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The frustrating ambiguity of blood tests


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Hi everyone, thank you all for sharing and being a support for each other on here. I think this a beautiful forum and community and I am excited to be a part of it. So here is my story:

Recently I tested positive for HSV-1, through blood work. I have no idea if it is oral or genital or both.  I was tested after 8 months of celibacy so I know it is my accurate status. Last year was filled with casual and not always fully protected sex, trying to get over someone ... and many previous years of ignorant but blissful oral sex (thought you couldn't get it that way), so it is highly possible I got it genitally. But I also grew up in a household where my mom & brother had facial outbreaks, and I found out my aunt has them too. My sister just tested HSV-1 positive (which her doc called "oral" but who knows?) and the list goes on and on!!! I know that it is harder to get a genital HSV-1 infection when you already have antibodies to the oral infection.

I had one experience that I feel like a complete and total idiot for — my ex-boyfriend, who had been "tested" had a scab on his you-know-what, then an indent in that same general area, then a new scab in that general area maybe a week or two later. I can't remember the details because at the time I seriously thought it was nothing (he didn't notice it until I mentioned it). I thought it was a cut from his fingernail ... from masturbating too roughly without lube. And I think I used a condom anyhow since we did most of the time. But I learned months later some things that disturb me: almost any symptom could be herpes: a tiny cut, an abrasion of any sort.  And the second scab might have been a "recurrence." And even if he was "tested" for herpes, when we're dealing with HSV-1, he probably had no idea that it could be genital. I hadn't been tested for herpes myself, so I have no idea if I potentially contributed to or have been impacted by this experience. 

I went to my gyno. She said she doesn't ever test for herpes because having antibodies only means that you are a carrier for the virus but not that you are going to ever have an outbreak. I accepted her reasoning the first time but the second time when they fought me on it, assuming "You're gonna go crazy because the results are hard to interpret," I said, "But I know you can spread it even when you are asymptomatic so how is that responsible?" and they backed off. It was truly horrifying for me that I had to INSIST on this test and that my gyno, knowing I was recently promiscuous, never told me I was at risk for it, even when I expressed concern about HPV.  But how is that legal AND as far as the positioning from the CDC is concerned, not being a stand for routine screening, why does it feel like pharmaceutical companies might have an unfair influence in this arena?

But yeah, I'm still a little funky on how to disclose my particularly ambiguous situation, so I would appreciate a little guidance on it.  I want to be ethical about it, and explain the possible genital infection, but I feel like sharing the scab story would be a total turnoff. Is there any way to be in integrity without analyzing and interpreting the gory details with my partner? Seems like there isn't. And the cultural double standard is annoying, isn't it? I can give it to someone through oral sex if it's just on my mouth, but culturally speaking nobody ever needs to "discuss that."  But because people never discuss it, nobody ever knows. Some people have to be the voice of reason, and now that I know the truth, I can't turn back. HSV-1 counts, and now I'm reading that it is counting for 50% of all new genital infections:  http://consults.blogs.nytimes.com/2010/05/28/can-oral-sex-spread-herpes/

Thanks for listening, guys. Best of luck to all of you on your journey, feel free to ask me any questions. Happy new year and thanks in advance for your advice.

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Yes, interesting double standard, isn't it? If you have herpes on your hoo-diddley (the medical term for genitals), then it's something to be ashamed of in our society, but when someone has a cold sore, there's no cause for shame ... BUT when that same herpes that is on someone's lips gets transferred to someone else's hoo-diddley, it magically becomes shameful again! That's quite a magic trick. And yes, I hadn't heard that stat about 50% of all new genital herpes infections are caused by oral sex. It makes sense though since oral sex in our culture seems to "not count" as sex. But you can pass just as much stuff via oral sex than you can via genital sex ("genital sex" — wow, sounds sexy). 

My girlfriend doesn't have herpes. I have both oral and genital herpes (woo hoo!), so I pay attention to those "tingling" feelings that signal either an oncoming outbreak or viral shedding. I don't have sex with her if I feel anything resembling a tingling on my penis. I don't go down on her if I feel anything slightly resembling tingling on my lips. (By the way, you'll learn that feeling if you haven't already, which is why I always suggest people don't completely repress their outbreaks until they at least get a felt understanding of what this is like. Get to know your herpes!)

You can also see this double standard you mention in the medical field vs. general society as you mentioned: If you don't have genital herpes, there's a stigma against it so you have a healthy fear of STDs, but once you already have it, they tell us it's no big deal, not life threatening, so just deal with it (which is ultimately the realistic view of what it actually is — just a skin condition). 

And about your disclosure situation ... aside from reading the e-book, it's interesting how much pressure we put on ourselves here, huh? Like we have to have all the answers and share in a perfect way. It sounds like you're putting that pressure on yourself there (like you might need to explain your exes scab story, for example). How about sharing the responsibility of having "the herpes talk" with your partner. Starting off with explaining what the relationship means to you, then simply telling them that you have something important to share: "I have herpes." Then ask them to tell you what they know about herpes and what their thoughts are. Open up a discussion vs. feeling like you need to give a powerpoint presentation. ;) (I know the feeling of needing to give a presentation, by the way.) ;) Remember that the way that you disclose says more about your own relationship to herpes and what you think about it than anything. 

Notes:

  • My mother is now in hospice with end-stage cancer, so I am at her house a lot these days helping where I can until she passes. Thank you in advance for understanding if I am not as quick to respond as I normally would be. This is a precious and bittersweet time …
  • This content is for informational purposes only. This information does not constitute medical advice or diagnosis. I'm not a medical professional, so please take this as friendly peer support. 

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