u/UnitApprehensive6005

I just passed my 3 year anniversary of being diagnosed with genital HSV1. For those unfamiliar, HSV1 is the virus that typically causes cold sores on the mouth. I received it on my genitals from oral sex from someone who did not have an active cold sore. I did not even know that was possible until it happened to me.

As a young woman in their 20s that diagnosis was genuinely one of the hardest things I have ever experienced. I was absolutely in shock. In my friend group I was always the most careful one when it came to sex — got tested regularly, asked partners about their status consistently — it felt so, so unfair because all my girlfriends were having random one night stands unprotected and yet I was the one who ended up with herpes.

Over time things got easier. I haven’t been rejected for disclosing. But still, I feel like I can never have sex like a normal person again. I am constantly in fear of transmitting. Any slight itch or irritation down there and I immediately think it’s an outbreak. I have spent hundreds of dollars going to urgent care getting things swabbed and all have come back negative after my first outbreak. I get so nervous because I read about people having outbreaks that don’t itch and are barely noticeable. How am I ever supposed to keep a partner safe if I could have an outbreak and not know it? I’m currently going through some other dermatological issues down there (possible lichen sclerosis, seeing a doctor in June) and unfortunately the symptoms are similar to how some people describe mild outbreaks. I don’t think I’ll ever be able to fully relax and enjoy sex because I’m so anxious about transmission.

It’s gotten to the point where I have totally stopped dating because I just can’t deal with the anxiety of disclosing, possibly being rejected, or worst of all - transmitting to someone else. It just feels so unfair. I am beautiful, smart, have a great job, and lots of friends. But why would someone choose to be with me if they could get herpes from me?? I know that logic is flawed considering so many people have it, but at the same time it’s a highly stigmatized condition.

I need support and encouragement from other women who have HSV. How do you know if you’re having an outbreak? Have you ever transmitted? How did you get over the mental block?

Diagnosed with GHSV1 3 years ago. I don’t think I’ve ever had another outbreak since the initial one but I’m not sure. What freaks me out is that I hear people saying that subsequent outbreaks can be nearly painless and unnoticeable. If that’s the case, how do I keep partners safe?

My initial outbreak was impossible to ignore. It looked like canker sores all over my vulva. Idk if it ever blistered or if it just went straight to ulcers. It looked nothing like the pics I see online

What do your outbreaks look like, especially those with GHSV1? Can you feel them coming? Do you feel them before you see them or do you have to check yourself down there constantly? What’s the first sign? How do you tell if it’s an outbreak or something else?

TYIA

Female in my 20s, diagnosed with GHSV1 3 years ago. Not currently on antivirals because I’m not sexually active.

As far as I know, I have not had any outbreaks except for my initial one. However, I have been having some skin issues on my perineum (between my vaginal opening and my anus) that suggest lichen sclerosis. I’m seeing a vulvar dermatologist in June to figure out exactly what’s going on, but basically the skin on my perineum seems to be very fragile and I often get small fissures/cuts in the area after a bowel movement (sometimes from the size of the bm, and sometimes it seems to just be from wiping even though I try to be gentle and use water wipes). The fissures are sometimes itchy and sometimes not. I also get similar superficial cuts around my anus all the time

When I first started noticing this I thought it could be outbreaks — my initial outbreaks looked like canker sores/ulcers on my vulva, but these seem shallower, skinnier, and don’t itchy nearly as much if at all. I’ve gotten these fissures swabbed twice and both times were negative for HSV but every time it happens I get so nervous that it’s an outbreak. It’s very frustrating not being able to know for sure what’s going on, especially when I am sexually active. I have had these fissures both while taking 1G of valtrex daily and since stopping antivirals. Whenever I got them swabbed I was taking antivirals and doctors seemed very confident that it was unlikely to be HSV if I was taking 1G daily valtrex.

I have a few questions:

Has anyone had similar symptoms?

Anyone here with both LS and HSV? I’m getting nervous reading about people who say the treatment for LS (topical steroids) triggers HSV outbreaks

If you have both LS and HSV, how can you tell the difference between an HSV outbreak and LS flare?

TYIA!