Very rare form of penile torsion

[Hardworker9945]

I am a 34 year old male and since I was a kid I've had a very rare from of penile torsion that no doctor has been able to properly diagnose.

Here are my symptoms as best as I can describe them...  while flaccid my penis will literally twist and untwist along it's access from it's normal position of about 10-30 degrees rotated up to 90 degrees.  This happens constantly throughout the day. It happens most severely after urinating or a bowel movement. It also seems to happen more when i'm up and about rather then relaxed.

So basically my penis will be normal and then suddenly twist itself around on a spiral. While erect the penis stays at about a 30 degree angle and is not a problem at all.  This is a complete flaccid issue for me.

At age 18 I went to a urologist and he diagnosed me with penile torsion. What I didn't realize was he didn't fully understand the problem at hand.  He didn't realize that my penis was constantly twisting back and forth even tho I explained to him.  But being so young I might've not properly explained myself.

I ended up having surgery to correct the problem, but it didn't work, and caused extra problems for me like decreased sensitivity and some ED.  The constant twisting persisted. The doctor then sent me to multiple specialist in the NY city after I reexplained the problem to him.

The specialists I went to all told me they've never seen this before and they weren't comfortable trying to fix it and that I should live with it. Fast forward 10 years later and I went to see a few more specialists hoping that maybe advancements in medicine would be able to help diagnose the problem. But again the doctors told me they didn't know what they were dealing with.

As of now I live with this problem and try not to let it keep me down. But as you can imagine it is quite annoying, embarrassing and sometimes scary to live with. I sometimes think it might be some kind of pinched nerve or a muscle issue that's causing it to twist and untwist like this but I have no answers and can't find any literature online.

If anyone has ever heard of this or has any info would be greatly appreciated. I can also answer any questions as it can be confusing to explain.    

[melting]

Yes if it happens in certain positions during certain actions then there must be a correlation.
Urination and b movement are directly influencing the pelvic floor. Could be muscles or some other tissue, fascia..

There are medical ways to picture your insides. mrt etc. then you see if something is totally wrong and if you have the issue during the imagining of the machine you might see it.

Then you need someone who udnerstand the pelvic floor. maybe theraptist movement types, or yoga.

[LWillisjr]

Do you live in the Midwest? I wonder if this is something Dr. Levine would be familiar with.

[Hardworker9945]

I currently live in the NJ/NYC area. Is Dr. Levine a specialist?