doctor that punctured my urethra in the first failed implant is the head of the largest urology practice here. Dr. Milam fixed his mistake and now I can function normally again.

Jackp

[Hawk]

Despise,  Why are you posting about physical aspects of Peyronies Disease under psychological component topic???

These posts will be moved.

[RichB]

One of the hardest things that I have been coping with these past couple of days is the realization that I will never be the same again. I will never gain the feeling and ability that I had before I developed this condition. And that, for me, is a very hard thing for me to grasp right now in my life. That, along with the feeling that among my peers I am completely and utterly alone in this struggle makes it more and more difficult for me each day. I almost can't take it.  

[ocelot556]

RichB - That's the long road we all have to walk, but it's not necessarily lonely. We're here for you in this (albeit limited) capacity, and there are always people who can help you. I've dated a couple of wonderful girls during my three years of having Peyronies Disease - none of them cared. My current girlfriend said something that shocked me when we were being intimate - "it's so smooth" - it's something that I'd heard before, but not after I'd started developing cords and plaques in my penis. I viewed my member as this twisted, hard, disgusting looking thing - and she barely noticed. She thought it was beautiful.

So there's a perception issue that is only going to go away with time, as you live with the disease. Thinking of yourself as "broken" is natural given this horrible disease, but there is much more to you than your junk - and there has never been a better time to be plagued by this disease. There will be a cure in our lifetime.

Speaking as someone who is currently witnessing HEALING in my penis, I am glad I kept up the hope. We live in a time where they make pills to get you hard - at first I kicked myself. 25, and needing Viagra? What sort of a real man my age would need that? But I was caught up in some faux-masculinity, not even realizing how lucky I was to have something that can help me have sex when, a decade ago, it would be much more difficult. How many of your friends know your penis size? Your sexual preferences? There is no shame in this disease, because the only people privy to it are you, your doctors, and your lovers - all of whom shouldn't judge you, anyway.

Medicine can cure most ED, and there are treatments you can use to try and treat the symptoms of Peyronies Disease - but the latter is a slow process. Pentox is a godsend - use it!

As far as your desperation...think of the myth of Pandora's box - all of the evils of the world flew out in a rush as soon as the box was opened. At the bottom was hope, not rushing at the world but waiting to be found. Pain and doubt are easy, they come first. Hope is what you cultivate, and grow. Don't lose it, even in your darkest moments.

[Jonny13]

Thanks for this post, Ocelot.  So much truth to this.

[cowboyfood]

All,

First, I want to thank several board members for personally offering me hope and encouragement.  Because of you all, I understand that this condition is manageable and may not permanently interfere with our relationships and overall mental and physical health.

I've read many, many posts, and I pay particular attention to the posts of the board's veterans.  

From the personal messages and forum postings I have read, I have distilled that it is not unusual for our condition to initially cause a negative impact on one's mental health.  Okay, this may be stating the obvious in most cases.  But what I am trying to articulate is that even some of our board's "heroes" had to overcome initial and sometimes ongoing psychological battles.

I'm wondering if anyone has gone through an initial period of just not being interested in having sex with another or not being interested in masturbating?  For me, I've been so focused on understanding the condition and pursing a proper treatment that I just don't "desire" sex, and instead just "desire" to work on treatment.

I'm not sure if that makes sense, but I've reached a point where I am confident that I am pursing a great treatment program: Daily VED use, pentox, L-Arginine, ALC, Vit E, and a little Vit D.  Also, I have an ultrasound scheduled in about 2 weeks.

So, I'm starting to relax and disassociate the condition with the natural desire to have sex.  But, I think that I may hit a rough spot after my next uro appt when they do the ultra sound in a couple of weeks.  I've noticed that I sort of get into a depression following a uro visit -- or, maybe it's just visiting hospitals in general.

I have had two visits with two different urologists.  Both experiences were fine.  The first uro was honest and professional, referring me to the second uro.  My initial impression of the second uro is that he is on point with many of the prominent peyronies's disease physicians (Levine, Lue, etc.).

Anyway, I guess what I inquiring about is if it's normal to go through an initial period of trying to get mentally adjusted.  I get the impression that this varies with the person.  

Thanks for everything.

CF

[ocelot556]

I don't think there's a single member on this forum who isn't currently experiencing some kind of mental issue regarding Peyronie's Disease. Some of us can comport ourselves better, perhaps, but it's always a taxing thing.

Take my post below: I said I was experiencing healing - and I was/am still - but a few days after posting that, I developed a new plaque. The best way to make God laugh is to announce your intentions. That put me in a funk for a few days, but since I've been grappling with this damned disease for three years, I turned it around emotionally pretty quickly and just started working at it again.

People lose their limbs every day, they get diagnosed with leukemia or have to have vital organs replaced. People die. We are not lucky, by any means, but as I was telling another member via PM -- Life in itself is suffering, and we are tasked with mitigating that suffering however we can. You can't cure Peyronies Disease, you can only hope to treat it and try to turn what is often emotionally and mentally damaging into something fortifying, enlightening even.

[j]

cowboyfood,  the answer is yes.   I'd describe it as a period of shock during which you sort of feel disassociated from your normal sexuality.  You feel just shut down, you're just not thinking about it like you used too.  I think it takes a long time for this to pass - it did in my case - but the human brain is always adaptable and eventually your normal impulses return.   And like you say, it seems to be all too easy to obsess over the condition and possible treatments, and those thoughts sort of take the place of the sexual ones.

I can only speak from my own experience but what has helped me is to stop all attempts at treatment, stop thinking about Peyronies Disease all the time (I even stopped reading this forum for a few months), try to loosen up and restart my old patterns of behavior.  My wife and I took a couple of vacation trips and that helped a lot, while traveling we felt and acted more like our old selves.

I can tell you're starting to see daylight. It gets better from that point forward.

[RichB]

New pains. New plaque? More curve?

It seems that every time I get to the point of accepting my curve and moving on, a new pain comes along and throws me into the same limbo that I have been through so many times. I am getting extremely sick of this condition. I don't know what to do anymore.

[bummedout]

I have no wife, no girlfriend, nobody that understands in my life, and I don't believe in religion, so I don't have "God" to turn to.  Oh, and I'm only 29, so I'll most likely have to deal with this for the rest of a long, miserable life.  Starting to feel like I just wanna end it all.

[Iceman]

bummed out - relax - read the threads - its all here - we have all gone through this dark passage - there is light - trust me and you will get there - its hard - get on the meds and ved asap - this is a sure way to tackle this head on - dont give up as this is a natural reaction - take your time to get into the treatments, manage the pain ( i do everyday) and move on - !!

[Hawk]

This too shall pass.

I suggest you read all of the threads in the child boards that Angus created for new members.  You can get a vast education on all aspect of this disease without plowing through ten times as much material here in the main forum.  The idea is that you read and learn there first and post questions or comments here since that area is not for comment.

I suggest you read this topic first, https://www.peyroniesforum.net/index.php/topic,449.0.html  This is an area where there are proven methods for seeing immediate improvement,  an area whewre you are in control.

Good luck

[astyanax]

I have no wife, no girlfriend, nobody that understands in my life, and I don't believe in religion, so I don't have "God" to turn to.  Oh, and I'm only 29, so I'll most likely have to deal with this for the rest of a long, miserable life.  Starting to feel like I just wanna end it all.

I hear you man, I really do.  I'm 25, the exact same situation.

Not wanting to 'end it all', but I'm seriously fed up with this, its been going on for far too long, and I could care a less how embarrassing it is anymore.  Lived with it since I was a young teen.

I'm calling up the urologist who specializes in this tomorrow, going to kick and scream until I get a earlier appointment.  (4 MORE months of waiting at this point).  

Like Hawk said, there is some good reads in that thread.

[MUSICMAN]

I would like to point out that the younger a person is the greater the chance that medical help will arrive in time to improve our condition. At my age it will come too late. The FDA and the drug companies seem to move at a snails pace when we are waiting for that miracle.