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First disclosure mildly successful.


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Just wanted to give my story of my recent-ish disclosure to the person I may have gotten H from.

 

For some background info, we weren't in a relationship, we more so casually hooking up throughout the last year. Our STI talk at the beginning basically consisted of me asking, "Have you been tested recently?", which of course he said yes. We weren't taking many protective measures aside from birth control, but I assumed I wasn't his only partner and got numerous HIV & GC/CT tests after each hook up and occasionally beforehand. While I probably should have been a bit more cautious, regular condoms wouldn't have fully protected against HSV. So 2 days after our last hook up, I started to have some increased itchiness that progressed over the next few days. There was no sign of anything out of the ordinary those first few days, but I finally had visible lesions (albeit not vesicle or ulcers) appear 5 days after we hooked up. Although I was hoping it wasn't exactly what I thought it was, I was able to see my gyn the next day to obtain swabs for PCR. The PCR was positive for HSV-1, but HSV-2 (-) when I got the results a few days later.

 

The hook up and I were still talking intermittently in the weeks that followed, so I planned to tell them in person the next time we hung out (and way before the next hook up!). Unfortunately, plans kept falling through till they just stopped replying and I didn't hear from them again. I got caught up with the rest of my daily life and to be honest, I was still coming to terms with the diagnosis, so I didn't jump at the opportunity to disclose right away. Likewise, I was trying to come to terms with being ghosted by this person once again, which is childish, but my feelings were definitely hurt by it.

 

Fast-forward to a month and a half after the last hook up and subsequent OB, I finally texted them to ask if we could meet up to have a quick conversation about something. They came over and I started with "I tested positive for HSV-1 a few days after our last hook up" and explained the diagnosis as I did above. Although I felt that I had contracted H from them, I did my best to keep the conversation non-accusatory and encouraged them to get the IgG serology done. They initially reacted well, noting that H "isn't really that big of a deal", before following up with, "So do we know where this came from?" and eventually denied ever having a cold sore. I made clear that no, with info we had currently, I couldn't say with certainty where it came from, but did note they were my only partner in the past year. I did my best to keep the conversation matter-of-fact and did a good job of not getting emotional during it. I wrapped the conversation up again with him getting tested, not necessarily for me, but so he knows his own status and if positive, take steps to prevent it from being transmitted to future partners. He did say that I was "cool for actually telling him about it since most people wouldn't". He was adamant that he'd let me know once he got the results, but I replied that it'd be cool to know, however, it ultimately doesn't matter because knowing he gave it to me wouldn't make H go away, nor would it prove that he was a crappy person since I'm sure (or hope) he didn't know.

 

I got a gut feeling that I'd probably never hear about their test results, assuming they'll actually get it done, and to date I haven't heard a peep. They didn't do it right after our conversation, but after a few days the person unmatched me on a dating app. In the end, the disclosure did lead to being rejected and it still stings a bit, but I'll get over it. It will be awkward the next time we see each other (which is ~99% sure to happen), but at least it forced my hand in ending a cruddy situation with this person. No one wants to get H, but in the grand scheme of things, I'm still a pretty cool person and my life is awesome - it's definitely someones' right to pass on me if they can't get past the H, but ultimately, they're the ones missing out.

 

Finally, I got the HSV IgG serology performed a few days ago, which is 2 months after the hook up/OB. Interestingly, it was negative for both HSV-1 and HSV-2 (done by multiplex assay), which definitely points towards me being infected during that last hook up and having my first OB. It's possible that valtrex is slowing the IgG production, so I'm planning on getting the type-specific western blot performed in six months. Regardless, this experience has been an eye-opener and has really forced me to reassess how I've approached relationships in the past few years. As I already said, no one wants to get H, but it's a great opportunity to stop and consider to my gut reaction about someone, which I've definitely been ignoring prior to now.

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I had a similar situation happen. A person I had been hooking up with (though I thought it was progressing into a relationship). I told him and he didn't leave, and came over to watch a movie and not have sex during my primary outbreak. For this I was thankful, but then it declined and I'll never know if it was due to H or if the relationship just wasn't working. I ultimately ended it because I felt it wasn't right regardless and it was also a shitty situation, it's been almost four months and I'm still upset by it though.

 

He claims he got tested and was negative, but I have a feeling they didn't test correctly, etc. etc. I guess I'll never know and it doesn't matter or make me see him differently, but I'm almost positive I got HSV1 genitally (and orally) from him because swab was positive, initial blood tests were negative, and six month blood tests showed low antibodies. (Like very low though, still confusing)

 

You never know, he could've tested positive and is just freaking out himself and not ready to talk about it. People react to things in such strange ways, and men tend to retract from situations that scare them (in both a good and bad way). I'm glad you don't blame him though, that's respectable and classy.

 

I agree with the eye opener thing–it's one of those things I just never thought would happen to me, really. I haven't told friends with the exception of a few, but I always think to myself, "if you only knew what could happen" when they're talking about sex and relationships.

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I think it’s awesome that you found your strength and disclosed. You mentioned that you felt you did a really good job with staying calm and unemotional. Do you have any guesses as to how you were able to do that? Even though I feel totally different about herpes now than two years ago when I was diagnosed, I do get emotional quiet easily about anything and I’d love to someday disclose in a calm and unemotional way!

 

FWIW, the IgG tests miss a significant number of HSV1 infections. I forget the stat. But a PCR swab is considered definitive.

 

Definitely his loss. Thanks for sharing your experience with us.

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Glad you had that reaction. :)

 

Mine blamed me and dumped me at 19.(25 years ago this year) I know it came from him and to this day he still would say he doesn't have it.

 

It was very hard to deal with there was no support and info out there like now. Drs dont know Jack either... Today Im way more informed than my gyno/Dr. They seem to be clueless with the exception of just throwing meds at you.

 

Im glad people today have forums like this, a butt load of info to research on the net, and dating sites for us positive people.

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Thanks for all of your comments :) I've kinda felt isolated since I found out, but it's nice to hear from others who are going through the same thing.

 

@just_a_girl I wholeheartedly agree that people react in strange ways! I think that's the most frustrating part of this experience is that while you can (somewhat) control your reaction to it, you can't control how others react. I feel you on still being frustrated about it, but hopefully it'll get better for us in time.

 

@HikingGirl I think the key to keeping calm was saying the first portion of my talk out loud to myself. I definitely got got worked up the first time around, but after a couple more runs the words lost their sting. It's hard to describe, but doing so helps me separate what I'm saying from how I react to what I'm saying. I've got experience with sharing "bad" news, so that probably also helps.

 

Otherwise, I agree that the swab was essentially definitive - PCR has a sensitivity and specificity >97%, but even more importantly, my symptoms fit alongside it.

 

Having a negative IgG supports the hypothesis that this is my first OB because it can take 3 months or more to make sufficient amounts of anti-HSV1 IgG to register a "positive" test result. I'm still very much within what is considered the "window" period seen with many viral infections when serology is used to determine infection. I totally agree that my negative serology doesn't mean that I don't have HSV-1.

 

Finally, there are multiple IgG type-specific serology tests. Mine was conducted using a chemiluminescent immunoassay (CLIA) test, which has a bit higher concordance with western blot-verified serologies. The false negatives that you guys mention are more consistent with ELISA or immunoblot IgG tests. For example, there was an 88% agreement between CLIA and WB when used in a similar manner to my testing so far (see first citation). In other studies, CLIA has a sensitivity and specificity >90+%. I'd lean towards the findings in the first study, given that these researchers had the clinical information available to help interpret the results.

 

I do agree that HSV IgG serology isn't the best diagnostic method and the number of false positives/negatives varies for a variety of reasons.

 

Some more info:

van Rooijen MS, Roest W, Hansen G, et al False-negative type-specific glycoprotein G antibody responses in STI clinic patients with recurrent HSV-1 or HSV-2 DNA positive genital herpes, The Netherlands Sex Transm Infect 2016;92:257-260.

 

Comparison of commercial methods of immunoblot, ELISA, and chemiluminescent immunoassay for detecting type-specific herpes simplex viruses-1 and -2 IgG. Fernando F de Ory. Journal of Clinical Laboratory Analysis. Wiley. 2017-3-23 0887-8013

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