[Question #5923] Struggling with HSV-1 disclosure.

18 months ago
Hi,

So ever since I was ~ 14 I thought that I had oral hsv1. 

Fast forward to my senior year in college and I get some strange genital symptoms a day after fellatio. I had what appear to be a small cut and a small bump with white plus coming out. I immediately get these symptoms swabbed. They come back negative and the doctor assured me that my symptoms didn’t look/sound herpetic at all. 

5 months later I get 2 genital ulcers that have white/yellow pus. They appear under my urethra. The only other symptoms I had was a feeling extreme vaginal dryness and slight irritation with urinating. Sadly, I was unable to get these second round of symptoms swabbed because I was living in a remote village overseas at the time with very little money. 


I ended up getting a blood test and tested positive for HSV1 and negative for HSV2. 

I started to assume that I have HSV1 genitally and that maybe I never did have it orally. I’m aware that an oral infection makes it rare to get it genitally so I figured that my symptoms proved that I was initially wrong about having it orally. 

Fast forward to two years (the present) and I’m still struggling with accepting that I do have this genitally— especially since I never got the ulcers swabbed. I haven’t had any other symptoms pop up and now I fear I’ll never have a definitive answer.

I recently disclosed for the first time to a potential love interest that I had GHSV1 (even though I’m not 100% sure). We had dated for a month and he seemed so into me. He was okay with it at first but then he decided not to pursue things. I wasn’t devastated. And am still reeling from the shame and rejection. I’m so depressed with the prospect of having to disclose this for the rest of my life. My mom said that no man would ever want to date a woman with herpes. I just feel so defeated. 

My questions are:

1. If you were my doctor would you recommend that I continue assuming that I have HSV1 genitally? 

2. Would it be wrong for me to insist on blood tests before engaging 
18 months ago
2. Would it be wrong for me to just insist that parents test for hsv1/hsv2 and then disclose from there before engaging in sexual activity? 
18 months ago
3. Could I get away with saying that I carry the cold sore virus (hsv1)?
Terri Warren, RN, Nurse Practitioner
Terri Warren, RN, Nurse Practitioner
18 months ago
I'm sorry you were hurt by someone rejecting you for something that half the US population has!  The next woman this guy meets may well have HSV 1 and not know it. 
You do NOT know that you have HSV 1 genital infection. If you had your first symptoms swab tested right away and were negative for both HSV 1 and 2 and the doctor said this didn't look herpetic, I'm not clear why you seem so clear that it was.  If I was your health are care provider I would advise you against telling people that you have genital herpes.  You don't know that and in fact there is a good deal of evidence that you don't. 
I think it is fine both to request testing of future partners AND to say that you have HSV 1 and you believe you've had cold sores as a child. 
Also, you mentioned fellatio - so you were the giver of oral sex to the other person?  That doesn't result in genital infections

Terri
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18 months ago
Ah sorry, I meant that I got the first round of symptoms after receiving oral. 

I guess my 2nd round of symptoms is what is worrying me because I couldn’t  have them professionally looked at. My line of reasoning for assuming I have g-hsv1 is that my 2nd round of symptoms were 2 ulcers... which I’ve heard is a classically herpetic thing? They lasted for about 4 days before they went away— no scabbing at all. I haven’t any symptoms since— I wish I knew what had caused them. 
Terri Warren, RN, Nurse Practitioner
Terri Warren, RN, Nurse Practitioner
18 months ago
Well, they could be HSV but without a swab test, it's difficult to know for sure, and I understand that that is really frustrating. 
If your first symptoms were herpes, I think whoever saw you might have suggested that as a possibility, no?
Are you now in a place where you could have a lesion swab tested if it came up?
I think in terms of disclose, you can really only say that you test positive for HSV 1 but you don't know where the infection is on your body.

Terri

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18 months ago
Ah it’s just that the stigma for G-HSV1 has been unbearable. Everyone in my family has O-HSV1, my friends have it too— and none of them disclose. So many of my friends regularly engage in oral sex with their boyfriends and they’ve never disclosed their cold sores even when I’ve told them about how it could transmit genitally. I just am blown away by this double standard when it comes to ghsv1 versus ohsv1. Since I don’t know the location—would it be wrong from a medical/ethical standpoint for me to just start telling potential partners that I have Oral Hsv-1 (the cold sore virus)?


Terri Warren, RN, Nurse Practitioner
Terri Warren, RN, Nurse Practitioner
18 months ago
I think it would be best to say that you have HSV 1, the usual cold sore virus.  I think it is dishonest to say you have it orally unless you really do recall having a cold sore at some point in which case, that's fine to say you have oral HSV 1.

Terri
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