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Avatar universal

Unique symptoms / No answers

I have had sore and extremely sensitive skin on the underside of my penis and sensitive hair follicules on my scrotum. I've had this for 4+ years now. The only visible symptoms are slight redness on the head and underside of the penis but no visible sores or blisters. The sensitivity is so extreme that clothes touching my genital area causes extreme discomfort and doing normal activities are quite limited.

I went to the VA and had a blood test for HIV and Herpes antibodies ( Both type one and type 2 ) and the test came back negative for both. I saw two urologists and the first said I might have molliscum contagium because of the pronounced hair follicules. The second urologist said that was incorrect as they were just normal subaceous glans. I went to a dermatologist and he said he had no idea what the problem could be.

I guess my question is... where do I go from here as my life has been pretty miserable for the last few years.

Any help would be appreciated.
10 Responses
101028 tn?1419606604
This isn't herpes. You should continue following up on it with a dermatologist to try to figure out what is going on.

grace
Avatar universal
Thanks for the input Grace. Believe me I've tried everything as far as changing soaps, types of underware, diet, etc. etc. so I've kind of ruled out external irritants that would lead me to dermatology as the answer ( But I certainly could be wrong ).

But what really puzzles me is all the information I'm reading that says you can have Herpes and not have any visible symptoms for years if not decades. Is my wild youth catching up with me decades later for some reason?

So, if I can have herpes with no symptoms then why is it always assumed that blisters and open sores, etc. are necessary for a positive id for herpes. I've also read on many reputable web sites that the testing for herpes antibodies is somewhat useless unless you're having an active outbreak.

So I guess I can keep going to doctor after doctor but that sure can get expensive and after having seen three already I'm kinda suspicous of their qualifications.

But thanks again for the advise. Any input is much appreciated.
Avatar universal
Plain and simple, Herpes does NOT just hang around for the length of time you have had this. Herpes comes occasionally and then leaves. You do NOT have herpes. I would definitely seek out a REAL GOOD Urologist and have this checked out!! You have something going on there and it seems like you need someone who is really good in this area to come up with a diagnosis. Have you been checked for Prostatis?
101028 tn?1419606604
The herpes blood tests are also very dependable. They do not rely on having active symptoms at the time or recently in order for a herpes infection to be reflected on them.  

As slacker said - herpes won't stick around this long either causing these sorts of symptoms this frequently without obvious breaks in between.  It's time to move past herpes as a potential cause.

At this point having pain for 4 years means not only do you need to find out what is causing your symptoms but you also have to break the pain cycle which is oftentimes easier said than done.  Definitely something worth talking about with whatever provider you continue following up on this with.  

grace
Avatar universal
Thanks all for the feedback. I guess the best thing is to go to urologist number three.

I doubt it's Prostatitis as the symptoms for that don't match mine.

Here's what the Mayo Clinic says about Prostatitis. "Prostatitis can cause a variety of symptoms, including a frequent and urgent need to urinate and pain or burning when urinating — often accompanied by pelvic, groin or low back pain."

My pain is basically on the skin. No other symptoms except redness and a couple of tiny red spots about the size of the head of a pin. Had small blisters after oral with my wife but that was the first time that had happened in the past 4 or 5 years of having the skin sensitivity problem.

Thanks again.
Avatar universal
You're in the throes of a chronic pain state that is probably psychologically based. The symptom that jumped out at me in defining this is that your skin can "barely touch" anything without causing you pain. There is no physiological disorder that causes this.

You don't need a urologist at this point. Your best bet is probably a neurologist who specializes in chronic pain or who can at least educate you about it, because you've got an anxiety-driven disorder in spades. Why that never occurred to you is anybody's guess. Most probably, denial plays into this aspect of not wanting to see it as psychological. Because once you get out of denial, you have to address the underlying psychological issue, and that could be painful. Clearly, the genital focus plays a role somehow, and I'd say it's probably guilt about sexuality, or something of that sort, but it could be anything.

The doctor shopping with no "answers" is another giveaway. The other one is that this has gone on for years. Clearly, you are fine and functional in many ways, which also indicates an underlying psychological basis  for your "disorder."

What you probably need is antidepressant medication, which has been shown to be useful in certain chronic pain states. I'd hit a neurologist or a psychiatrist next. The urologist won't be able to help you.
Avatar universal
I find it amazing to find someone so brilliant as you on this forum. To be able to dismiss my problem as my being psychological in nature without knowing anything about me or my problem other then my listing of a few symptoms is incredable. Bravo.

Avatar universal
Actually, I'm not "dismissing" your problem as psychological. I give just as much credence to somatoform conditions as I would to physiological conditions. It's just that most people are unwilling to accept a psychological basis for their symptoms, when in fact somatoform pain is quite common and happens all the time.

Sorry, but your symptoms scream somatoform disorder: 1) you've already ruled out environmental irritants, although I suspect it could be a possible dermatologic condition, but I doubt any derm condition would have lasted as long as you claim to have symptoms; 2) you've been out doctor shopping, and you no longer trust the "credentials" of the practitioners you saw (this is a common complaint of somatoforms, in case you are wondering--questioning the docs involved); 3) you have pain sensations when anything even comes within a hair's breadth of your skin and can't stand having anything touch the skin there (sorry, but no physiologic condition would cause this); and, 4)  you continue to search out anatomical/physiologic answers for your condition, although numerous docs haven't been able to give you answers.

I could add a fifth and say you seem fixated on herpes, even though nothing about your symptoms is indicative of herpes. Actually, I could add a sixth and mention that your absolute certainty that this isn't psychological is also common among the somatoforms, but we don't even have to go there. The original 4 issues speak for it themselves.

Sorry, but I stand by my opinions. And that's all they are. You come on a forum, you gets your opinions. Take it or leave it. Grace actually alluded to it in her post ("stop the pain cycle"), and as I stated in my original post, some antidepressant meds can go a long way to stopping a chronic pain state, which is what you probably have. And that's not physiologic in origin. Sorry.

Avatar universal
Actually I'm not rejecting the possibility that it's psychological. I'm just saying that I had a very good sex life with my wife of 15 years and enjoy sports, and many outdoor activities that now are limited.

I have no emotional problems I'm aware of and have many more symptoms then the few I listed. Just didn't want to bore everyone to tears with all the details.

Here are a few details that lead me to the viral path.

Years ago I had a small red spot appear on my penis that burned and lasted for a number of days before going away but after a few months it would always return again with a burning sensation. It was minor and I dismissed it.

My symptoms of tender skin on penis and hair follicle on testes increase and decrease in intensity over time but never fully go away.

I had bright red areas on the head of my penis and on the side as well ( No blisters just redness) that disappeared after several days. The head of my penis is still somwhat red. It never totally went away.

The two urologists at the VA that I saw had conflicting opinions. One said I might have Molliscum Contagium as he thumbed through a medical book looking at pictures... the other said no way... just normal hair follicles.

So you see my suspicion of the doctors I saw.

The dermatologist said he had no idea what the problem was and maybe I should see a neurologist. I have yet to do this.

As a footnote, I had an accident while cutting a tree down in the yard where it hit me pretty hard on my pelvic bone but sorness went away in a few days or a week. So there's small possibility it's neurological except for the fact that that was after I had the small red spot with burning sensation.

By the way I'm not in extreme phsical pain just uncomfortable doing any physical activities due to the sensitivity I've described.

I was just hoping to find someone, anyone with similar symptoms on this forum in hopes that it might give me a clue as to what action to take next.

And your right... I took your remarks too personally.

Thanks for your input even though I disagree.
Avatar universal
After reading your last posting, I would say it is some sort of yeast or fungus infection! Next time you get this put some Cortizone Cream on it and I bet you in a few days you will see an improvement. I sometimes get this same thing you are talking about and my dermatologist just told me to put some Cortizone on it and it will improve and he was right.
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