Hey man, I have been dealing with the exact same problem. I show negative on every single test I take for infection yet have been dealing with this for what seems like ages. My life feels so ruined and hopeless now. I barely can get through the days now since I long for how I used to feel.
How long did it take you to feel like you were back to "normal?" I am just over the one year mark and the pain was intense and excruciating the first few months. I am still in discomfort/pain at times but it is tolerable and un noticeable at times. I have zero trust in doctors because of this issue since I have gone to so many that say it is in my head. I hate to say it but I almost did myself in for that reason... I was reaching out for help and all they kept doing was telling me I'm crazy and that nothing is wrong with me.
So anyways, how are you doing now? Obviously you must have some type of issue still going on or you wouldn't be on the internet perusing others with a similar problem. Have you taken any std tests? HSV 1/2? I am so certain my issues are Herpes related even though I show negative on the tests. The pain is perfectly explained through nerve issues.
What do you guys think?
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Originally Posted by BigDaddy
Stinging and sensitivity so bad at one point I had to wrap my penis in gauze to prevent it from touching anything. It would come and go. Definitely nerve pain. It sometimes hurt in the scrutom area too. An urologist gave me pills that turned my urine blue. Can't recall the name. It helped a lot. However, soon after one episode, I developed an all over PN. Probably unrelated but who knows. The penis problem went away on it's own eventually.
All tests were negative so some of my Drs thought it was in my head. I went to three different urologists, including one at Mayo. No real help. The Mayo one said my weight was the problem. I was pressing on my testicles when I sat and that was causing the symptoms. Personally, I think urologists, because they are all surgeons, are uninterested in any problem that does not involve surgery. That's my opinion and the unsolicited opinion of my internist. I hate to be so negative about Drs, but the truth is they know a lot less than they will admit. That is particularly true of Neurologists when it comes to understanding pain and how devastating it can be. I guess they see so many people in pain that they become numb to it and their patients.
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