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Penile pain, burning and itching genitals
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Penile pain, burning and itching genitals

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
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124 Comments Post a Comment
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Avatar_m_tn
I have some similar symptoms... Burning, pins-and-needles, and some occasional sharp pains. Like you I have been through every medical test known to humankind... Finally the doctors said "I don't know... It could be chemical, genetic, or a past infection... You are making it worse by worrying about it." In the end my neurologist prescribed Cymbalta for the sensations. I have only been on it for a few days, but it seems to help.
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Avatar_dr_f_tn
Hi,

It seems that you have been under several intensive tests already and all these have been negative. Do you have any known allergies before? Have you been assessed along this line? Although you haven’t mentioned of a rash or any lesions in the area, an allergic reaction to some unknown trigger may be a differential. Also, this may sound like a sensory problem. An EMG however was done and it was negative (is this correct).I understand this may be frustrating in your case and I agree that a second opinion may help.

Was there any history of trauma or injury to th area?

Any prior surgery or instrumentation?

Engaging in alternative forms of therapy such as acupuncture and physical therapy may also  help alleviate your symptoms.


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Avatar_m_tn
Hi Vanessa,

Could you comment more on your thoughts about allergies in this situation?

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Avatar_dr_f_tn
Hi,

Allergic dermatitis and contact dermatitis are differentials in your case.Itchiness and weeping excoriations may be associated with dermatitis. Some triggers like soaps,lotions,creams, clothing that are in constant contact with the area may trigger certain reactions.Allergic reactions may present with a burning or tingling sensation.Have you been assessed along this line?

Also, you have mentioned of difficulty initiating urination ( is this correct?).You may discuss with your physician chronic prostatitis and prostatodynia.These conditions may present with absence of bacterial load in the urine but may persistently present with discomfort in the form of burning or pain in the groin area.

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Avatar_m_tn
I am a different poster from the OP, but similar symptoms: chronic unexplained burning/tingling/pain in thighs, buttocks, and genitals.

Is it possible that there was a one-time allergic response that caused this neuropathic pain? I had contact dermatitis before this started at the bottom/back of my thighs.
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Avatar_m_tn
...help... :)
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Avatar_n_tn
I can certainly relate to your frustration as well as your symptoms. Mine began nearly 3 months ago. Pain sometimes burning pain in my thighs, genitals. Itching as well and that clammy feeling. For me though this all began exactly a week after having sex. I have been to my family doctor and 2 urologists. Have been tested and retested for STD's. None present. Was curious as to whether you had seen any folliculitis(infected hairs) anywhere below the waist. These can somtimes be painful. I do suffer from this. Every winter it seems to creep up. Just a thought. I am headed to a neurologist myself soon. As I am now feeling pain in the middle of buttcheek. Sciatic maybe. Tingling down my leg to my feet.
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Avatar_m_tn
I have had a similar situation too only mine started about a month after a sexual encounter. I have been to two urologists so far and nothing has changed. Most of them seem to refer people to neurologists when they fail to diagnose these problems. And i have just been refered to one last week, however, i am not going there as I don't think my problems have got anything to do with nerves. It's either an allergic reaction or underlying infection that cannot be easily detected.
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Avatar_m_tn
I have (for the past six years) suffered with a combination of all of the symptoms described by "confused 1234", "pandew" "scared _half_to_death" and many others on the net i.e. burning/itching/clamminess/pain in groin area (inside top of thighs, scrotum & penis). Intermittent intense itching and pain in the penis and testicles were also early symptoms, but occur less frequently these days.  Also less frequent of late is a feverish feeling, often accompanied by a dull ache in my lower abdomen.  

Sitting on hard chairs aggravates the symptoms, especially the burning, clammy sensation in the upper thighs and scrotum (sometimes it feels like a blow torch is burning my scrotum, although skin remains normal in appearance).  Possible related symptom is a slight but constant numbness in my right thigh above my knee and an occasional dull pain in the inside of my right thigh.  No discharges, sores or rashes ever presented (other than for an occasional pimple).  All the various symptoms seem to occur cyclically, with brief symptom free periods when I feel very euphoric.  

As these problems developed a few day after a sexual encounter, I was initially treated with a range of STD treatments (antibiotic, parasitic and fungal) even though all tests were negative.   My prostrate is normal and annual full blood tests show no abnormalities.  

My doctor has given up and says it’s all I my mind - even prescribing  tranquilizers – but all to no avail.  

I have resigned myself to having to live with this debilitating situation – but given the large number of people that present with very similar (if not identical) symptoms, I can only conclude that it is a very real illness - perhaps neurological.  

Lastly, knowing that I don’t suffer alone, is somewhat therapeutic and would welcome further discussion on the subject.

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Avatar_n_tn
Thanks to all who have posted for your comments. As Viroman has said, it is a little help to know that others are suffering similar symptoms.

I have given up on seeking medical help on this for a while and so have resigned to live with the symptoms in the hope that one day they will resolve themselves.

I find I get some relief from the pain of sitting down by sitting on a donut shaped cushion so there is no pressure on my perenium.

I have also considered that there may be some infection of the pudendal nerve. If any of you wish to consider this check out www.pudendal.info

All the best
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Avatar_dr_f_tn
Hi,

This burning and tingling pain in the groin ,thighs and buttocks area appear to be nerve related.

A primary differential at this point will be pudendal nerve neuralgia. Other differentials will be genitofemoral and ilioinguinal neuralgia.

Do you have any previous abdominal surgeries?

Do you engage in exercises like cycling exercises?

Pudendal neuralgia is usually associated with frequent cycling exercises. The pain may be aggravated by sitting down. The pudendal nerve supplies the genital and perineal areas and in your case these forms of neuralgia are all to be considered.

I suggest that you seek consult with a rehabilitation  medicine specialist for further evaluation. Aside from a urinalysis and urine culture as well as a prostatic secretion culture, you may benefit from physical therapy.

I do not think there is an association between the dermatitis and the burning pain at this point. Unless the previous rash was a herpes zoster or viral infection , then we may be able to find a connection between the two.
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Avatar_m_tn
I agree that my symptoms are nerve related. I had VERY extensive blood work and imaging studies. However, my neurologist has been unable to find a cause through blood tests and MRI.

I actually do a fair bit of stationary biking in the gym. However, given my current condition I do not go to the gym often anymore. Interestingly enough, I have not been able to fully recall the timeline over which my symptoms developed. It may have started with the rash. However, I also recall some minor burning in my abdomen, on top of my thighs, and some odd penile sensations (including some difficulty with erection/climax) prior to the rash. Concurrently I was working out pretty hard on the bike. After the rash things heated up pretty quickly, no pun intended :)

I have thought about the rash:

(a) It was on both thighs which I understand would be very odd for Zoster.
(b) I saw a dermotologist within 2 days. She did not suspect Herpes Simplex or Zoster. I have asked her about this several times during follow ups.
(c) I have tested negative for HSV2 five times over the last six months (4 Herpes Select and 1 Pockit/Biokit). However, I tested positive twice for HSV1 via Herpes Select. The STD forum specialists believe it to be unrelated. However, I am suspicious of HSV1. Thoughts?
(d) It is possible that the rash was fungal, bacterial, or viral. However, it was treated successfully with a steriod creme within 1 week.
(e) I may have experienced something similar in graduate school 10 years ago. During the same time frame, I had a wicked case of prostatitis that lasted for months and resisted an awesome array of antibiotics.

I am convinced that the neuralgia is sensitive to stress. Cymbalta relieved the symptoms quickly but also caused side-effects :( I will consult with a urologist and a different neurologist. Your suggestion above regarding cycling is a new angle to explore. Thank you!
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Avatar_m_tn
I've been suffering from the same exact symptoms for the past 4-5 days now. It’s not fun at all.

Two months ago I had my first cold sore, HSV-1, on my lower lip. This made me worry about getting HSV-1 on my genitals, which is possible. 2 Weeks ago I had an ingrown hair on my Penis and that resembled a Herpes blister in the first stages so I had it checked out. You can tell that it’s an ingrown hair follicle because most of the solid material is located under the skin unlike herpes. This ingrown hair caused some pain but not much that was noticeable and now as that is almost healed I have this burning/itching/clammy/painful feeling 24/7.

I had it checked out as soon as I noticed it wasn’t going away and my doc said to use soft soap (Dove) and let it heal on its own. She didn’t relate the ingrown hair to the pain and said if I was going to have sex to use a condom.

I guess that’s all the input I have on this. This is an annoying feeling, but it’s nice to know that I’m not the only one.

Oh and cycling dude, I’d keep it up, I bike and run everyday it’s nice out. You body heals faster when you eat healthy and exercise. I wouldn’t work out to exhaustion though.

Good luck guys and I’ll update if this goes away.

-coffeeguy
23
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Avatar_n_tn
I am 36 and seem to have this same issue for the last two years. I was first tested for STD's they came back negative but I still have this burning itching feeling on my buttocks, testicles and shaft. The weird thing  is I have this sticky secretion on one side of my shaft and they gave my cream for it but it never seemed to go away long with a 1/2 long gash that healed but is very tender along with where all the secretion is also. When I have sex it makes it worse and hurts light hell. I am going back to the doc's again but no one’s knows what the deal could be. If anyone gets any ideas please post. Thanks for all your help here.
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Avatar_n_tn
Wow, I didn't realize there were others out there going through the same type of thing.  I've been experiencing the same types of symptoms for a few months now, and feel like I'm losing my head!  I've had two negative type specific HSV tests, both of them more than 8 months out from my last sex, I've been to two docs who've told me not to worry about herpes and that's about it.  The tingling and crawling feeling with me is intermittent throughout the day and in my scrotum, perineum, and definitely my inner thighs, and I have occasional pinching feelings in my rear upper thighs and butt.  Everything seems to get a little better when I stand up or move, and all of it seems to show up for a week or two and then go away for a month or so.  I guess I should make an appointment with a urologist to check my prostate, never thought that could be the culprit, since I'm 34.  If anyone has had any luck with a specific diagnosis, please post!
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Avatar_n_tn
... should also mention the occasional pain in the head of my penis, and the fact that the more I think about it, the more I remember having a hard time getting rid of all of my urine before zipping up.
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Avatar_n_tn
Hi, i have noticed similiar symptoms for 5 months now. Penile pain, rectal itching and post void dribbling.  I agree the most frusturating part is not being able to find a clear diagnosis.  It does appear to be getting worse, any thoughts?  Has anyone else tried the antibiotic Ciproflaxon? My urologist wants me to try that for Prostatitus.  Im currently trying a Paragone cleanse, has anyone used this product?

Thanks,

Job
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Avatar_n_tn
I have been going through similar symptoms (not exactly) over the past few weeks.

I just had blood work done about a month ago. Came up completely fine and clear of anything. Last time I had sex was two years ago (pathetically enough). I masturbate regularly, and never rough. Always had protected sex.

On the left side of my penis, basically right where the shaft meets the scrotum, it tingles/feels prickly.. but not always. Just if I am sitting and shift my position. It's mainly because the flaccid shaft is sticking a little to the scrotum... clammy-ish feeling.

I, too, have no visual indicator of anything wrong. No sores, no irritation or redness. Looks completely normal. This began about a week after I shaved my genital area (I do this regularly, about once a month).

I plan on seeing a urologist, but I honestly don't think anyone will be able to tell me what's wrong, especially since you guys are all going through the same thing.

I think my stress about it is making it stick around (I know they say to not worry about it, but if I went 33 years without any abnormal feeling in my penis or testicles, and then all of a sudden I get this weird feeling in it, how can I keep myself from worrying about it? This is my manhood we're talking about here!).

If anyone has any further insight, please let me know. I bookmarked this page and will watch for any responses.

Thanks for reading,
Healthydude76

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Avatar_n_tn
Oh, and I have no problems urinating... no pain, no frequent trips to the bathroom.

Also, when I masturbate, it doesn't seem to bother me that much or hurt (especially if keep my grip around the tip, which is what I usually do).
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Avatar_n_tn
Hey,

I'm experiencing all of the same symptoms and after weeks of antibiotics it's down to chronic prostatitis and 'maybe nerve issues' - so they're hitting me with pain management drugs (lyrica) but no solutions.  

Has anyone had any success in sussing out the issues?

Going a little insane myself and the anxiety of the unknown is tough to deal with.

Any info would be great appreciated.

Thanks.
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Avatar_m_tn
Here I am doing a google seach and I found this thread. These are the exact symptoms I have been experiencing. THe feelign of icy/hot, menthol, skin rub burning sensation in my thighs, buttocks and lower back and sometimes calves. This all started after recieving unprotected oral sex from a person who I found out later was HSV 1 & 2 positive. I have had this feeling for almost four months. I have taken three std test everything including HSV 1 & 2 negative and I even took a Western Blot herpes test. I just took another one at 15 weeks post eposure. I am absolutely convinced that this has something to do with this feeling. I to have been unable to drain all my urine. I can feel drops still in there. I did se a urologist and they said the prostate was slightly enlarged... Nto sure what that means.  


Has anyone thought that this just may even be related to HSV 1 genitally. It is so annoying and dehabilating. It is driving me crazy. I just want a straight answer. Has anyone tried any BPH medicines, Herpe antivirals, etc... it appears anitbiotics are not curing or helping this. Alos anyoen look at homeopathic remedies?
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Avatar_m_tn
Okay, I have the same symptoms which have been driving me nuts. Literally! It all started about a week or more after protected intercourse/oral.

Started with burning in groin/thigh area. A feeling as if something was....inside my groin...

Then it escaled to electric shocks like nerve pains in my Legs/Lower Back/Buttocks/Feet and sometimes even penis.

Been to doctors lots of times and they don't know what it is and say it's not related to Herpes.

They told me it's all in my mind and treated me for anxiety and prescribed Lorivan. I suggested blood tests for HIV and all STD's and they all came back negative.

It's like nobody believes my pains and I've spent LOTs of money going to these doctors.

My next option is to go see a Neurologist because I believe all these pains are nerve related.

And it's been going on for almost 6-7 weeks and only seems to be getting worse.

If anyone can offer some relief please please please help us out. Before I sleep at night I pray that when I wake the next morning these pains are gone.

Help.
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Avatar_m_tn
I have the exact same symptoms mostly on my left side. Penis burning feeling (left side mostly), left leg burning feeling, left arm, sometimes left side of chest and left side of face. This started last October 2009. No way would I have thought that I would still have still. Sometime it goes away, or at least I feel better for a day. The weekend are usually the best (much less sitting, more activity). I'ts not there in the morning when I wake up but by the time I get in my car and drive it's back. The only visual thing I notice is a slightly raised rash/welt looking area just above my left cheek bone. I notice a lot of old postings on this subject and never quite know what has happened to these people. Does this eventually go away so they don't post anymore?
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Avatar_n_tn
I am suffering with similar conditions like many others here for more than 3 moths. I had similar problems 2-3 times in past, but after 2 weeks the pain went away. The current case is more difficult I guess, because dull ache is settled down in right side of my penis for more than 3 months. I tried antibiotics, hot baths, antidepressants, but nothing works good enough. There are bad days when I really suffer and there are good days when things seem to get better. My guess is that it is something like oversensitisation of pelvic nerves and muscles, pelvic myoneuropathy. Treatment is difficult,  my urologist suggested long lasting local anestethics shot in the pelvic region, I will keep you informed later.
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Avatar_m_tn
Just wondering if you had any updates. Mine is still there everyday in some form but not as bad when not sitting all day. Mostly everything is on the left side. I feel the burning piching feelings mostly in the genital region but also burning in left sid of buttocks, legs, arm, and face. If you have any updates let me know. I'm almost thing I had some virus or bacteria at one point when it started last Oct and it left me with some type of nerve damage. I've been to a Uroligist who said the urine test showed no infection and prostrate felt fine.
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Avatar_n_tn
For the last 3 months I've been experiencing very similar symptoms to everyone here on this post. and like most people here, all of my test have come back negative, and my primary care physician has been unable to give me a clear diagnosis. I was first treated for prostatitis, and given a round of antibiotics. these helped some of the pain/discomfort, but didn't do much for my overall symptoms. about 2 months later, after a visit to a urologist, he checked my prostate and said it appeared the infection was gone, but that the prostate was pretty large for my age (30), so he put me on alfa-blockers once a day (Rapaflo) to ease the tension and help reduce the size back to normal. after only 3 or 4 days on the medication I started to notice considerable improvements. my pain began to subside. the prickly itching in my genitals, anus, and buttocks decreased dramatically, and my urination flow returned to almost normal. I feel 100x better than I have for the last 3 months. hope some of this helps. good luck to everyone here.
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Avatar_m_tn
Its a herpes because heroes lives in nerve,,, I have the same pain too plus testicle  inflamation (inflammation)
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Avatar_n_tn
What kind of pain do you have on your genital?  How do you know it's herpes.  Did you get diagnosed?  I am starting to think that GHSV1 is more problematic that we are told and that it presents itself in unusual ways, mostly appearing like aggravated nerves.  From what I've read online from other men with similar problems and from my own experience, this aggravation can be 24x7x365.  I think I would rather have type 2.  Also, it seems this GHSV1 aggravation is not affected by anti-virals.  This is a real health problem.
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Avatar_m_tn
I received unprotected oral sex from a positve hsv2 girl and after that I had all the same pain above but all my blood test came back negative after 3 months and 6 months from my contact but I'm still think may be its a false negative.... or may be its a shingle cause shingle cause more nerve pain other than hsv1 or 2 .
did u test ?
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Avatar_n_tn
My updates:
after 4 months of suffering my pain vanished almost completely in July-August 2010. Lots of rest, swimming in ocean, relax+ amytriptilin and Neurontin. Then, back in the Oct/Nov 2010 slow very mild relapses. In Janauray I had more significant relaps after playing tennis 2 or 3 times. Then I tried so called shock acustic wave, because I my doctor persuated me that strained groin is the reason behind. Since then the pain is 100% worse. I guess that neuralgia of pudendus might be the culprit. Or my urologist said that this shock wave imposed "stormy nerves" and it should settle down within the weeks. Any ideas?
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Avatar_m_tn
I have similar problems as everyone else. It started a couple of days after having sex. I experienced flu like symptoms for 5 days followed by itchy genitals, itchy legs,  left sided perineal pain, red bumps scattered around thighs and other symptoms. I've had two negative igg tests for herpes at 6 and 9 months post exposure and all kinds of other tests; Lyme, mono, STD, CBC, prostate, etc. and they all came back normal. I get weird zaps in my arms and legs which i'm guessing is nerve related. The sciatic leg and back pain has pretty much ruined my life. I used to jog and mountain bike and can no longer do that, and am struggling to get through days at work. Just when I seem to be feeling better I get run down and the symptoms come back again. I also think it's brought on by stress and I still say it's herpes, but with negative tests and atypical symptoms I'm hoping it's not, at this point I'd just like to know one way or the other. I just thought I'd share my story, if anyone has an answer to this please help.
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Avatar_m_tn
Do you have any testicle pain ? Do you have any buttocks, legs pain ? for how long long the pain last ?

Thank you.
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Avatar_m_tn
I have pain in my perineum on the left side, no real testicle pain. I have very bad buttocks, back and leg pain. It's pretty much constant, i've had weeks here and there where I felt good. This has been going on for a year.
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Avatar_m_tn
Have u been see by any doctors ? Did you take WB test for herpes ? Xray ro check your lower back pain ?

Is the pain in buttock and legs ? ( like a burning )

Thank you.
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Avatar_m_tn
I have had an x-raydone, no MRI. I was told my back looked ok. My last doctor seemed to think it was all in my head and we didn't seem to be getting anywhere, so I have an appointment with a different doctor in a few weeks. I was planning on taking a Herpeselect igg test this week which I've read was one of the best, I have not had a WB done. The pain initially started as a burning, dull type of pain in my left hip and outer thigh area. It eventually started happening in both legs, lower buttocks and lower back, some days I was walking with a limp. It seems to match sciatica description pretty well. Thanks.
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Avatar_m_tn
Did you have any swab test for any rash or pimple or blister?
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Avatar_m_tn
I have gotten small red bumps on my thighs and buttocks that coincide with being run down and itchy, but they don't have any fluid in them and seem to be under the skin and usually singular. Some of them lasted for over a month. I've never had any rashes or bumps on my genitals, but did have a slightly painful bump on my perineum at one point. They're never in clusters and I don't know if they can be swabbed if they don't have fluid or crust. They don't really seem like blisters. My last doctor said folliculitis and some of them do look like folliculitis but some are definately not. They seem like they're under the skin and fade in and out. Also I've never noticed folliculitis on myself before this.
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Avatar_m_tn
Are you plan to take another test ?
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Avatar_m_tn
Yes, I plan on taking a Herpeselect test in the next week or two. I've heard igg tests are fairly accurate, especially negative results at 6 and 9 months with atypical symptoms, so I don't know what to think. Any thoughts on this?
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Avatar_m_tn
What do you mean by atypical symptoms?
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Avatar_m_tn
Any updates.  I have constant pains or burning sensation moving around my upper thighs. Does not hurt when I touch my thighs.

It is more annoying then anything else.  

Anybody have a solution.  

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Avatar_m_tn
I have the exact same symptoms. My partner does not have symptoms but had UTI at one point the same time i started to have the symptoms. We both took antibiotics for UTI but my pain and tingling sensation seemed to continue. I have noticed it more at night. BTW i have never been diagnosed of having UTI nd took the antibiotics only because of the pain and uncomfortable sensation on mt penis scrotum and rectal area. Does anybody here received a diagnosis?
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Avatar_m_tn
I had posted here awhile back and think I have finally figured out what is wrong with me. I doubt we all have the same exact problem, but maybe someone has the same thing as me. It is a fungal infection that started out as a prostate infection and has spread throughout my body. I'm pretty sure it is Candida or something similar to that. Check it out and good luck.
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Avatar_m_tn
This may be a solution to some of your problems, something to look into at least.

"
questionguy334  
Jun 22, 2010
Hi,

For several years I experienced the problem which you have mentioned.  If you touched the scrotum, the skin was sticky and would even adhere to your finger.  I went to dermatologists, explaining the problem, but there was never any solution.

Recently, my physician discovered that I am severely deficient in vitamin D.  I was prescribed a supplement for other reasons, and now I have noticed that the scrotal/penis stickiness is gone.

I hope this will help any man experiencing the problem as I know how isolating the problem can be.  I went through times when I thought I would never be with a woman again.

All the best.  Also, a person can have too much vitamin D in the body--check with your physician to have levels checked."
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Avatar_n_tn
Guys,
it is quite a relief to find this blog. Seems like this debilletating condition is not unique to me. In my case, it started about 2-3 years ago, although I must admit that I had experimented with substances in college for about 1 year and feel that it might have contributed to the sensation. The main culprit however seems to be sexual encounters with my girl fiend, most unprotected. After a few months, I found some white substance sticking to my penis. Went through the standard tests and nothing came up. Thought this might have to do with marijuana etc and consequently gave up smoking/drinking and have been ever since for around 2 years now. Thought it might be due to a lack of exercise and started playing squash etc.
In my specific case, the condition amplifies when I masturbate. If I cease to masturbate, within 7 days things get much better. What is worse is that due to this condition in the penal area, there is an odor issue that is a byproduct. This makes moving around in social circles almost impossible. So, this my friend circle is fast approaching zero.
The condition is an itch/burning sensation in the penal area which feels like there is some foreign substance present. Went through many urologists (4) and some neuro doctors who said that it was a figment of my imagination. Took some medicines which were primarily designed to calm me instead of attacking the problem and finding a solution. At times, I feel like there is no point fighting on since there is little probability of finding a job working next to colleagues with this condition. I just hope this gets fine, most recent doctor prescribed Ciprofloxacin and gave up after this 1st attempt. Another doctor's visit is scheduled for tomorrow and I will be asking him to send me to a nerve doctor. Furthermore, my back hurts so I am wondering if there is some nerve connected to the spine that is the culprit. Anyways, I won't give up trying new things that might affect and possibly rectify this problem. I've almost given up hope, but not quite!
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Avatar_m_tn
Thanks for sharing your experience. I  have been having this problem for a couple of years.  It started in a similar way as many of the other people in here.  In my case it was, very fatigued or low energy, stiffness in my back, inching or prickling sensations in the glans (glands), groin discomfort, posterior leg pain that started in one side and then both but worse on left and at first purple and then pink rash in the glans (glands).  It has gotten better but it still there. It seems to be going away slowly.  My energy has improved a lot and the leg pain is now usually minor.  I always thought that there may be a connection with a fungal cause bc nothing else makes sense lasting this long.   Interestingly, I have had problems with foot/toenail fungus and they are only on the left foot.  I don't know if this is related but I certainly find it helpful. I would appreciate any updates on how you're doing as I think I may have something similar.  Comments from others are appreciated as well.  
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I started a candida diet a month ago and was feeling really well, but then I drank a lot of beer one night and my symptoms all came back. I am starting the diet again and am going to see if my doctor will give me some diflucan. I take Threelac, oregano oil, coconut oil, and saw palmetto. It got to the point where I would take a packet of Threelac and immediately get the pain in my perineum so I am hoping that means it's working. I can update you in a few weeks and let you know how it's going. If you think you have the same problem you should try the diet for awhile and see what happens.
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i was thinking earlier that for girls their mother is always with them  but what for us the guys the males the man hood as you know we dont attach to our fathers for this type of dieseaeses but we mainky consult with our friends or internet chatting friends or so me times the well wishers but never to the father so do we should go direct to the doctors or to our parents in which we should mainly contact the father or else others reply
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there is this thing called pudendal nerve entrapment which causes all these symptoms.
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Does anyone have any sort of cure? i have the same synptoms and doctors just keep putting it down to anxiety! Can anxiety cause all these symptoms???
anyone?
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of course that anxiety is magnifying the problems, but seldom is the key issue. I am struggling with those penile/pelvic pain for more than 2 years, with some worsening and some improvment. Had an entire exam for Pudendal nerve entrapment and this was basically excluded. I was told that this is rather nasty case of chronic pelvic tension, mainly the bulbocavernosus and ischiocavernosus muscles. really debilitating confition.
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http://www.prostatitis3d-cure.com/
i found this and i go tomorrow and find out what to do
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Everyone in this thread has atypical genital herpes symptoms go get valtrex.
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Hello all,

Just trying to help here, so dont shoot the messager.  All of your stories sound very similar to mine.  The only difference is I also have the same feeling in my left hand and forearm.  After, 6 doctors (nuero, GP, Uro, derm, ect.) I finally got 4 tiny (like the size of a needle tip) on my knuckle.  I had been getting rashes in my groin and on my hand, but all the doctors said dermatitis and it was not related.  I went to a new doctor told him the story and begged for him to puncture the tiny bumps and culture...HSV-1 postive.  They have yet to find something to culture in my groin, but everything started at the same time.  I have been on valtrex now for 1 month, and no more rashes.  The bad news is that the nuerological issues (groin, buttocks, legs, ect) have not stopped.  I went to one of the leading neuroscience centers in the world and they said HSV-1 induced neuropathy.  I am no trying to figure out how to beat this thing.

Bottom-line: Go get tested for HSV-1 and HSV-2.  If you come back postive for either 1...bing-go.  It is not nice to here and does mean a long road, but at least you can start fighting the actual cause....Good Luck!
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HOLY MOLY!!! I've read from the top of this post to the bottom and I can say I am some what feeling the same thing that a lot of people here feel and as far as testing everything came back negative except the doctors I've seen won't let me check for HSV antibodies in my blood. although I have to note that I have other symptoms that aren't around my genitals that has me worried and I'm gonna test for HIV when my 3 month mark is up. I've suspected herpes but until I've done a blood test I wont know for sure.
flyer28 I didnt get a chance to read all your symptoms but seems like you've been updating your status so I'm gonna keep track thanks for sharing. I can say one thing though is that my appetite and libido isn't what it used to be 3 months ago but I'm trying to stay positive just these symptoms keeps reminding me there might be something wrong
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Everyone in this thread that don't have blisters or anything like that its hsv-1 no point in getting all those terrible tests done like biopsies and prostate and ****.
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How can you claim it's HSV when many of these people, like myself, are negative for HSV 1 and 2 via good blood tests (i.e. Western Blot).  I've been dealing with this for 2 years now, and I've continued to test negative for herpies (herpes).  CPPS (chronic pelvic pain syndrome) is the only diagnosis I've heard that makes sense.  Dr Wise has a great book on it called "A headache in the pelvis"
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Why would u live with this condition for 2 yrs? If I'm still in this condition in 2 yrs ill be longggggg gone ha.
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I too have this shite, any discoloration?  Only thing I changed was I doubled up on doxycycline on deployment and pulled my groin muscles around the same time.  I've also had a real itchy prostate which seems to be related to a hemroid...still researching myself as doctors are useless And throw medicine like parts at a broken car...
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I too have this shite, any discoloration?  Only thing I changed was I doubled up on doxycycline on deployment and pulled my groin muscles around the same time.  I've also had a real itchy prostate which seems to be related to a hemroid...still researching myself as doctors are useless And throw medicine like parts at a broken car...
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Ya just my skin overall is funky, its raw and wrinkles more gets red on the foreskin and the tip, sometimes sticky feeling. Weirdest **** ever man I'm about ready to end this misery no one wants to help out. Doctors could care less.
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I doubled up on doxy before symptoms, then the itchy rash started one day, also symptoms of pulled groin and then I felt like I pulled my suspension muscles in my penis.  Also my left testicle swelled like I had a hydrocele, except was painful.  Was given more doxy which didn't help but pain went away in nut by itself.  I guess I have to learn to live with this ****.  The sticky balls/penis is the worst.  **** it though, good luck!
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Hey cbenj. Did you end up testing positive for hsv? Just curious. Are you currently on valtrex? Would they not start you on it just to see if you respond?
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Nobody "has it for two years"; that's only looking back to the past. Everyone with pain has it NOW. And in dealing with pain management, all anyone has to do is to make it through the present moment. Lots of people deal with chronic pain for many years without killing themselves, though they may occasionally feel hopeless and helpless and resigned. Your sarcastic remark tells me that you haven't really experienced chronic pain over any length of time and you are only conjecturing about what you might do. Some people actually DO kill themselves over chronic pain.  I hope that you never do experience it; it's hard to experience any other parts of life when pain is so prominent. Try feeling sexually aroused when you're in pain. It's so not possible to consider letting in pleasure when that area is consumed with pain.
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To give some hope to those that have these symptoms without sores and have had negative test results after a period of time....

I have had all these symptoms and just received my HSV 1/2 herpeselect test results for 2 1/2 years after my last at risk encounter.

Negative for both less than .9

CPPS, anxiety, friction, too much soap.. etc can cause all these issues.

I will stay active on this board if I can be a help to any of you.

Cheers,

Borat

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there is hope!!
after a year and a half of not knowing what was going on and research i found: u must get your semen checked for pathogens. you wont know how to treat this condition until u know which ones u have.
http://en.wikipedia.org/wiki/Chronic_bacterial_prostatitis
i found that after many tests i had two pathogens. guess that what i get for not using a condom. the pathogens i had were:
http://en.wikipedia.org/wiki/Mycoplasma
this was treated with smz/tmp ds 800-160, but i still had symptoms. after having my semen cultured i found that:
http://en.wikipedia.org/wiki/Enterococcus_faecalis
was present and was given NITROFURANTOIN. the bottle cost me $130.  i am starting on the meds tomorrow. i will be on them for 3 weeks. i really hope this cures it. my quality of life *****. will post updates

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Has anyone tried HSV antivirals, I had the same thing as everyone here from the last 2 weeks after a sexual encounter, I was convinced it was HSV2 and got a 5 day prescription for antivirals... and currently I can say all the symptoms have subsided except my lymph nodes are sore and hard signifying the presence of an infection possibly HSV. I am hoping it doesn't come back but it seems to run a cycle from what i read here. wondering if anyone else has been using antivirals longer than myself with results or not
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Did you ever get rid of this? I have very similar problems lasting 3 months now. Not sure where to go
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hey andrew, mailed you a message, I would love to hear more. I have been suffering for 6 months now.
i can't work out where all the originators of this post have gone? like confused1234 etc? Did they get better and not post the diagnosis? if i get better i will definitely come back. would love to hear from any who posted in 2008 and see what happened to them?
This feeling so frustrating
cheers

J
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i the same symptoms and it driving me crazy had all test done all negative its been 6 months now this has got to end please help
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It really amazes me that some people on this forum like to make conclusions on everyone elses behalf, when clearly there are many inconsistencies with the symptoms described here.

Continous itching is NOT a symptom of an STD - please ask the experts or go follow the discussions in the forums with the experts.

There are however, many conditions that are mentioned here and where people have been diagnosed with those, right here in this forum.

But anxiety can definately ad to this - I can personally vouch for this.

A number of different conditions are discussed here that might have similar symptoms.

Having said all of this, it is good to be concerned about your health, but dont allow it to become an anxiety disorder.
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Hi everyone,

The symptoms and experiences described here match exactly with symptoms I have been experiencing for the past few years.

It started after sex with an ex-girlfriend. Clammy feeling in the groin and thighs, generalized pubic itch, difficulty passing all urine, appearance of small red dots on inner thighs and a dull, roaming ache/pinching sensation that seems to affect my penis, testicles, thighs and buttocks. I've also noticed a general soreness in my upper legs.

Like many others here I assumed I had contracted HSV and got tested. Negative for both HSV-1 and 2. Various doctors thought it could be a fungal infection, candida, an STD or simply psychosomatic.

The symptoms will disappear entirely for long periods of time but will reoccur after sex. I just recently had sex and the symptoms appeared the very next day.

I have gone back and forth between what I think is causing this. At first I was sure it was HSV (probably 1) showing weird symptoms, but all of the negative HSV tests here would indicate that is not the problem. The symptoms and timeframe do not match up well at all with HSV either.

I thought it could be generalized soreness from sex as well as generalized itching from shaving the area.

I theorized that it could be psychosomatic like a lot of people assume. However, the congruency and specificity of everyone's symptoms makes me doubt this.

I'm still not sure what to believe. I have a feeling this is a nerve-related disorder which is caused by sex and is further agitated and magnified by anxiety. I'm cautious to place the blame purely on psychology because of how specific the symptoms are and how many people are experiencing them. I can only say that this is almost certainly not an STD and seems to be something more nebulous like neurological or psychological disorder.
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Subscribed for updates
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I live in jersey C.I near France i'm 76 yrs old i have suffered this condition for 7 yrs I had faith in so called experts taking pills and potions untill the central nervous system became involved I now burn from head to toe 24/7 after a lot of research a skin specialist sent me to Guys hospital London through internal exam a trapped pudendal was diagnosed, a neuro modulator was recomended, at my age i do not want a hole drilled in my spine . Much research later I found Professor Roger Robert who developed and specialises in pudendal nerve decompression. He is in Nantes, France. With the help of my doctor I am now in the process of contacting Prof. Robert with the hope of being accepted for an operation having discovered that this is the only hope of a cure.There are doctors in America who perform same our advice is enter on computer pudendal nerve decompression - you will be amazed at the post and success stories. Good luck catch you later Samlew.
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I live in jersey C.I near France i'm 76 yrs old i have suffered this condition for 7 yrs I had faith in so called experts taking pills and potions untill the central nervous system became involved I now burn from head to toe 24/7 after a lot of research a skin specialist sent me to Guys hospital London through internal exam a trapped pudendal was diagnosed, a neuro modulator was recomended, at my age i do not want a hole drilled in my spine . Much research later I found Professor Roger Robert who developed and specialises in pudendal nerve decompression. He is in Nantes, France. With the help of my doctor I am now in the process of contacting Prof. Robert with the hope of being accepted for an operation having discovered that this is the only hope of a cure.There are doctors in America who perform same our advice is enter on computer pudendal nerve decompression - you will be amazed at the post and success stories. Good luck catch you later Samlew.
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Hi, I was just seeing if anyone had any further updates on this matter? I still have the same symptoms, the burning is getting a little better. My testicles still feel very clammy, stick to my leg and the skin seems much saggier and hangs low and my groin constantly feels uncomfortable. All doctors dismiss it and say no STD can cause that, but its driving me mad.
The legs have pains throughout and burn mainly around the thigh region and sometimes lower leg and in groin area.
I have had all the neurological tests done that are possible (MRI/ECG/nerve biopsy and small fibre neuropathy tests) The neurologist did say some nerves were very slightly abnormal, but didn't really offer much of a solution or whats caused it. It was just some nerves didn't react to heat etc. He has prescribed Pregabalin as this works for neuropathic pain, this also works as anti anxiety!
I have just had semen analysis and culture done as well and that was clear. so it seems it isn't any sort of bacterial or fungal infection from sex. Been tested for STDS 3 times. In the UK its impossible to get Herpes tests without lesions, but looking at the amount of people who have been tested and are negative, it seems unlikely anyway. Plus i know the girl I slept with and don't think she wouldn't know and certainly wouldn't lie if she had it. Also really the symptoms are very unlikely for herpes in the fact its both legs.
So at the moment I am a bit of a loss and feel like as confused1234 says, there isn't much more you can do in terms of medical diagnosis.
Maybe it is massive anxiety which has caused some sort of nerve compression and constant examination of the groin has made the skin feel sticky and loose? I can't believe it but there doesn't seem to be anywhere else to go to get a diagnosis.
Love an update from anyone else.
I will try pregabalin for a few weeks and see what happens. Then I think its a case of living with it and hope it clears on its own accord.
cheers
J
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To all of the above:

I recognize that this thread has been dead a long time, but it is the closest thing I have found to a description of my symptoms, and I have been looking intensively (and frankly suffering intensively too) for over seven months.

Is there anyone out there who can tell me more about what this might be?  Have any of you ultimately ended up with a diagnosis?  Have medical advancements given this a name?

I honestly don't know how much longer I can handle this.  If I could at least find some understanding, I feel like I might also at least if d some peace.
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My bad, it has NOT been dead a long time.  I just hadn't read to the end.  Now that I have, my questions still stand.  Thanks and apologies for my confusion.
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i have pain in the end off my penis it feels like pins going in to it. its doing my head in dont no what to do they think its in my head can somebody help me thanks
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Guys,

As some people scare here about genital herpes (HSV-2) here,  unless the repeated tests of HSV-2, especially the IgG is negative, and with no lesions or outbreaks,  you can certainly rule out HSV-2 not causing the unilateral genital pain.

If all the blood tests for STDs, urine culture, semen culture, etc are clean, and none of the antibiotics work for you, it is more likely to be non bacterial prostatitis aka chronic pelvic pain syndrome (CPPS) aka pelvic myoneuropathy.

Also you need to make sure you clear for any nerve impingement causing this pain.

Involuntary muscle contraction from childhood, due to fear, abuse during childhood, suppressed inner feelings, constant guilt, etc can cause the pelvic floor muscles stay in chronic for several years, may cause inflammation, and manifest as the pelvic pain at some point of life.  

http://www.chronicprostatitis.com/myoneuropathy.html

When all the tests are normal,  try reading the Stanford protocol headache in pelvis book by Dr. David Wise.  

Find a good physiotherapist for myofascial trigger point release,
Do stretches, etc.

When I find some free time I will start a new topic and write my success story, and how I fought this pain and got out it after 2 years.  





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Herpes iGG tests are not 100% accurate, and they seem to vary by the person. One possibility is that some of us actually do not even produce the antibodies. I am living proof that these tests are inaccurate because my girlfriend tested positive for hsv-1 her first time (and we both show very mild symptoms of oral herpes so a false positive is not in question) and I have tested three times over many months and I am still negative..

I believe strongly that these symptoms are herpetic- i've been researching this condition for months and it's no coincidence that not a single virgin has this condition and that most people report symptoms about a week or so after oral/sexual encounter.
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I can also attest that the IgG and even the Western Blot are not always accurate, especially for HSV1.  I've had 13 negative IgG tests up to a year out, and a negative Western Blot just past 4 months.

I finally cultured positive a year after my exposure to herpes, with no other exposures in the meantime.  My final IgG test was still negative.

I had very mild symptoms that everyone said "was nothing suggestive of herpes".  My first noticeable blister was at 11 months, and it was tiny.
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But, its also fair to say everyone who has these symptoms show negative for  herpes when having a blood test done. yes it could be some weird condition where some people are affected in this way but to show negative for blood tests, no visual symptoms and the unusual symptom for herpes of continual burning seems pretty far fetched. Especially when every medical practioner we have all seen have said categorically its not herpes.
Yes, it does seem no virgins have this problem. It also seems that no one in long term loving relationships have these symptoms. Nearly every poster on this matter begins with 'i had sex with someone shady/call girl/not my wife' Which make me feel that it is anxiety based due to this worry about what we did.
I have started to feel much better the less i think about it and the more I focus on other stuff and stoop continually thinking its herpes.
I am still worried and still puzzled how it can cause this and last for so long...I also believe if it was herpes, the original posters would be back saying 'I told you so, I knew i had something and everyone said i was mad' (I know i would!) The fact they have disappeared makes me think it gradually went away.
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Yep, I was told continually it didn't sound at all like herpes.  I also have had 14 negative blood tests and nothing really typical until almost a year after exposure.  But I had a positive hsv1 culture.  It doesn't sound far fetched to me when I consider my symptoms and result.
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Hey man. I definitely have folliculitis on my inner legs near the knees almost every week!. Look at my post history to see other symptoms. Gonna go to my 2nd urologist in a year and a half next week :(
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Thanks what I'm thinking too man but my doctor said that candida (fungal infection) can only produce those symptoms in immune compromised people. Did you ever find out for sure if it was fungal through testing?
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Hey JJ310, I never found out through testing but I am 99% sure it is a fungal infection. Do not listen to doctors if you think it is a fungal infection. For whatever reason they pretend it doesn't happen unless you are immunocompromised. I don't know if it's because all the antibiotics they prescribe cause some of the infections or because it's not in their literature, but they will tell you it does not happen to healthy people and they are wrong. I spent a lot of money and was treated like I was an idiot by most of them. All I can say is if you think it is some type of fungus, stay on the diet, try Threelac or anything antifungal and see if it works for you. You could try getting Diflucan or something similar from a doctor but I wouldn't put a lot of stock in anything they have to say. I saw about ten doctors and only 2 of them said it could be a fungal infection and only one prescribed me Diflucan. I am 90% better after three years and feel like I am very close to being 100%.
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i too have a similar symptoms, very itchy and becomes painful if i masturbate  . I am am virgin. I know how it started when I was in boarding school, we used to use common bathrooms , I used to touch my penis(foreskin out) to walls for fun. suddenly one day i got it.  It was in a third world country, the doctors are useless. So i have to suffer with this for years. I had rashes when i initially got it but local doctor gave me clotriomozole this gave me some comfort, over the years the rashes went away, but the itch and pain are still there. Finally i ended up in US. I showed it to a dermatologist. He said it's an inflammation and gave me desodine. This made my life worse started getting pelvic, abdomen and back pain. So I decided to go to big hospital, they said these pain and penis abrasion are unrelated and started treating me. Ran through all the tests and found nothing. As usual my final stop is neurologist whom I may be seeing in while.  My urologist says he doesn't know what I have and my dermatologist gives me anti depressant medicine. I am not sure If am not expressing them correctly or I got the weird thing in the world. I am going change my primary care physician and going to beg new one believe my story and try to treat me in that lines.   This is one of the top hospitals/universities in the world. So I am losing the hope slowly and may have to live virgin for rest of my life or sometimes i feel there is no point in continuing. worst part of this whole thing is u have act normal as u can't say and no one understands what r u going through.
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In relation to original comment posted by confused and fairly similar to everyone else. Since the start of the year I've had a very heavy sensation of the testicles and the scrotal skin does not stop moving. You can see the movement of the skin,  looks like worms are wriggling over my testicles, not cool. Can also feel like a wave of tingling come over the testes and a lot of discomfort in the perenium. Especially when I'm sitting it feels like my testes are becoming bruised and I can only sit for short intervals. Can never get entirely comfortable either in boxers or underwear. Have a prickly, clammy sensation on the scrotum and down the legs where the scrotum rubs again, a generally uncomfortable irritable feeling. Feels the best when I wake up but then the movements start soon after. I've been to ample amount of doctors and specialists who all are unable to give me a diagnosis. Very frustrating and uncomfortable. I showed the movement to 2 different urologists who both mentioned the movement is the cremastric reflex muscle and dartos muscle but couldn't provide explanations. Tried antibiotics, creams, pain killers (giving Lyrica a go at the moment, not working yet, 3-4 weeks of use). Negative to infections, been treated from everything from prostate infections to nerve blocks. If anyone has had any luck with treatment or possibly an answer I would be very eager to hear back, thanks.
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Guys:

I am at the end of my rope.  After 1 1/2 years of test, MRI's antibiotics, creams, gabapentin, etc.  The genital pain will not resolve.  I have had 10 HSV test including a Western Blot.  All came back negative.  I went to the Mayo Clinic (they had no answer and Mayo is rip off if you ask me).

Please post in you find an answers.  I have sunburn type rashes on mu butt, constant nerve pain in my sacrum and my penis.  I also felling a burning sensation in my left foot and behind my knee.  This all started 30 days after unprotected sex.  There is no doubt that my exposure started this madness.  Please reply.  I am about to quit my job with no where to go and limited financial resources.  ThankA
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You guys all have a bad yeast infection called Candida http://www.stopyeast.com/eyeproblem.html Caused from a serious case of antibiotics that kills the good bacteria allowing the yeast/bad bacteria to overtake these areas and manifest throughout the body resulting in hyper allergies in the eyes, throat, stomach, reflux, bloating, yeast infection, consisting of an ichy anus, numb penis.. I noticed I had it after being treated for chlamidiya, I was back to normal for a day and then it went numb. I jumped online and researched. It all leads back to this. People have it for 10 years before they cure sometimes. Mine has been off and on for the past 8 years since in hospital on serious antibiotics. I always thought I had an std, then it would go away.. depending on my diet. Its tough to get rid of but there is some good medicine online that can cure you. A naturopath is your best bet though. They know all about it and you can be back to normal in a few weeks. hope taht helps.
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see below
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I can't believe this thread is still going, I reviewed it one and half years ago when my symptoms, like everyones here, first started. Been through the run around of doctors in all related specialties, took antibiotics, antivirals, std tests out the wazu, MRI and diagnostic testing... Nothing seem to help except time thankfully mine has been getting better but very slowly. Finally started on cymbalta and gabapentin for neuropathic pain along with pelvic physical therapy from specialized PT this finally lowered my symptoms by 70%. Since I have been continuing his treatment but haven't gotten significantly better, I did take a month of antibiotic from urologist cipro or similiarities and most symptoms disappeared but returned shortly after, this also. Happened when I took similiar treatment on long term antivirals at high doses.

A answer to this may be that antivirals and antibiotics have anti inflammatory properties which eleveate the symptoms rather than thinking I have a bacteria and viral infection at the same time, Atleast I hope not.

I may try a homeopath and see if that helps, I am seeing a pelvic pain specialist doctor recently bu hey as well don't know the cause of the pain. Mine also started after a protected encounter with sex worker, btw.

Anyone that had this and it finally went away or is more than 70% there please chime in with any options are greatly appreciated.
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Mine has slowly, ever so slowly, gone away over time.

Mine was found to be HSV1 by swab.  I've never been positive by the blood test, even out to a year, including Western blot.
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Did you have a blister type outbreak. Where was it located? Was it the only outbreak you have ever had?  I have red patches on butt never a classic blister.   any info is helpful.   Exactly how long is slowly went away?  Months years???

thanks for sharing
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I never had a blister type outbreak.  I had a rash and a lot of redness.  I fought for 11 months to figure out what it was with all doctors saying it definitely wasn't herpes.  All the medhelp docs told me nothing was suggestive of herpes as well.

At 11.5 months after exposure I had a surgery, all of a sudden about 4 tiny little red bumps developed, think size of a pinhead.  I quick ran in to the doctor to get them swabbed, they came back as HSV1.

It's been the only time I've had something physical to have someone really look at, otherwise it's just been sensitive skin and all the stuff people described in this post, to a T.

My blood tests are negative, including Western Blot.

It's coming up on two years now since exposure, around the one year mark is when it slowly started to get better.  Some days it still annoys the crap out of me though.
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Thanks.  I fear that I have exact same situation.  I have negative WB and close to 8 hsv test.  One was low hsv1 positive but since WB came back negative my ID doc says it was a false positive. I have red inflamed skin in crease of buttocks that fades from time to time (it is now like a red sunburn type rash)  It hurts to sit for long period of time. The nerve pain in penis is the killer.  I have been fighting this 19 months now

Where were your small bumps located?  Has anything helped.  I am daily acyclovir Gabapentin and amatryptyline.   I don't know if I will ever get complete relief.  Good luck and thanks for sharing
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Time is the only thing that brought relief for me. The small bumps were on my penis, but I've had red sensitive skin moving around the dermatome.
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Avatar_m_tn
This is my story. Had protected sex with a woman with HSV2. 9 days later started itching in the groin area and constantly self examined my penis, looking for lesions. 5 weeks later developed a burning pain in the penis, heavy feeling in my pelvis, and difficulty urinating. Have had negative HerpeSelect HSV2 tests at 8 and 11 week post exposure. The pain in the penis is horrible. Starting to believe this is all related to herpes. Again, never had any lesions suggestive of herpes. Saw an STD doc and he reassured me it was not herpes. Don't know what to believe. Maybe I should just concede and accept that this is herpes and start antivirals.
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Avatar_m_tn
So I had a small bump in my pubic area (not characteristic of a herpes bump more like a pimple) I popped it and it had puss & blood in it & it immediately start going down/healing. I also have two very tiny white bumps right below the head of my penus. They are exactly the same size and side by side.  They don't hurt at all but they have been there for months. I also experience periodic minor itching & mild chronic burning in my penus that has been going on for 6 months plus. Any thoughts?
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Avatar_m_tn
im experiencing all the same symptoms. did the diet work?
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Avatar_m_tn
did this work? I currently experience this 24/7!! Thank you
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Avatar_f_tn
Hi good to know we not alone here I to had unprotected sex 19 months ago woke in the morning with burning feelings but cold to touch.thought it was thrush creams do help a little but comes and goes. Got a little pimple at bottom of penis 12 months doctor said herpes but 3rd test negative for type 2. Gave me a week supply of anti med didn't help and pimple went in couple days it was in a hair which I have always got occasionally so don't think it related.I still got stinging inside like wee still in there and it feels cold.the skin around my foreskin is dry and red.the hair follicles on my balls are red and raised from time to time but no rash or dishcharge.have had std tests 4 Times all good and also had female partners who never developed anything.I think it some kind of infection but any help
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Avatar_m_tn
8 months down the line and feeling kind of the same in a progressive way.  Started off with the penis pain head and in the shaft burning sensations around my groin and stomach pain that over time has led to thw bain bottom of my tesricles and aroind my bottom and thighs.

No rash no spots to physically see.  

Been treated for ins and now just been put on a low dose of anti depressents which they use for treating neuropathical pain - although have from reading thinga like this wont help

Been tested STDS bur nor herpies (herpes)....may go see about that.

Qyestion if anyone following this - has anyone ever had any problems with passing something on to a partner in relation to this?

One stupid mistake!!
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Avatar_m_tn
hi, i am experiencing the same burning symptoms as you, did u ever get to the bottom of your problem, regards stevie
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Avatar_f_tn
I've had all these symptoms but after protective oral sex. I feel it's a mystery virus passed through saliva and it affects the skin and then, nerves. I've had itching, pain in legs like insects crawling, a feeling that from the waist down I have sunburn or the flu. Small nettle-like stings around the knees down to the feet. Back pain too and a feeling that my muscles tighten even. I don't feel this is a typical std and as I say, passed on after oral sex with protection.  Doctors and gum clinics I feel also don't know enough about it and think it was in my mind.  I've had it 3 times and each time after protected oral sex. No more sex for me if this is what happens. First time was 5 years ago and I did feel much better after a number of months - especially after being told it wasnt hiv....
Andrew
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Avatar_m_tn
The diet did not work completely. I keep going off of it and feeling sick again. It has been 3 1/2 years and I'm still suffering. I am definitely better than I was but still not feeling great. I am certain that it is a fungal infection but nothing gets rid of it completely, I'm starting to think there's no cure, only treatment. hopefully you have better luck.
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1926652_tn?1392027883
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.
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Avatar_m_tn
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.
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1926652_tn?1392027883
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 (glands) doesn’t engorge during erection.
Glans (glands) doesn’t respond to temperature.
Prostate and genital tightness/pulling feeling/unable to relax genitals.
Skin paraesthesia.
Pressing/knawing in glans (glands).
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 (glands) due to lack of blood flow.
No response when contracting pelvic floor muscle.
Sticky top of glans (glands), 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 (glands), 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.
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Avatar_m_tn
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
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1926652_tn?1392027883
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.
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Avatar_m_tn
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.
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1926652_tn?1392027883
Thanks for the reply.  It's good that you managed to recover from your HSV1.  It sounds like it was a one-off effect from your initial exposure, whereas mine seems to have degenerated progressively over time.  The most frustrating thing for me, is not finding medical practitioners who accept that HSV can cause my symptoms.  The worst example of this has been when seeing infectious disease specialists and urologists.  They both just regard it as a skin vesicle issue and nothing more.  The urologist in Singapore told me it was "guilt", as you mentioned in your earlier post.

I actually took downloaded copies of case reports, showing Elsberg Syndrome and Herpes Radiculopathy etc. to my urologist and he replied that they are just single cases and aren't to be relied on.  It's so frustrating that they won't educate themselves beyond their medical texts.

Presumably these case reports have been published by exceptional doctors in the past who have found patients' symptoms noteworthy and prepared the information for the benefit of others.  Why, I wonder, don't we find those doctors in general practice?  Whenever I visit them and want advice on what I can do to get over this, they just want to get rid of me.

This has left me no option but to self-treat myself.  I am getting my pain and several other symptoms under control, finally.  Valacyclovir is available here over-the-counter, so apart from the huge cost, that's no problem.  However, this only resolves pain and stomach tension for a short time.  The real benefit I'm finding, is from taking the following:

1. Tagamet - anti-acic medication which improves the immune system (off label).  This has a noticeable effect minutes after taking it.
2. L-Lysine, several grams per day.  This has more or less resolved my genital numbness.
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Avatar_f_tn
It's been 7 months since relations with female and still trying to diagnose possible same infection.  Symptoms:
First month:
   Severe lower back pain (not like usual citric )
   Pinching pain on/in tip of foreskin
   Sharp pain in left butt/hip bone that made me limp
   Left heel bone pain that made it difficult to stand
Second month:
   Small raise hard lump on pubic area near upper edge of hair line.  Would not go away two weeks later, applied vinegar and immediately opened into a sore. (Not HPV)
   Feeling of bug bites and needle stings on scrotum Third month:
    Difficult to sit.  A lot of butt bone pain
    Random penis pains
    Feeling of burning skin/stings on groin folds
    Back pain/herl pain gone.
    Irritated inner thigh
    Tip of penis swelling and pain
    Under arm aches/pains, not painful but sudden onset
Fourth month:
     Irritated inner thigh cont
     But bone pain cont
Fifth month:  
     But bone pain subsided mid month
     Started feeling calf aches like dehydrated
     Urethra started burning(again) with mild head irritation
     No more under arm aches.
Sixth month:
     Continue with mild urethra/head discomfort
     Pain and discomforts on base of scrotum folds(very    
     noticeable) lasted all month.
     Calf ache continues
Seventh month:
      Groin fold pain/discomfort subside but occasionally
       returns
       Scrotum bites/stings/pinching returns (mild)
       Urethra and head discomfort persists.


  There has been tree Dermatologist, one urologist and three blood/urine analysis.  HSV 1 pos 2.96 LGG at fifth month but had a cold sore on lip during blood sample collection.  
   The most frustrating thing is having to wait for diagnosis by swab during the outbreak that never comes.  Had the small pimples here and there and on backside but dermos tell me it's foliclelitis.  

  at this point SHOULD I ASSUME I AM HSV1 gen Pos?
    
    
    
    
    
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1926652_tn?1392027883
I'm sorry to read your list of symptoms Serg, as they are almost identical to my own, and I know what my own suffering has been like for the past several years.  They have caused much dismay.

However, in many of the medical articles I have seen, which explain postherpetic neuralgia, it suggests that at the onset of viral symptoms, one should take the acyclovir-based drugs as soon as possible.  This, according to research, is crucial to limiting the subsequent neuralgia that happens after viral activity.

I never did this because in the early days, I had no lesions to indicate herpes activation and went for several years before finally putting all the facts together to arrive at the conclusion.  I was IgG positive after testing and then more recently found that it was specifically HSV1 (>3.5).  I confirmed by HSV condition by self-treating with valacyclovir.  I found that it reduced all of my symptoms, albeit briefly, and still continues to do so.

If it provides you with hope (and I certainly want to give you hope, rather than bad news), I have also read that in time, the postherpetic neuralgia reduces and disappears.  In my case it has not done so, but I think my case is quite extreme.  I have found that each time I suffered viral activity, subsequent nerve damage took place.  If you can take acyclovir, or better still, the pro-drug valacyclovir, whenever you think you are about to see viral activity, then I think you should be able to overcome it in time.

I have just undergone four weeks of ozone therapy by blood autohemotherapy, together with daily injection of ozone gas into the dorsal ganglia region (where herpes resides), both in order to attempt to kill off the virus.  It is too soon to say if it is working, but during my first few days' treatment, it helped an awful lot.  After the first few days, some of my pain returned.  I need to wait to see, and if necessary, continue treatment.

I wish you the best of luck.  I have accumulated dozens of medical articles and scientific studies that confirm herpes simplex does not always remain dormant and in fact continually changes the nerve sensations.  Therefore please contact me if I can be of help!
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Avatar_f_tn
Thanks for the words of encouragement lovemistake.  Best of luck with your procedure and Please keep us posted with your status.
A bit of good news with my symptoms is that most of the lower body aches have subsided.  No more heel/back pain for now.  The pains in the folds of groin area have subsided but still there if I think about it.  Had biopsy done on a patch of raised skin (bump) on thigh.  Dermatology results are eczema/dermatitis.  Not what I was expecting at all.  My biggest fear was HPV.  
A bit of bad news.  
   Received urine/blood labs from urologist.  
       Holicobacter pylori positive
       Chlamidia pneumonia >18.5 level
       Loosing large amounts of hair on scalp.  Not sure if its stress related or thyroid issues due to aching throught.
       Still getting folliclelitis on inner thigh.  Baby powder helping some.
      Not sure what to treat first anymore.  Don't want to take valtrex while taking antibiotics for pneumonia.  Also,  don't want to go to Dr with hair issue, he already thinks I should be on psychotic medication.
      I have been following another thread that is extremely related but they have taken discussion to a higher level.  Great read for all of us.  
      I am extremely concerned with a comment by a member by the name of Dammed02032012. He states that he transmitted the virus to his kids even after making an effort to keep his distance.  Hope he replies to my question.  

http://www.herpes-coldsores.com/messageforum/threads/for-everyone-who-has-had-negative-hsv-blood-test-results-but-positive-swabs.55689/page-28


  Still waiting for something to swab.  I will keep posting.
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Avatar_f_tn
Just got thyroid test results,  all THS levels normal.  I guess hair loss is due to stress from what I'm told.  The fact that scalp tingles all over I'd making me think its fungal and I may be chasing a fungal infection like JSULL.  I will keep you posted.
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