Penile pain, burning and itching genitals

[confused1234]

I am a 28 year old male. The symptoms I am about to describe began suddenly around August 2005. At first they were chronic; lasting all the time for about 2 weeks, after which I would be symptom free for a month or so. Gradually over time, the period in which I sufferred the symptoms lengthened and the period for which I was symptom free shortnened, to the point where I would say for the last 9 months I have sufferred these symptoms 24 hours a day, 7 days a week.

My groin area constantly feels "clammy" and sticky, much like you might feel after a long run. My genitals are constantly itchy in various places on my penis, testicles and pubic area. When I sit down, I experience a burning / prickling feeling in my groin, buttocks and thighs. The feeling is constant but is not generally felt when standing up or lying down. Minimal alleviation from the burning feeling is gained if I sit on a donut shaped cushion, but it does not help much. I also experience sharp stabbing pains in my penis from time to time, which was in fact the very first symptom I felt when this all started happening.

More recently now I do not seem to have the same pressure when urinating and I can't seem to squeeze everything out like I used to. No matter how much I shake afterwards, a little more urine always seems to drip into my pants afterwards.

I saw a urologist very early on in the picture; he performed a cystoscopy and prostatic massage which did not show any abnormal results, however it was likely that when he performed this it was in between times where I was sufferring symptoms. I also took a couple of courses of Ciprofloxacin which did not help at all. I have also been checked, re-checked and cleared on any STDs. I should also mention that there are no visual symptoms; sores or rash etc.

I have seen a neurologist who has tested me to the limits of his field of expertise, including MRI, nerve conduction studies, a lumbar puncture and various blood tests. He was unable to find a neurological reason for my symptoms.

I am now going to seek a second opinion from a urologist given the progression of my symptoms over time. In the mean time, if anyone can relate to these symptoms and offer some kind of advice or guidance that would be much appreciated. I am sufferring from this 24 hours a day 7 days a week and it is destroying my quality of life. The most frustrating thing is that as yet no one has been able to give me a definitive diagnosis of what this is.

Please help

[larry123456]

My proposed link to fibromyalgia was accidental and anecdotal.  One of the symptoms I had with HSV1 was that it felt like the back of my right calf was constantly sunburned.  Since I had no diagnosis yet I began to search around for what could cause it.  I kept popping up on fibromyalgia forums and about 3-4 pages in to the discussion someone would mention herpes, and a whole lot of people would reply, "I never thought to link them, but I have that too".

It's not scientific by any means, but circumstantially it holds water.  And basically what I was saying is that fibromyalgia may be a symptom of herpes for some people, one in the same, not that the two are linked.

[lovemistake]

Thanks very much for this update Larry123456, you've encouraged my ongoing daily research to take an alternative route.  Instead of focusing on nerve damage, I've been looking more at fibromyalgia.  Since you mentioned the fibromyalgia link, I have been reading about that and it matches some of my symptoms, especially extreme tiredness, muscle weakness, especially in the legs and lower back.

May I ask what caused you to suspect a link with fibromyalgia?  I think you may be on the right track, since new evidence seems to show that fibromyalgia is treatable with valacyclovir and other herpes antivirals.  I read somewhere that there is a US doctor who has found patients with high herpes viral titers, tend to have increased fibromyalgia symptoms.  This concerns me, because during the year that I was being repeatedly exposed to HSV, I believe it has increased my viral count.

Is there also a link between fibromyalgia and CPPS/prostatitis, I wonder?

I think it's worth mentioning, from 2012 onwards I was treated for CPPS (Chronic Pelvic Pain Syndrome, also known as Prostatitis and Prostatodynia) by a urologist.  He immediately jumped onto the CPPS theory, despite my HSV antibody diagnosis and a previous doctor's claim in Thailand that herpes can cause nerve damage, and he began to carry out internal trigger-point therapy inside the pelvic floor.  He stated that nerve damage from herpes was "far fetched".  His treatment worked for a few days and the relief was tremendous.  However, after a short while, the benefit was lost.  He carried on with the regular treatment but it was in vain and became a waste of money.  However, I can see that possibly what happened is that he affected the fibromyalgia symptoms by pressing the pelvic floor muscle.  His theory was that the pelvic floor muscle was contracted, knotted and with trigger-points and as a result, was stretching the penile nerves, causing various pain and even inflammation on the skin.  In the end, his theory was incorrect, as my symptoms are mediated slightly by taking herpes antivirals.

Incidentally, I have more or less all of your symptoms, plus a whole lot more too (listed in my post of 1-Mar).  But whereas you mention that your symptoms have resolved, mine have been ongoing, and in fact even getting worse over time.  I'm happy for you though, that you've seen a full recovery from it.

In case it's of use to anyone, I have been exploring the possibility of having ozone treatment from a specialist; a technique called autohemotherapy.  It involves taking small amounts of blood, infusing it with ozone and returning it to the patient.  It is said to kill viruses and bacteria, including herpes.

Another alternative is the electrotherapy technique, put forward by the late Dr. Robert Beck (see www.youtube.com/watch?v=lDriQenJYhg) which sounds very promising too.  I feel that I need to get my viral count reduced, because the pain is just unbearable and I hardly ever get a good day now.  It would be good for those who have posted on this forum in the past, to give an update on their condition.

[larry123456]

It's been over 2 years from infection for me and HSV1 is hardly on my mind anymore as it is active so infrequently, but this is what I remember of symptoms.

* Weird, irritated, burning skin that seems to move around my boxer shorts area.
* Feeling like someone had taken sandpaper to my skin and rubbed it off.
* Patchy redness that appears for no reason and then disappears just as quickly.
* Tiny, and I mean very tiny, like touching a ball point pen to your skin, single red fluid filled spot or two that last for a day and then fade and disappear without changing (that's what swabbed positive)
* Very sore lower back
* lost 10 lbs in less than a week at infection (part of if was probably stress)
* Sore neck
* White tongue
* Feeling like my genitals are constantly cold and wet.
* Low-level genital irritation.
* Itchy butt.
* Occasional peeling skin after redness
* Dull cramping feeling in my inner thighs.
* Sunburned feeling on my calf. Mostly on the right side.
* Numb toes. Mostly all on the right side.

Symptoms I never had:
* Flu-like symptoms
* Blisters
* Any sort of erectile dysfunction


None of those symptoms were present before HSV1 and all came immediately after HSV1 infection.   I see correlation when you look at forums for fibromyalgia, many sufferers of something else also mention having herpes with those symptoms. I probably had more symptoms, but it's been over 2 years.

Here's an interesting article for you.

http://chronicfatigue.about.com/b/2012/09/12/is-herpes-virus-connected-to-fibromyalgia.htm

[lovemistake]

Hi Larry, I’ve been trying to find the time to write back to you since you replied to my post.

I have been suffering for some years, have been misdiagnosed and really going around in circles.  It seems to me that HSV is not well understood by the medical profession.  There is a well-known doctor on one of the forums, called Hunter Hansfield.  I noticed that whenever someone reports symptoms similar to those in this thread and is deeply concerned that it might be HSV, his response is always to assure them that HSV does not present in this way.

I concur with many things you say in your reply, including the fact that if people carry the antibody to HSV1, they will be less likely to become infected again elsewhere.  I believe that in my case, I was exposed to HSV over the course of a year or more, by my former partner who declined to inform me of her condition.  I theorise that it may have taken me some time to generate the antibodies to it and therefore was repeatedly infected and my symptoms are unusually severe.  It has caused what my research seems to indicate, is herpes simplex radiculopathy.  Symptoms change dailly and can go from severe to mild.  I think this is an indication of just how easily susceptible nerves are.

Have you tried taking an over-the-counter medication called Cimetidine?  It reduces T-cell suppressors, thereby increasing the immune system’s fighting response.  This is an off-label use of the medication.  I take 200 mg three times per day, plus a 400 mg dose before bed.  I find that within minutes after taking them, my symptoms reduce.  They even increase nerve sensation again for a time.

Outwardly, I almost only have red skin or bumps in the skin around my groin from time to time.  I have rarely had any lesions and even when I have, they’ve been present for only a day or so and do not look like the pictures I see online.  I believe that HSV affects of health of the skin and that when inflamed, it is not simply HSV, but rather a symptom of it.

I do not like to find myself in this position in which I’m making up my own theories, sometimes ignorant, but quite frankly I have had very little help from the medical profession.  They tell me not to quote from single-case reports.  Some have said it’s out of the question that it is HSV, while others have immediately responded that it is HSV and there’s nothing that can be done about it.  And this is in the same hospital.

I have also noticed a lot of itchy bumps on my chest, as you also pointed out.  For some years I was not even aware of what was wrong and made no attempts to try to prevent auto-inoculation.  It is not certain though.  This condition can cause a lot of perhaps unnecessary concern.

For what it’s worth, I have listed my symptoms below.  I'd appreciate knowing how they compare with yours, or others.  I’ve shocked myself at having compiled this long list over the past few days, due to the extent of it.  But it is no exaggeration at all.  Those symptoms I’ve listed are shown because I have no doubt as to their cause.  They all increase and decrease in severity together.

- Direct symptoms -

Genital numbness, especially towards the end of the shaft.
Glans doesn’t engorge during erection.
Glans doesn’t respond to temperature.
Prostate and genital tightness/pulling feeling/unable to relax genitals.
Skin paraesthesia.
Pressing/knawing in glans.
Tender feeling in penis shaft and surface skin.
Skin pain on shaft and scrotum.
Erectile dysfunction, due to numbness.
Loss of sexual impulse.
Loss of penile firmness when flaccid, structurally limp.
Grey underside of glans due to lack of blood flow.
No response when contracting pelvic floor muscle.
Sticky top of glans, with unpleasant feeling to touch.
Occasional prostate fluid discharge from meatus, non-bacterial, stops when taking acyclovir/valacyclovir – thought to be neurological origin.
Absence of nocturnal erections.
Periodic pin-prick in the left hip joint.
When contracting pelvic floor muscle, causes pin-prick in hip joint (as above).
Leg weakness left and right, with shaking if raising legs while sitting.
Severe upper back ache, perhaps during viral activity.
Strong urinary urgency even after small fluid intake, almost to the point of incontinency.
Altered facial and forehead skin sensation.
Occasional pinpricks around mouth (externally).
Pimpled, sore and clammy skin in groin, especially after climax.
Stabbing/pin-prick pain in glans, especially after climax and during the following day.
Skin burning, especially after climax.
Sitting pain in buttocks, at the impact of reclining oneself.

- All of the above, while they may seem too extensive, normally present simultaneously with other symptoms, giving an indication that when symptoms are at their worse, most of the above will be likewise.  Those symptoms over which I have the slightest doubt as to their cause, I have omitted from this list. -

- Possible symptoms, with good reason to link -

Numbness in top of feet and outer edge of knees.
Loss of balance and difficulty standing to put on pants.
Weakness in lower back.

- Other observations -

Mostly had only a sore red foreskin, accompanied by paraesthesia/numbness, and no typical open lesions.
Genital underside has tiny prominent bumps (< 1 mm), always slightly painful.
Occasionally symptoms improve greatly over the course of a year or more, then suddenly symptoms all return, perhaps coincident with viral activity.
When first exposed to HSV1, had severe debilitating middle-back ache.

- Treatment -

Two x 500mg valacyclovir taken together improves most symptoms, especially loss of feeling and impulse.
Cimetidine 200 mg or 400 mg also improves most symptoms, within minutes.

The most telling observation I’ve made (and which I self-administered since it can be bought over the counter here in my country) was when I started taking valacyclovir daily and found that my severe prostate tension was almost entirely eliminated.

[Larryoya]

How are you now, did you find anything to resolve your burning pain?

[lovemistake]

Apologies for a late response to this question, Larryoya.  Sorry also to see so many folks within this thread who have been suffering since I posted on this illness back in 2014.  I haven’t revisited this thread for some time.

Yes, the numerous symptoms I’ve suffered have since been formally diagnosed, caused by HSV.  They are the result of latent and chronic re-activating HSV-1.  I have received some treatment from neurology specialists and also from those working in alternative medicine, but unfortunately until a functional cure for herpes is found, I’ve had to learn to live with this as best as I can, as indeed many others have reported.

I’ve learned during the past few years’ research that symptoms are caused by chronic nerve inflammation due to viral presence and there are various papers giving substantial weight to this argument.  The work of the late Dr. William Halford who founded Rational Vaccines Inc. helped to illuminate the severe complications of this disease and dispel some of the myths surrounding it.  He pointed out that in sufferers with high viral load, or in whose immune systems the virus manages to overcome, that there is a constant battle of reactivation versus immune-response taking place within the pool of virally infected host cells.  He referred to this as a “pool of latent virus”, from which there is a “constant low-level reactivation taking place”.  In some folks, this low-level reactivation causes chronic symptoms, as some sufferers have observed.  He also referred to the size of the viral load being a factor in determining whether the patient’s condition would be chronic or simply below the scale of chronic suffering.

I’m currently looking at publishing some of the research I’ve done, including some of the treatments that have helped me and some of my overseas trips during the past several years in order to attempt to improve my quality of life from natural therapies, but there’s a substantial amount of work involved in doing so.  If I do manage to do so, I’ll post back with further information on that.

[larry123456]

I think the symptoms are purely HSV1.  Like you, I have HSV1 genitally.  I've had it for almost 3 years, and I've experience genital irritation and all the symptoms here for 3 years.  I'm negative by blood for up to a year out, even the Western blot.  I was "caught" by a swab, twice.

My thoughts are that it could be pudendal nerve related.  Herpes inflames the nerves, when I was first exposed I had sore back and all sort of crazy pains, nothing that was anything like the "classic symptoms" of blisters people talk about.  I never had a blister.

I honestly wouldn't be surprised if a majority of the people posting here had hsv1 genitally.  I know most have been blood tested, so was I, I think the blood tests are even worse for HSV1 than they let on.

I also feel, that for all the HSV1 and HSV2 genetically are the same arguments, I think how they act are much different.  Most people with HSV2 have frequent outbreaks, periods of normalcy between and are highly infective much of the time.

HSV1 appears to cause few outbreaks, if any, but tend to constantly irritate the nerves and cause redness, but apparently isn't contagious at those times or people have immunity.

I'm also of the belief that you can catch HSV1 again in a new location if you are unlucky.  Your body creates antibodies to HSV, but the t-cells localized in the skin seem to be what control it.  Since catching HSV1 genitally I've had HSV looking itchy bumps show up on my chest, right where I rub a towel when coming out of the shower.

I think you often see people say HSV1 isn't very contagious for a few reasons.  Most people have some form of HSV1 already, so acquiring it genitally may not be as bad as the initial outbreak some of us had.  Even then, my experience with HSV1 has been very different from a classic outbreak.  These huge differences caused many experts to tell me not a chance it's HSV, HSV doesn't behave that way.  Often times it's passed off as a yeast infection or fungus, or trauma, or even guilt.  I hate seeing that last one.

[lovemistake]

Is anyone who's posted on this long thread aware of a name for the condition?  I know there is the diagnosis of "post-herpetic neuralgia", but our range of symptoms seem more extensive than that and it seems to me that our pudendal nerve is clearly the cause of all this.

I have a positive HSV1 IgG antibody and I was exposed to the virus in 2008.  I have had nearly seven years of suffering from almost all of the other posters' symptoms.  I suffer from a constant penile pain, such as shooting, stabbing and burning.  I also have numbness there too.  I have sitting pain in the buttocks and recently also pain and bloating feeling in the abdomen.

Symptoms are reduced when taking Cimetidine, which has a known effect of helping the immune system, as it mediates the T-lymphocyte suppressor cells, which in turn allows T-cells to work more effectively.

Similarly taking a larger than usual 1,000mg dose of valacyclovir also has a notable effect an hour or two later, when my skin starts to feel better and pain is reduced.

I have the feeling of genital irritatability and unpleasant skin sensation when touched.  It also affects my urination, such that even after drinking a small volume, I will very soon want to urinate.  It's more a case of an over-sensitive bladder, rather than urinary retention.

In addition, I have male erectile problems, due to the nerves failing to work.  After a while they do work and then I'm fine, but it takes some effort.  If taking Cimetidine or a 1,000mg valacyclovir, this problem is reduced for a brief period.  Clearly the HSV virus is active in suppressing the nerve function.  Nevertheless I have lost the erectile impulse on arousal.

Is it the pudendal nerve that is causing all these symptoms?  Most of the above posters report the same symptoms as mine.  I have also undergone extensive CPPS prostatitis treatment as per Dr. Wise/Dr. Anderson's protocol in A Headache in the Pelvis, but it isn't that.  I have attempted to contact Dr. Wise about my problem because I feel that a number of people cite CPPS as the cause, but he does not seem to respond to people who suggest that their CPPS has a herpetic cause.  I think he is only interested in getting patients on their $3,990 treatment and training sessions.  I say this for the benefit of any sufferers who might think of trying that treatment.

[ImHereTooNow]

No but I'm am searching for answer as well. Thank you for posting your info