Just diagnosed with HSV-1- Looking for support

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  • #44628
    OliviaB
    Participant

    Hi all, I am 25 years old and was just diagnosed with HSV-1. I never thought this situation would happen and I am extremely scared, uncomfortable, and ashamed of what has happened to me. Still trying to figure out how I contracted it. This is my story. I am currently kind of seeing some guy who lives in a different state. We have been seeing each other for a few months now- he visits me once a month. We are not exclusive and have never had that conversation. I went out one night and went to my friends house and we started hooking up. He performed oral sex on me and that’s all that happened. Fast forward a week and my guy came to visit me. I was starting to feel severely fatigued and sick. He and I had unprotected sex all week and I noticed I was getting sore down there- I figured it was from having sex a lot. But my gums and my mouth hurt so so much, like more than ever before.
    He left and I went to urgent care. They diagnosed me with strep throat. The following day I still didn’t feel right. I felt a bump down there and I decided to go back. I had a doctor look at me and she said it might be herpes. I was crushed. Very emotional but I still had a few days until my test results came back. I drove myself to my parents house and told my mom. I was bedridden and she took me to the ER and the doctors couldn’t pin point what was causing my severe drowsiness and flu like symptoms.
    Yesterday I called the man I think I contracted it from and he apologized and said he would get tested. I asked him if he gets cold sores and he said yes so I think that is where I got it from. But honestly i feel like it could have been from either man. I’m scared to tell this guy I actually have feelings for about this. He’s planning to fly to see me again and meet my family at a wedding next week. He is starting to show flu like symptoms… but is negative for strep.
    I just need advice in what to say to him and I really want a friend while I go through this. I feel awful that I may have passed it on unknowingly. Like who uses dental dams?!?! I didn’t even sleep with this other guy and now I’m paying the price… ): I don’t know of anyone that I can relate to and ask questions to.

    #44630
    J
    Participant

    Hi! Thanks for sharing your story. I’m not really sure honestly how to go about this situation. I just got diagnosed with the herp 3 or so weeks ago so this is all still new to me and I am feeling similarly to you. I think the best thing to do is to tell the person before you have sex with them. The guy who gave it to me did not tell me until it was too late. And now I am paying the price. He dumped me like two days ago too :|. Anyways, it must be difficult to think that you gave this to him (even though it could be unknowingly). Hang in there. I hope someone else on here can help you more than I can! But I’m here to listen.

    #44631
    Rae
    Participant

    Im new as well and hsv1 is the most common of them all. You could of got at at 15 and it not showed up til now. So im not sure if 100% honesty would be my choice as far as opening up about the guy you were not all that interested in. As of the guy you want who’s sick… Throw out suggestions including hsv1. Because it’s common as fuck. It really is. Or go together and get tested together find out together. Idk but there’s no way to pin point who gave who it and no way to tell who had it first. Theres just not so why stress.
    If you want you can also say “hey remember when i was sick i went and tested for what i thought was strep come to fond out i have hsv1 and this is how i feel….and then end it with i feel you should get tested too.”

    Idk. When i found out i drove myself to my son’s father and shared woth him right away. We coparent very well and are still good enough friend to where i felt ok sharing. I then asked the guy who told me to go get tested be used hes had it for over 30 years and didnt want to tell me but felt bad for hiding it for so long but it was to late.

    My doc told me to take my meds wear condoms and if i don’t want to disclose i don’t have to but morally i think that’s just wrong. I wish i knew and had the chance to walk away.

    It a tough call for sure. There’s no judgment here. Keep us posted as how it played out.

    Regardless we are here for you!

    #44662
    Maria89
    Participant

    Olivia,

    Here are some facts you need to know:
    – HSV-1 –> 50%-80% of people have it.
    – Normally, you catch the virus during childhood with the kiss of a relative.
    – When you catch as a kid, you build immunity and won’t get it genitally.
    – What happened to you is that you didn’t get herpes type 1 in your childhood and initiated your sexual life without antibodies. You got it from oral sex. That was your first exposure to the virus.
    – Genital HSV-1 viral shedding (when you shed the virus without symptoms) is 2-5%.
    – It’s super rare to transmit HSV-1 through genital to genital contact, you get it from oral sex.
    – So, if you are not having an outbreak with genital HSV-1, you don’t need to disclose it (scientifically, not morally). Just give your body a year to build antibodies.
    – Since the sacral ganglion is not its’ favourite place, people with HSV-1 have fewer recurrences. The average is 0,7 per year (3-8 when people has HSV-2). Most people with HSV-1 have 1-3 outbreaks in the first 2-3 years, and then no more. (There are people with G-HSV1 that would say that they have more recurrences, but still, it’s rare). I have only had 2 in seven years. The first one was pretty bad, the second one was a rash and a cut 7 months after. After that, not at all. Nothing.
    – Scientifically, disclosure of genital HSV_1 shouldn’t exist since the transmission from genital to genital is extremely low.
    – Since almost everybody has it, you can just tell your new partner to get tested, chances he already has it are high. Since my diagnosis, I always asked my partners to get tested (I wouldn’t like to get HSV-2), from 10 guys I dated, just one didn’t have HSV-1. Three knew they had it because they remember having cold sores when they were kids (confirmed with the test), and 6 had it and didn’t even know it. They just knew it with the test. Fact: I’m in my 30s. So at 30, the stats of HSV-1 are 70% at least.
    – I disclose this by saying, I have the virus that causes cold sores, and it is herpes type 1. And then I explain the differences between type one and two. I say that I was unlucky to get the virus during childhood, and that was unlucky but lucky enough to catch Herpes type one, the nicer one, and that disclosure of genital HSV-1 is more trust than transmission.
    So, if your new partner has it, it’s okay, you don’t ping-pong the virus.
    I have never been rejected (and no, I’m not a hot girl. I consider myself average). I explain all this by looking at their faces, being calm, and I make sure to explain the differences, I also give them the fact sheet from herpesopportunity.com, and I normally ask them to listen to a podcast called “The Big herpes episode with Terri Warren” on youtube. In my experience, it’s really refreshing when my partners listen to this podcast. It answers all their questions.
    – Last thing. Don’t read or try to watch videos about herpes. A lot of people and even doctors don’t know this information and say “herpes is herpes”. I would suggest reading about it with Peter Leone, Terri Warren and Hofdsman. They are researchers dedicated to this virus.

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