Which of you has thought to suicide?

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sgtnick

Yes I prefer a penile prosthesis to pre-Peyronies Disease.  Absolutely!  Erections are very hard, girth is larger and glans is a lot bigger.

dioporcolorisolvo

Quote from: sgtnick on December 25, 2011, 05:12:53 PM
Yes I prefer a penile prosthesis to pre-Peyronies Disease.  Absolutely!  Erections are very hard, girth is larger and glans is a lot bigger.

Who has been your surgeon?

Justin

It's been some time since i last posted as i've been trying the path of "positive" thinking and "believing" things will improve, but after nearly 5 years of constant pain and ever-increasing amounts of scar tissue i'm getting to the end of my tether. I agree with a lot of the comments on this forum about putting this affliction into perspective, it seems ludicrous to end your life over a slight bend and discomfort. BUT!!! This i will say. If, like me, you didn't have the happiest of lives before the Peyronies Disease started, trust me when i say that i understand 100% how this could finish somebody off. Even if i didn't kill myself directly, the unending torment that this is putting me through could easily result in developing other illnesses due to the terrible psychological impact this is having on me. My feelings of self-worth and self-confidence are shot away, i'm nearly 40 and single with no intention whatsoever of getting my deformity out in front of a woman. I've spent over 1000 euros on a wide variety of "treatments" and all it does is worsen, relentlessly. It doesn't matter how healthy or unhealhy i live, how positive or negative i think, it just carries on getting worse. In a nutshell, i'm at the limit of what i can take. If this sounds pathetic to some people, then so be it. All i can say to you good folks out there who have this vile disease is that my thoughts are with you, and even if i can't do anything about it then i would at least like to send some "understanding" out to you all. I've never indulged in the emotion of "hate" in my life, but i'll make an exception for Peyronies Disease. It's loathsome, and it's ruining my life. So to all who suffer, my prayers and thoughts go out to you...............  

james1947

Justin
First I would like to say you don't sound pathetic to me and everything (almost)  you are writing is right also for me. I also know from my mother that what killed my father was the Peyronie's and not the heart problems he had.
From the other side, I would like to say few things.
I am 64 with a 2&1/2 year old daughter so I can't afford even thinking in such direction as of to kill myself.
In general in my opinion we don't have the right to kill ourself as also nowone have asked us if we want to be born.
Everyone is affected hard by this disease. You can read my story in "Introduce yourself".
I decided to do everything I can to improve my situation but I will make a penile implant when I will be able to afford it financially. I don't have any insurance coverage so I have to wait. As I read on the forum and in other places it gives, with a good surgeon, something that is better we ever had!!!
You are still young (less than 40). Why you are not thinking in this direction? Read on the "Surgery for Peyronie's Disease" discussion board the testimonies of people that have done implant. Read Jackp blog, it gives you a very detailed information.
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

PablitoNJ

I would have to agree with James. From what I've read here there are surgical options when all other treatments have failed. I can relate to how you feel as it's only been 7 months for me and it's emotionally, physically and psychologically draining having Peyronies Disease. I think the only thing that we can control is how we react to a situation. It's difficult at times, but I try to remain positive in knowing that some people have found relief in Pentox, VED or traction. There are some who have found relief in surgery. There is some promise in the Xiaflex studies. And knowing there's a place where I can go to share my frustration with other people who know what I'm going through helps too.  

dioporcolorisolvo

However this disease in young age is the evil.
I was 27 years old when disease appeared.
Now i'am neary 29.
My life is stopped. My relation is finished, i am not able to study, i sleep all days, all day.
Before disease i had the small penis sindrome.
Now mind situation is very bad, depression is at maximum levels.

But i have stopped to complain: the choise is simple: to continue life despite disease or to kill yourself.
There aren't other options.
I haven't yet done my definitive choice....

james1947

dioporcolorisolvo
It makes me really sad when I read your post. You are very young and I know, you don't deserve to be in this situation.
I know these disease is a horrible one, but your choice should be fighting the disease and not giving up.
You are very active on the forum, I read many of your posts, they are serious and hepfull for the forum and they also make it clear that you are fighting the disease.
Your knowledge in many subjects (not just Peyronie's) is much more than an average 29 year old.
You need just to be more patient. Have many new possible treatments in the horizon and if nothing else helps still have the implant option that most of the people are very pleased with the results.
You must to force yourself to be active and sleep just how much you need. It is not easy but from what I have learned from your posts, you have the capability to do it.
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

PablitoNJ

Hi dioporcolorisolvo. It really sucks to get this when you are not quite 30. But I think there are enough options out there to try that people have had success with. I think to myself, what is the worse thing that could come of this and then try to deal with that option. To me, if VI, VED, Pentox or supplements do not work, then there remains a surgical option. Not the choice any of us would probably want, but I've read enough to show that it can work. If ultimately it comes down to a penile implant then I can accept that too. I'll still have function - on demand at that!

Have you spoken to a therapist at all? It helped me to be able to talk to someone who wasn't emotionally involved. Embarassing, but it was helpful. I would encourage you to find someone to talk to and read the posts by the women on this forum. It helped me. And like James suggested, find ways to be active. I've found that when I get really down about Peyronies Disease, playing guitar helps me relax. So if you have any hobbies, try that when you are feeling down about Peyronies Disease. Or try taking up a new hobby. Something you've always wanted to try. Keep your mind and body active and remain hopeful. There are enough success stories here to give you hope that something will work for you.

AphexTwin


AphexTwin

For some reason i just can't get my mind around the fact that i am more than a piece of flesh between my legs.  I am 25 and already suffer impotence.   Is that something to really look forward to the next 40-60 years.   I'm starting to think not.    

LWillisjr

Don't focus on the negatives. There are things you can do.... even for impotence.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

AphexTwin

I tried viagra, cialis, ved.   I already tried to see if i was an option for penile implant.  They said no way.....i am way too young.  

james1947

AphexTwin

No, you are not too young for an implant if nothing else can't help!!!
I read about a guy that had the implant at 21 and if I am not wrong, one guy at 19.
I will try to find again from where I have the information an let you know.

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

LWillisjr

Quote from: AphexTwin on November 01, 2012, 08:29:18 PM
I tried viagra, cialis, ved.   I already tried to see if i was an option for penile implant.  They said no way.....i am way too young.

"They" are wrong. You need to find a doctor who has more experience in this field. Age should have nothing to do with it. There are countless stories on this forum about doctors who dismissed, or gave advice that was outdated or just not accurate. I can't imagine any doctore telling a 25 yo you are too young.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

Hawk

Aphextwin,

What area of the country do you live in?  Being a candidate for an implant has nothing to do with age.  It has to do only with whether other less invasive methods work or whether they don't and whether you are in good enough health for the surgery, NOTHING ELSE.

Why would you think you are too young?
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

AphexTwin

this was a few years ago.  The urologist who did my surgery at mayo clinic said no.  I then set up an appointment to see someone at Cleveland Clinic.   They also thought i should wait it out a little longer.

Hawk

Quote from: AphexTwin on November 01, 2012, 11:09:07 PMI then set up an appointment to see someone at Cleveland Clinic.   They also thought i should wait it out a little longer.

OK, now it has been a little longer.  That did not sound like a "NO" or a refusal, but more like he wanted you to work through and exhaust other options.

IF a VED, nor Viagra give you a sufficient erection to have intercourse and you have informed yourself of the issues then you are a candidate for an implant and many top implant surgeons in the country would perform an implant surgery for you if that is what you want.

That means you have real options.
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

james1947

Again regarding age for implant.
I have mentioned in Reply #63 some young people had an implant.
At 20, now 23, very happy with it ;D
At 22, now 26, very happy with it ;D
at 24, now 27, very happy with it ;D
And many more ;D
It is a real option also in young age!!!

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

Noway

I have the same problem with regarding the implant. The doctor said medication, injections surgery and i have severe ed when i brought up implant he didnt say anything and shook his head a bit. My big thing is the age too which i dont want surgery and still have ed otherwise im healthy

Noway

im 26 had this problem as far as i can remeber i think about it everyday also and it really sucks i cry sometimes when im alone.

MattFoley

Noway,

I read your initial post and was disgusted by the way the "urologists" you have seen have treated you by saying your problem is in your head and that you're not thinking right. And the mere fact that Pentox wasn't the first thing that came out of their mouths also horrifies me. I've been lucky because I've seen 2 urologists so far and both knew their business. The problem is that they don't specialize in Peyronie's so they gave me a referral to a urologist that does. I'm waiting to see him later this month. Now, if I had run into urologists like you ran into, I would have exposed them on the internet and warned other people about their level of "skill". But trust me, it's not in your head.

Now, please consider that you're 26 years old and your body should still be pumping out high levels of growth hormones and testosterone. You have an excellent opportunity to heal from this issue. There are still plenty of options. I know you've been dealing with this for a while and are sick of it but you have to keep pounding away at it.

I don't know what your health and diet are like but have you had your testosterone and other blood work done yet? I would really encourage that you have a full panel blood work done checking the following:

Testosterone Free
Testosterone Total
Thyroid Panels (T3, T4, TSH)
IGF-1
CMP Profile
Lipid Profile
CBC w/Diff profile
PSA
C-Reactive Protein

You need plenty of protein in your diet. You need to exercise. You need to talk to your doctor about possibly increasing the Pentox dose to 2,400 mg/day like Dr. Lue had suggested to another patient and something that I am doing myself.

Are you taking any supplements? Please consider some or all of the ones I'm taking.

Are you using a VED? Mechanical stretcher? Are you doing any kind of jelqing? Are you doing things to encourage warmth to your penis? I've got my hand on my penis all day long and even when I take public transportation I'm playing with myself (hidden by my back pack, of course).

And, yes, if it comes down to it, maybe surgery is the appropriate option. But before you take that step, please consider what I mentioned above. Also, when you do have sex, please consider that having the woman on top may be a less prudent way to engage her when she might cause further damage as she bounces up and down. I prefer missionary or behind her so I can control the motion and there's little chance that some uncontrolled thrust causes damage to my penis.

Please don't give up. You have to keep your spirits up.


Again, here's what I would like to know:

1. Beside the Peyronie's, what is your health like?

2. What does your diet look like?

3. Have you had your testosterone and other blood work done yet? If so, what are the numbers?

4. How much protein in your diet?

5. Do you exercise?

6. Have you talked to your doctor about possibly increasing the Pentox dose to 2,400 mg/day? If not, would you please do it?

7. Are you taking any supplements?

8. Are you using a VED? Mechanical stretcher? Are you doing any kind of jelqing? Are you doing things to encourage warmth to your penis?

9. Have you tried topical and/or injectable verapamil? If so, results?

10. What else are you doing right now as per the recommendation of your doctor?


Please respond to my questions and thoughts and let's see if we can't hit upon something that might help you. Thank you and God bless.
Got Testosterone?

DJones



I have recently had the peyronies graft surgery (hourglass deformity). I am having serious issues with depression and suicidal thoughts,  

My penis is straight now but lost more than 2 inches in length and some numbing. so far can get an ok erection but cannot orgasm, I also am noticing some narrowing coming back.

I have some hard scar tissue developing on the right side of my penis and am not sure what's going on with that. I return for my six month appointment on Feb 21, 2013. I just don't know what I am going to do if it comes back.

I am also bipolar and have been on medications for that way before peyronies, Which makes this that much more difficult.

If you are thinking of having the surgery, read everything you possibly can, I almost wish I had the implant so I did not lose the length

Noway

Hey matt

I disagree on jelqing but tried the ved but i think i have the wrong size tube. One doctor sent me too a peyronies disease specialist and he put me on cialis and pentox which helps but i still have problems. He will be trying injections. I have more of an ed issue i will bring up traction too the doctor and see what he sais. I dont think i have low testosterone i need too ask this too the doctor. All i take is cialis and pentox im relatively healthy besides this. I was taking pentox 3 times daily and just taking 1 pill does the same thing ive been on pentox for like 2 years i dont really think more is better.

Noway

djones when did you have the surgery those things take time too heal.

John B

I'm not even 100% sure I have Peyronie's, but I've had burning pain in the left side of my penis for 6 months, which has been hurting worse lately, from all the checking for a lump... I'm not even sure I have it and I feel suicidal, as I fall into daydreams about what may come of this... I already have anxiety disorder, OCD, depression, just lost my Mother, who I watched whither away from cancer... If my penis starts curving and I can't have sex, I can't say I won't end it all... Suicide seems like sweet salvation sometimes.

james1947

John B

I was many times in "no solutions" situations in my life because my own faults.
Somehow always, I believe God show me the way out from those situation.
QuoteSuicide seems like sweet salvation sometimes.
Should not be in your mind because you are young and I am sure you will have many wonderful and exciting things in your future.
It just don't worth to lose those things because a "sweet salvation".
Think also about the huge damage you will cause to those that are loving you.

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

John B

I'm going to wonder every time I see a suicide in young men if they had Peyronie's or not. I've had suicidal thoughts before, but now the idea has become so real that I don't even want help for it. Lately, I'll fall into daydreams about where, when, and how I'll do it.

I'm 33 and always had a strong desire for a woman. I have a strong desire for affection, sex, a friend partner, a child. But I wouldn't even go after that now. I didn't have dreams of being famous, etc., I just wanted a woman I loved, that I could love and have good sex with, and have a child with that friend. I was a Christian and didn't have sex all throughout my 20's or early 30's, as I wanted to please God and get with the right woman he'd have for me, and it was very hard waiting. Nothing was more hard than waiting. I was hoping it would be soon and my simple dreams would be fulfilled. Now, I am in pain everyday and think I'm starting to curve to the left.

I just don't know if I want to go on. I've always struggled with depression hard, even as a child, I would lay around sick from depression and I was abused by my step father, not sexually, but physically and mentally. Then an anxiety disorder, OCD, developed hard at 18, so I couldn't even walk from paralyzing anxiety. And at 30, I lost my faith, 3 years ago, and that was so hard on me. I cried so hard when I lost faith. I wanted to believe in the God of my upbringing that I loved so much, but it seemed a light came on and I couldn't believe that way anymore, it just didn't work anymore. I almost had a mental breakdown over it. Then I found out my Mom, which I was very close to, she was my best friend, had cancer. I moved into my Sister's, being I was single, and so did my Mom, because she was sick. I watched her waste away over a two year period. She was so beautiful and withered away to nothing. I was holding her hand as she gasped for air and died in the hospital. The cancer spread to her lungs.

Now, a few months after my Mom died, in July, I get this pain in the left side of my penis. It's getting worse and worse in pain intensity, and seems to be curving to the left. Honestly, I want to die. I want to rest. When I have a nightmare, I always wake up, and I want to wake up from this nightmare. I'm not even interested in getting help now. Something is going to have to click and change within me very soon, or I think I'll just wake myself from this dream by death. Since my Mom died, I'm so scared of dying now.

Would be nice if I could just instantly become enlightened, like Buddha, or something, and then I could live for the soul purpose of aiding others in their sufferings. But I just cry so hard and yet this human nature isn't shedding off. I want a woman and a friend and sex and affection, not to walk around divine; although, part of me does. It must be difficult to be born again, as one who is free from the wants and desires of this world. I need something to happen within me soon, or I won't make it. And I wonder sometimes, why should I make it? A walk in the Spring shows how nature aborts her own, with a dead baby bird on the ground on every block. A child dies of hunger every 5 seconds, and in severe pain. An animal is whimpering right now, as another has it by the throat. A child and woman are being murdered as I type this. This world has always killed off the weakest, maybe I shouldn't fight nature anymore and surrender to her will. Again, something will have to change soon, or I won't make it.

MikeSmith0

John - are you able to make an appt with a urologist to get some clear answers?   You can't be treated until you are at least diagnosed - and there are treatments - especially at the end of this year.  After 200+ years of this disorder being in the books, the FIRST treatment will be out in 2013 (xiaflex).

I sympathize with how you feel - you can read some of my old posts and I have gone through (and go through) many of the same feelings.  Now is the worst possible time in 200 years to give up though...as the FDA is presently evaluating xiaflex for approval (and most likely, it will be approved)

John B

Thanks, Mike. The urologist I went to said he can only think it's the start of Peyronie's, as I've been in pain in the left side of my penis for six month. I saw him for the first time 1 week ago to today. He said the penis looked and felt 100% normal, and concluded the pain was Peyronie's. I'm thinking he may be right because the penis seems like it may be bending left a tad, more so over the last week, strangely enough.

How will will Xiaflex work for curvature?  

DJones

Quote from: Noway on January 09, 2013, 04:11:58 PM
djones when did you have the surgery those things take time too heal.


I had the surgery Oct 12  2012.  

MikeSmith0

Quote from: John B on January 18, 2013, 12:23:00 AM
Thanks, Mike. The urologist I went to said he can only think it's the start of Peyronie's, as I've been in pain in the left side of my penis for six month. I saw him for the first time 1 week ago to today. He said the penis looked and felt 100% normal, and concluded the pain was Peyronie's. I'm thinking he may be right because the penis seems like it may be bending left a tad, more so over the last week, strangely enough.

How will will Xiaflex work for curvature?

It dissolves the scar tissue that is creating the curvature.  I am surprised by your doctor's conclusion...without a plaque or nodule, it's not necessarily peyronie's...pain isn't the main determining factor (not all patients have pain).  Plaque & curve would be the diagnostic criteria...as well as dents.

John B

It seems quite a few guys on here said they had no lump or dent, but in time it still curved.

Hawk

JohnB,

If you suffered from bouts of serious depression, anxiety disorder, and Obsessive Compulsive Disorder all while still in your teens obviously you have significant mental health issues that require ongoing professional mental health treatment including a good psychiatrist to regulate meds.  Finding you do not have Peyronies Disease or fixing it if you have it is not going to bring happiness by itself.  So, mental health treatment is job one.

Most men want what you want.  The minority end up with a good lasting marriage.  Many have serious health issues that make Peyronies Disease seem like a walk in the park.  Most all of us have watched parents and other immediate family members die.  The fact is that joy and happiness are not made impossible by these events.  One of my favorite quotes is by Annette Funicello who while suffering from MS said, " Life does not have to be perfect to be great".

I could write an essay on the importance of attitude.  If it were not against forum rules to debate religious issues on open forum, I could address most of your religious concerns and conclusions.  I could give you viable medical suggestions about your Peyronies Disease (jumping to the assumption you have it).  The truth is however, until you address the depression and mental health issues, these are just pegs upon which to hang your pre-existing depression.  

If I could get you to do 2 things in addition to seeking good mental health help it would be to:
1. Find someone less fortunate and lift them up by some simple act of service.
2. Read at least the first 2 sections of "The Road Less Traveled" by M. Scott Peck, MD. (Especially read the first 77 pages.  Read them slowly and ponder them.)

Good luck in finding the help you need to discover meaning in life and your value in life's journey.  I believe you are here for a purpose and it would be a tragedy for you to see that purpose only after taking you own life and missing the opportunity life affords.

Hawk
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

MikeSmith0

Quote from: John B on January 19, 2013, 05:42:40 PM
It seems quite a few guys on here said they had no lump or dent, but in time it still curved.

that sounds more like congenital curvature.  the penis cannot curve unless there is a reason (scar tissue / plaque - or the person went through puberty and the congenital curve became more pronounced) .

I am not sure who you are referring to but there have been a lot of misinformed and confused posters here spewing bad information since i joined the board 3 years ago.  It can take  a while to figure out who they are if you are newer to the board.  If you've been to a Peyronies Disease specialist, then you can be more confident in your diagnosis.  if you went to a generalist or even a general urologist, then i'd be skeptical.

You said that your doctor "concluded the pain was Peyronie's. I'm thinking he may be right because the penis seems like it may be bending left a tad"

Pain is not the primary symptom. And saying that it  "may be bending to the left a tad" is not Peyronies Disease...what is a tad?  5-10 degrees?  That is within the range of normal.  Did it lose length or girth?

If not, I cannot even imagine why you would be depressed and suicidal over your penis that "may be bending to the left a tad" when there are people on this board who have lost 50% of the total size of their dicks in length and girth...or cant even have erections at all.

Based on your post from 1/17 - combined with this - it sounds like you have depression and are just fixated on your penis.  If you can post a picture like this, then you have peyronie's.  for now you just sound depressed...and you said yourself you have OCD.  So, i'd focus on those two issues.  

Ok i just read your other posts where you said you think it is cuving a FEW degrees and the pain is BURNING... ok you are 0 for 2 for peyronies.  "Maybe a few" degrees is not this disorder.  Burning pain is not peyronies either.  Peyronies Disease pain feels sore - like you ejaculated 6 times in one day or had sex for 3 hours.  There may be nerve pain or shooting pain but not burning pain.  I think your doctor is misinformed...certainly not the only one to be misinformed about Peyronies Disease.  


John B

Mike, several people on the forum here have said they had no lump, that could be detected, and they began to bend considerably. My penis hurts terribly on the left side, like a constant burn, and sometimes a sharp pain. Weird thing is though, sometimes I can't really find the exact spot of the pain. But I can tell you after I feel around for a lump, I hurt worse afterwards.

No doubt, I'm extremely depressed. I have major depression, OCD, and anxiety. My mother recently dying added to the depth of the depression. I was already flirting with the idea of suicide before I even knew what Peyronie's was, a few months ago. Right now, I don't see any real curvature when erect, but it does seem when I'm flaccid and semi-erect it is being pulled to left, with a bending in the middle, but again, not really so when fully erect. I can say, my penis does look off a bit, even when erect, like the right side, from the middle up, looks slightly bulged out more. I don't think I've lost any length, or girth, if so, very little. But with this pain, I think scar tissue may be in the process of forming. And the left side of my penis does feel more firm than the right side, when flaccid.

OCD is a mental illness which obsesses constantly. It's nicknamed "The Doubting Disease." I'm depressed and my mind continually falls into visions of my penis being terribly bent, and it scares me terribly. I've been crying an hour a day in fear, because I may start bending terribly. I've looked into every penis disorder, as any OCD'er would, and it seems like Peyronie's is the only explanation of this pain. The pain is getting so bad I pop ibuprofen 600 to 800mg, and it still doesn't really touch it. Only thing I can think of is that it's Peyronie's Disease, caused by the beta-blocker.

I would agree with you, and Hawk, that if I didn't have mental health issues, I could deal with this quite better, but I feel like on top of all this that Peyronie's may be the boulder that crushes the camel's back.


Hawk, if you'd ever like to discuss the religious side in site PM, I wouldn't mind; although, I don't have the strength to debate religious issues anymore. I see good in all religions, yet I disagree with them all, in part. To each their own, and I hope it helps them and makes them good people.

And thanks for the recommendation of the book, I'll look into it.

MikeSmith0

I know all about OCD - that's why i thought it would be more productive for you to work on those things than on Peyronies Disease, which is doubtful you have...and can't do anything about in this state anyway.  Buspar (buspirone) seems to be the most effective drug in dealing with body-related obsessions.  

If you are seriously having Peyronies Disease related pain, there is a paper out by Munarriz (Boston university) that says triamcinolone  (corticosteroid), injected into the blood stream of the penis (not plaque) will alleviate the pain.

In the very early stages, the plaque might be very thin and undetectable...but you said you had 6 months of pain.  Something more than a tiny curve would be visible by now.  Also, Peyronies Disease does not have anything to do with the flaccid state.  It is a disorder where scar tissue forms in the penis and prevents the penis from expanding properly - thus leading to the bend only in the erect state. People with severe plaques might see something in the flaccid state...but that is incidental.  

I know too many people with OCD to talk about this much more - since I know you have your own narrative in your head and i am talking to a wall.. .but Buspar did help many of them.

John B

Yeah, unfortunately, the Doubting Disease of the mind is strong.

The pain started in July and was very faint. Like a weak throb, then it seemed to disappear or become so faint I didn't pay it much attention. In October it came back, but wasn't too bad, just a dull aching pain, but bad enough to see my general doctor, who squeezed my penis and said it was fine, and the pain would go away. But the last few weeks, since feeling around for a lump, and seeing the general urologist, it's been on fire and aching badly.

I'm not sure all would agree with you that I would have had a fair bend in my erection by this state.

MikeSmith0

Quote from: John B on January 19, 2013, 11:17:25 PM
I'm not sure all would agree with you that I would have had a fair bend in my erection by this state.

I'm just going by what you said:  "Right now, I don't see any real curvature when erect"

I don't know what the cause of the pain could be.  If it is pain from Peyronies Disease, then give your doctor this:

http://www.andrologyjournal.org/cgi/content/abstract/31/5/445

Hawk

Mike, Very interesting and somewhat innovative study even though it was very small.  Thanks for posting.

I want to move back to psychological aspects.  A few posts back I quoted Annette Funicello.  I also have a personal experience that I marvel at but never connected to our struggle with Peyronies Disease before.  

My father was a very physically fit active man that worked hard.  He was a bit of a brawler but was well liked and was extolled in the news paper once for beating a guy that tried to break in on a neighbor lady and holding him for police.  Anyway when  I was 3 a drunk hit my Dad as he stepped off a curb.  He picked Dad up, stuffed his unconscious body in the back seat of his car pushing the broken bone in his leg 6" out through the skin.  He came to there sitting looking at the bone.  My dad got gangrene and was in a full leg cast for a year.  It had a window in it where they could cut dead flesh off and change the dressing. Being the kind of man he was he learned to get around well in his cast even though he finally had to have one of the bones in his lower leg removed from infection. On day when I was 4 yrs old I was out siting with him as he worked on our car (still with the cast).  I vividly remember him sliding out from in under the car looking strange and pale and saying "Buddy, I have to go lay down, I don't feel very good".  He did not get up for months.  In his weakened physical condition my Father fell victim to polio.  He was stricken with 2 of the 3 types of polio and it was not good.  

Unlike many my father did not get a partially paralyzed leg.  Instead, his chest, triceps, legs, and hands were badly affected.  His breathing was compromised and he fought off pneumonia most winters.  We were told he would not live the night at one point.  Then we were told he would never get out of an iron lung.  Then we were told he wold never walk.  I remember well the day he proved them wrong.  My father lived with a 100 lb emaciated frame for decades.  He was disable to the point be could not walk on anything but flat, even ground or on the floor.  He had no way to throw his arms out to catch himself and would just fall like a tree if he lost his balance.  This once cocky physical man was a shell of his former self.  He had trials I won't bore you with and he did not always use the best coping strategies. but I was grown and he was gone before it stuck me one day that in all his years laying in bed, or fighting off pneumonia in a hospital, or nursing a new broken bone from a fall, I never heard him vent about his condition.

My only point to all this rambling is that along with EVERYTHING ELSE, you can rest assured my dad's sex life was significantly impacted.  He had no hope of a treatment much less recovery.  At 34 he lost everything that had ever given him a reason to be proud including his ability to support our family.  Even though he was not particularly religious, he never held a grudge toward man or God.  I never heard him ask "why me?"  I never heard my dad lament what could have been.  I never heard him curse the man that ran him down.  In fact as fate would have it we ended up living right down the block from that man and he would walk by our house with his head always looking straight down at the ground.  My father made it clear that we were to NEVER say anything that could make that man feel worse than he did and my Dad said it such a way that even a child knew he was deadly serious.

Since I have grown to have some perspective as an adult I often wonder where his forgiveness came from and where he got his sense that life is precious and too short to complain about the difficulties.  Life really does not have to be even close to perfect to be great.  I guess my Dad taught me that all my life without ever really saying it.  When I read Annette Funicello's quote it just confirmed what I know to be true.  Life is precious.  We are all valuable.  Difficulties are guaranteed to happen.  Make the best life you can with what you got.

Sorry for the long somewhat off-topic reflection.  It must be old age.
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

Hawk:

No, it is not your old age, just you telling the truth about life and it consequences. A lesson that all must learn to have a successful life!!

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.

dioporcolorisolvo

Quote from: John B on January 17, 2013, 11:18:32 PM
I'm going to wonder every time I see a suicide in young men if they had Peyronie's or not. I've had suicidal thoughts before, but now the idea has become so real that I don't even want help for it. Lately, I'll fall into daydreams about where, when, and how I'll do it.

I understand you very well.
I'm 29 years old and since 2 years i've peyronies.
I've tried all standard treatments but without benefits.
I'm searching for a gun and when i will find it i will die. I've talked about this also with my parents.
They are destroyed but life is cruel and i will not live whit this disease for all the life.
I write here not in order to unload, because i don't search for help, but to give you an advice:
i don't know which is the situation of your penis, but it is possible that you can obtain benefits whit the elimination of sugar and other foods and with integration of 3g daily of Omega 3 attested.
My advice is to desert any treatment and starting to eat Paleodiet and Omega 3 integration.
My penis is in these conditions also because of treatmens that have worsened situation.
Don't me ask why, i don't know, but i assure you that treatments have worsened situations (VED, infiltrations, pentox ecc ecc ).
I hope you will be better.
Hi.

Hawk

I am going to say what I think here. I have compassion for all of you of every age but I see so many people so much worse off that value life.  I will not bore you with another long post but a man I know died this week at 60 yrs old.  He had such bad epilepsy that his parents tried to keep football helmets on him as a teen.  The grand mal seizures slowly destroyed part of his brain and he lost his ability to speak plainly and the fine motor coordination in his hands.  He died of a fall that broke his neck.  Through it all he volunteered and did work in his home for the local hospital and for his church.

I have seen families devastated by suicide and I consider it a desperately selfish act.  It is simply a way to transfer your pain and problems onto others that also have enough issues to handle.  I say we all carry our own load and teach the generation that follows the decent way to both live and die.  The generation that came before me certainly did that for me and I will be damned if I will be the one slip out from in under my burdens and shift the pain to people I claim to care about.
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

John B

I agree it would be best, as we humans call it best, to live a life for others if we can't live to satisfy our natural wants and needs. Getting Peyronie's young in life, or worrying you may have it, seems considerably harder. If an older man has already had plenty of female love and affection, sex and children, then he could be thankful for what they did have before Peyronie's. To get this disease in youth, or in the prime of life, before you've had affection, love, sex, and a child is extremely tormenting. Even if one puts aside greedy lustful wants, there remains a natural purer longing for the touch and love of a woman and child, and to be desirable to a woman. To be denied such things, when our body is constructed to long for those things, is to feel one has been stripped of his humanity. He feels he can no longer be fully human, so others tell him he must shed that humanity and become divine by living to help and aid others; yet most who tell him that are far from what they are requiring of the tormented man.

Again, I agree it would be best to live for others, and to be able to master those strong natural desires, but most men have never developed such mastery through a spiritual or mental practice. I wish I had developed a mental foundation over the years, so when the storms come I don't feel suicidal, but I haven't. And trying to find mental composure in the midst of the crisis, when you haven't built a strong mental mastery, is like trying to build a shelter in the midst of a hurricane, or building weapons in the battlefield. I'm reminded of the parable of the wise and foolish man, one build on sand, the other on firm rock, when the floods came the foolish man was in ruins.

If a man ends up disabled in his youth he may see suicide as a way to awaken from his nightmare and as one of nature's greatest gifts to escape his misery, but he will leave a wake of suffering, as has been said. If he has love for others and his family he'll settle on living and aiding others, which at present seems like thirty years of tormenting unfulfilled desires that will haunt his mind until he dies, so he'll only overcome this torment by developing a spiritual and mental practice whereby he masters his thoughts and feelings. It can be done, but one finds it hard to gain that amount of strength when he's mentally tormented.

It must be a great thing to have a crooked penis and a straight mind. Awhile back, without even thinking of Peyronie's, I bought a book about Zen master Shunryu Suzuki, and the name of the book was "Crooked Cucumber." And, no doubt, if one seriously took up the practice of Zazen they'd be able to overcome any crisis of life. Suzuki was called "Crooked Cucumber" by his teacher, because they were counted useless, and he didn't think Suzuki would amount to much, but Suzuki is now counted among the greatest of Japanese history, showing many a better way of life that reduces mental suffering greatly. Anyways, I hope no one here kills their self, but finds a way of living even greater than before. Whatever their belief system, if one practices with devotion, I think they can get through this.

coh

i think , suicide is not a go solution especially  your mind and your thoughts are clear.  i believe in god  and that  jesus christ is die for us. he gave he's life for us , so we can live forever and not go lost. for this reason I kept myself from doing suicide

but it's not easy to handle this illness. my dreams of a family with wife an children are far far away, maybe not coming true. I'm afraid to come in isolation.

but i will fight against this.

one thing is sure: everyone will die one day , the rich , the poor, the young, the old, the sad etc. and then we should be prepared to have peace with god. I'm trying to see this illness for me to get prepared, but I'm also praying and hoping for healing and a miracle.

funnyfarm

I am in the same boat as others, young, single and frustrated.

None of us knows what the future will bring, the only thing we know for sure is that our circumstances will change at some point.  I can not tell you when, why or how.  That is the mystery of life.   When you are the the very bottom sometimes there is a death of sorts,  a death of regretting the past, and a death of hoping for a symptom free body.   Perhaps we can find peace with some level of surrender to our terrible circumstances.  

Please be strong and try to take life one day at a time.   It is possible you may look back at this experience and be glad you persevered and had the faith to make it through this.    
When you are in tune with the unknown, the known is peaceful.

dioporcolorisolvo

Quote from: Hawk on January 23, 2013, 02:16:48 PM
I am going to say what I think here. I have compassion for all of you of every age but I see so many people so much worse off that value life.  I will not bore you with another long post but a man I know died this week at 60 yrs old.  He had such bad epilepsy that his parents tried to keep football helmets on him as a teen.  The grand mal seizures slowly destroyed part of his brain and he lost his ability to speak plainly and the fine motor coordination in his hands.  He died of a fall that broke his neck.  Through it all he volunteered and did work in his home for the local hospital and for his church.

I have seen families devastated by suicide and I consider it a desperately selfish act.  It is simply a way to transfer your pain and problems onto others that also have enough issues to handle.  I say we all carry our own load and teach the generation that follows the decent way to both live and die.  The generation that came before me certainly did that for me and I will be damned if I will be the one slip out from in under my burdens and shift the pain to people I claim to care about.

Hawk i understand your speech but we aren't all identical.
I don't want complain about this but I've also other diseases in addition to peyronie that have reduced to desperation.
I've a bipolar disorder since i was 18 years old, i've the chronic pelvic pain and i've the right knee in very bad condition since 3 years.
I miss deeply my ex girlfriend and i don't see a future for a lot of reason, if these reasons are more real or more abstract it doesn't matter, my mind is exhausted.

funnyfarm

DP I totally think your frustration is justified, I hear you.

I will add one more thing you may or may not be able to relate to:

A spiritual teach told me there is not suffering when you are in the present.   If you can give all of your past story (causing the exhaustion), and all of your future expectation, living in the now, the pain will subside.  I know it sounds crazy but it works.  The challenge is stay present (surrender) but it is a skill that can be developed with practice.  

I wish I could add more to help you.

When you are in tune with the unknown, the known is peaceful.

Hawk

I want to say that I have held suicide victims in my arms as they die including one 18 year old.  It is such a waste because life is such a miracle that even disabilities only affect a fraction of the potential.  I think I posted a link to the guy playing guitar with his feet.  With a half a brain and a piece of body anything is possible.  Not to mention a little selfless love living for others.  How many great people started with serious problems that they overcame.

Next is the fact that Peyronies Disease does not stop you from becoming a father or a husband.  I can dig up stories right here on the forum to prove that.  Men find girl friends, make them wives, have children.  The only thing different between those men and others is their minds, not their dicks.  We have men suicidal over 30 degree bends and guys with 90 degree bends that would think it was a miracle if they could just get to 45 degrees.  It is the mind that is different and only you can fix that attitude.

Old men have one advantage over young men.  They have lived through enough adversity that they realize every tragedy is NOT the end of the world or the end of happiness.  I have had immediate family members that were paralyzed, that are bipolar, that have cancer, but they make great lives.

If you learn nothing else ever about Peyronies Disease learn this from an old man.  Get out of yourself and your problems for a while.  Lose yourself in the service of others and you will find a life.  In addition you may find the reduction in stress actually helps your own disease to improve.  Do not be prisoners of your own negative attitudes because it is your attitude, you have the power over it.  You have the power to change it.
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

John B

Someone should write something for men with Peyronie's, called, "Bent Penis, Straight Mind: Ways of Mentally Dealing with Peyronie's." And in it have real strategies that help.

MikeSmith0

Quote from: John B on January 23, 2013, 04:15:59 PM
I agree it would be best, as we humans call it best, to live a life for others if we can't live to satisfy our natural wants and needs. Getting Peyronie's young in life, or worrying you may have it, seems considerably harder. If an older man has already had plenty of female love and affection, sex and children, then he could be thankful for what they did have before Peyronie's. To get this disease in youth, or in the prime of life, before you've had affection, love, sex, and a child is extremely tormenting. Even if one puts aside greedy lustful wants, there remains a natural purer longing for the touch and love of a woman and child, and to be desirable to a woman. To be denied such things, when our body is constructed to long for those things, is to feel one has been stripped of his humanity. He feels he can no longer be fully human, so others tell him he must shed that humanity and become divine by living to help and aid others; yet most who tell him that are far from what they are requiring of the tormented man.

Oh wow QUITE the diatribe for someone who previously stated  "Right now, I don't see any real curvature when erect"...and you're 6 months in.   You are aware that there are men on this board who cannot have erections at all, right?  Or men with 70 degree bends, men who have lost 40% of their penis size?  And you go on this long complaining diatribe when all you have is some PAIN?  Are you f'^+'ing kidding me??

I sent you the link to have pain treatment - which you couldn't even be bothered to thank me for in your long ass 4 paragraph post....so F^@% you.  It's so obvious that you do not have Peyronies Disease, but what you DO HAVE is this: http://en.wikipedia.org/wiki/M%C3%BCnchausen_by_Internet

And nobody with Munchausens is getting any sympathy from me.  Do you have any idea how offensive you are to people who actually HAVE Peyronies Disease and have to deal with this IN REALITY?  WE don't even write long complaining posts like this - and WE HAVE THE ACTUAL DEFORMITIES.

Hawk, why are you tolerating this?  It's incredibly offensive...beyond offensive to hear this person rant and rave about the depression he has from a disorder that HE ADMITS HE DOES NOT EVEN HAVE!  I would appreciate it if you could please read http://en.wikipedia.org/wiki/M%C3%BCnchausen_by_Internet and then get ban him.   He has no place here.  I am literally irate from reading his posts.

I joined this board almost 3 full years ago and have NEVER been so offended & angered by a member.  I know I am not the only one - my PMs made that clear.