Having a hard time with ghsv1 diagnosis

Sexual health
1

This is my first time posting in a forum and reaching out to others for support and guidance. I'm not really sure where to start but I guess I can start with how I got to where I am today. I was in a relationship with a guy for 9 months and then we broke up but kept spending time together off and on for the next year. It was stupid of me but I was soooo very much in love with him. I figured eventually he would get over his fear of being hurt or commitment or what ever the ■■■■ was holding him back. He had had some pretty crappy relationships in the past.

Well, about 5 months ago, 3 days after having spent the night with him I got my first symptoms of an ob. I naturally went to my obgyn who did a swab and then sent me for blood work to check and make sure there was nothing else going on std wise. Swab came back pos for hsv1 but blood work came back neg for everything. I told my ex right away that I test pos for it. To clarify, he's the only one I've been sexual with in 4 years and I tested neg when we first got together so we knew that he was the one who gave it to me. He had mentioned once that he got cold sores but I never saw him with one.

 At first he was very supportive even though to him it wasn't a big deal since it's so common and it isn't type 2 and I was handling it ok but that is only because when it happened it brought us closer together and I thought that if we stayed together in the end I would be ok with it. Also, at that point I wasn't sure what exactly it meant for me, I hadn't actually gone in to talk to the dr. They had just called with the results. When I finally got in to see the dr it was a month later. After that appointment I got really depressed, almost suicidle. No one wants to hear that they have an std. It was heart breaking for me. I've always been careful to the point that my mother would  say I'm too careful. What's even sadder is that my ex had started to get distant and when I told him it was in fact an std that he gave me (through text because he was working out of town) he didn't say anything. Not even to ask if I was ok.

 I was so mad that he would just ghost on me after something like this happening that I wouldn't allow myself to contact him. I had done enough chasing already. A month later I heard he was hanging out with someone. So, of course I sent him a nasty text saying that he was messed up for giving me an std and then bailing on me. His response to that text was that he had gotten tested and only had the cold sore virus which isn't an std and if I have something else I didn't get it from him. Then ended the conversation telling me to take care of myself. This just devastated me. Not only did he just bail on me but he doesn't even think that what he gave me is an std at all. It blows my mind that someone who's so smart can be so stupid at the same time. Needless to say, we haven't spoken since and that was a month ago. I did, however drop off a shirt of his I still had to his house along with a print out from the CDC and made sure to highlight the parts that specifically talked about hsv1 being an std when transmitted through oral sex and attached a note saying, clearly the CDC doesn't agree with you! lol I know that may have been childish but I sure as ■■■■ wasnt going to let him walk away thinking he hadn't given me an std and it made me feel better. 😋

So here I am angry, hurt and alone. I feel abandoned, disrespected and ashamed. I know that the type I have is extremely common, I know the transmission stats, I know that it's actually safer to be with someone like me than it is for someone who gets cold sore because of the less likely shedding and all that but I just can't seem to get past the fact that I even have it to begin with. I feel weird because on one hand I feel completely myself but on the other completely broken. 

I don't know where to go from here. My friends and family tell me that I shouldn't bother telling future partners about it because most people already have it anyway and it would just cause unnecessary stress but that's just not something I can do and still look at myself in the mirror. I am proud of the woman I am and honesty is a part of that. So, my wonderings are this: is it acceptable to just say that I carry the cold sore virus but not specify where? I just don't understand why it's ok to not have to tell someone that you get could sores but not ok to not tell about the genital version when it's the same virus!! I'm having a really hard time wrapping my brain around that.  I just don't see the difference between the two. What are your thoughts? I know its a controversial topic but it's ridiculous. So, someone who gets cold sores is ok but I'm not? We bother have the same virus and have the same risk of transmitting it. Where is the sense in that. The stigma is astounding. I guess I'm probably just trying to make myself feel better but seriously, this is depressing.

Sorry this was so long. It's my first time really opening up to people outside of my mom and a couple really close friends and their opinions are bias. If you read this far I'd love to hear your thoughts. And sorry for any grammatical errors. 

2

Hi Ashlin. I have researched Herpes like nothing else. HSV1 is honestly nor a big deal. It is spread by saliva alone, it can "sleep" in the body for years and it is quite possible to get it from toys even that someone else slobbered on when you were a child. And you can brake out done there even though it is HSV1. I understand that you are upset though. I remember feeling like that myself when I got diagnosed with HSV1. Now I am battling deeper demons as I have only been sexually active my entire life with my ex-husband and got diagnosed with HSV2 and am fighting for custody over my 2 young children. I wish you all the best!

3

Thank you for your response. I'm sorry to hear that you are going through such a hard time. I understand how you feel. It really sucks to be put in this position but the one thing I've come to learn is that while your life can change in the blink of an eye, the people that matter the most are the ones that stick around no matter what. Stay strong. We'll both get through this. 

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that's what my mom has said too. I was just diagnosed at the beginning of the month and my first ob was absolutely horrid. I could barely move or go to the bathroom. I finished my first 10 days of Valtrex on the 14th, and on Monday I had a red and itchy area and white discharge. last night I noticed a small lesion inside. Soooo I'm already having an outbreak again after less than a week. I have hsv one as well, and while I was terribly devastated and depressed for awhile, after doing a lot of research I figured I wouldn't have any more outbreaks and was calming down about it. This is a big surprise and stab for me. Hopefully you wont have another.

​that's a good question I am curious about as well. that would However, I would want someone to tell me if they had it because there is still a very good risk of getting it, even tho it is somewhat lower than the risk for hsv2.

5

Also about the above post, genital HSV1 can be spread to anothers genitals or mouth, and oral hsv1 can be spread to another mouth or genitals. There is a always a chance both ways, oral to oral is just the more common. Chances of spreading it genitals to genitals is only a little lower than the chance of doing so with hsv2, there is not a large difference.

6

Actuallythats not true. I've spent a lot of time researching reputable sources and taking with drs about this and it's actually rare that hsv1 is spread genital to genital. That is mainly because it's preferred location is orally. The shedding rates for ghsv1 is between 0-5%, for oral hsv1 it is about 18% (and spreading that to the genitals is still unlikely but does obviously happen) and it's about 35% for hsv2. The is a big difference between the two. 

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I only had the initial out break and nothing since and it's been almost 6 months now. One thing to remember is that stress can bring on an ob so if you are having an extremely hard time with it right now, which is understandable because it just recently happened, that could be the reason you had another ob. Try to relax as best you can about it. Don't make yourself sick over this. It's not worth it. That is the one of the important things I've taken from this experience, yes it sucks but we are no different than someone that gets cold sores. It's the exact same virus in our bodies and this people never lost a night of sleep over having cold sores. Most people aquired it as children anyway. Try to think about it that way. There is absolutely no difference between you and the rest of the population that has cold sores. 

I'm having a rough time with this because of the way my ex treated me when it happened. That and I wasn't sure how to go about future partners but I spent an hour talking with my obgyn today about it and she told me exactly what I just told you. I'm no different than the rest of the people with oral hsv1. In fact, we have the better deal with it because we will never get a cold sore for the whole world to see and will rarely have reoccurrences. I know right now it's not the case for you but that's because your body is out of whack from the initial infection and from all the stress, anxiety and depression/crying you are probably going through. In time you will settle emotionally and physically and it should get a lot better. With that said, like with everything, everyone's body reacts differently so tell will tell. Hopefully this helps ease your mind some.

8

Hi Ashlin,

Thanks for your post, I feel like we are in similar boats, I too have ghsv1 which I contracted February 2016. I got it from a guy who gave me oral. Had a terrible first outbreak, and I was travelling abroad at the time, i was in Vietnam. I went to a local hospital who were no help at all, just took a look, cleaned me up and said I had a tear which got infected. They didn't even speak much English. I don't think they were very knowledgeable about herpes to be honest with you. So I left feeling even worse with no real answers, I had to diagnose myself, I knew I had contracted herpes after reading up online, as I had all the sysptoms. Painful blisters all over my vagina, excruciating pain while trying to pee, couldnt walk and this was 2-3 days after receiving oral sex. Anyway so here I am over a year later with no actual professional diagnosis, only ever having one outbreak (to my knowledge anyway, if I get any sort of bump, ingrown hair etc I freak out). I too have all the the same questions as you and have some as much research as I can. Why is it people with cold sores do not need to disclose?! It just doesn't seem fair! I always get scared I'm going to meet someone, tell them my secret and they will go tell other people and I will be known as the girl with the disgusting disease! It's hard enough as it is to meet genuine people let alone with herpes! 

Another question I have is, I know it is really low transmission rates for hsv1 to pass genital to genital as it is not the preferred site, but do you or anyone else have any info or stories on passing hsv1 from genitals to oral? If the person doesn't carry the herpes virus at all, which some people don't. 

If anyone has taken the time to read this post I would be grateful on any stories to do with genital herpes type 1 as there doesn't seem to be as much info as type 2 online. Thanks for reading! 

9

J,

I'm sorry to hear that this has happened to you too. Its a crappy situation to find oneself in. I have spent A LOT of time thinking about my situation and I've come to the conclusion that it's absolutely no different than getting cold sores. I plan to be honest with every day that I date and become sexual with by telling them that I carry the cold sore virus but I'm not specifying where. There's no reason to and my dr agrees with me in that. 

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Hi j42508

I would like to understand ghsv 1 more.

Did you get any ob after the first one ?

How is the skin texture down there now ?

Is it back to normal ?

Do u feel normal again when you have sex?

The reason I ask this is because I still get a lot of redness and itching down there despite no second ob.

I am suspecting those are fungal infection and put on lots of lamisil cream.

Peter

11

Hi Peter, 

Sorry to take so long to reply! I hope you're doing a lot better now. To answer your questions:

1) to my knowledge I have only had the one first initial outbreak which was a year and a half ago. If I get any sort of bump down there I do freak out, but I think they have just been infrown hairs not a herpes sore. 

2) I am female so my skin is different to what yours would be, but as far as my skin goes I am completely normal down below, doesn't look any different than before.

3) do I feel normal when I have sex... this is where I'm having some issues, the only issue being, I just cannot seem to get wet during intercourse since I have contracted herpes, and I think this is my own mental issue, during sex I can't seem to stop thinking about herpes and passing it to a partner, I think my mind just runs away with the herpes I just can't seem to relax and enjoy it. I think once I accept I have herpes and I find someone who loves me for me I will be just fine. It just takes time to adjust and accept the fact this herpes virus is with you for life. 

Have you been to the doctors about your itching etc, sounds to me you have some sort of fungal infection, as once your outbreaks have cleared up, you should basically be back to normal down there.