My story, how I feel, looking for advice & support

[Kat15]

Hi everyone, 

This is my first post on this site. I feel like I have no one to talk to, only my boyfriend knows so it would be nice to talk to other people about how I feel. A part of me really wants to tell my closest friends or my mom but I just fear that they’ll be in shock and never look at me the same again. I don’t want to be treated like a leper because that’s how a lot of people view people with herpes. It’s sad but it’s true. 

Anyway, here’s my story, I’ll try to make it as concise as possible. Back in 2015 I was diagnosed with HSV 1 genitally. The only outbreak I ever had was my initial outbreak and I took Valtrex 500mg daily for about 1.5 years as suppressive therapy and then just decided to stop taking it because I never got any outbreaks. I really felt like I didn’t even have herpes. Fast forward to July 2018, I kept having this recurring vaginal fissure (little cut below the vaginal opening) every time I had sex. It also happened back in April of this year. I just thought my skin was weak or not properly lubricated during sex so that’s why it was happening. I decided to go to my gynecologist and see what he thought and if there was anything I could do to keep this from happening. He looked at it and said it was a vaginal fissure, gave me some cream, but also did a swab test to test for HSV2. He said he didn’t think it was herpes but just wanted to do a swab to be sure. I got my results back a week later and the swab test came back positive for HSV 1 (which I already had) and HSV2. I was completely devastated, my stomach dropped and I felt like I was going to throw up. Now I have both types of herpes?! I went into a state of panic. I went back to my gynecologist and got a full std panel done and got an IGG blood test because I really just wanted to confirm that I had HSV2. It came back positive with a value of 3.02 so I guess it’s a pretty recent infection. I’m still so shocked because I got an IGG text for HSV 2 in April and it was negative and another one in September 2017 and it was negative and I’ve been with the same person since September 2017. He swears he hasn’t cheated on me so I guess he just didn’t infect me until he was shedding or something? Idk. He also went to get tested because he noticed he had some bumps and they did a swab and IGG blood test. He’s waiting on his results but the doctor is very certain it’s herpes and she already gave him Valtrex to take daily. This may be wrong but I can’t help to be a little mad at him and I even question if I should stay with him. He didn’t know he had herpes but he’s always been very ignorant when it comes to his health. He doesn’t go to yearly checkups, doesn’t get tested, he just assumed he was clean because he had no symptoms and because I’m clean. He did say he had a bump one time when he shaved but thought it was an ingrown hair because he actually pulled a hair out of it, who knows. I make my health a top priority and he doesn’t so it just angers me. 

Anyway, I don’t mean to rant but I’m just trying to cope with this all. It’s been about 3 weeks since I found out I also have HSV2 now. Some days are better than others but some days (like today) I feel depressed and I have anxiety. I still love myself and accept myself, I’m just afraid others won’t. Now I just feel like I’m harboring this horrible secret, is that weird to say? Thanks for taking the time to read my story, any advice will be greatly appreciated 🙂

[Catlady5000]

Hi @Kat15 first of all I am sorry, I know that must be a super bummer to get diagnosed again after already being diagnosed with gHSV-1. 

Well your test in April could have been negative since you just got infected and you did not have the HSV-2 antibodies (since you need 16 weeks since an infection for more accurate iGg blood tests) . I would wait for your boyfriends results to see what his say. I have read that HSV-2 results could be affected by HSV-1. So if your bf 

As for telling people I think this is really helpful! Family is always tricky, even though mine is loving and I think they are accepting I am scared of any judgement that is possible for my boyfriend ( he didn't know he had it never had symptoms, std full panels don't test for it, we might have had oral sex knowing anyways blah blah blah) also side note I have gHSV-1.

What I found when I told my friends (and I made sure it was my more open minded ones) they were very willing to listen and did not judge me, they felt for my pain. They are sexual beings too! Just like me and you. The thing is that this virus could befall on any of us. I usually educate them on the knowledge I have now required on herpes as an STD but also a virus. Most people are happy to listen and they usually know nothing about it. Most people also don't know that herpes is actually a family of viruses with chicken pox, shingles, mono and a couple more. I like including a bit of education when I talk about my feelings so that people know where I am coming from. I also want my friends to be educated so they can make more informed decisions regarding std tests in the future since doctors don't advocate for it. 

I think that it is easy to feel mad and you will want to think in the past but I would think about where does the relationship stand now. Obviously you feel blindsided and decided by this event. Did you ask him to go get tested before? It is irresponsible if he did not get tested. If he has the financial means and access to healthcare there is no good excuses. On the bright side if you stay together you never have to worry about giving it to each other, but that is no reason to keep you together. Also if he had it and never had symptoms maybe you would have felt there would not be as great of a risk? I know I would have been extra cautious and worried already having know of a HSV-1 diagnosis like yourself.

I don't think it is weird at all to say you are holding a secret because you are! You are holding this shame and fear inside you. Unfortunately that is a normal reaction, when this should be seen as common virus that it is. I think you have made good progress towards healing since you posted here and are sharing. I hope either advice posted to you or stories you read help you. Warm wishes for your health and journey, you will get through this. <3

[Kat15]

Thanks so much @Catlady5000! Could you elaborate on HSV-2 results being affected by HSV-1? I was wondering about this myself because I know the swab test and IGG tests are very accurate in detecting  but I’m wondering how accurate they are in distinguishing between the types. My swab test came back positive for HSV-1 and HSV-2 at the same time so that would have to mean in that one spot I had an outbreak of both at the same time? I didn’t even think that was possible. My doctor said it was though. As for my boyfriend, I haven’t had sex since I’ve been diagnosed and I don’t plan on having sex with him until he gets his results back and we can see what’s going on. He doesn’t have health insurance through his job but he makes enough money where he can afford a full STD panel test and he didn’t go even though I asked him to 2 other times before now. He kept saying he would go but just didn’t actually go. That’s very irresponsible on his part but also mine since I trusted him and he didn’t have any apparent symptoms so I can’t fully blame him. 

[Catlady5000]

I can't elaborate too much more on it since I just remember it being something I came across when doing my research. However I have read swab is more accurate than igg tests. I have read more about blood tests being affected than swabs so I don't know, it may be less likely with a swab. All I know is that it would be type 1 affecting 2 results and not the other way around in the cases I read about. So I would probably think the swab is accurate, but if your boyfriends results are contradicting then I would have suspicions. I have also read anything in the range of 1.5-3.5 is considered to be within a less certain (but again I know this to be true for blood tests and not the swab) 

I have been more focused on the blood test because the doctors actually lost my lab culture for my swab. I do know the swab most accurate during the first outbreak. 

Also I am no expert And my knowledge is limited, I just wanted to exchange with you what I've read. I also want you to know you are not alone! 

I don't know if you have read the Westover Heights forums, but they have questions people have paid for to get answered by a RN who specializes in herpes. 

[Catlady5000]

As for your boyfriend not getting those tests after you asked that is a real bummer. I would feel hurt by that. The thing is that that actually was the case with me too, but I knew he had somewhat recent std tests. It seems like the most simple and basic request for it right? I felt like it was his fault as well as mine. So part of me felt regret not being firmer even though it all wouldn't have been prevented because we wouldn't have thought of to ask for herpes in the panel as well (because it was not already in the full panel which we found out later) Be sure to be gentle with yourself through this time. We can do all the what ifs in the past but it won't change our present, I know that can be challenging because we think we could have prevented things if we acted differently. As for your relationship you know what is best for you and I hope you find someone to talk to.