Disclose when unsure of status?

[moonrae]

Hello! For the past few months, I've been dealing with symptoms that I've self-diagnosed as genital herpes. I've since tested positive for HSV-1, but have had an oral lesion in the past, so it's unclear whether or not my symptoms actually are due to genital herpes, stress, or something else. All my other vaginal and STD tests have come back negative, so I feel like it's nothing else it could be.

I've seen many many doctors, and the one who gave me the most thorough treatment (Dr. X), and who seemed to know the most about herpes told me I don't need to tell future partners about my genital herpes concerns bc he feels confident I don't have it. Everyone else has completely dismissed me and given inaccurate info about herpes, so Dr. X is the only medical expert whose opinion has been at all helpful.

My close friends have said I shouldn't tell people I have something that doctors insist I don't have, but I'm worried about guilt and putting someone at risk. I've always used condoms for intercourse and will continue to do so until I'm married, if that ever happens. 

I'm wondering what to do about future disclosure. I'm fine talking about my past oral lesion and telling them I have HSV1 and the associated risks, but I don't know whether or not I should say anything about the genital concerns. The only certain facts I can provide are that I have HSV-1 and have had an oral lesion. I feel like putting uncertainties out there will only create anxiety. I was thinking of taking daily suppressive medication just in case, but I've tried the 10day course of Valtrex and it did nothing for me.

Not sure what to do...any suggestions? Thanks!!

[WilsoInAus]

I think you have accepted that overwhelmingly the odds are you just have an oral HSV-1 infection.

I feel it is best to just set out some questions for you to answer to yourself and see what emerges for you.

1. Did you disclose HSV-1 before you found out? If not, why not? You always knew having cold sores was a possibility yet, like 95% or more of the world's population, you never tested to find out to inform partners. What is different now? Why inform now?

2. Would dislcosing oral HSV-1 be sufficient? If you kiss and give oral sex, then the chances of transmission are higher than if you had genital HSV-1. Hence to say you have oral HSV-1 that may transfer to mouth or genitals is disclosing the risk to its fullest extent that would not be exceeded by a genital HSV-1 infection.

3. If you choose to disclose HSV-1, why would you not disclose your EBV, CMV and HPV status. Each of these viruses causes more issues (when they do, which is as rare as serious complications with HSV-1) than HSV-1.

[moonrae]

Thanks, I really appreciate the input. I never mentioned my past cold sore or family history of cold sores because I didn't realize it could be passed to the genitals before I started reading about genital herpes. I am fine with talking about the cold sore and explaining the risks, just not fine telling someone I have an undiagnosed condition. I feel like most people (myself included) would want a yes or no explanation. Saying "maybe I have it but the long list of specialists I've seen have told me not to worry about it" just sounds like anxiety, and not useful information that someone can understand/research/make a decision with. If I were placed in that situation, I would view it as anxiety, and have protected sex just to be careful.