Originally Posted by DLNY

I have a question for all the guys:

Who has successfully tried to ignore the pain? Has anyone just done their best to put it out of their heads and learn to ignore it? Does anyone feel like when you're really busy, or absorbed in work, or even when just having fun you don't notice or feel the pain as much?

If the doctors are right, and this is "nothing," can we try to psych ourselves out by ignoring it and live a happier life even though the pain is still real and there?

Does anyone get what I mean?

Originally Posted by NB664

I don’t suffer from the sitting problem as such but I’ve suffered from the "penis rubbing against underwear” problem for years, I would describe it as a burning sensation made worse by the slightest friction such as walking, walking always seems to make it worse, some days are worse than others but it is always present to some degree. As regards when I’m sitting the discomfort comes from any slight pressure from my clothes.

For a long time I just put vaseline on the glans as a barrier but it was just so messy and didn’t seem to help much, I have since tried many emollients but none of them really make much difference.

As regards meds, I was on antibiotics on and off for years for acne rosacea and a skin specialist who I was seeing about the acne rosacea had a look at my glans problem referred me to a penile eczema specialist, not that there was much evidence of eczema just the usual slight redness but anyway he reckoned it was related to my overall acne rosacea/eczema problems.
The urologist I saw at the penile eczema specialist clinic said there was no infection but that my skin was just very sensitive (she did a skin sensitivity test) and to try a range of antihistamines which are often prescribed for skin allergies but I didn't notice much difference apart from them making me drowsy, she also prescribed an anaesthetic ointment to help as she put it "retrain the nerve endings" I’m not sure I gave them much of a chance of working, I just didn’t get along with either and my doctor who specialises in STDs and UTIs didn't seem impressed with the idea anyway and said we had reached a point where it just seems to be in my head.

I sometimes do a lot of walking even though that makes the discomfort much worse and I’ve noticed in the shower after my walks that the corona (ridge of the glans) looks very inflamed. As I am circumcised there is obviously no protection for that part.

There have been very short periods and I mean a day or two when it has felt almost normal, on a couple of occasions on sunny days at the start of summer I have walked with negligible discomfort and after each of two hernia operations it felt fine for several days afterwards, I put it down to the anaesthetic and the painkillers which I was on for about a week following each op but when replicating the meds the problem remained, I suppose it could have been heavy anaesthetic still in my body post-op or recovery pain distracting?

I wish there was just one urologist/medical practitioner on the planet who could say "yes, I’ve seen that before and I know what to do about it” what a relief that would be.

For the record I also had chickenpox as a child.

Since I wrote the above I found this article which fits my condition / symptoms and also mentions the possible Rosacea connection.** the title is "Male genital dysaesthesia" (unable to post links yet)

Originally Posted by DLNY

I find I'm in less pain during the summer mostly because of wearing shorts.

Originally Posted by cosmos

In the few weeks since i posted I am feeling about 30% better. The feeling of what I have come to learn is "allodynia" is better, though Im not pain free, Im functional. No where near a return of libido though. In my case, I wonder if it has been due to a skin tear where the frenulum and corona come together. This issues seemed way too small to explain my symptoms, less than half a dime size, but my theory is there is a nerve under that injury giving referred pain similar to pudendal nerve entrapment. Part of the reason I think this is because my pain is clearly on the underside AKA ventral of the shaft, not on the dorsal side. Im totally painless on the top half of the shaft. I can't understand how the pudendal nerve would spare the dorsal half of my shaft...

I have been tested for HSV 1 and 2. At 3 days after symptoms started, 2 weeks, 3.5 weeks and again at 6 weeks. Thats where I a now. All have been negative. But it can take over 12 weeks for people to turn positive. I really think that could be it.

I can't say much about the chicken pox theory, except to say that it falls in the category of idiopathic, AKA unknown. The rarity of our symptoms is hard to explain whatever it is.

Im just hoping with time, it gets better. My improvement also coincides with starting amitriptyline AKA elavil. Not sure if that is cause and effect yet or not. Pudendal nerve entrapment has also been going thru my head if i have pain related to sitting that gets worse by the end of the day, as my job involves a lot of sitting.

Will update when if I get better or know anything more.

cosmos

Originally Posted by Tony joe

I have read almost all post,I have the exact symptoms, my penis rubs against my underwears and it is very sore,it is ok in morning and get worse as day goes on.I contacted herpes 2 , ten months ago. I have been to 12 doctors had many herpes test they gave me wrong/worst one IGM , you need IGG or western blot.i got herpes from oral sex. At first penis burned for a few months now it s just so sensitive at the head when it rubs my underwear.I also had a vibrating sensation the whole time. I had one out break with a sore 5 months ago. This was nothing compared to the burning and vibrating and soreness I have felt for the last 10 months. Also sometimes my testicles ache. I have asked urologist and herpes specialist and they seem to have never heard of this yet I read about many people on the Internet that have same problem.i am willing to do anything go anywhere to solve this and get back to normal. If anyone can help I would really appreciate it. Was anybody able to solve this problem? Also I hate to be negitive but those that have these systoms need to be check for herpes and only except the western blot test.

Originally Posted by Tony joe

I have read almost all post,I have the exact symptoms, my penis rubs against my underwears and it is very sore,it is ok in morning and get worse as day goes on......I have asked urologist and herpes specialist and they seem to have never heard of this yet I read about many people on the Internet that have same problem.i am willing to do anything go anywhere to solve this and get back to normal. If anyone can help I would really appreciate it. Was anybody able to solve this problem?.

Originally Posted by NB664

Hi all

I would’ve responded sooner but I didn’t seem to get notification for the new posts and just happened to look in today.

I guess you know my story from reading my previous posts, I have seen 2 urologists and one dermatologist who referred me to a penile eczema specialist and I’ve been tested for pretty much everything.

As most of my self medication, which consisted mostly of emollients in an attempt to lessen the friction, never had much of an effect I have vastly reduced the application of these, that includes the Topricin, a homeopathic/herbal anti-inflammatory cream which I mentioned in my last post, I only tried a couple of applications and it just seemed to sting so I gave up on that.

So far the reduction in applications had made little noticeable difference so I may continue with that, I have just started my first long walks of the year so I’ll see how it goes.

I am not able able to post links yet but this is by far the best article I have ever read on the subject, you should find it by searching for:
“‘Vegas’ Dysesthesia: Understanding and Improving Management of Groin Dysesthesia” by Richard G. Fried, MD, PhD

Originally Posted by hiriser32

I have been to numerous MDs in the past for this condition and have had no real success in curing it. It kind of went away on its on many years ago and as of last week it is back. The area from the foreskin scar of the penis to the very tip is extremely hypersensitive. If nothing is touching it (if im naked) i do not know that there is a real issue, but as soon as i put underwear on, that problem starts. The problem is of course walking and doing anything active and the underwear that it rubs against. The more I do the worse if irritates. I realize this is an area that most people shy away from talking about, but I have no other options at this point. A Dermatologist that I saw many years ago and just saw again yesterday told me that he thought it to be nerve related, not skin. He suggested an MRI or for me to see a Neurologist and possibly have a nerve conduction study performed on me (read details online and it seems that that would be painful or impossible?) He also gave me a Rx for Amitryptilline 10 mg. Any feedback or ideas would be much appreciated. Thank you!