4 Months of Penile Pain, Irritation, Dribbling, Rash - No STD or Diagnosis. Help!

Any likely cause in your mind? Or did it just start randomly? 

I think most have not but I’m not sure. I have not. Did you have any outside of marriage sexual activity? It seems like there has been a trend of either oral sex or bicycle (or both) riding as a cause among many people with the same complaints. 

No, I don’t have... I got this after an oral sex which was just supposed to be a massage.. I haven’t had sex since.. it’s been 6 months l.. luckily wife understands because I told her the truth after what happened... I had to because I dont not want this terrible thing to be in her also.. checked 6-7 times and it’s all negative.. I got tested for Uteplasma Parvum during the first test after the encounter which was 3 weeks and was treated with antibiotics.. tested 4 times after that incident in 4 months, saw different infectious doctors, 3-4 urologists and haven’t been diagonised with anything expcept for HSV 1 along with UP while testing 3 weeks after the encounter ... haven’t had any cold sores.. going to another hospital again tomorrow to see new doctors .. it’s a terrible thing .. I used to be happy and used to do a lot of adventures ... right now no energy to do

it 

I am still waiting on the Western Blot Herpes results (should be coming this week) but I am definitely starting to believe this is all due to HSV 1. I’ve been tested 3 times prior and all of those were negative, but I finally had a red spot on the shaft (not really a lesion) which then scabbed over within the past month. Seems like almost everyone’s symptoms started after oral sex and likely we are the unlucky ones to 1. Get hsv1 genitally and 2. Have it cause nerve damage. This is probably the worst answer to have as it would mean that we are infectious and have permanent nerve damage......so I truly hope somebody finds a better answer. But, I think at the moment it is what seems most likely. 

Hey Mac, when you say 'except for hsv1' do you mean that you actually do indeed have hsv1'? If so then doesn't that answer the question? Sorry just double checking. There's clearly alot of anxiety and panic about this, hypothetically if it's HSV1 how do we treat it? I mean at least to prevent further nerve damage? I've never had a cold sore in my life but granted this could be some weird hybrid... although we're spread all over the world so maybe not? Surely there'd be higher reported incidences in certain population pockets? I go back to the fact humans have never been so promiscuous as until now so either this is A) new B) just under reported or C) a minor trivial thing in medical professions eyes and therefore not even worth treating (I think my psychological suffering is worse than the symptoms: not knowing what it is and the what ifs this entails. I'm thinking urology is my next step, derms are pretty useless imo unless you needed a mole removed. Has anyone seen a really good uro who actually postulated a few differential diagnosis? Unfortunately dudes this could be a manifestation of the litigious society we live in, doctors are afraid to investigate things outside of the textbook less they get sued for malpractice!!!

Pete,

I’ve been seen well over 10 times by the same urologist at the nearby university’s hospital and medical center (top 5/10 ranked in urology and as a whole). I was sent there after stumping 3 urologists previously. They started with retreating me for bacterial prostatitis (month of cipro), then switched to treating for prostate inflammation (meloxicam, prosta-q, flomax, various lidocaines and other numbing topicals such as neosporin with lidocaine and non-steroidals), and have now moved to nerve pain medications (gabapentin). I’m seeing a dermatologist today and am scheduled to see a bladder specialist as well as a neurologist. On top of that, they referred me to a pelvic floor physical therapist with absolutely outstanding reviews based on what I’ve seen online. 

They definitely believe me and are 100% trying to help. The urologist that I see each time has said they discuss my case at their weekly meetings (among all the urologists there at the department) and none of them have any ideas. 

Please ensure you let us know Allan, though I'm sure you will. Are there any tests i can do to rule hsv in or out? As ive stated before I'm inclined not think it is but there is a line of logic to suggest that its not impossible from brief reading I've been doing...but again apparently 1million people get it every single week and 3.7billion people have it...so to say we are the unlucky ones if there are only a handful of dudes with this is a f****** understatement lol brief musings some one on here tried acylovir and it made him worse! Unfortunately I'm a candidate for a few things; tight clothes for few weeks during hot weather, intensive intercourse, cycling and my prime suspect inserting numerous creams into urethra.... however oral did occur so could well be relevant

Waiting on my last reply to be moderated apparently but I detailed out basically all the steps my urologist has taken since April. I’ve been a patient at one of the top urology medical centers and they’ve definitely been trying to help.

I’m also in the same boat for a lot of those: tight clothing, rough enough sex to have 2 condoms break, and being stupid enough to get soap into my urethra thinking it might help prevent an STD after a condom break even though I know better. Panic in the moment I guess. 

Yes, I’ll be sure to let you know about the test results. 

No, I have not had sexual intercourse. Every doctor I talked to said that they felt it was okay to have intercourse but I could not do it. They could not feel the pain and did not have an explanation for me. I was concerned that I was dealing with a potential infection and I let a girl go over this. 

For HSV-1 you take medication (Valtrex) to help reduce outbreaks, until your body learns to fights off the infection and it occurs less. There is really nothing that you can do about it. It does attach to the nervous system. 

What will be difficult is to figure out if your care of HSV-1 (assuming your are positive) is oral or genital (or possibly, but super rare both). 50% of people ages 14-49 have HSV-1 (gets higher with age). It is really common - so in the absence of lesions how will a doctor be able to diagnose G HSV-1? 

Pete,

Got my western blot results back and I’m negative for HSV1 and HSV2. They said to expect results in 2 to 3 weeks but I got mine in less than a week. I’m guessing that means it was a definitive negative. I believe 3 different scientists look at your blood sample and if they’re unsure, they actually ask you to send additional samples. With that result and 3 negative IGG tests, I’m going to drop herpes as a potential cause unless anything comes up to make me think otherwise. 

Hi Allan, I'm happy for you...unless of course you finally wanted an answer to all this!! But I'd consider that a good outcome, yesterday was really bad for me but I haven't been sleeping well recently and masturbated several times to try to get to sleep so as you said to Steve it probably provokes some nerve response or something. I've just scratched the surface in searching for online answers outside of this forum and of course my anxiety levels are now through the roof probably not helped by my increased coffee consumption (you may remember previous posts of mine calling for us all to chill out and come at this from a different angle but I'm a reluctant convert to infection now but I'm not thinking straight) I recently ended things with my girlfriend, this was probably a mistake as she was genuinely worried about me and felt guilty since it started from our sexual activities but like what more can a fella do after a clean bill of health from STD clinic? Anyway urethra bad enough today again but dull ache under teste in perianum area is also present which is easier to deal with as it feels more muscular in nature. Let's keep fighting dudes, I've discovered that the guy who invented Viagra sees private patients in my country, figure he probably knows more about penile nerves than most people so I will inquire, thanks for updates

Thanks Pete. While it would be good to know what is causing my issues, perpetual atypical symptoms caused by HSV is definitely not something I want. I don’t remember, were you thinking this was from oral sex (if caused by sexual activity). Was your girlfriend sick by any chance?  I’m wondering whether even just a flu virus could have somehow caused this issue. You’d think that if something like that is even remotely possible, it would be widespread.

Also, what part of your urethra hurts? I think before I had pain along the entire shaft, but now it’s exclusive to the part of the urethra encompassed by the head of the penis. 

Hey Allan, my meatus was markedly swollen in July when this first reared its ugly head (gross pun intended) but my belief was that this happened when I applied 4 different types of steroid cream (and NSAID cream) to treat a few blemishes (that's literally all they appeared to be) on my foreskin and glans. The blemishes went quickly but the urethral lips have sort of stayed swollen, I'd a few weeks of relief but it's gradually been feeling worse. I did feel like it was along the tract of the urethra at one point but the pain seems to solely be close to the opening, the glans is discoloured but red around the opening. Urine just used to get stuck and dribble but not now it burns a bit too. Oral was 10 days before I noticed blemishes, sex was like 4 days, throw in a 2day drinkfuelled music festival in 30degree heat and 40mile bike ride inbetween. Gum clinic in early August all good. The reason I had so much steroid cream is because I was being treated for dermatitis on my scrotum at the time for 6months duration ( I tested clean to STDs at that time too) Other co morbidities include chronic back pain and anxiety but non-medicated, I've actually ordered a pain killer called PEA seems to be promising for penis nerve pain, I really hope it works! Sorry for long spiel here

Sorry forgot I had a sore throat for about 3 weeks too, fine now

Pete - I read an interesting article on PEA that I will try to  find. In summary, there was a group of doctors who found that it was a good alternative to the neuro drugs that are often given and it worked in the medical study. The patient was also incorrectly diagnosed with CPPS and it ended up with a correct diagnosis of pudendal neuralgia. Many symptoms sounded the same in the article. 

Yeah I'll give it ago. I saw the guy who invented Viagra yesterday. Categorically ruled out all forms of herpes, said my penis looks normal and instigated the role of anxiety (did more urethral swabs and HIV test; neg) he's a world specialist in infections diseases and based on what I told him (the truth) said I was 100% non infective to others, still in pain though. Have a weeks Doxycycline to try, heres hoping

Pete -

Did he suggest any type of nerve, trauma or blood flow issues - based on your symptoms? Your tests have clearly ruled out HSV (and symptoms typically come and go, which you don't have). Did you discuss HPV infection with him as well?

If you don't have discharge, it is not likely a bacterial infection. 

I didn't get saying as much as I would have liked, there's a certain amount of deference when in the home of a big shot! However he listened to my suggestions before dismissing them, said in 99% cases nerve damage is result of trauma. Yeah I'm doubtful about bacteria, I've had 2 clear urethral swabs, but he's thinking I've put something nasty in there via the cream as a medium. Explained the urine dribbling too, he was expensive but gave me the option to ring him if I'm not better soon so at least he believes me! Didn't discuss HPV but he's like an expert on that too lol published hundreds of papers on sexual medicine

Allan,

I wouldn’t completely rule out HSV yet. There have been cases of people also testing negative on the Western Blot but still are positive for HSV through swap samples. The blood tests for HSV just plain suck. Part of one of my theories as for what is causing our symptoms is something called IGG deficiency... which is where you body fails to produce that particular antibody type. This is the antibody marker which is specifically what the blood tests are looking for to see if you have had an immune response reaction to a particular virus. I believe that a deficiency of that antibody could allow the normally annoying HSV virus to cause more damage than is typically seen. More so, I believe it to cause a sensitization of the dorsal root ganglia and or the actual nerve fibers innervating the areas that bother us. Again... I have searched high and low and nerve issues seem to be the factor here that at least explain my symptoms. Any thoughts? 

Doctors are too quick to rule out HSV just because symptoms don’t line up with 99% of people. Everyone is different. When looking at the symptoms we all have, it is clear to me that irritation of nerves of sensitivity of nerves can cause most of not all of our symptoms. Additionally, HSV is a virus of the nerve fibers. There are documented journal articles of people suffering neuralgia and other painful symptoms as a direct result of HSV. There are also documented cases of HSV-1 causing post herpetic neuralgia is the trigmental nerve in the face. I really think with our problem, this is a direct result of HSV or HPV... even in light of negative test results. I also Test negative for HSV via the IGG testing, however I have had herpetic symptoms previously that cannot be dismissed as anything except HSV. I unfortunately didn’t recognize it until it was too late to get swabbed. 

An interesting theory. I guess not impossible. I’m in no way arguing the nerve involvement with all of this. In fact I agree with that completely. However, if we truly had some sort of immunodeficiency related to herpes, I think it would regularly present itself on the skin as well (rather than just constant nerve issues). I believe people who are positive for HSV typically have an outbreak when their immune system is weakened (a cold or high stress or lack of sleep). 

Do you have issues when laying on your back? For me, the glans is virtually painless when laying down. This leads me to think more along the lines of a compressed nerve or something similar. I’d think that true nerve damage due to infection would be constant regardless of orientation.  

Hmm, did you see my post about getting an MRI of your lower lumbar area and sacral area of the spine? I always feel like my symptoms are lessened when laying down... but more so just because I’m not moving. The way my symptoms presented themselves both times leads me to not think of a spontaneous nerve entrapment. Please look into getting an MRI of your sacral area to see if you have any cysts such as Tarlov Cysts that could be putting pressure on the nerve fibers going to the Pudendal. 

Dudes, this is all interesting stuff. My thoughts (from selfish perspective: sorry) I've just seen one of foremost STD experts in the world (former president royal college of sex med, editor of authoritative STD journal, inventor of Viagra and scourge of email spam folders) he told me manhood looks normal and my symptoms are common, what more can I actually do, like seriously?! Human nature is to focus on the negative, which probably explains why I'm inclined to add more weight to the pseudo stuff we are all proposing than to a bona fide expert. That said I actually don't see myself getting better any time soon. I have had chronic low back pain for almost a year (there COULD be nerves at play) but had normal x-rays (I know-not comparable to MRI) but that predated any sexual contact. I've actually been in constant pain from Wednesday (but masturbated excessive on Monday: too much info lol) but current plan is to wait for a week then contact this doc again. Of note I also have a small hydrocele and variocele in scrotum but dude ruled them out as source. Probably haven't contributed anything useful there but I really hope there's an answer to this someday.

Pete,

Have you ever tried any pelvic floor stretching exercises? Just wondering since apparently there’s nothing wrong with nerves. Lower back pain can be a symptom. 

Also I’m just wondering, has anyone ever tried to treat anything fungal? I generally find that the less sugar I eat, the less symptoms I have. That could just be in my head though. My doctors initially said that there’s no way it’s fungal but are now willing to give me a prescription if I want since nothing else has worked. 

My diet is ridiculously high in carbs, I've very poor flexibility and guilty for caffeine, alcohol, stress, sitting down all day at work. That said I'm fairly fit (ran near pb parkrun today) and in good shape. I ended my relationship recently which was probably stupid since that girl accepted my probs even after I half accused her of causing them! I need to commit to the hip stretches properly, the fact it hurts when I do is reason enough really aside from the penis pain. Does anyone take any pain killers or analgesics? Steve does gabapentin work? I might ice my balls and see what happens lol (joke)

Oh wow gotcha. I guess I may have this significantly worse than others. I can still barely walk more than 2 or 3 blocks without the pain at the tip of the penis being too much to bear. I literally bought a treadmill and use that without briefs/boxers or shorts. 

My diet prior to all this wasn’t too carb heavy but I definitely ate my fair share. I was pretty health conscious when it came to food but I was at about 3 cups of Starbucks a day and drinking heavily 2 or 3 times a week. 

I’m also super tight (especially lower body) and always have been. Been recently really trying to do stretching. It supposedly takes a while to see any kind of results though. 

I think Allan is on Gabapentin. I took a different drug and I did not do well on it. 

Allan - is it working? Any side effects?

I am already one week with no symptoms at all, what I did was using an hair dryer on my penis head every time after I shower, i am not a doctor but it seems to work for me so far. 

There is a high likelihood that we’re not all suffering from the exact same thing. If this truly ends up being the fix for you, then that’s awesome. I’d think that the only thing the hair dryer could help with is for some sort of fungal infection? Essentially just keeping the area as dry as possible.

Have you not had urethral problems? Either urethral pain or urine dribbling? I’m guessing not as I don’t see how a hair dryer could help with either of those. 

Curious to hear back. 

No noticeable side effects for me. It’s no cure but it does seem to help to relieve some of the sensitivity. 

Hi Allan,

i have the same symptoms and tested negative for STDs, have you managed to get to bottom of this problem ?

Many thanks

hey there Marc, I have the same symptoms and tested positive for UP and already had HSV1 although i truly believe the HSV1 symptoms are unrelated to this.

my doctors said i was good and i had sex with my wife then found out 3 weeks later i have UP. She now has an infection

I've been tested for ureaplasma (looking for both variants) even when all my symptoms were at their worst and came back negative like everything else. Unless someone came back positive, was treated and the symptoms cleared up I'm not convinced that is the cause.

Have you been treated for Ureaplasma Parvum?