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Avatar universal


Hello, I have had a very rare chronic STD for 10 years and as yet haven't had a diagnosis.

I contracted the condition after unprotected sex with a girl that I knew quite well.

Within 48hrs of intercourse I came down with what felt like flu, very severe symptoms, extreme nausea, swollen glands in the neck and very discoloured glans of the penis (pale and shrivelled).

The glands in my neck went down after a couple of weeks but the genital symptoms persisted and have never gone away.

I also have a number of symptoms that I have to deal with everyday as a direct result of this infection. The list is a follows

Chronic redness and burning of the penis with sticky glans and strong smell.
Burning during or after urination and an inflamed urethra where trapped urine leaks out after urination.
Rectal moisture & secretions and burning with an unpleasant sweaty smell.
Profuse sweating from the groin perineum and buttocks.
Unusual chills and shivers all over the body with unusual pins and needles sensations in random places all over the body.
Occasional feelings of nausea, headaches behind the eyes and unexplained sweating of the body.

This condition may sound extreme or an exaggeration but unfortunately it isn't. I also know that the girl had this condition too as it appears it was common knowledge amongst her friends. She also have a problem with profuse vaginal bleeding which no doubt was a result of this infection too.

My question is what do i do? I really want some answers and help.
Im 31 now, everyone around me is getting married, I've lost my mojo completely, and have to self diagnose as it seems Drs simply don't know what this condition is yet.

I have seen many very senior specialists and the only person who recognized this problem was a dermatologist, in fact he expected me to have this condition before i showed him my problem.

I've been told my story sounds similar to herpes except after the initial illness it's different. I really want to isolate the pathogen and if nothing else help and support people in my position. I keep praying that one day anti virals will solve this problem.

19 Responses
1318465 tn?1340571541
Nowhere in your thread/post do you report negative testing for STDs.

what do you do?


Test for gonorrhea, chalmydia, HIV, Hep B, and Herpes HSV-1 and HSV-1.
Avatar universal
I feel like im going through the same issue, except i had protected sex with a stripper 5 months ago, i've always had redness in my testicles and a red ring around the head of my penis. Ive tested for many STD's and HIV many times all negative. i just recently tested for Herpes which i am waiting on results even though i have never had any types of outbreaks. I know i was tested for one of the Hepatitis but not so sure which one but it had came back negative. All of my friends think im crazy and dont believe me because doctors are coming out saying everything is fine. But its not i'm having pain and burning feeling in my shaft and testicles, nausea at times in the morning, my lower back is aching me right now, Swelling in my gums, swollen glands in the neck, headaches, and blurred vision. I just want this to go away. How is my blood work coming back just fine with all this happening to me? I do hope they find the problem for you and I will pray that we all become healed some day. God bless
1318465 tn?1340571541

You were at zero risk from your ecounter with the stripper 5 months ago.

See a doctor for all these symptoms as they appear to not be related to STDs.
I know this is an STD forum, but If I were in your shoes I'd get a CBC, electrolyte check, and check blood glucose.   Talk to a physican about all this, they can help you more than anyone here.  Also they can refere you to a urologist for your pelvic pain.  

Avatar universal
Hi, thanks for the response.

I should have mentioned that I have been tested for absolutely everything other than the hsv antibody tests which apparently aren't that helpful anyway.

It seems strange that nobody knows this problem, I know from my own experience and research pretty much what it is I'd just like to put a name to it. I'd like to know what family of viruses it is in.

I assume that it isn't prevalent because you always have symptoms and so people are less likely to pass it on.

I wonder what the odds of me catching this illness were? 50000/1?

It could be that it's more common than I think. My dermatologist said there is nothing that can be done other than apply cream. He did also say that it was quite common, which I find quite hard to believe.

101028 tn?1419606604
herpes igg blood testing is useful for the most part.  gum clinics do not offer it, you need to seek out testing privately in the UK.  your symptoms do not sound like they are due to herpes.  

nothing you've mentioned sounds like some sort of exotic std that hasn't been named yet or anything.  honestly this doesn't sound like it's std related at all.  

continue to follow up with the dermatologist as well as apply the topicals you've been given.

Avatar universal
Hi Grace, thanks for the response.

I can appreciated that this doesn't sound like anything that is currently documented. My problem is that I am absolutely certain of how I contracted it.

The person I caught this infection from was known to have long term sexual health problems, although little was known about the details.

Assuming that you knew it was an std and nobody knew what it was, what would you do in my situation?

Thanks again

101028 tn?1419606604
first off you need to stop thinking you have some sort of "new" std!!!  Really, what is the benefit to assuming that ?  
Avatar universal
Hi Grace, if I were to stop assuming that I would be lying to myself.

I am absolutely adamant about my condition and its origin.

Several years ago I found a website documenting my condition word for word. The condition was simply termed non specific urethritis with the long list of symptoms including everything I have discussed previously. The website was not describing the common definition of bacterial non specific urethritis.

The girl I caught this from did have unusual symptoms herself, but unfortunately I didn't recognize them as anything particularly, unsurprisingly because they aren't documented. I put it down to a lack of hygiene on her part although alarm bells were going off in my head. I was also foolish enough to believe someone who knew my family would never expose me to something contagious.

I can appreciate from your point of view that you think I'm suffering from some sort of paranoia or psychologically self induced illness but unfortunately this isn't the case.

It may sound strange but I just wish I suffered from regular HSV-2 and not this obscure chronic condition that I have now. HSV sufferers get a break, I'm not so fortunate.

I just wish I could get some support and advice about what I should do in my situation, it's driving me insane. I don't like getting into a debate about whether this condition or it's origin are reality because I know I'm right even if that may sound arrogant from your point of view.

I did put up a very poor website a while back describing my condition, eventually receiving an email from someone in the same situation asking for help. I can't be sure he was suffering from the same thing as me, although it did sound similar.

So the question is how do I get a diagnosis or pathogen isolation? Do I see a virologist?

Maybe I should try some anti virals as prescribed for herpes.

Thanks for listening. Just because you don't know what I'm talking about doesn't mean it doesn't exist or isn't real. Some illnesses are around for years before they are labeled.

Thanks again

1318465 tn?1340571541

I think you already know what we are going to tell you, so here goes.

You are making asinine comments/belifes.   Anyone that wishes they had HSV-2 instead of some "bacterial  non specific NGU" causing pathogen is pretty foolish.   And yeah arrogant doesn't even describe it.  More like disprespectful and immature toward those who do have gential herpes.

To answer your question:   Go see a doctor, get tested for UTI/urethritis.   I suggest you stay off line, especially STD forums because you don't have any.  Talk to a doctor and not self diagnose or look up detailed information as what you have already found already.    

Finally a therapist can help you with your IRRATIONAL belief that you have an STD.

Avatar universal
Thanks you for the response JessyJames2010.

I absolutely disagree with you. I made that statement about HSV-2 because I have to live with the condition I have and I also know everything about HSV-2. You however know nothing about my condition and couldn’t realistically make any sort of judgement of me or the comparison I make about HSV-2.

If you read through what I said you’ll see that I specifically said it was not bacterial NSU. I have had this condition for 10 years and just want some answers.

To summarise, the condition is basically a chronic nsu/balanitis/proctitis viral systemic infection with a 48 hr incubation period.

My urologist and dermatologist will both tell you this is by no means an irrational belief.

Fortunately I’m responsible enough not to listen to your opinion about not having an STD. I really wish you were right, unfortunately you aren’t. I guess if nothing else I can hold my head high and know I haven’t trashed anyone else’s life with this affliction.

Do you know any dermatologists? As I mentioned before my dermatologist is the only person who had seen my condition before. He said “unlucky old boy, you’ve got that”, “there’s nothing you can do about it other than apply cream”. “If the pain gets too unbearable you need to get circumcised”.

I sincerely hope before the 80s Aids patients weren’t treated as having an IRRATIONAL psychological problem inducing weight loss and opportunistic illnesses.

Anyway, thanks again for your advice. I can’t expect anything miraculous to come from this conversation and am by no means surprised at your response.  To be honest I’d probably say something similar in your position.

If you are a Doctor, please show a little more compassion. Just because you haven’t seen something before doesn’t mean it doesn’t exist.

Thanks again
101028 tn?1419606604
ngu isn't some sort of new std. it's well known and well documented. also many kinds of non-bacterial/non-viral urethritis out there too. There is even an urethritis diet for males who experience long term burning issues. also cpp is well documented.http://www.pelvicpainhelp.com/  is a good website for more info on chronic prostatitis issues.  

101028 tn?1419606604
also this really isn't a std related issue. I'd look for a forum for men's health or men's prostate/urethritis issues for better follow up.  we help with getting a proper diagnosis and testing and something that's an issue for 10 years, isn't an issue for this forum.
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