Long-Term Peyronies Sufferer

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trixmegistis

Hello all. I am a sufferer of this Peyronies disease chronically, and did not know I had it until this week.

I have to start by sharing something deeply personal that occurred to me -- I was molested when I was somewhere around age 9.. and I believe this happened during those years, and I still have it, and my whole life while thinking my penis was a bit different (things like hourglass shape occurring while flaccid, some hypersensitivity, upward bend while erect, and a bend maybe 5-10 degrees to the left), I still thought it was just how my penis was naturally my entire life! I had always thought everyones leaned a bit in some direction.. I had no idea what I had gotten myself into and grew up thinking I was perfectly "healthy" physiologically.

I have struggled with ED and every so often slight pain when I orgasm, and it has been a psychological nightmare. I thought my ED was purely psychological my entire life, having horrible relationships because the people I would involve myself with felt I wasn't attracted to them due to my ED issues --

So now, nearly 15 years later (I'm 26 now), I'm in shock, horrified, terrified, depressed, and feel like I am castrated and immasculated now that I know what is going on -- that it wasn't purely psychological, that I have a physical condition, and that if it didn't clear up years ago, then my outlook for improvement is drastically lowered.

After exploring some of the popular options for treatment -- almost all being for fresh scar tissue and plaque that are non-invasive, I discovered the shocking surgery that is, I suppose, one of the only options with real hope. The thought of that option is tormenting my mind, especially since most other options are unlikely to help in my chronic form of the "disease"..

What would you guys recommend for someone in my position? Right now I am just getting as much Vitamin E in me as I can find, and haven't tried anything else. Does ED medication help you? How unusual are things like this to a partner? I really had to believe that my penis was as naturally as anyone elses my whole life, but have always had massive insecurity, do people think any of these minor curvature issues (like a potential girlfriend, etc) are normal to some degree? Or are they mostly shocked to see it? No one but my roommate who saw me naked ever said a thing like it to me, and I wish they had, maybe would have found out about this earlier.

Is there any non-surgical treatments for long-term conditions of Peyronies? I am desperate enough to run to the doctor and get surgery now that I know the source of all my years of dealing with this unknowingly, I just want this nightmare to be over, but I have not found many personal experiences of post-operation satisfaction that seemed, well, worth the risks.

I would also like to note that I have seen the doctor many times for physicals, I do not understand why the doctor would not have pointed this out himself? Do they not know about the condition either, or do they not tell you unless you are having issues that you express due to it? Makes no sense to me.  

Arabia

Welcome to the web site and for the detailed introduction which must have been difficult to write given all that you have been through.

You should try and find a urologist in your area who specializes in Peyronies in order to get on Pentox and low dose Cialis.

Read through the sections here on VED and traction as I think those treatments are your best hope for non-surgical improvements.  I'm just starting traction so can't give much advice but there are lots of people on here who can give you advice on how to use traction and VED safely.  It seems to me with either technique you need to go slow and low at first.  Read a lot first, then take some time away from the board, then come back and read again.  Then make some decisions on what to do.  You've got lots of time to experiment and surgery will be you last resort.

Good luck.


LWillisjr

I would encourage you to attempt to determine if your curve is really due to Peyronies or if it is congenital (born with it). The reason is that  it was fomr an treatments would be different. I know of some men who were born with terrible congenital curves.

It is possible that even you mentioned at a young age could have contributed to this. But I would also suggest that many of us cannot recall what our penis actually looked like at this age. Which is why I suggest you don't assume it is from an incident, but that you may have been born this way.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

Toronto34

Hi Trix,

I am sorry it sounds like you are going through a lot. In terms of treatments for Peyronies, I was just recently diagnosed myself and am in the acute phase so I can't speak to what's best for you, but I have found reading the forums very helpful for figuring out what are available and what works for other guys. Maybe look for people who have similar symptoms and who started treatment in the chronic phase.

Additionally, I think the fact that you have some childhood sexual trauma and are also dealing with the natural insecurities that comes about with Peyronies, you might want to look into therapy. I've found seeing a psychologist very helpful for a number of issues (even before my struggle with Peyronies began).

Finally, I should add that the range of what constitutes a "normal, attractive penis" (or whatever you want to call it) is pretty broad. I've talked to numerous female friends about this (even before Peyronies) and they've seen all kinds and don't share a view on what's best.

Immediately after my diagnoses I actually asked 2 of my exes about my penis and when I explained my symptoms (including a 15 degree upward bend & flaccid hourglassing) they both said, "That's it?" My point is that most women wouldn't bat an eye at a 5-10 degree bend to the left or even notice flaccid hourglassing. I definitely relate to the stress and insecurity these symptoms can cause, but don't think you need a perfect looking, perfect operating penis to attract a partner and have a good sex life.

Hope that helps and best of luck,

Toronto34

Jonbinspain

As L Willis says, know what you're dealing with before you attempt to treat it.

You say that you found out that you had Peyronies?  How?  Is that your own self diagnosis from what you've read?

If you have not seen a competent Urologist and received a confirmed diagnosis of your condition, make an appointment asap.  

trixmegistis

So, my main concerns are: ED (seems Cialis is the best option?) -- Hourglassing shape happening randomly (is there any way to reduce how often it does it)? I'm pee-shy, locker-room shy, and girl shy because of that more so than anything other issue caused by this.

The curving is less of a concern because it's more minor, and the other symptoms are minor or rare occurrances it seems like.

Should I wear tight fitting or loose fitting boxers, does either help?