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Old 03-06-2015, 05:24 PM  
John Super Doe
New Member
Join Date: Oct 2012
Posts: 3
Default you are not alone buddy :)

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 letīs keep sharing and hopefully we can find something that helps.

Stay strong.


Originally Posted by cosmos View Post
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
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