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Cold sore exposure, but impossible to get a diagnosis with no "classic" outbreak


greentea

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I received oral sex from my ex-gf whilst she was presenting with cold sores. Sounds ridiculous right? She was completely oblivious to the fact this just shouldn't be done. I on the other hand wasn't quite so naive, although I wasn't well versed in herpes literature, I was of the knowledge that kissing etc should be avoided under such cirumstances. However, I hadn't said this to her when we met, having seen she had what appeared to be cold sores. So later that day we were in bed together, and nightmare scenario happens before I could stop her. I don't blame her because she genuinely had no idea.

Needless to say I started panicking. 17 days later a fluid filled spot appeared on my penis shaft, no pain. It was there for 1 month. Soon after I got another similar one in the boxer region, on my leg. I live abroad and was not in the UK at the time so I couldn't see a doctor there until 2/3 weeks after these zit looking things had reared their heads. They were still there but obviously too old to draw a sample from. I have since seen 6 different doctors and all of them have said, despite the fact I told them of the potential exposure and tingling sensations since, it didn't look like herpes. At the clinic I was abruptly told it was an ingrown hair and herpes blisters come in clusters very soon after exposure, so it couldn't be that?!? Apart from visually examining the area, in the UK, unless you have active lesions, there is no other test offered on the national health system. I was home for a few weeks, and although generally feeling as though there was something wrong, without a recurrence of anything resembling a breakout, there was nothing I could do.

It really has been a nightmare, especially not being able to get a diagnosis. I reluctantly returned to the country I work in last month. Despite ongoing symptoms, I never seem to have a proper outbreak. For the last 3 months I have had weird tingling sensations in my penis and scotum a dozen times everyday (few seconds each time), sporadic itching and shooting in groin area, pins and needles in my feet on a regular basis, then for the last 3 weeks, a new red spot pretty much everyday (could be anywhere in pubic hair, buttocks, thighs, penis head) and just generally feeling not quite right, like a pressure covering the whole genital region (sex drive has disappeared). Therefore it doesn't feel like the kind of outbreak many people describe. More of a constant stream of painless red spots (normally individually isolated), some just show for a day, others longer and blister slightly, and a few filled with fluid. Some are here and gone so fast, I'm not sure they can be swabbed or not.

I'm certain I have herpes, but haven't been able to have this validated medically. As I wasn't getting these red spots so regularly whilst in the UK, I recently emailed my GP back home with photos, he suggested that if it put my mind at ease, I could start taking "anti-herpes medication". Anyone have any thoughts on what I should do, because essentially all the doctors I have seen have told me that I can carry on with a normal sex life, but I don't feel like this is responsible?

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@greentea

 

Hello and Welcome!

 

Well, it certainly DOES sound like you have a good chance that you have HSV1 genitally. Unfortunately the UK is a terrible place to have atypical outbreaks because of the way they deal with H there...

 

Are you still in the UK? If so we should add that to the title to get responses from people there because some have figured out how to get tested there.... it's certainly a challenge to get them to take you seriously without a mass of blisters... *sigh*

 

I do have this in my notes if you are in the UK... it might be a place to start:

 

Join the Herpes Virus Association and pay for a test through them (approx 20 quid membership plus 50 test I think). They also have trusted sites online pharmacies for supressive therapy if needed (again really expensive but I thought it worth mentioning).

 

As for a "normal" sex life ... well, yes, you would have to disclose, but remember that about 80% of the population has oral HSV1 and 50% of all new cases of genital H are HSV1 from oral sex, so there will be plenty of people out there who are already carrying the virus ... AND .. HSV1 genital sheds about 1/3 a much as it does orally and 1/3 as much as genital HSV2 .. ie, the chance of passing it on when you have HSV1 genitally is FAR less that when you have it orally or you have H2 genitally ...

 

Point being: Yes, you should disclose, but if anything that will help you to pick better partners (Just read our huge Success Stories section ), but the risk of passing H1 on when you have it genitally is quite low ...

 

I need to get to bed... I have more to say but I have an early start... check that info out and let me know where you live and we'll go from there...

 

(((HUGS)))

 

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Thanks for the advice Dancer. Yes I found the Herpes Virus Association webiste very informative. No I'm not in the UK at the moment unfortunately. I followed my GPs emailed suggestion and took a course of Aciclovir, for some reason I then had what must surely have been a classic outbreak (worst I've had it in the whole 4 months), very inflamed, 3 or four sores that burst and then all cleared up within a few days. I went to the doctor here at the time and was told again it probably wasn't herpes and to stop taking the Aciclovir. They gave me a blood test, got the results today, there were no values. It just said negative for HSV1 and 2. So now I have been given medication for balinitis.

Still feel like I'm going around in circles! Even when I go back to the UK, apart from paying for a test, or having an outbreak coincide with my next visit, I will still be stuck in this state of not knowing!

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