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[Justinian]

Hi, everybody. 

Well, here I am - presumably for the same reason as you are: I've been dealt a rather rough hand by the fates and have ended up afflicted by the cruel and horribly unfair malady that is called Peyronie's disease.

My Physical Situation

I first noticed my Peyronie's about four and a half years ago - one fateful night when I was no more than a boy of 18, I noticed some odd bands of hard tissue just below my glans (head of the penis.) Oddly enough, I can't remember many details of the progression other than that the quality of my erections diminished quite quickly after I first noticed my plaques. Unusually, I don't have a much, if any, of a bend - instead, I have a bottlenecking effect close to the the head of my penis which leads to, overall, a sadly weak erection. I would estimate it's, at most, 75% of its original size and firmness when erect; the head is pretty close to soft when I'm erect. Viagra is the only medicine I've tried to help this, which did absolutely nothing. Therefore, I'm sceptical that Cialis will be any more effective. Now taking Vitamin E, and arranging an appointment to see if I can meet the Dr. in Toronto who specializes in Peyronie's (I'm about an hour outside Toronto).

The last time I saw my urologist was a year ago, when I got viagra. I hope to get a new one, because he has been cold, unhelpful, and it has required my suggestion/requesting of things rather than him ever prescribing anything proactively. He exudes an air of "there's nothing I can do for you." Medically, I plan to ask my Dr. about Pentox and Verapamil. Do I have to order L-Arginine online? I can't find it at the pharmacies here in Ontario.

I usually don't have much pain. Occasionally I'll have a feeling of pressure or discomfort in my penis - in fact, I feel it right now as I type this. Other than that, I've been fortunate to escape any serious pain associated with the disease.

I've also been handed the double whammy of suffering from premature ejaculation in the extreme measure. And I mean extreme: I've literally never lasted more than 5 seconds with a woman. Though the last time I had any intimate contact was a long, long time ago.... All this put together means I've never had a real (penetrative) sex life, and probably never will.

My Psychological Situation

The last five years of my life have been, at their best, something approaching a normal life - at their worst, a living hell of internal suffering. But the "normalcy" I've managed to eke out in my own mind seems always to turn out to be only a temporary respite from the bitterest, grimmest of truths: my penis is broken, my "manhood" corrupted, my chance of a normal sex life ruined forever. As you all know, it's a monumental struggle to come to terms with this disease, and I wrestle with the consequences of Peyronie's each and every single day. It seems an incredibly cruel circumstance of fate that I've been given a body with natural urges to love and make love, yet had the primary instrument of that love be turned into an object of suffering, shame, and pain. Though I have good days and bad days, there seems to be no final dawn at all. No light at the end of the tunnel. I am seeking psychiatric help due to the darkness this disease consistently shrouds my life in.

I avoid relationships. I've turned down cute and kind girls that liked me because I'm too chicken and paralyzed by shame and fear. But I always get up and try again. I think we all deserve tremendous credit for dealing with this - credit we'll never get, because, well, who wants to tell everyone about their Peyronie's disease?

I have given absolutely everything to maintain a positive worldview, but at times I've found it completely impossible to simply "not let it get me down." I fight and I struggle and I resist - but I intrinsically can't seem to accept that my penile function is severely compromised forever. Every time I see a pretty  girl, it's like a whiplash to my soul - the body urges, the mind reminds me of my (seeming) inadequacy, of my curse. I just want to be normal. If you could trade an arm or a leg for the cure to Peyronie's, I'd do it in an instant. I'm haunted by images of what my life could have been by this point if I hadn't suffered this malady.

Five years of this. Five years of pain, anger, hurt, loneliness, depression, suffering, and isolation. A disease that 99% of men my age will never hear of, let alone have to live through for their whole adult lives. When I first came to this site I was scared off for a long time after reading a few guys saying "Well, geeze, this is horrible now - imagine how bad it would be if you got it when you were 18! We're just lucky that's not us." Well, I'm living the nightmare of the guys living the nightmare.

Sorry to sound negative, because often I do manage to keep a smile on myself. I just needed a place to vent, because, well, everyone needs that I think. I have almost no one to talk about this freely with. I do believe that someday I will overcome this - mentally, if not physically. I have no other choice than to overcome it - or else doom myself to a useless life of sadness. But right now, as a young man, this is just too hard to take and carry on with a normal life.

If anyone's read this far, thank you so much. Is there hope for me? What things can I start doing that I'm not? I would love to hear from anyone: thoughts, advice - any shred of consolation or commentary would mean the world to me.

[welshwales]

Hi Justin, welcome to the forum. Sorry to hear of your problems. There are a few other guys here of a similar age to you. Ages here range from men in their teens right up to guys in their 80s. I think you will find these boards most helpful. Firstly, there is hope. A lot of guys have managed to reduce the severity of their condition by taking measures outlined here. The meds you mention could help you a lot, also VED therapy could really help too, so make sure you check out that board.
Regarding your premature ejaculation, you might find a lot of help on a different forum called pegym.com as they have a quite active dedicated board with a lot of info on the topic. There are also medications which can help, but some of them (SSRI antidepressants) would be totally counterproductive to your Peyronies Disease.

[emasculated]

Calm down.. you are already taking the right steps going to a specialist and considering better meds. In my humble opinion you could be wrong about Cialis.. Given in a low dose for a year it might improve your erectile situation. It may just take some time. I would not give up on this angle. And let us know what the doc said. Good luck!

[UrsusMinor]

Hi, Justinian--

Sorry for all your troubles. But, then, almost everybody here has some version of what you are experiencing, so we understand what you're going through.

As to Arginine, I don't think that a pharmacy is the right place to look for it (though some might have it). A health food store, vitamin shop, or bodybuilding store will have it. There are also many online stores that have it, including some online stores based in Canad. In Ontario, here is an online store that carries it, which also has two brick and mortar stores: http://www.feelgoodnatural.com/

That said, no one here has much faith in the benefits of Arginine for Peyronies. In terms of erectile effects, the body adjusts (downregulates) its response to Arginine fairly quickly, so it only has an effect for the first day or two--and it requires substantial doses. (One strategy is to only use it perhaps once a week, in a single dose of 4-5 grams.)

I think that many of us would recommend you look into CoQ10/Ubiquinol and Acetyl L-Carnitine. (Don't confuse the Acetyl L-Carninite with standard L-Carnitine.) They have more evidence for effectiveness than Arginine, and don't involve chowing down huge handfuls of capsules. These are also available in Canada at health food and vitamin stores (I checked).

Incidentally, Cialis is different from Viagra, has other secondary effects Viagra does not have, and has a much much longer half-life in the body. So don't automatically assume that becasue Viagra did nothing that this is the case for Cialis as well.

[Marcus01]

Hi justinian, im also very new here so cant give all too many advice. I'm 30
And also from Canada ( Montreal area ). Ive been cursed with Peyronies for about 3 Months. I feel your pain. Ive found the cheapest place to buy the vitamins ( I got the CoQ10 ) is Costco. The vitamin E prescription you can get about anywhere. Let me know how your appointment went with your specialist in Toronto. I'm on a waiting list in Montreal at Royal
Victoria with Dr Serge Carrier. Havent met him yet. Will keep you posted. Also Im waiting on my regular doctor to prescrib me Pentox. Will let u know if any side effects are lived. I havent tried Cialis or Viagra as i still have strong erections ( and it wont help my 75 degree left curve at the base of the penis ) but I tend to agree that just because Viagra didnt help u much, Cialis could be worth a try. The active ingredients might be different and act differently on the body. Good luck in improving your situation.

[Jonbinspain]

Firstly, I would use Citrulline Malate instead of L-Arginine - it's more effective. You can read the thread here about it. Secondly, it's far cheaper to buy both in powder form. They both dissolve easily in water. I buy 1kg bags for around $50 U.S. They should both last for a few months.

[UrsusMinor]

Firstly, I would use Citrulline Malate instead of L-Arginine - it's more effective.

Citrulline malate is also fairly pleasant-tasting--very sour, but if you add a little sweetener it's like lemonade. (Malic acid, the acid found in most fruits, and in rhubarb, is responsible for the sour taste.)
 

[ThePerfectMelody]

Justinian,

   I do offer you all the consolation that I can muster. I know what you go through because I have gone through similar at 18, and still go through it now at 29: The hopelessness, anxiety, frustration, depression, and loneliness- I've known it all and more just as you have. One thing that you seem to have going for you is that despite these things, you've still been able to attract girls who want to be part of your life. I suggest that you give a girl a chance. In my experience, if she likes you, she will be very supportive. Having a supportive lover in your life in my experience makes things a million times better. Sure, it does take courage to open up about the issues. But looking back, the positives I've gotten out of taking the risk and opening up far outweigh the feelings of anxiety from having to do it. As I get older I find that it's true that you do end up regretting what you didn't do more than what you did. Much love to you my brother-in-arms.

Melody

[NeoV]

Plenty of us got this at a young age, I had it since 18 and it took off at 24 (27 now).

My improvements since it started have been remarkable. If it weren't for some lingering edema from the VED, I'd consider myself basically "cured", with more improvement coming out of nowhere again last week. That being said, the disease had about two years of worsening, where I felt I could do nothing about it. Looking back I now realize that I should have avoided all sexual activity at that time, or at least limited it to one time a week (no masturbation binges).

I've been in very dark places, and I know what your're going through. Feel free to hit me up on Skype, I'm online 24/7 on my phone. I've benefited so much already by talking to a member here around my age, do yourself a favor and don't hold back! PM any of us. That goes to all of you as well.

About Citrulline and Arginine, you'll have to try it for yourself, as Ursus stated, and I have in the past, the body down regulates the Nitric Oxide producing effect pretty fast. Even so it could help. I took a tip from alwaysreading and bought some Pine Bark Extract (pycogenol), and my erections have been perfectly solid since, I'd recommend it to anyone, in particular due to it's effect on arteries and vascular health. Penile artery problems were shown to be present in around 30% of Peyronie's suffers in the famous Iranian CoQ10 study. The disease really needs to be hit from all angles.

So far what has worked for me was manual stretching, which smoothed out my curve, and VED therapy for girth. But what worked for me might not work for others, at least the science behind both of those methods are sound (traction and VED). Finally I do have to say that in the last few weeks CoQ10 and Pine Bark extract are doing something, because once again my penis has seemed to have improved to a new level, hanging better, less hinging, better erections. Don't give up man there are options, even if someday it means an implant, those things are amazing. Try to take things slow, learn what you can and talk with us!

-V

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