Penis is EXTREMELY fragile

[Thisismyusername]

Guys, I'm really going to lose it.  I've had pain for the past 7 months all day long every day.  Over time the pain tends to improve but my penis is extremely fragile and every month or so I have an accident that resets all the progress I've made.  I think I may have just had another accident and I'm freaking out.  I can't f'^+'ing handle this.  

At first when the pain started I kept having sex.  This made things worse.  Eventually I stopped that.    The pain eventually went away.  I had sex again and it came back.  So I stopped again.  I still tried masturbating gently and it irritated things.  I tried just touching the head of my penis.  That irritated things too.  So I stopped sex and masturbation completely.  Then while half asleep one night I had an erection and accidentally kicked my penis.  The pain had improved significantly up until that point but got really bad again.  A week later I managed to kick my erection AGAIN.  Pain got even worse.  I finally thought things were getting better again a month later and I accidentally elbowed my erect penis.  The pain got bad again.  Then it was improving again and while asleep I rotated in bed slightly and my penis pushed into the bed.  This caused the pain to flair up again.  This happened a few more times.  A few weeks later the pain was improving again but while having an erection I lifted it with my fingers and felt a sharp pain in my penis.  The pain flared up again.  Its been 4 weeks since that happened and I finally started having a few low pain days in a row.  But just now while putting my flaccid penis back in my pants after peeing I felt a sharp pain in my penis on the left side.  Now I'm afraid the pain will reset again.  

This all sounds so ridiculous that it's probably hard to believe or even sounds comical.  But its not.  My life is a living hell.  I am paranoid of hurting my penis all the time.  Everything can hurt it.  The pain gets worse when I wear jeans, when I take walks, when I get erections.  Have not had sex in over 4 months.  Afraid to even move with erections.  Afraid to stretch my flaccid penis too much by accident when pulling foreskin back or forward to pee.  Afraid to even wash my penis in the shower.  Afraid to fall asleep in the wrong position or hurt my penis during sleep.  Even in my dreams I have peyronie's disease.  I dream that my penis has deformed horribly.  I dream that I try to penetrate for sex and my penis collapses in on itself like it were made of paper.  I dream that I am going to have sex and I stop myself because I have peyronie's disease and I wake up freaked out.  

My whole life is basically devoted to not injuring my penis further and no matter what I do something happens.  The slightest little thing will cause pain flair ups for weeks.  This is no way to live life.  No pleasure and only pain and frusteration, no hope, no only brief periods of improvement followed by complete reversal.  I feel like I'm being emotionally tortured.  When I think of visits to the urologist when I got diagnosed I feel like I'm going to panic.  I feel like I've been traumatized.  Nobody can help me.  I'm alone.  My girlfriend lives far away and I never get to see her.  When I do it is more likely that I will injure myself because of the erections that I get.  This is just insane.  I never imagined something so horrible could happen to someone.  

There are so many things I still enjoy about life but overall I am suffering far more than I am getting enjoyment out of life.  I freak out about my future a lot.  I can't imagine myself being happy.  I can't imagine returning to a sex life that is even remotely normal.  My penis is not really showing any improvement in pain overall.  Only fluctuation and temporary improvements that inevitably lead to set back.  

Life is hard enough without this.  I have trouble fitting in with people.  I'm trying to get a PhD.  This is affecting my studies.  I'm still succeeding but I know I would be a lot more engaged and involved in life if I wasn't suffering this nightmare.  A large portion of my pleasure and happiness used to come from my penis.  Now it is the primary component of my suffering and no longer brings me any happiness at all.  It's bad enough to not be able to have sex anymore.  I feel dehumanized.  Not just less masculine.  I feel less HUMAN.  I'm jealous of other people for their penises.  My penis used to be my pride.  Now it is hell.  

Yes this has turned into a pointless rant but I have nobody to talk to.  I have no friends and my girlfriend is not available right now.  I just hope I can sleep tonight.  I have work for school.

I'm tired of suffering.  I've suffered enough.  I wish I could go back in time and avoid this injury so I could have a chance at happiness.  It's just really hard to imagine an acceptable future at this point.  I don't know what to do.  

[payne]

I have had many of the symptoms that you speak of.  My pain started April 2012.  I had pain mostly when erect (bad enough to not want to have sex).  The pain would at times feel better and then get worse.  The source of the pain kept changing places along the shaft.  I also experienced pain when flaccid and burning sensations at times.  I've tried serrapeptase, acetyl l-carnitine, Ubiquinol, l Arginine and later on vitamin e.  I felt hopeless, like I would never get rid this pain.  It wasn't until Augest 2013 when I incorporated the vitamin e that I can honestly say the pain started to subside.  

When I started vitamin e I felt a change within days and then after a month the pain was reduced greatly.  It could have been coincidence but I feel a weight was lifted from my chest.  

I did not post this sooner because I wanted to be certain that the pain was almost gone.

I am left with scares though.  I have three lumps, a dent and a 40 degree curve to deal with now. My theory is that the vitamin e may have helped me stabilize sooner.  Lately I've been having slight pain when flaccid but I think that's from the ved I'm using to help straighten out the curve.

Anyway I may have gone into a little too much detail but my point is hang in there brother there may be hope for you yet.

What is it that you're taking to combat terrible disease?

[Thisismyusername]

I've tried lots of things for pain:

Most of the OTC nsaids, ibuprofen cream, diclofenac, diclofenac patch, mobic, st johns wort oil, pentox, CoQ10, vitamin E, L-arginine, a prescription cream consisting of ketamine, ketoprofen, baclofen, gabapentin.  Tried heat, ice.  Pelvic stretches, and Vicodin.

Of all those things, nothing helped at all other than Vicodin.  The prescription cream actually burned on application.  The pelvic stretches actually made some pain I have in the perineum worse.  This is actually a sign that I have CPPS in addition to peyronie's disease.  

I'm going to try:
Saw palmetto (started a few days ago, too early to tell), maybe prostaQ if Saw palmetto doesn't help, propolis, vitamin D3, physical therapy for pelvic pain.  Recently was prescribed "nucynta" by my pain management doctor.  Have not researched this medication yet or tried it.  Won't be able to fill the prescription for a few days.  

I'm also trying to eat more vegetables and cut back on carbs.  I have been somewhat successful in sticking with this so far.  No real clearly noticeable effect on pain yet though.  

In general the only real things that "help" are avoiding things that hurt.  This means: no sex, no masturbation, be very careful when touching penis, don't exercise much, try to wear loose soft clothes if possible, avoid bumpy public transportation, be careful that I sleep in such a way that I am unlikely to roll over and push my penis into the bed again.  

Currently taking: CoQ10.  I don't think it has helped, but F^@% it, I'm not stopping given it's reputation as something that helps reduce curvature and pain.