Peyronie's in day to day living

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emasculated

I would like to know how people here are coping with the disease "reminders" in everyday life.
The organ for me now has a very uncomfortable feeling to it.
Before Peyronies Disease the penis was soft and relaxed and much larger than the relaxed testicles which has a comfortable feel to it.
Now the organ is shrunken and the testicles relaxed which is noticeable mismatch while walking.
This may sound stupid but it has significantly decreased my quality of life. I no longer go hiking which I used to love.
It's smaller in dimensions and when I walk I notice it every time even at moments when I'm pain free.
For me at the beginning a few months ago the organ looked horrible in the flaccid state, but that was due to hard flaccid. Pain is only present in the flaccid state as well (which I've read here are uncommon symptoms for Peyronie's which confuses me even more, but that's a different subject).
I actually could live with most of the sexual consequences of Peyronies Disease however severe they may be.
But I find it emotionally taxing to go to a public toilette say or at work and look at my penis. As well as take a shower.
The changed appearance is really freaking me out.
I need some coping mechanisms to get it out of my head for a while and think of different things.
Can anyone be of help here?
Do you get used to these things over time? I guess yes.. because I can't imagine walking slowly all the time in relieving posture from the discomfort for the next 10 years or so. As well as go to the bathroom and basically feel like crying afterwards every time.

I should add that I find myself for months now spending a lot of times in toilettes tugging on my penis endlessly to get it in it's old shape or feeling for the plaque. Which both are pointless exercises, but I can't help it...
"Without health life is not life; it is only a state of languor and suffering - an image of death."

GS

There is an old saying "time heals all wounds".  It isn't exactly true when it comes to Peyronies Disease.  It's the gift that keeps on giving.

I've been with this disease for over 5 years now and I'm pretty much over all the symptoms except the curved erection.  The way I look at it;it is what it is and I have learned to live with it.  Do I wish my penis was like it used to be?  You bet I do, but a bent penis beats a lot of things that can happen to any of us.

I guess my opinion is, if you can still have intercourse and you don't have chronic pain, you count yourself lucky and learn to live with it.  I'm not even sure I will try the Xiaflex treatment unless I somehow get worse with the curvature or if the pain comes back; both of which could happen.

These are just my personal thoughts and I hope they answer some of your questions.  For those of us in chronic pain or with a curvature so bad they can't have intercourse, they probably have a completely different answer.

GS

Norm

Em,
I don't know if you are using a VED or not, but I would suggest it. I found that using it made my penis hang much fuller. It did not help my curve, but it did help me look more like my old self when flaccid. If for no other reason, I would recommend it for that. It is neither comfortable nor convenient, but it is worth using it to boost your self esteem.  
Plication Surgery Dec. 2013. Straight Again!

BentYoung

emasculated -

I feel your pain! It does get easier as you go, but I won't lie, I have had this for 15+ years and not a day goes by where I don't examine myself obsessively in the shower for  "new developments". I would suggest going to therapy and talking with someone, it helps tremendously. You need to get to a place mentally where you can accept whatever happens good or bad. This is a whopper of a task...  

Thisismyusername

I've had this for 10 months.  Been in pain for the last 9 months and its showing no sign of going away.  I can't have sex or masturbate or I get major flair ups in pain.  

To be honest, I'm getting through each day, but that's about it.  I try to stay positive but it is extremely hard.  My quality of life has suffered enormously.  I keep going hoping for some sort of improvement but I can't catch a break.  No treatment I have done has helped at all so far and time has not helped either.  When I really think about my future I feel hopeless.  Unless the pain completely goes away and I am able to have sex again I don't know how I can really accept what has happened to me.  I know things will never be what they were but I'd like to at least be able to go through daily life without pain and have sexual pleasure and orgasm again without pain, at least in some form.  

I feel like I lost my penis and it was replaced with a dysfunctional mess.  My new penis feels like a curse.  

I still think about suicide a lot but I wouldn't do it.  To be honest I have some sort of weird admiration for people who go through with successful suicide though.  Logically I am suffering more than I am enjoying life so there is no reason to live, but I just can't fight the biological urge to live no matter how much things suck.  

dplookin

I know how you feel.  You're not alone.  I came down with ED in 1986, and at the time I assumed that it was because I was getting older so I sort of ignored it for awhile.  Then jobs started going away in 1991, so I was busy looking for jobs and ignoring the ED situation.  And, when I would find a job, it would be a temporary job with No Health Insurance so I couldn't see a Doctor.  Then by 2006 I was a Homeless Person for a few months due to no jobs which was very stressful, and still fighting with ED.  Lots of Depression.

It was sometime in 2013 that I found that there was something wrong with my male part.  I had lost a few inches and it was bent to the right.  Oh No, what happened, I said.  It took me awhile to find out what was going on.  This is the worst.  Peyronies may have even started on me back in the '80's and I just didn't know it.

I have tried Pentox, but the side effects weren't worth it.  I have been using the VED for about 6 weeks with No Improvements.  I feel like I will be dead due to old age before I can solve this problem.

I haven't been with a Female since 1986.  Now, that Is Depressing, and I probably never will again.  So, like I said, I know how you feel.  I truly wish you luck with your problem.

Take Care and Keep doing what you can and pray for positive results.

Knight

I totally understand how you all feel as I have some of the same issues and some of the same negative thoughts from time to time. But what about surgical options? Is insurance the issue? Is it something else?

There has to be a way....

We can not give up!

dplookin

I doubt that my Insurance would cover surgery for this problem, plus I have read that the surgery can Shorten it even more.  I don't have much left to shorten.........not sounding good.   Although I continue to use the VED, but only every other day, I do not feel optimistic at all.  I fell like I am not getting anywhere and won't in the future.  What can I say.......

Hawk

For starters, my view of suicide. is plain and simple.  While I make some allowance for those that have mental illness that prevents them from raional thought processes, suicide is a cruel, thoughtless, cowardly way out.  ALL life has pain and challenges but when we choose suicide we choose to multiply the pain we feel and then dump it on others for them to absorb on top of the issues they have.  We do that rather than face our own set of challenges.  The aftermath of such a decision is a weight carried by at least several people over their life time and it has less in the way of a cure than Peyronies Disease does.  It is more likely carried by dozens, and carried by the people we should care the most about.  I feel it is my duty to haul my load and help others haul there load to the extent I can.  I am willing to accept help but I am not willing to just dump on others.  I also feel some obligation not only to teach the next generation how to live but also how to die.  To me, suicide is not the legacy or the lesson I want to leave.

It is always interesting how two amputees, or two quadriplegics, or two Peyronies Disease patients dealt very similar circumstances choose to have completely different attitudes and responses.  There-in is the secret to life.  I often quote Annette Funicello, who went from a child and teenage star to an MS survivor. "Life does not have to be perfect to be great".  

I don't suggest Peyronies Disease is no big deal.  It is big enough of a deal that I have devoted a big chunk of my last 10 years personally dealing with it and trying to help others.  It is however not leprosy, or being a quadriplegic, or a paraplegic, or MS, or 1000 other things people deal with including problems that are not directly health related like living under some crazed dictator in some 3rd world country with no way out.  In addition, many people that we think have it better than us, suffer quietly with burdens we will never know about.

I strongly suggest everyone read the first 100 pages of The Road Less Traveled by Scott Peck (you can read the first 25 pages free on Amazon) and Man's Search for Meaning by Viktor Frankl for some perspective about dealing with all the difficulties inherit with life.  



PS: There are solutions for everyone with Peyronies Disease that will make their situation better (not perfect, but better).  Those topics are for other boards.

Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

liber

As an a individual who has lost a loved one to suicide. It is a hateful act leaving behind nothing other than pain. Think about those that love you, and if you feel you can inflict such sorrow, the choice is yours.

emasculated

I find this view of suicide rather radical and one-sided.
Consider the case where no family member is still alive to mourn you or just no one you have still contact with and would give a damn about you.
Also if you have a real reason, real suffering (which is _subjective_ and should not be discounted by others) I would think making a few relatives relatively unhappy for a relatively limited period of time is better than suffering endlessly just to prevent that outcome. If they really love you they may have some understanding and one can write a note carefully explaining said suffering.

I would highly recommend the book "On Suicide: A Discourse on Voluntary Death" by Jean Amery for a different perspective. One which does not exclude any reason given as not sufficient or even downplayed as just a feature of a mental disorder.
Secondly @Hawk, I find your comparisons with these (insert "obviously worse diseases") not convincing.
That is highly subjective. I just saw a documentary of a young veteran from Iraq who lost the left arm and two legs. To me the guy was comparatively well off after the experience. He got his artificial limbs and is even performing sports and has a very active and happy life. I would trade in my Peyronies Disease in a heartbeat with his situation. I would trade it in for: MS, testicular cancer, partial blindness, loss of hearing, etc.. Because MS takes a looong time to develop fully giving you many happy years, testicular cancer is curable to almost 100% with loss of just one testicle (compared to: dysfunctional penis in Peyronies Disease) etc..
But that's just my perspective.

Now back to the topic...
"Without health life is not life; it is only a state of languor and suffering - an image of death."

Hawk

Emasculated,

First you dismissed the suffering of friends, associates, and loved ones of suicide by saying "relatively unhappy for a relatively short time".  You continue then to minimize the struggles of a triple amputee, a life which you have not lived.  It is as though you minimize the suffering of others and maximize problems you share.  Hopefully some day you will see how self-centered this is.  To suggest his struggles are less than your struggles is amazing.  Clearly you have yet to develop a very strong sense of empathy.  If you could clearly see the life of such a person from their perspective there are several things you would understand.  First there is the excruciating physical pain of the trauma, multiple surgeries, endless therapy.  There is the emotional suffering from a loss of earning capacity, doubts and fears of any future capabilities.  There are the endless recurring night-mares of the incident and the desperate faces of dying friends. Add to that doubts of keeping or finding a mate that will want you.  Suffering because you even have difficulty communicating in casual conversation because you find most every attempt at conversation distracted because others don't know how to react to you.  Children stare and point and adults turn their head so as not to appear to stare.  Add to that very great physical limitations contrary to how you interpret what you saw.  

In fact, what you did was to perfectly make my point.  Yes, once I saw a guy with no arms.  He played a guitar with his feet better than I can play one with my hands.  That does not mean most people with no arms manage to achieve that level.  Those individuals that do are the ones that first put aside negative thinking and manage to develop amazing positive attitudes in spite of their obstacles. They have to engage many many years of effort that the faint-hearted would find humiliating and painful.  

How many men in the same state as the man you saw have withdraw from spouses, lost relationships, ended their lives?  How many tell themselves they can never be a man, never caress their wife, never be an object of desire?

I can assure you that the same spirit that drove the man you saw to overcome his disabilities would also enabled him to lead a great life if he had Peyronies Disease.  It is not the disease, disability, or circumstances that make the man, it is his sense of self-worth and his attitude.

I can show you a documentary of many men on this forum that have Peyronies Disease that have also built amazing intimate relationships, fathered children, had sexually and emotionally satisfying lives, and become significant contributors to society.  All just like the man you saw.  I can show you others that shrunk from all of these possibilities because they dwelt on the negative and allowed themselves to feel emasculated.  What is the difference?  It is clear once again.  It is the attitude not the condition.  We may not be responsible for our Peyronies Disease or for being an amputee, we are however directly  and solely responsible for our attitudes.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

IhatePD

Everyone, I highly recommend reading Victor Frankel's "Man's Search for Meaning" or at least do an internet search for quotes from his book and his experiences in the concentration camps. This is one of my favorites:

"Everything can be taken from a man but one thing: the last of the human freedoms—to choose one's attitude in any given set of circumstances, to choose one's own way."
― Viktor E. Frankl, Man's Search for Meaning  

Hawk

I cope through a two pronged approach.  

1. Do all I can to correct the situation.  That brings me the peace "that I am doing everything I can do".  It tells me any additional energy I pour into this issue is wasted energy.  It also actually improves many symptoms.  For instance traction will restore some lost length and very definitely restore hanging flaccid length but that is a discussion to be conducted under the treatment section of the forum.

2. I lose myself in service to others or something bigger than me.  Everyone has (or should have) things they care about.  Things that are not just fun, and not just beneficial to them, but things that they feel transcend their daily concerns.  It may be rescuing abused pets, improving politics and public service, giving a kind word and a small act of service to the elderly, helping in a children's ward of a hospital, working in a soup kitchen, tutoring the uneducated. The list is endless.  I find that everyone that serves others lose their obsession with their own problems.  Just like holding a small object in front of the eyes can block the view of an immense universe, standing too close to our own problems can blind us to the real priorities, the real meaning, the true importance of the other things in life.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

inkhorn

Hate- For day to day coping, Victor Frankel is outstanding! I've been quoting and using his writings for over 35 years. A great perspective that reminds us, "it's not the end of the world" Regards Inkhorn

james1947

emasculated

I am better of not to answer to your self sorrow, ..... way of thinking, because it will be on the border of personal attack that is not allowed on this forum.
The only thing I was asking from you is to delete your recommendation to this book you mentioned, people on the forum that will read this book may  suicide and that will be on your head. You advised them!!!

Apologizing to all the forum members for this post.
James  
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

emasculated

james1947: You can censor my post as a moderator. I don't think it violates the forum rules in any way. And it is as the title indicates a "discourse", not a manual or recommendation for suicide in any sense.
People don't understand Frankel's book as a recommendation to live through something like Auschwitz in order to find meaning in life. I'm only recommending to read a book not to commit suicide.

"Without health life is not life; it is only a state of languor and suffering - an image of death."

Knight

I'm sorry to disagree, perhaps I just misunderstand? But why should he apologize? He is posting his feelings about his quality of life with Peyroines which to me is his way of working through very serious and real thoughts and asking for help. He's not the only one who has these thoughts because of this condition...it's all over these very threads. The dialog is healthy in my opinion. Some of us are really struggling and we need those of you that have somehow learned to cope, live with and perhaps even thrive with Peyroines disease to help us find what you have found. All any of us want is as normal a life as possible. We need to be able to be completely honest, even if our thoughts are twisted. Depression is a form of mental illness and Peyroines can certainly lead to depression. None of us really want to die, we just want to be as normal as possible again. We need to help each other, not turn on each other. The dialog may be uncomfortable, maybe even painful, but holding it in could be disastrous in my opinion.

Hawk and others have already written things that have helped me tremendously. You give me ideas to ponder and a way of thinking to help me learn to cope. That's priceless. Thank you.

Hawk

The moderators and administrators as well as several members that function in an advisory role try individually and as a group to make this forum the best it can be.  They selflessly give their service to serve others.  The way is not always crystal clear and we do not always agree.  I for one have mixed feelings about Emasculated's recommendation.  I share James' concern.  Emasculated's recommendation serves no purpose in helping members progress and rise above the challenges they experience from Peyronies Disease.  As knight stated it, this board is here because:
QuoteSome of us are really struggling and we need those of you that have somehow learned to cope, live with and perhaps even thrive with Peyroines disease to help us find what you have found.
Often those that have effectively coped with the psychological issues do not visit this board since they are focused on physical treatment.  The result is that those that are struggling gather here.  unfortunately, at times that results in an uninterrupted "woe is me" "pity party" rather than men encouraging each other.

I understand emotional distress and pain.  I have silently wept in the dark during foreplay.  I have however progressed far beyond that. However, at no point have I understood people reinforcing negative, hopeless, self-absorbed behavior in each other.   At my lowest point I would never have come to this board and reinforced victimhood by responding to a depressed person by saying something like "yeah, my life sucks just like yours man.  There is no hope and no way out.  What good is life with a broke dick"  As the saying goes, who needs enemies with friends like that. That is precisely what some of the people responding to Emasculated did.

In part, the responsibility for this goes to the the majority of men here that feel no need for this board and fail to come here to support those that do need the physiological support.  While I feel for Emasculated's pain you can only help those that are open to positive input.  If someone wants to be dark, dwelling on what is wrong, finding a problem for every solution, and arguing for the benefits of suicide, there is little you can do.  While this may not accurately describe Emasculated, his very screen name repeatedly reinforces a concept of victimhood that a man should reject rather than reinforce.  

I admit to limited patience with those that seem to prefer victimhood over victory.  Unfortunately there are people that find identity and enthusiastically embrace the role of victim.  They desperately resist giving up their role as victims.  It is often an outgrowth of a long established, self-centered personality.  You often have to choose between endless circular debate with these people or bluntly redirecting the discussion.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Old Man

In support of Hawk's post below:

I support his position 100%  about negative posts and/or other derogatory comments about how one feels with Peyronies Disease, ED and other men's health problems. I again say: ''there is light at the end of the tunnel of these problems - if one looks at the positive side of life instead of dwelling on the negative''!!

My history of ED, Peyronies Disease and prostate cancer has been posted elsewhere on this forum almost from day one of it being established. At the risk of repeating myself again I will state that Peyronies Disease has been my ''partner'' since the age of 24 and ED has been my other partner since the age of 55.

Having said that, the many posts of mine on this, the best men's health forum I know of, plainly states that there is really good help for our Peyronies Disease and/or ED problems if one looks on the better side of life with them. I know that it is very difficult to overcome what seems to be the total end of any sexual activity once Peyronies Disease and/or ED strikes. However, I decided early on with my problems that I would not let it ''beat me'' and I would do something about it.

Over the past 60 years, I have endured many and varied men's health issues that would have devastated me in so many ways had I given in to them. There were times, like many on this forum has stated, that I did not want to continue, but I bit the bullet and just overcame that urge and today I am in a totally arrested state of Peyronies Disease. ED is no longer a problem too as I can achieve a natural erection with proper manual stimulation and placing a cock ring on to hold the resulting erection.

I guess that the above is being said in hopes that somehow, someway that any new members coming on board the forum will realize that there is help for their issues of Peyronies Disease and ED if they exert the right combination of patience and not being negative all the time.

The older members in time on the forum and in age are here to assist any and all to help them through a most trying time in their sexual lives!!!

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.

liber

Hawk, Old Man
Thankyou, I'm new to this condition but positivity can be the only way forward.

Emasculated
I accept the mind can be cruel and asking for support here (if needed) could be a great help. But this forum is not the place to rationalize suicide.

GS

When it comes to day to day living with Peyronies, Old Man is THE MAN!

I got Peyronies Disease for my 58th birthday;I'm getting ready to turn 64.  At first I thought all was lost; I bought a bunch of worthless stuff from a commercial Peyronies Disease website that promised to help me, got totally frustrated and then found this site and forum, including Old Man and a bunch of other positive members.

What a difference it has made for me.  I got all the recommended supplements and a VED and along with some time passing, my symptoms have improved and I have learned to live with Peyronies Disease very well.  In fact, I quit smoking, lost some weight and I am generally living a more healthy lifestyle;maybe all because of getting Peyronies Disease.

I'm not going to go so far as to say getting Peyronies Disease was a positive thing for me, but it sure has changed the way I look at my life and made me more health conscious, which may improve my life going forward.

I still get down every once in a while and feel sorry for myself; I think that is just normal behavior.  But, the important part is to not allow yourself to stay down.

As a wise man once said, "sometimes it all in how you look at it".

GS