I know it gets hard but please keep fighting

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Curvekiller94

Below is a link where a family member of serena Williams committed suicide over this disease. While there is no cure suicide is never the answer.

https://www.sportskeeda.com/amp/tennis/venus-serena-williams-21-year-old-nephew-takes-life

It's extremely sad but although it's sad maybe it can be positive. We know how hard this disease can be and we just need to watch each other's back try to not get into heated arguments etc

Part 2 is that this is a young man in the public eye maybe it will help get some more attention to help for treatments. Stay strong things will get better.  
28 y/o
sex injury - gradually got worse
Hard flaccid, Indentation bottom left close to my body,  mild twist left
28° up 28° Left
official diagnosed @26 peyronies w/pain
Pentox, cialis, NSAID, tramadol(as needed)
Sciatic  pain radiates penis to foo

Pfract


Tobyg

It would be interesting to write to her, but on her instagram I don't see anything about her nephew.
32 years,injured at 25.
Slight curve, narrowing and retraction in flaccid and semi-erect.
Loss of sensitivity due to peyronie and circumcision  moderate erectile dysfunction, pain.
I improved the pelvic floor with kinesiology.
Frequent urination.

Mikel7

Wow this is the first time I have ever seen anything in the news like this. Suicide in itself is a tragedy.  It affects everyone connected and leaves a terrible scar. Peyronies to a man is very personal and can affect his psyche and outlook on his life. I wonder if his family knew anything about his struggle with peyronies? Very sad indeed.
Lump 4/2020, age 62 , Dr Levine 6-26-20, Dors Curve 11/2020, Peyronies
Vit E400mg, COQ10, Heat Therapy, Penimaster, Pentox, Cialis, Restorex
SNHL 7/2020 - Stopped all Meds because ototoxicity  Heat/traction/VED are working. CPPS Diagnosis - Stable :)

Bud luck

Maybe after this tragedy it will be more research to find solutions for our disease, I always wonder how many men out there commit suicide due to Peroynes disease  
My first symptoms started early in 2019
I tried Traction device, Pentofixiline, Q10, TRT, L-Argenine, cialis
I have narrowing/dent/hinge on the left side of my shaft
My ED is getting worse
Had a PRP shot Aug 2021
I have a girlfriend
Age 46

Curvekiller94

Please don't I too often have very negative thoughts, but you must not give in to that. If you are seriously considering call 988 the suicide prevention hotline.

You have to keep in mind the words of the late great mf doom "a lot people wish to die, don't worry you're already on the list there's bigger fish to fry"


Meaning everyone dies if you kill yourself the same thing that happens to everyone else will just happen to you sooner. Wish for accomplishments and achievements stay alive because for all we know this is the only life we will ever get. I know it sucks and peyronies is the hardest thing I've ever dealt with. But in the words of my grandpa " don't die suffer" is what he would say
28 y/o
sex injury - gradually got worse
Hard flaccid, Indentation bottom left close to my body,  mild twist left
28° up 28° Left
official diagnosed @26 peyronies w/pain
Pentox, cialis, NSAID, tramadol(as needed)
Sciatic  pain radiates penis to foo

Bud luck

My penis deformity and ED is progressing, I'm getting very depressed to know that my only solution is the implant. Do I'm willing to spend $20000 to inserted a foreign object in my penis? What about if I need more revisions in my lifetime? Will I have to spend $40000 or $60000 more in my lifetime? Total $100000?. I strongly believe that my condition could be fix if the Medical community put their efforts into it, but they don't care!!!!@
My first symptoms started early in 2019
I tried Traction device, Pentofixiline, Q10, TRT, L-Argenine, cialis
I have narrowing/dent/hinge on the left side of my shaft
My ED is getting worse
Had a PRP shot Aug 2021
I have a girlfriend
Age 46

Curvekiller94

They don't care this is true. But I can't change the hand youre delt & I'm facing the same crappy  options you face and I have psoriasis/arthritis, epilepsy, ibs, hernias, excessive sweating condition, adhd, anxiety, drug addiction, peeing problems from peyronies,  peeing problems linked with anxiety(public restrooms),  and depression.  My suggestion is yes get the implant with the best doctor you can possibly afford. If it still doesn't work out then I guess maybe but I would exhaust every option before going that route. Frankly I would be fine with a little pain if I could F~@< normally. I wouldn't care about pumping up, if I could F~@< normally

28 y/o
sex injury - gradually got worse
Hard flaccid, Indentation bottom left close to my body,  mild twist left
28° up 28° Left
official diagnosed @26 peyronies w/pain
Pentox, cialis, NSAID, tramadol(as needed)
Sciatic  pain radiates penis to foo

PeyroniKirai

Great positive comments from Curvekiller94.
Agree - keep fighting!  I like your grandfather's saying too as well as the MF Doom quote.  
Very sad about the Williams sisters' nephew, but good you posted that link because we all need to be aware how important it is to get help when these feelings strike.  The person with the feelings isn't abnormal, but the feelings are.  They need to be addressed and dealt with.  As Sabrina says in the article, "you can get through this".

Good luck, soldiers.
Age 64, Peyronie's history 4 years, left side hourglass, 20-degree bend to left, no ED

Curvekiller94

Thank you! Yeah it's hard to stay positive my gf gets upset with me often for being so negative so I'm trying to turn things around a bit I guess fake it till you make it
28 y/o
sex injury - gradually got worse
Hard flaccid, Indentation bottom left close to my body,  mild twist left
28° up 28° Left
official diagnosed @26 peyronies w/pain
Pentox, cialis, NSAID, tramadol(as needed)
Sciatic  pain radiates penis to foo

Eric_C

Interesting link Curvekiller. I appreciate your words of strength and encouragement man. I've had this bastard condition for 3 years now. Before that I had bad hard flaccid for 5 years. So permanent penile damage from age 32 onwards, and a whole host of physical problems, limitations that leave me borderline disabled. Life is very tough, and the Peyronies Disease issue has just gutted me from progressing with my physical rehabilitation. It's not just Peyronies Disease interfering with that... It's complicated. Involves interference and malpractice from a unruly third-party. I tried therapy, it didn't work. She was new to the job and tried to steer me away from even being able to talk about Peyronie's at all, which was hard enough to bring up as it is.

I'm just having a very hard time with continuing in my life at all really the way my Peyronies Disease is getting worse it just affects my ability to picture a life worth living sadly. I'm not coming here for help for suicidal ideation or anything I'm just being honest about my thoughts.

We do hear about a lot of men just taking their lives without any explanation and I often think if they had done an autopsy and investigated the penile tissue they would probably find Peyronies Disease is in a high percentage. This would be beneficial to our community because with more awareness of how serious the disease affect people psychologically they could be more money spent on research and treatment I think that is something we really need to think about here. Raising awareness.

I'm contemplating sacrificing myself to raise awareness about how this disease can really seriously impact a man's life. At this point , why not, I really don't have a lot of hope left. It's almost the least I could do. Fight for you guys left standing with this, with families, careers, otherwise good health. I have none of that.  
Age: 40
Intermittent Hard-Flaccid
Peyronies Disease since April '19
Was hourglass only for 2 years, but now slight bend to the right.
ED seems getting worse. Intermittent Cialis helps

Curvekiller94

Dude that was not at all the point of this post - Making a sacrifice will only rob you of life.

While I appriciate the dedication No one will likely do anything about it. They will say "well that's really sad" and move on with it im sure it's happened before.

Bro you still have a lot of life left. Figure out a way to get an implant if I were your ages I wouldn't even think twice about it personally. I'm thinking twice at 28, but  leaning towards it cuz I haven't had good sex in a minute lol. I have hard flaccid too and I've had it since 26 it's a bitch and a sympathize for you. Please do not sacrifice yourself just get an implant and some Vicodin if pain is bad it made my life a whole lot better. Doctors will say you don't need it etc. but honestly we have a painful condition and at bare minimum we deserve a few hours a day (at least) where we are close to pain free that is my personal take on it. But I'm not advocating drugs I'm advocating getting what ever gets you through the day and you are continuing to progress in other aspects of your life. Life is hard if you need a joint sometimes okay go for it. But don't kill yourself man.


A great way instead of that to raise attention would be starting a campaign jhst like ed. and something that's not a drug advertisement there are millions in the us who suffer. My gf works in healthcare and she deals with many woman who can't have sex because it's too painful. But there's is different it's because they have cancer.

And you have accomplished a lot. you have accomplished living through what most people can't fathom or survive.

I finally found one benefit after years,  But I did find one super power for better or for worse after all this. I no longer care about my comfort really. I only care for progressing at anything whether that be video games, or school, or even drinking a beer. I care at being great at whatever I do. It's something that helps me take my mind off of the bs. You got this man hang in there
28 y/o
sex injury - gradually got worse
Hard flaccid, Indentation bottom left close to my body,  mild twist left
28° up 28° Left
official diagnosed @26 peyronies w/pain
Pentox, cialis, NSAID, tramadol(as needed)
Sciatic  pain radiates penis to foo

PeyroniKirai

Wow Curvekiller94, those are such powerful and wonderful words.  Really inspirational - it's hard to believe you're only 28 too!  
You have wisdom that many men triple or quadruple your age will never have.

Eric_C, heed this man's words.  Don't do anything negative or ill-advised.
Age 64, Peyronie's history 4 years, left side hourglass, 20-degree bend to left, no ED

Hawk

Quote from: Bud luck on March 13, 2022, 01:01:01 PM
I'm getting very depressed to know that my only solution is the implant. I'm willing to spend $20000 to inserted a foreign object in my penis? What about if I need more revisions in my lifetime? Will I have to spend $40000 or $60000 more in my lifetime? Total $100000?

I just want to clear up one point of misinformation.  Insurance AND Medicare pay for implant surgery.  In my case, I did not spend a dime other than gasoline, a dinner in Manhatten with my wife, and a motel room for one night.  No one your age is going to pay $100,000 for revisions.

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

Eric_C

Curvekiller - thanks for the post mate. I'm out on the road at the moment. And I cannot do your post justice on my mobile phone after two days of driving. Just in a cheap hotel bed now, icing my ankle, icing my knee, and just found out my peyronies is indeed getting worse - a sideways bend. Brutal.

Appreciate the input guys. Than you, and I'll come back to this as soon as I get home - Saturday or Sunday.  
Age: 40
Intermittent Hard-Flaccid
Peyronies Disease since April '19
Was hourglass only for 2 years, but now slight bend to the right.
ED seems getting worse. Intermittent Cialis helps

Curvekiller94

Thank you for the kind words it really means a lot  @peyronikirai . Sorry it took long for me to get back this last week was brutal with midterms and deadlines. Finally I can relax for a day and do what I do best(smoke blunts and play video games with some old friends online lol)

@eric c no problem man stay strong dude you got this. I'm sorry to hear that man I know it's tough it may be worth while to think about seeing a doc for input. I would make an appointment online with doctor eid. Even if you don't plan on getting surgery with him he is an all around great doctor and he will try everything he can to get you over the hump. For me it was great peace of mind when he said most men with peyronies pain no longer have their pain post implant. At least there gives me some sort of hope or light even if nothing else works for this.

Something that has been a life saver for me is video games, it allows me to still stay social and even on days where pains bad and I want no pants on I can still speak with people online and they can't tell that I may be doing traction or icing or heating myself. It's preferred over tv for me because there is less focus on sex and there are goals and objectives that take my mind away from the bs.






28 y/o
sex injury - gradually got worse
Hard flaccid, Indentation bottom left close to my body,  mild twist left
28° up 28° Left
official diagnosed @26 peyronies w/pain
Pentox, cialis, NSAID, tramadol(as needed)
Sciatic  pain radiates penis to foo

Hazelboy98

You know what utterly pisses me off so much about this whole ordeal?

The fact that they just completely disregarded the true thing that caused him to end his life, which was him having peyronies

"Mental health is a disease, but you can get through it" - Some self righteous, narcissist 2022

No, Peyronies is the disease. The root of his mental health is connected to him physically having peyronies. Don't play off the total devastation of getting peyronies in your early 20s as just "a mental health thing".

If that kid didn't have peyronies he absolutely would not have ended his life.

Yes of course get help if you're having destructive thoughts such as Alphonse, but you know what would truly help someone like Alphonse? Actually developing legit treatments for his horrible disease, peyronies.

The focus should be on fixing peyronies. You fix peyronies and what do you know, you also fix the horrible dread and depression. It's literally the most traumatizing experience a guy in his 20s can go through, do not ever refer to it as "just some mental issues"

That article is so utterly offensive to sufferers with the disease
26 yrs old    Descended from Heaven on 11/27/97

Severe pain and shape changes started on Nov 30th, 2020 from injury

Shape was back to normal by December 2021
Pain has now gone away and I'm mostly recovered January 2024

Chicago!

westerntown

Haxelboy, youre completely correct. but watch our because some social justice warriors will try to convince you otherwise!
20, late 2020 masturbation injury leads to semi erect hourglass, then try manual stretching leads to pudendal neuralgia like symptoms, corpus spongiosum and glans do not fill, severe ed- floppy unstable erections that feel like water balloon .

Hawk

Hazelboy,

First, if you are honest, you will admit we have NO way of knowing if he would have attached his depression to other difficulties in life and committed suicide or not.  Life is tough for everyone.  Children suffer and die, spouses cheat, and financial ruin strikes.  A person who looks to suicide as an escape in one crisis is apt to choose suicide in another. So, don't pretend to be God or have an omnipotent perception and know what someone you never met would do.  It is immature and shows a lack of understanding of human complexities.

Fixing Peyronies Disease does not fix horrible dread.  Many of the most depressed on this forum admit they had issues before Peyronies Disease.  Scientific studies establish that winning the lottery or being paralyzed in an accident alters an individual's happiness very little 18 months after the event.  Of course, you and others would not know that because you have never used one resource at the top of this board.  

I understand that making baseless claims is more fun than extending some effort to learn and it is far more fun than actually doing something.  I also understand the great freedom we get from embracing the concept that nothing we do will make any difference.  How liberating it is to be excused from extending effort. It is saying," You do something.  My job is complaining.

Finally, do you actually think mankind can solve every physiological puzzle facing the human race?  We cannot cure a common cold.  We can't cure most cancers, MS, and Diabetes.  We cant prevent birth defects, aneurysms, dementia, and 6000 other things.  You want a cure and improvement to come by way of your demand that someone else does something to make you better.  After all, your job is to complain and demand to be fixed physically and mentally.

Now, if you are here to get find psychological support and ideas to help yourself we welcome you with open arms.  If you are here to help others by sharing what helped you, we give you a high five.  If you are not here for either of those, then you are violating the rules for this board and our message is "STAY OUT" or come under significant penalty.  You choose.
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

Hazelboy98


- "Hazelboy,

You will admit we have NO way of knowing if he would have attached his depression to other difficulties in life and committed suicide or not. "


Of course, apologies if it seems like I was pretending I knew him personally.




- "Fixing Peyronies Disease does not fix horrible dread.  Many of the most depressed on this forum admit they had issues before Peyronies Disease."


I'm not going to speak for other people's experiences with this disease. I do wish to speak for myself though and imagine many can relate to my feelings. Kudos to you if you bother reading my little sob story.

Now, outside of penis pain I have autism and severe social anxiety that initially left me feeling empty and incomplete as a person before this condition struck me. I had never learned how to build relationships with people or communicate, I felt an intense fear of missing out, like I was wasting my youth by not sharing moments and experiences with peers, creating lasting memories and relationships. I have literally never had a real life friend, I've lived in the shadows of other people too afraid to make a connection. I hated my life as a result but was determined to make a difference.

Then this 24/7 pain struck me and I immediately realized how trivial my desires to have anything more than a healthy body were. I realized that those times of loneliness and total desperation for some kind of human connection never actually mattered. The infinite potential I already had just by having a healthy body, the comfort and luxury of having a pain free body and freedom to do whatever I wanted made me the wealthiest boy on Earth. I can honestly say that money, relationships, and ambitions, are all trivial desires when you lack health. A spouse cheating on someone is extremely trivial to your health being permanently altered. You can always find a new spouse, you can not find a new body. Those issues simply do not compare

So yes, if by some miracle this pain were to disappear and my health returned as it once was before it all fell apart. I would be liberated from the most physically and psychologically exhausting ordeal I have ever gone through in my life

I truly don't mind it anymore that I'm a social reject, that people don't want to share moments with me or even acknowledge me. The only real desire I have is to simply be able to touch my body without the fear of pain, to run, to jump and dance around, to just wear pants again and exist without the fear and pain. I've lost all those luxuries that most people take for granted and yet I persist this suffering because I do believe things can change one day, I have to have that faith or else this suffering was for nothing




"I understand that making baseless claims is more fun than extending some effort to learn and it is far more fun than actually doing something. It is saying," You do something.  My job is complaining."


I'm getting antagonistic vibes from your response, I don't know if my autism is fooling me but I must have said something disrespectful. I apologize for any insensitive comments I may have made and wish to cool down these tense emotions.

If you browse my profile stats you'll find I have at least 3 whole days going through as many posts I can find from users here regarding experiences similar to mine. I've extensively gone over the many trials and experiments users have attempted to rid themselves of pain, I've attempted these trials myself with no results but I keep an open mind regardless since we all get a little desperate here.  

Now, I do have expectations that the scientific/medical community is actively working on new treatments for issues related to pain, scars and health. I didn't think this was a selfish expectation to have but it seems your opinion is that I should be more involved in the scientific community first before expecting them to provide these improved treatments. I do agree I should be more involved, now that I've left nursing school I suppose I could dedicate a new ambition or even attempt to major in a field related to these issues and finally contribute to the only thing that matters, improving health with science




- "Finally, do you actually think mankind can solve every physiological puzzle facing the human race?  We cannot cure a common cold.  We can't cure most cancers, MS, and Diabetes."




Yes, given enough time.

We can't cure the common cold because there's no such thing as a common cold. It's a million different viruses and all of them are constantly evolving new strains and variations, there's little motivation to treat each and every one of these strains anyways since they're mostly harmless. However we already know we can create vaccines for many viruses anyways, it's not that crazy to think we'd make advancements in something like that. It's very different from a scientist trying to understand neuropathic pain or treatments to something like scar tissue.

Do you not think there's medical advancements we have in the 2020s that people in the 1820s just couldn't fathom? I just think that view is a tad pessimistic for a lot of us here that believe technology and medicine is evolving for the better, and it is

I appreciate having the chance to share my experiences with everyone here and think I've learned a lot going over everyone's post history, this resource has provided a lot of insight to me




- Hazelboy98



26 yrs old    Descended from Heaven on 11/27/97

Severe pain and shape changes started on Nov 30th, 2020 from injury

Shape was back to normal by December 2021
Pain has now gone away and I'm mostly recovered January 2024

Chicago!

Tobyg

Hazelboy98,
I don't know if I understood correctly, but if you don't have friends you don't miss much... I decided not to have more friends since the vast majority are selfish (I only have 1 in a video game), I prefer to dedicate myself to helping animals, it's my life goal... changing her destiny makes me feel useful.

I want to hope that medicine will help me a little.

Greetings.
32 years,injured at 25.
Slight curve, narrowing and retraction in flaccid and semi-erect.
Loss of sensitivity due to peyronie and circumcision  moderate erectile dysfunction, pain.
I improved the pelvic floor with kinesiology.
Frequent urination.

Hawk

Hazelboy,

I empathize with your situation.  I have enough life experience (as opposed to years) to sense that your post might depart from the typical "pity me, I am worse than you and the 20,000 other members" posts that this board often turns into.  However, empathy for your situation does not mean we can devote a board to your concerns or that we can do anything to address them, or that this is the proper place to seek help.

This forum board is very limited in its scope.  It is for asking:
1. "Hi guys, I feel intimidated approaching women since this knocked the confidence out of me.  Any ideas that have helped you that I can try."
OR
2. I find myself obsessing every waking hour.  Is there anything I can do to help that?
OR
3. I want to share a concept I learned from a great therapist that has helped me with ......"

Nothing More.  It is where we seek psychological help and offer psychological support for people NOT suffering from psychosis and neurosis.  It IS for people struggling to do something about a new psychological challenge brought on by Peyronies Disease or Erectile Dysfunction.

It does no good to dump our feeling that the medical community should have solved this by now.  It does no good to express that "my life sucks so much that I would be better off dead." Or, "this is far worse than any disease. I would much rather have cancer."

All that does is bring angry men out of the shadows who start trying to top each other's misery index and spewing resentment against doctors, women, life, God, healthy men, and much more.  It does not help anyone.  Instead, it wastes huge amounts of emotional energy that could be used to help the problem.  It also steals a functional board from the members who need it.

As I indicated, those struggling the most had significant issues before "Peyronies."  I put it in quotes because many of them don't even have Peyronies Disease.  They have body dysmorphia, phobias, and other psychological conditions they now attach to their penis.  We would love for them to get help BUT, we cannot help them, and we cannot wreck our Psychological Aspect board trying.  You acknowledge that you also fit into the category of having life-limiting psychological issues before this new condition.  Those issues are, unfortunately, bigger than this board.  We cannot address them here.

However, you expressed one sentiment we can all identify with.   At least many of us have grumbled about how life sucked, only to have a new catastrophe that made us wish we could go back to those days we foolishly thought were so bad. Life has also taught us that we shortly lose our newfound perspective once we get back.  It is almost like each of us walks around with so many points of stress, anxiety, or panic, that we are determined to attach to something.  If we have 50 points of misery and we have Peyronies Disease, we attach it to Peyronies Disease and declare Peyronies Disease is the source of our unhappiness.  If, however, our Peyronies Disease is cured, we marry a wonderful spouse, have great kids, and earn a lot of money, we find something relatively trivial to attach that same 50 points of misery to.  That is why the Yale psychology course at the top of this board reveals lottery winners and people paralyzed in accidents end up back to the same level of happiness they had before their huge event.  It teaches what we can do to change that level regardless of our circumstances.   It is so weird no one bothers to take the course even though they claim they are desperate for help.  Instead, they want to turn this board into everything it was never established to do.

A few ending points.  I agree that in the hundreds of years framework you mention that we can probably cure, stabilize, or reverse Peyronies Disease.  So we are just where we should expect to be to have a cure in 2422AD.  Also, btw, the common cold is identified as caused by three or four hundred viruses, not millions, not even thousands.

Now, let's get back to the board's purpose before I have the unpleasant task of formally sanctioning members for failing to follow board rules.

PS: I recommend the FREE Yale course at the top of this board for those who are sincere when they say they are willing to take responsibility for improving their own psychological health.
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