Collection of ways to cope with this horrible disease

[curvedcarnivore]

Hey guys, I'd love to create a handy resource that has little bits of nuggets to help those struggling to live with this disease stay in the fight. Please add your ways to cope.

Here's what I have so far:

An implant will fix this if all else fails.

There are people like Stephen Hawkins who still had a life worth living despite not having a functioning penis.

All I know is that I have a bent bit of flesh. I do not know that I'm no longer a man, that this will be forever, or that I've been cursed and my life is over. Those are all judgements I've attached, and are not reality. So stop at "I have a bent penis" as that is the only truth.

Despite feeling like it, there ARE worse things that can happen to a man than Peyronie's Disease. (And like the Stephen Hawkin's example - many with these conditions worse than Peyronies Disease have still lead lives worth living.)

This disease does not kill you directly. It can only kill you if you mentally give up! So keep fighting and don't let it win.

Was my penis the only thing good about my existence? No, there is more. Yes, my penis has been taken, but there's more to me than a bit of flesh between my legs that is now bent.

Do not judge myself for things that are out of my control. This does not make me a bad person.

[Mikel7]

Keep looking for the positive things in your life and focus on them. We are not defined by our penises. Your future will be brighter than what you imagine!

[curvedcarnivore]

Keep looking for the positive things in your life and focus on them. We are not defined by our penises. Your future will be brighter than what you imagine!

Love this mate. As it's so hard to see something like that ever happening when your in the midst of pain and a horrible curve. But I want to try keep things like this in mind.  

[Hawk]

"Life does not have to be perfect to be wonderful."  Annette Funicello, years after struggling with Muscular Dystrophy, losing the ability to walk, and facing progressive loss of function.

[curvedcarnivore]

"Life does not have to be perfect to be wonderful."  Annette Funicello, years after struggling with Muscular Dystrophy, losing the ability to walk, and facing progressive loss of function.

Another great quote. As I most definitely suffer from perfectionism, which sets impossible standards on myself to reach as perfect does not exist.  

[Hawk]

Make no mistake.  Life is difficult for EVERYBODY.  That is just the story of life.  

What makes a happy life is not an absence of trials.  It is finding joy and peace amid the trials.

[curvedcarnivore]

Make no mistake.  Life is difficult for EVERYBODY.  That is just the story of life.  

What makes a happy life is not an absence of trials.  It is finding joy and peace amid the trials.

Another post I needed to hear. As most of the time I'm certain that I can not possibly be happy until I have cured Peyronie's Disease. I feel that joy is impossible right now. However, I need to see that right now is the only time I can possibly find peace.  

[Hawk]

With or without a specific challenge of Peyronies Disease, it is human nature to squander life waiting to achieve a goal or certain circumstances before you enjoy life.  It is a fool who waits to arrive at the perfect destination rather than enjoying the journey even with all of its challenges.  

[curvedcarnivore]

I'll also keep this is mind. It's very challenging to enjoy life as a man without a penis, but I will try to not let it destroy me. As I have no idea what will happen in the future, and I want to stop robbing myself of today over fear of tomorrow.  

[DaneS89]

Mindfulness. There are so many moments in life, for most of us and most of the time really, where things are actually just fine as they are and we don't need to worry about our penis problems. We miss those moments to be content and feel okay with the world if we constantly let our worried thoughts invade them. If we relish each of the moments when we have the chance to, then over time and overall the picture and perception of our lives will usually change.  

[Hawk]

It's very challenging to enjoy life as a man without a penis

This is a hastily written post with almost no proofreading.  It likely jumps all around on this topic, but it is so important I had to unload.  It is meant in a spirit of concern and carilg or I would not have invested the time hunting and pecking it out on a keyboard.

CurvedCarnivore, You have to recognize that thoughts like those behind this quote, are in fact the very reason for many of your emotional/ psychological problems.  You have a penis! so you are NOT a man without a penis.  You engage in Self-talk that not only dwells on the problem but you don't even leave it at that damaging practice.  You actually project it as being even worse than it is.  You can currently have an orgasm.  You can currently have EVERYTHING but penetrative intercourse.  Ask ANY woman which she would choose; if she could be limited to having only intercourse or have all forms of sexual stimulation and intimacy except intercourse. - The VAST majority will give a thumbs down to the intercourse.  Use this time to learn to be a master in all of those other forms of intimacy, and you will make women throw rocks at other men.  When your penis becomes fully functioning, you will think of this period as a valuable time that taught you much about life and intimacy.

I am not suggesting you have no problems.  Life is full of problems.  A large percentage of people you pass are fighting secret battles you know nothing about.  Ask yourself, are you worse off than a guy on a submarine for 6 months, or fighting in Iraq for a year?  For that matter, any of the men who, for a wide range of reasons, cannot have intercourse for a year (terminally ill spouse, living in the outback and your wife leaves you, serious illness or injury).  Most of these carry a loss of everything you are experiencing and much more.

Is it a fore-drawn conclusion that you will never have intercourse (like a man with no penis)?  You know it isn't.  Why, then, do you:
1. Exaggerate your problem
2. Frame your life in the most dismal view
3. Ruminate those false thoughts through your mind over and over like a cow chewing its cud.

You MUST realize that your thoughts (true or false) affect your emotions MORE than reality. If a man cuts in front of you doing twice the speed limit on your way to work, it affects not only your current frame of mind but your whole day and more if you dwell on it.  If you think "poor guy, I wonder if a family member is having a severe life-threatening issue you might go through your day with compassion and gratitude for your family.  If you think, "JERK!
He must think I am some pushover who he is entitled to abuse just because he wants to."  You might spend your day angry, stressed, you might treat others badly.  You might even act out on the spot and risk your life or health.
The only difference is the thoughts you choose.

You might be limited on treatments for your dick, but you have full control and responsibility for your thoughts and how you treat your mind.  If you don't, then it is up to you to prioritize learning the skills needed to improve your life, No MATTER whether it is this or some other adversity that enters your life, because this is not the last one you will face.  

Your emotions can easily wreck your mental and physical health.  They can make or destroy all of your relationships.  Again, you MUST understand that your emotions are determined more by your thoughts than by your circumstances.

NEVER dwell on negative thoughts (true or false)
Challenge your negative thoughts and ask, "is this truly accurate or is it a mental distortion."
If any part of it is a distortion, reframe it.
If it is completely true, devise a plan to deal with it in a positive way then find positive thoughts to dwell on.

Fight the good fight.  Help others do the same.  It is the only decent way to live.  

[curvedcarnivore]

Mindfulness. There are so many moments in life, for most of us and most of the time really, where things are actually just fine as they are and we don't need to worry about our penis problems. We miss those moments to be content and feel okay with the world if we constantly let our worried thoughts invade them. If we relish each of the moments when we have the chance to, then over time and overall the picture and perception of our lives will usually change.

Great call. As since getting this disease it's all I think about, and it robs me from every bit of joy I may have experienced it I simply focused on what was happening in the moment. I'll try and remember this.

As my brain has this unhelpful thing of saying I can not possibly enjoy life with Peyronies Disease. So, I have to worry about it 24/7.

Not helpful.

[curvedcarnivore]

This is a hastily written post with almost no proofreading.  It likely jumps all around on this topic, but it is so important I had to unload.  It is meant in a spirit of concern and carilg or I would not have invested the time hunting and pecking it out on a keyboard.

CC, You have to recognize that thoughts like those behind this quote, are in fact the very reason for many of your emotional/ psychological problems.  You have a penis! so you are NOT a man without a penis.  You engage in Self-talk that not only dwells on the problem but you don't even leave it at that damaging practice.  You actually project it as being even worse than it is.    

The quote was shortened by the administrator because quoting entire posts is unnecessary, clutters the forum and violates forum rules.

Mate, I appreciate this so damn much.

I'm struggling very hard right now and this is exactly what I needed to hear.

However, I'm in such an anxiety hole that I can't possibly write a proper reply right now.

But I wanted to thank you and let you know that I will be reading this many times today and in the future.

As my health problems are sadly not just Peyronies Disease. My entire health has tanked these last six months which is what has left me so mentally devastated - and in complete fear my life is over.

Again, thanks for such a thoughtful and caring yet stern post. I needed it.

 

[Sonic]

Hawk always drops some great posts here and there but I have to say Hawk, that's probably the best thing I've read since I joined this forum. That post should be pinned somewhere, as a reminder to all of us when we start getting too negative.

[curvedcarnivore]

Hello Hawk,

I've been rereading your post a lot.

One thing I'd love to ask is if you feel an implant WILL fix this.

As at times I get so hopeless as I feel there's no solution, and I'll have to see out my days like this.

Thanks again.  

[Hawk]

One thing I'd love to ask is if you feel an implant WILL fix this.

Well an implant with a TOP HIGH-VOLUME surgeon can fix a 180-degree bend and take a penis from 100% ED to 200% fully functioning so are you worse than that??  ??

You have not even given other options a decent try.  I used Traction, Every ED pill, VED, supplements, cock rings, and BiMix injections for 10 years before I got an implant.  Do not give up a few months into the battle.  An implant is your ace in the hole so to speak after you give everything your doctor suggested a seriously fair try.

If you want to discuss treatments in more detail, go to the appropriate treatment board.

[curvedcarnivore]

Mate, thanks again for getting back to me.

I'm sorry for ranting and being so needy today, but anxiety has absolutely got the best of me right now.

I think what makes it harder is that I suddenly got penis pain, which I think was from the RestoreX. So, I haven't been able to use the device for over a week, so it feels like I'm now doing absolutely nothing to improve my position.  

[Stepone]

CurvedCarnivore
Can you put a date into your signature on your injection(s)?
I would certainly give the xiaflex time to work.
If you are experiencing venous leak and/or poor erections, I would consider implant as I did, but if only problem is bent penis, I would definitely give xiaflex time to work.
If you are experiencing constant pain with your penis, I would contact your urologist.
I hope this helps.
StepOne  

[curvedcarnivore]

Thanks StepOne

I haven't had any injections and Xiaflex isn't available in Australia.

I've contacted my urologist who told me to take some time off from the RestoreX while in pain. But that's been a week now, so I'll contact him again today to see if I should restart the treatment regardless.

And I think I'm so tempted by the implant as I keep reading stories of men doing years and years of treatment to not much results - then getting the implant and everything being solved.

But I'll work with my urologist and keep reading all I can here. But I feel that's the way I'd like to go it means lessening the distress of this disease and being back in action sooner.  

[Stepone]

CurvedCarnivore,
I feel your pain.
Just curious, are you able to get erections and maintain them?

[Sonic]

Mate, thanks again for getting back to me.

I'm sorry for ranting and being so needy today, but anxiety has absolutely got the best of me right now.

I think what makes it harder is that I suddenly got penis pain, which I think was from the RestoreX. So, I haven't been able to use the device for over a week, so it feels like I'm now doing absolutely nothing to improve my position.

Never used the RestoreX myself but I do know it has a very strong pulling force. You should monitor the situation. You know your body best, if you do feel like the pain 100% comes from the device then I would advise you to stop using it. Some ache/soreness is to be expected from traction, especially if one is new to using it, that usually gets a lot better over time as the penis becomes used to the stretching, however pain is never a good sign.

In regards to the anxiety, welcome to the club brother, most of us got it due to this and those of us who already had anxiety got worse off. I just want you to know that regardless of your level of anxiety things will get better. Feelings are temporary, always up and down, some days are better, some are worse but the key here is that you are taking action. You are not just sitting on your ass doing nothing and feeling ashamed of seeking help, sadly many people with this disease feel that way and end up much worse off than if they had seeked help.

You are already taking the necessary measurements and seeking help from urologist. The end result of this will lead to your improvement. You just have to be patient and don't let the anxiety get the better of you. Stay busy and for now focus on different things in life and try not to focus so much on your penis. All you need to know is that it will get better!

[curvedcarnivore]

Quote removed by Administrator - It is a VIOLATION of Forum rule
#7 Limited Use of the Quote Button - Normally, we should use the REPLY button to reply to a post.  We can use the quote button on a member's post only when we want to quote a small portion of another post.  We can also use it when responding to anything that was previously posted BUT NOT when we are responding to the post immediately before our own post in the same topic.  When we do use the quote button, we should trim the quote down so entire posts are not repeated. That way,


Unfortunately not. But I have no idea if this is from anxiety or Peyronies Disease.  

[curvedcarnivore]

@Sonic

Thanks so much, mate. But at the moment I feel I'm taking ZERO action as I can no longer do the RestoreX.

[curvedcarnivore]

@hawk

Just wanted to thank you again for your post.

I find myself needing to reread it most mornings and nights, as I've allowed my thoughts to tell me my life is over due to Peyronie's Disease. I imagine no man could possibly live with this. However, you're proof it's possible. And it seems you even had moments of happiness while suffering with Peyronies Disease?

What made it worse is suddenly getting pain, so I'm now worried even an implant won't help me and I'm
doomed.

So thanks for giving me a wedge to place on those thoughts to see there's another way of thinking. As I've truly let my own thoughts take away all quality of life. Nothing is enjoyable any more.

But I'll keep trying to think more like you suggest. As I believe that's the only way out of this hole I'm in.

(And I've also started therapy. But so far your post has been way more helpful.)

[Hawk]

You are worrying needlessly.  I can assure you there is no more of a sexually oriented creature on this forum than I am.  While I am faithful to a wife of several decades, sex is a huge part of our lives, a huge part of my identity.  My survival and prospering in spite of this disease was not the result of killing the sexual aspects of my identity.  It was the result of managing my thoughts and actions.

[curvedcarnivore]

Thank you Hawk.

As my thoughts can get so dark (and insane). As sometimes I think that this disease carefully selected me out on purpose just to ruin my life. Crazy stuff like that. I also feel like a complete loser for having it, and like nobody successful would ever get this disease, and it's something reserved for the bottom of society to take us out of the gene pool. I know all this is bizarre, but it's what my brain tells me 24/7. And what I have to keep fighting.

But mate, my current hope now is that this disease is fixable with an implant.

 

[Stepone]

CurvedCarnivore,

It sounds to me that your issues revolve around religion or at least a troublesome view of religion.
I don't mind sharing that my religious background is Presbyterian. In simple terms, We don't believe that bad things happen to punish people for their sins or bad deeds. We don't believe there is such a thing as "the bottom of society" either.
Sadly sometimes bad things happen to the best of people and to the worst of people. Our explanation to this is, we should not dwell on trying to figure out why, as many things are beyond our capabilities of understanding. So we accept it and move on.
We understand that God wants us to be happy and wants us to promote happiness in others.
Many religious beliefs in many religions have reformed their views, some have not.
I don't know many things, but I do know that I choose things and people to better my life and others. I do not choose things or people that make me feel bad, make me feel unloved, unworthy, etc.
I am therefore confused as to
1. You have twisted your relationship with religion to be harmful to you.
Or
2. You belong to a religious group that teaches negativity and hatred to others and theirs and your self worth.
Or
3. It is thoroughly beyond my understanding.
Or
4. None of the above.
But whatever your answer is, I would hope you would seek an excellent counselor to help you become a better and less self punishing person.
I hope this is helpful.
StepOne
 

[Mikel7]

You are worrying needlessly.  My survival and prospering in spite of this disease was not the result of killing the sexual aspects of my identity.  It was the result of managing my thoughts and actions.

There is a lot of wisdom in that statement. We are all born sexual beings.

[curvedcarnivore]

StepOne

Thank you for your reply and trying to help me.

I think maybe I've misunderstood something, though:

"I don't know many things, but I do know that I choose things and people to better my life and others. I do not choose things or people that make me feel bad, make me feel unloved, unworthy, etc."

Where does Peyronie's Disease sit with this? As surely that's not something you would have chosen?

(Sorry if I'm being daft and missing your point completely.)

To respond quickly, I am incredibly harsh on myself and beat myself up to an extreme level over mistakes. I feel getting Peyronie's Disease was my fault. Then my Catholic upbringing makes me wonder if I'm being punished for something I did. So yes, that, too, plays a part. I just get so confused and twisted over this disease and it's very hard for me to accept that such a thing has happened to me.  

[Hawk]

I can't make an in-depth evaluation of your faith or of your actions.  This I do know:

1. If God were going to strike every man who varied from strict religious teaching with Peyronies Disease, then Peyronies Disease would be the norm, and those without it would be a rarity.

2. Bad things happen to good people.  In fact, that so universal that it should be obvious.

3. It is fair to say that you have no more right to be unforgiving to yourself than you are to others and no more right to speak (or think) unkindly to yourself than you would to another.  

If you are mistreating yourself, it is destructive.  Framing that with your faith, I would have to ask, How is that any less of a sin to treat yourself badly than it is to treat any other of God's children badly?

[Stepone]

Yes to Hawk
Anthony, it seems like you have identified your issues,
1. Don't be harsh on yourself
2. Don't beat yourself up
3. Don't think you getting Peyronie's disease is your fault, no more than a woman getting breast cancer and thinking it was her fault.
4. Accept it and move forward and don't look back.

I think your counselor could help you with these things or Google how to stop negative self talk.

Best wishes
StepOne  

[this_day]

To respond quickly, I am incredibly harsh on myself and beat myself up to an extreme level over mistakes. I feel getting Peyronie's Disease was my fault. Then my Catholic upbringing makes me wonder if I'm being punished for something I did. So yes, that, too, plays a part. I just get so confused and twisted over this disease and it's very hard for me to accept that such a thing has happened to me.

If you had this upbringing, and seek help and clarity on the issue, have you considered turning to it?  You have to be open to it of course.

I am a few years younger than you and pretty much have had this disease for most of my life, since I was 13.  You can only imagine what I have experienced because of this.  

What was the last resort in my life, was ultimately what saved me -- My Catholic upbringing heals me each and everyday and I'm so grateful God has given me so much because of this experience.  

There is still hope, for sure!