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Author Topic: Been living with Peyronies Disease all my adult life, need advice!!!  (Read 6439 times)

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Hoku

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Dear all, I need advice!

I am a 33 year old heterosexual, I have had Peyronies Disease all my adult life, although I did not really realize what was wrong until recently. Before I continue this I should add that I understand perfectly well that many of the people here have a far worse condition than I do, I simply want to know what people who have had similar condition to me have done or would do.

I think I was 15 when I suddenly woke up to find a terrifying bend on my penis. It bent roughly 70-80 degrees to the right, I had no idea what was going on, and wondered if this had something to do with puberty, I don't remember receiving any trauma to it, I do in fact strongly suspect that this is genetic, and that my father has the same condition, I have no prove but his behaviour makes me suspect it.

The bend eventually partially fixed itself, and my penis ended up being bent around 30/40 degrees to the left. This happened sometime in my early 16th year. However a few months later I noticed that the top of the penis; the glans became soft and it has remained like that ever since. The shaft can get as hard as rock but the glans cant, at best it can get like jelly but the blood leaks out soon.

I was for the longest time to ashamed of this to go to a doctor, eventually I went around and got Viagra but it was of no use.

Glans being as soft as it is, reaching orgasm can be difficult, and I have often had to fake it, I have to squeeze it more than is normal during masturbation. This condition has for as long as I can remember made me avoid sexual activity and made my life generally miserable. Sex has had the tendency to be somewhat stressful, both for me and my partners. In the last year I have resulted to visit prostitutes, they don’t ask questions, so I have been more able to relax, I have always managed to finish with them, but this is simply because I don’t care if they like it or not I cannot of course not care about that with women normally. I should probably emphasise that I am a Caucasian living in an Asian country, I have had more of a problem to ejaculate with Western women for biological reasons. I am considered to be very good looking but my condition made me choose a reclusive lifestyle for the most of my life. I have only been in 2 serious relationships in my life, the first one was ruined partially because of my condition, the second one was with a citizen of a 3rd world country, and for financial and social status reasons, I don’t think it can count as entirely “normal.” (sorry for the lack of PC)  The latter girl was above average in looks, and in fact the only relationship in my life I would call reasonably healthy, although I do know she was not entirely satisfied with the sex. The relationship did give me an ego boost and I started socializing more, I am now, (or was at least until recently) considered good looking, charismatic and intelligent, I am liked by men and women alike, however my condition has historically made me look for partners considered far less attractive than I am, a few months ago I got dumped by a girl (who was by all accounts unattractive), the reason being my condition. I seriously panicked and began changing my lifestyle (quit smoking, cutting down on alcohol etc) thinking my unhealthy lifestyle was the source of all this. Unfortunately people have started talking (I know this for a fact) and it seems that many of my friends (or former friends) suspect something is wrong. I would, or should in any case be surrounded by women if everything was normal. I went online and finally understood what was a matter (Peyronies Disease) I went to two urologists who confirmed that it was, I started taking vitamin E but it did nothing for me, since I have had this for half my life both doctors said that surgery was the only thing likely to work, I do however consider it too risky.

The 30-40 degree angle does not bother me all that much, it has not stopped women from meeting me again, it’s the softness of the top that has.

So what on earth can I do? I did consider talking to my last sex partner about this, but she disappeared to fast. The longer I delay finding a gf the longer the suspicion will linger on, If I find myself an unattractive partner too naive to understand the situation (and thus someone I can hardly respect) people will also suspect something is wrong. I cannot (and never have until that episode with the girl who made me panic) seek a women within my social circle, for the fear that this might leak out. Like I said I know people are currently talking.

I am tired of that embarrassment that often comes after sex if I don’t finish, tired of women trying too hard to please me for a while, then realize that the problem is me, and leave, tired of seeing people look at me thinking why girls around me (the few times I have girls around me) are not more attractive
, and when women are not around me, then why not?

I used to live the life of a sort of a recluse to people would think that my lack of social skills where the reason I was more or less single, however since last year when I moved to my current place I have been reaching out to people, a lack of social skills, unattractiveness, can not explain why I am single. I have considered moving away, changing friends and taking up more of an isolated lifestyle again, but it is sort of difficult to unlearn social skills, and since everybody rather likes to be liked than disliked, it is hard to resist talking to people.

A woman I meet outside my circle will not stay with me for sex, a woman within my circle might make the rumors to escalate (not having a women in my circle also causes them to escalate).

I have consider suicide (and I still leave that possibility open in the future) but that would only confirm the rumours so I will not do that for a while.

I have also considered disappearing, changing my life entirely, although that will be difficult, and what to do after that remains an unanswered question.

I have even considered having an accident, that would leave me chained to a wheelchair or to scar my face.

I have no faith in that this condition can be cured, I tried Vitamin E for a few weeks it did nothing. I have had this condition half my life, I don’t think it is going to go away by now, if I choose to live I will probably have to live with it. (if anyone has however had a similar situation for over a decade and fixed it, by all means let me know) It is harder and harder to explain to people why I am single. Finding a mate that (were everything normal) would suit me will be more or less impossible with things being like they are. And I do not wish to reach old age if I have to be single, and/or miserable.

I would be interested in hearing both from men and women, are there any men who have gotten this condition early on in their lives? Or/and while being single, did they find mates, inside or outside their social circle? What was the implication for sex life? Did they discuss this with partners, and if so, when? (I, like I said, did not know what exactly was wrong with me until recently, I used to blame it on smoking and drinking, and have never discussed this with women.) Have they had many women who left them after hearing about this or understanding this? All sorts of comments from women would also be interesting.

And please don’t give me BS on “how sex is not that important, I am experienced enough to know that it isn’t true and uplifting stories that aren’t true are not helpful.
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newguy

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Re: Been living with Peyronies Disease all my adult life, need advice!!!
« Reply #1 on: June 19, 2011, 07:03:12 PM »

A very detailed and honest contribution. Concentrating on the practical side of things I would say that Vitamin E isn't useful, but some treatments are. Starting on pentoxifylline and coq10 could be useful for you, as well as embarking on a mechanical treatment (traction or VED). Also a recent cialis study showed that it may help with scarring. That combined with it's ability to give strong erections may also been that its a valuable asset.  You do mention though that you had no joy with viagra so weather a different ED drug would help is unknown. I still think that a multi pronged approach could be useful for you though, and has the potential to reduce curvature and possibly improve ED symptoms. You should stick with a strategy for six months minimum and see where you are at the end of that. New treatments coming down the pipeline like Xiafles might help too.
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Hoku

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Re: Been living with Peyronies Disease all my adult life, need advice!!!
« Reply #2 on: June 19, 2011, 07:47:05 PM »

Thanks for the advice newguy, will definitely try the drugs you mentioned.
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sexdoc

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Re: Been living with Peyronies Disease all my adult life, need advice!!!
« Reply #3 on: August 12, 2014, 09:42:57 PM »

There are new options for you. You should first see an andrologist, Urologist in general might not know all the new available options. Surgery and CCH are options that have been successful in many people. Have you tried these?
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NeoV

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Re: Been living with Peyronies Disease all my adult life, need advice!!!
« Reply #4 on: August 13, 2014, 01:03:26 AM »

Ok here we go,

I need to first say much like others have said, you're only having taken Vitamin E is a tragedy.

The first line of treatment is Pentox, low dose Cialis, CoQ10 300mg, Acetyl-L-Carnitine, VED therapy and Traction. After only one session of VED therapy I had major improvement, and manually stretching my penis (in place of traction) nearly cured me of my symptoms. There are other treatments as well, some more proven to help than others, such as Xiaflex, Priapus shots, etc. There is so much hope for you to improve your condition.

If all else fails there are penile implants, which are not something to joke about. These things work miraculously.

I am fairly confident you will have improvement after trying some new treatments and staying consistent and committed.
I can empathize with you because I also am a westerner living in Asia (Tokyo), and my father also has the disease. It also has made me very depressed over the years, since I've had symptoms since 18, started to get bad at 24, and am now 27. I hit an all time low last year with Peyronie's and with heartbreak that left me devastated, but since then have came a long way and as I stated, I have very little Peyronie's symptoms left at all.

If you are good looking, you have no excuse not to pick up chicks! Especially in Asia. Your problem is not your soft glans it's your confidence level, and I think you know this. Another member here also lives in Tokyo, and we have become good friends. Nothing has stopped him or me from having good sex with very attractive women (if not the best looking women here ; )). There's no reason why you aren't good enough to sleep with any woman you like even if your penis is a crooked monstrosity.

Your Peyronie's should have improvement with treatments, and your soft glans I assume is an entirely different issue. I have read about it before, and I think you may want to try to diagnose that separately. The big advice you're going to get here is to SEE A PEYRONIE'S SPECIALIST!
As you've learned by now regular urologists know nothing about this disease. See a specialist even if it means going out of the country. Make sure you also voice your concerns about the soft glans. Do your googling.

One of the most important things with any sexual problem is taking care of your inner issues. It's the hardest thing to do, but Peyronie's forces us to do it. We have to learn how to re-generate positive emotions from ourselves from a weakened state. I've been working on this daily and talking to as many women as possible to elevate my emotions. I tell girls about my Peyronie's, and they actually end up liking me MORE! It's just the silly truth about women and love in general.

Listen, girl's only care about your penis to the extent that you do. If you are bothered by something, they will be more so, because they are evolutionary programmed to be hyper responsive to a man's emotional response to his self worth!! Commit to your penis, and let her know, and she will find it endearing and adore you for it.

You would not believe what is achievable with a "messed up dick" in life and with women. I'm telling you a girl will love your penis over another mans penis if he is insecure about his. This is the whole inner game, that is reflected from regular social dynamics and into sex as well! You are the one who has to generate your own positive emotions. Once you get this, and really realize there is no alternative, you will become free and obtain the kind of love you had fought so hard to maintain until now.

I simply cannot emphasize this enough. I will literally point out where my penis bends to a girl and show her what's going on. My pal here TokyoTime sends his girlfriend pictures of him wearing his extender, making jokes about himself, she f'^+'ing LOVES IT!

Learn to let go man, tell your friends, tell girls, and laugh at yourself. If your friends suck, find new friends. Talk to random girls on the street, you don't need prostitutes. We all have serious traumas and pain from our pasts, even recent pasts. Let it go and commit to this with us.

I know you can't get over your soft glans, I have some other issues as well with my penis, but they are so insignificant.  Our penises are like a warrior's sword, scarred up, gashed, bent from battle. Be proud of it, and be proud of yourself for even making it this far, you're a warrior, and do you really think other guys don't have sexual hangups?

Acceptance and commitment are key. Learn to generate your own positive emotions if only because you have no choice. Seek treatment for Peyronie's, see a specialist and research the hell out of soft glans. Talk to as many new people and women as possible, and try sharing your malady with others, even strangers.

Your penis is the barometer of your life, now it's time to commit to straightening it out and ridding yourself of old scars and traumas. We can do this, and as long as you stay committed your going to get better as many of us have. PM any of us, add me up on Skype I'm on 24/7, there's a lot of hope for you at your age and with your lack of treatment history.


-V

james1947

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Re: Been living with Peyronies Disease all my adult life, need advice!!!
« Reply #5 on: August 13, 2014, 05:11:20 AM »

sexdoc

Can you give us some more information regarding your connection to Peyronies?

James
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