Hi Chem1,

Thank you for your post. I may have the same affliction as you and I've had it for years. I also had Chickenpox as a child and now wonder if this is related. A dermatologist tried to use liquid nitrogen on the area and later a urologist performed sugary to remove the skin around that area to promote nerve regrowth but neither was effective. Have you learned anything since your last post or tried any treatments?

Welcome Sylvester1.

Healthy middle aged male and have the exact same problem. At this point it has been 5 weeks. At first noticed what could be sort of friction burn type pain over a few days with sexual activity. Then one day Im sitting on the couch and get a severe burning pain on the underside of my penis. I have also had some burning and redness of the anterior portion of my scrotum (not sure if scrotal pain could be due to steroid rx that would have touched this area). It has never gone away in 5 weeks. It comes and goes, and clearly seems to get worse as the day goes on. I have also had some dysuria at times, particularly at the end of my urine stream. I have also sometimes have dribbling and will wet myself after urinating- much more than the usual "last drop ends up in your pants". I will usually sit to pee and spend a minute on the toilet before I get up. But mostly skin/nerve pain, and most of the time no dysuria.

The area affected seems to be from the circumcision scar to the head only on the underside of the penis. HSV 1 and 2 negative at 2 and 3.5 weeks. No blisters or discharge. There has never been any visible issue, except for some redness along the frenulum that is not impressive. Ive been to see 3 dermatologists and 3 urologists. All of them are clueless, except the last dermatologist that suggested I might have the male form of male vulvodynia, aka pudendal nerve entrapment, aka genital dysesthesia. I believe I have some sort of this diagnosis.

The pain is clearly a hyperesthesia. The skin is super sensitive to touch and from day one, what I have wanted to do is to have nothing touch my penis underside from the circumcision line to the head. My preferred method is to put a pillow on either side of myself and pull sheet/covers over so that I'm covered with nothing touching my penis. Walking around with my penis rubbing my scrotum/clothing can be excruciating. It can also be quite painful just sitting still with nothing touching it. Like i said above, gets worse as day goes on, starts as 2/10 in morning, 10/10 by evening. But I cannot say it comes and goes with sitting and then standing up. This is just there.

My sexual function is intact. I have had sex twice successfully, primarily to see if it would help. (It did not) But with the pain, I have no interest, and I couldn't imagine wanting to masturbate. Prior to the first day of symptoms, I was your typical high sex drive middle aged male.

I was intially diagnosed with contact dermatitis, and tried a mild steroid cream and zinc oxide with miconazole (triple paste). One week of this had no effect whatsoever so i stopped it. One week after stopping this, I tried rubbing alcohol on the whole area, just once. This made the area I had been treating with the creams turn into an ugly rash. This cleared up over a week, with no change in symptoms before, during or after these local treatments.

Other rx Ive tried to no avail: short course keflex, 4 weeks doxycycline, valtrex x 3 weeks, mobic x 3 weeks, 3 days prednisone (stopped for worry it could be HSV), one dose diflucan. Nothing has touched it. Urinalysis and STD screen negative x 2, two weeks apart. I have not had a camera put up my urethra, no urologist wants to do this.

I have a spinal MRI scheduled soon. I saw an othopaedic md and basically insisted on an mri. He was clueless. Im hoping to get a good look at my sacral nerve roots and pudendal nerve area.

The way my symptoms get worse during the day make me think this could be pudendal neuralgia. I have had sacro-ileal soreness/inflammation for 20 years. But its never been a serious issue. Just the place I wish anyone doing a massage would spend most of their time.

Clearly this is nerve related. For a while I thought I had a friction injury.

But given the lack of visible issues, and the lack of point tenderness, while having severe pain, I don't think it is a skin friction problem. I am thinking it could be:
1. Pudendal neuralgia/entrapment
2. Nerve damage from over stretched skin that suddenly got worse for some reason
3. Soft tissue damage under skin in the spongiousum, irritating or involving my urethra.
3. My herpes will turn positive (it could take a few months for HSV 1 or 2 Ab to turn positive) and this is herpes pain
4. Whatever the hell genital dysesthesia is.

In any case, my life has been severely effected. Anxiety, ~10 lb wt loss, dark circles under my eyes, insomnia and depression. Im not sure I will be able to keep working. Im just glad to see there are others out there who have had the same thing, so I know Im not crazy. I have never had any pain issues/fibromyalgia. In fact prior to this, I have been a competitive 40 something year old male athlete with no medical issues whatsoever.

Im going to try neurontin and a SSRI, but I'm not optimistic. The best chance of improvement would seem to be time. And from posts Ive seen that doesn't look too good either

I find your theory very interesting Chem1, I would like to ask you if you are certain you havent got Herpes I or II, because that may rule out Herpes as the only cause of the pain we are all feeling. I also had Chickenpox when I was a Kid so you may be on the right track.

Altough your post is a bit old it would be fanstastic to hear from you regarding any advance you may have on your theory and how are you doing with your treatment if any.

It´s been about three years since this condition started from me and would like to know if anyone of you have made progress and how.

Thank you Chem1 and thank you all.

Hi Cosmos,

I can really relate to how you are feeling right now, you will get through it . I have been myself with this issue for almost 3 years, sometimes I have good days some times is really painful but here we are. Chem1 has published an interesting theory, I think we all here had chickenpox when we were kids and it could be related to that. That virus is from the same family as herpes and perhaps our pudendal nerve is being affected somehow by it. I went to see about five doctors, one of them actually put a camera in my urethra to check everything inside, it seemed fine except for a very slight prostate enlargement. I definitely think is virus related, but let´s keep sharing and hopefully we can find something that helps.

Stay strong.

J.S.D.

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

Cosmos and other guys who think they have Pudendal Neuraligia,

The pain I have is from clothing (even the softest of underwear) rubbing up against the penis from the circumcision scar line to the head of the penis - more so on the underside of the penis (maybe because that's the area that rubs against the underwear because of the way the penis hangs naturally).

I also have a lot of pain from sitting and have had it for years. The pain is definitely pelvic pain and have had physical therapy for it but it hasn't helped much. Then two years ago this new penis pain from underwear rubbing against it started to happen. It's a nightmare - not being able to sit without pain and not being able to walk without penis rubbing against underwear pain. I've done it all - MRIs, every possible medication, every possible specialist; I won't even waste your time with the list. One interesting MRI done by Hospital for Special Surgery (in NYC and super high rated hospital) ruled out pudendal nerve entrapment. However, just because entrapment has been ruled out does not mean pudendal neuralgia does not exist.

Cosmos - how bad is the pain from sitting and exactly where is your pain when sitting? Any other guys have these two problems of sitting pain and penis rubbing against underwear pain (between circumcision scar line and head of penis) at the same time? Would love to hear from you all!

We can't rely on Doctors alone. We need to help each other figure these things out.

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)

NB664, I sometimes have similar experiences to yours though I am not circumcised (I don't know if this is significant).

I have found that, ahem, adjusting myself, usually works.

I had a chat to my GP about this and, after a genital examination, he was not concerned in the slightest.

Ok, so I must admit I was pretty bummed out that my post from April 2015 got no reply until just a few days ago. I'm so alone with this! Thank you for the recent posts.

Ok, so I'm maybe 50% better than I was when I posted in April. Sometime in early June, I decided to try something daring. There was this tiny little raised spot in the circumcision mark "band" on the underside of the penis that brought about a good portion of the pain when rubbing against underwear. Imagine something about the size of the lead side of a pencil that needs to be sharpened - what that pencil tip looks like when it's really dull and needs sharpening. It was about that size. I had pointed this out to the doctors who told me it looked normal. In fact, it looked like a few other smaller spots in that circumcision band - but none of those other spots were causing any pain. So, I came up with an idea all on my own and took a big leap of faith, I used my two thumbnails and squeezed the hell out of that tiny little spot. Yes, it hurt!! And for about 2-3 weeks after it really hurt - making me sorta sorry I had done it because that tiny area was so sore, however it was a different pain. After three weeks, the soreness from squeezing it disappeared, and that little spot stopped bothering me all together when rubbed against underwear.

There are things called neuromas (not the foot kind). Basically I think this area could have been a neuroma issue because my penis had had slight cuts around that area from bad oral sex just prior to this hell on earth rubbing underwear issue started. I believe that by squeezing the hell out of this site, I killed the nerve(s) firing from it brought on from the underwear friction. I don't know if this was just lucky on my part that I got better from it. I don't know if this is a good idea to try for anyone else. I'm just telling you all my story for your information.

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