Genital herpes or not?

[confusedgal85]

Can someone help me out? Okay, it's a long story. I'm in a long term relationship (almost 10 years) and in 2008 we briefly separated and I ended up having a one night stand with an acquaintance (early september), who's quite a player. There was some major genital grinding, unprotected oral sex (both way) and a few seconds of unprotected vaginal penetration. Then he put a condom on, but never ejaculated. He said he was STD free and used to get tested every 6 months or so.
As for my regular partner, he had sex with other woman previously (around 2, 3 women). I never spotted any genital or oral abnormal symptoms in him during this 10 year period.
So I had the one night stand and I freaked out about STDs, specially HIV (I didn't even consider herpes at the time). I remember feeling kinda raw for a couple of days later, but nothing extraordinary. Two days later I also felt some lower back pain, but the doctor said it was a muscle strain and gave me some advil or something like that. I went to my GYN a couple of weeks later (late september) and everything was apparently ok. She even told me that if I had a STD I would be showing symptoms by 2 weeks. Still, I had some blood work for the usual STDs, all ok.
By then, me and my partner were back together and we decided to resume sex with condom, just to be on the safe side. But when my GYN told me everything was ok, we stopped using condom.
So...around 10 weeks after the one night stand (mid november), and around two weeks after having sex with my regular partner, I get a bad flu and a sore throat. I think that a week before that I experienced some groin pain, but I never thought it could be swollen nodes - maybe it was. I was also getting some discharge (thought about yeast, which is recurrent to me). A couple of weeks before I had had my pap smear and my doctor mentioned yeast, but nothing about sores/bumps. So during my 2nd or 3rd flu day I decided to take a look at my vagina and I spotted several flat sores, reddish ones. They didn't hurt at the time. I freak out and saw my (useless) GYN the other day. She said I had some yeast going on and it was probably from scratching my vulva or maybe from masturbation the day before. I asked about herpes, but she didn't think so. Gave me a bunch of yeast medicine to take/apply.
The sores eventually turned into canker sore things and urinating was excruciating. So around 5-6 days into the "outbreak" my GYN decides to swab a sore and my cervix, already convinced it was herpes. Prescribed me valtrex after the swab.
The results: my PCR swab was negative for HSV1 and HSV2. A week after the onset, I mistakenly had one of those older non type specific tests - HSV1 was like 1.2 and HSV2 was 0.6. A month later I had a HerpeSelect - HSV1 3.5, HSV2 equivocal. Another month later, HSV1 1.5, HSV2 0.4. All IgG, no IgM was performed.
My regular partner tested HSV1 3.0, HSV2 0.6. The acquaintance got tested 4 months after our encounter, negative for HSV1 and HSV2, IgG and IgM. I never had other sexual partners. They both sent me copies of their results.
So we were officially confused. During that year, I had several other blood tests, and so did my boyfriend. Always HSV1+, HSV2-. I also convinced my one night stand to have a HerpeSelect almost two years before our encounter and his HSV2 was like 0.5 or 0.6.
Over a year after the incident, I spot another red sore in my vulva (during sex with my boyfriend, to make things worse). The same thing happens - red sore that turns into a painful canker sore, during an episode of flu/sore throat. GYN wouldn't see me so I missed the chance of swabbing it again. Haven't had another episode since then.
So I'm pretty convinced I have genital herpes and I'm patiently waiting for another outbreak to be swabbed. The question is - who did I catch it from, considering the whole timeline I described above? Shouldn't the blood test be showing positive for HSV2 for me or my partners? Can anyone shed a light on what might be going on? I feel like I did everything I could but I still have no answers. =(

[gracefromHHP]

a biopsy isn't affected by antivirals like a lesion culture would be.

best of luck getting more accurate answers so you can properly treat this :)

[confusedgal85]

Just to let you guys know...the biopsy didn't appoint a specific diagnosis, but it showed "uncharacteristic pathologic findings" that could be related to aphtosis or behçet disease, according to the pathologist. My doctor actually took the time to talk to the pathologist and told him all my clinical history and now they are officially at lost.

She just couldn't tell me if the fact that I had antivirals before the biopsy would somehow make any difference in its results. She believes the biopsy would still pick up some "nuclear changes" that are characteristic of herpes or something like that.

My dermatologist just told me to forget about herpes, even though it behaves very much like it. So I guess that it's. Thanks for all your help, Grace.

[linda9988]

By CDC.gov the blood test for herpes not clear cut. THe best test to diagnosed herpes is PCR swab test within 24-48.

[gracefromHHP]

you've tested negative repeatedly with various tests. odds are this isn't herpes at all so really nothing new Terri could suggest. seeing the dermatologist is a good idea - continue to follow up with them.

[confusedgal85]

Another update...went to the dermatologist, who's stumped with the whole thing. We both feel like it behaves a lot like herpes (obs during illness, a first episode with multiple sores, followed by milder obs, etc) but she also feels that it would be highly unlikely for this to be herpes with three negative swabs and negative sorology for hsv2.

So she decided to biopsy the sore...and it wasn't a pleasant experience, I can tell you that. We'll wait for the results.

I ask you again: do you believe I should post my case to Terri? Would she propose any new approach to the case? Thanks.

[confusedgal85]

Guess what? PCR swab negative for hsv1 and hsv2. What the hell is going on?!

Just to recap...I had the swab HOURS BEFORE the thing popped! There were probably billions of viral particules just hanging there, the damn PCR would have picked it up if this was herpes, correct? I mean, I'm not 100% sure the nurse actually identified the bump, but the labia minora in general would be shedding the virus right in the very beginning of an outbreak, I suppose.

The ulcer is still big and painful. The trick of passing water while urinating is not even working anymore! The pain is excruciating...I hate peeing. And my left leg is sore, not sure why.

Grace, do you think it's a good idea to post to Terri? Or should I just find a rheumatologist or something like that?

[confusedgal85]

Thanks, Grace. I'll continue the famvir then...as I said, it can do no harm. And I'm willing to try anything to make this pain so away faster. I already had to pay 200 dollars to have the pcr, famvir looks non expensive next to it lol

The main ulcer is almost 1cm, it's the biggest one I have ever had. And there are also two or three pinpoint ulcers close to it. God, I hate this, whatever this is. It itches, it hurts.

I'll have the PCR results by thursday, hopefully it will tell the story now.

[gracefromHHP]

when you take them within 6 hours of the start of symptoms, it helps to avoid a full blown ob for many people. it's fine to start them at this time if it makes you feel better to do so.

[confusedgal85]

So...here I am again. Friday 13 brought me another outbreak. Yet again during a cold/flu episode. I started to be sick on thursday - and then this saturday morning (like 3AM!)  I spotted a very discrete bump in my left labia minora. It was slighly whitish, but it looked much more like a clogged pore or a pimple. Not the blister I was expecting.

I knew something was wrong so I went to a lab this morning (a few hours after spotting the bump) to get it swabbed. It was so small that the nurse had a hard time finding it...but she swabbed the left labia with those cotton swabs, hopefully she got it right.
A couple of hours later the bump must have popped and turned into a flat red sore. The usual!! But I must say that this one is feeling much worse than we other ones... =/ Very painful and it's a pretty large sore. And it's sorta bleeding.

Of course I'll wait for the pcr results but I honestly cannot think of anything other than herpes. It behvaves very much like it and it only appears during illness. I'll keep you guys posted about the results.

In the meantime, I decided to start famvir, hoping it will make the outbreak shorter (although I'm not sure this is herpes, I thought it could do not harm). But then I read the package insert and it said something about antivirals only being useful if taken within 6 hours of symptoms. So episodic therapy won't do any good if taken after 6 hrs? Should I stop famvir then?

Thanks guys. Feeling very upset right now. =/

[confusedgal85]

Sure will. I hate those posts where you don't get the full story, he-he.

[gracefromHHP]

please be sure to stop back when you do get answers to post about it in this post so that others reading get "the rest of the story" :)

best of luck!

[confusedgal85]

Thank you very much, Grace. I guess after two negative PCR swabs and many negative blood tests for HSV2, it's time to move on and find another cause for my ulcers.

[gracefromHHP]

no it doesn't matter if they misunderstood you as to the location - it's the same test whether it's your genital area or your shoulder.

actually yes there are conditions that will cause genital ulcers after viral illness. Ulcus vulvae acutum  is one such condition that your providers will need to rule out.

continue to follow up with the dermatologist as you have symptoms for better answers.

[confusedgal85]

Ok, this is getting awkward...my PCR swab came back negative for HSV1 and HSV2.
I'll set an appointment with my dermatologist again, but in the meantime, I should trust this result, right? Sunday afternoon I noticed a bump with a tiny white center; by the next Monday afternoon the ulcer was swabbed.

Also, the guy at the lab understood me wrong and put the specimen as taken from my "shoulder" (?). I guess that does not matter in terms of result, right?

I don't know what the hell is going on. =( It's not normal for someone to get vulvar ulcers during flu episodes. Feeling very upset right now.

[confusedgal85]

No, not only because they are ulcerated lesions, but mostly because the current ulcer is not located anywhere near the bartholin gland.

[Sunny2406]

Ah, ok. Thanks.

[gracefromHHP]

they won't look ulcerated.

[Sunny2406]

Could this be a bartholin gland?

[gracefromHHP]

ask to be tested for them every time you have symptoms.

[confusedgal85]

I see.

Nope. The dermatologist is trying to exclude herpes for the time being, I guess she hasn't even considered yeast and bacterial infections.

[gracefromHHP]

many things can cause recurrent genital ulcers, just herpes is the most common cause.

were you also tested for yeast and bacterial infections vaginally too?

[confusedgal85]

Thanks, Grace. The results will take 10 days to come back, I'll let you know the results.

Although my dermatologist believes the ulcer was not herpetic, I really cannot imagine other causes for recurrent vulvar ulceration. For me, it's just a matter of finding out if this is HSV1 or HSV2. If his turns out to be HSV2, I'll be very upset - not because of the diagnosis itself, but because I spent a lot of money on blood tests (for me and for my partners!) and I kept getting negative results. =/

[gracefromHHP]

hopefully you get some better answers soon :)  A lesion culture done within 24 hours of the appearance of symptoms has a good chance of being accurate.

[confusedgal85]

So my dermatologist saw the sore and classified it as an ulcer. Still, she is not thinking it's herpes (don't know why), but she also doesn't know what's going on. She referred me to a dermatologist who is an expert in genitals.

She swabbed the sore, even though she claimed there was not a lot of material available (it was a clean and dry ulcer, she said).

So I had a swab less than 24h after spotting the bump. When I first spotted it (sunday afternoon), it was a bump with a tiny white center. Now the tiny white center is bigger, and it's more like a flat white ulcer, like a canker sore. Will the swab be accurate this time?