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HSV-1 diagnosis... Confused and frustrated


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I tested positive for HSV-1 a couple of days ago, and the experience was really bewildering. I went to the doctor for a genital rash, but the doctor told me she would be very surprised if it was herpes because it didn't look severe enough. The next day I got my positive result for HSV-1. 

They emailed me a PDF of my results with a short message that said starting antiviral medication now wouldn't be helpful. That's it! No other information, no way to get answers, no recognition of how difficult that would be to hear. 

I made a second appointment to ask more of my questions, especially about how I can have safe sex with my partner. I was a bit frustrated, because I really had to keep asking these specific questions and the doctor seemed annoyed. It felt like I was being shamed for asking specific questions about my sex life. How else was I going to figure out what to do if my medical provider doesn't share any info about what this diagnosis means?

I'm just feeling alone and sad. I think about how difficult my future dating life will probably be, especially as a trans man. It feels like things like this, being trans and now having herpes, are barriers that will keep people from ever wanting to be with me. The pool of people who would date a trans person is already small 😞

 

I have some other questions about genital HSV-1 and I'm hopeful that some of you might have answers! 

Can you get genital HSV-1 without sexual contact? Is it always from oral sex with someone who has HSV-1?

Do I need to disclose before kissing anyone? (If I never have cold sores?) I will of course if I can transmit it that way, so I want to know the level of risk. It makes me sad to think that it will ruin moments of spontaneity 😕 

Who do I need to disclose to in my life? I obviously shared this with my partner and I've told a couple of trusted friends, but I don't feel ready to tell my family. 

I've heard that genital HSV-1 is harder to transmit than other versions of the virus. Is that true? 

Can someone with genital HSV-1 receive oral sex? 

How do you start feeling more comfortable and less fearful with sex again, if your partner is on board? 

 

Thank you in advance ❤️

 

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Hello @icetrails

I hope you are doing okay. I'm sure it is scary and overwhelming right now, but I promise it will all be alright. 

I am so sorry about your experience with the doctor you talked to. You deserve respect, and frankly doctors should be happy when people ask questions-- it is indicative that the person cares about their own health and well-being (and their partner's health and well-being!).

I am also 22 years old and am a college student, and I also have GHSV-1. I identify as a female and I was female at birth. In regards to doctor situation... Sadly, as young people, sometimes older people (especially in medical situations) treat us in a dismissive and patronizing fashion, which is just not professional nor respectful. It is totally okay to advocate for yourself in a respectful, way too! If you feel a doctor isn't being kind to you or meeting your needs, it's totally okay to speak up about that. 

In terms of dating life, don't let fear keep you from trying and having relationships. The right person will not be turned away by you sharing anything about yourself, whether it be that you are transgender or have HSV. You have nothing to apologize for or be ashamed of. ❤️ Hold your head high! 

Also, thank you for posting and sharing your story with us all. I think that so many folks can benefit from this thread, especially because the intersectionality of transsexuality and HSV is not discussed enough.  

Here are the answers to your questions:

Can you get genital HSV-1 without sexual contact? Is it always from oral sex with someone who has HSV-1?

HSV is spread from skin-to-skin contact with the infected area. A lot of people think sexual contact means genital to genital, or oral to genital, but it can be from other skin-to-skin contact forms, too. So, the contact may not necessarily be sexual, but the 'contact' part means skin-to-skin. So, if you have HSV in a private place, it would make sense for it to have been from sexual contact. In general, it could have been from contact with someone's body part that has HSV (so it could be lips, their genitals, thighs, buttocks, and hypothetically their hands if they have herpetic whitlow (herpes on the finger)). 

It is NOT always from oral sex. Gential HSV-1 can be passed to someone lips or genital region. In recent decades Genital HSV-1 has risen in numbers because of the higher rates of oral sex, especially among younger adults. 

Do I need to disclose before kissing anyone? (If I never have cold sores?) I will of course if I can transmit it that way, so I want to know the level of risk. It makes me sad to think that it will ruin moments of spontaneity 😕 

This is a great questions. So, if you have HSV-1 on your genital area, it means you can only pass it from this area. HSV is not blood-bourne; it does not live in your blood and does not infect the entirety of your body. You cannot transmit it via kissing (unless you have oral HSV-1, which presents as cold sores or fever blisters). You do not need to disclose your H status until things head to the lower regions/you are going to physically intimate with someone. 

Who do I need to disclose to in my life? I obviously shared this with my partner and I've told a couple of trusted friends, but I don't feel ready to tell my family. 

Sharing the information with your partner is essential. You did your part! You do not need to share this information with anyone you do not want to besides those you will be intimate with. 

I've heard that genital HSV-1 is harder to transmit than other versions of the virus. Is that true? 

Generally, yes. However, depending on different factors, some people may be more likely to contract HSV-1 than others. Three factors typically affect the transmission likelihood of HSV in general: anatomy, medical history, and sexual practices.

Anatomy:  People with vaginas are more likely to contract HSV because the anatomy of the vagina includes more accessible mucous membrane areas (where HSV enters the body). 

Medical History:  For people who have autoimmune illnesses, they may contract HSV-1 much more easily than someone who does have any autoimmune illnesses. Also, those who take medication that suppresses the immune system may also be at a higher risk for contracting it. 

Sexual Safety and Practices:  Using a dental dam or condom when receiving/preforming oral sex can help reduce the risk of transmission, but cannot 100% prevent it. Some people take suppressive medication, but this is typically for those who have frequent outbreaks, do not want to use protect or have a long term partner, and/or GHSV-2.  

Can someone with genital HSV-1 receive oral sex? 

Yes. Someone with GHSV-1 can receive oral sex, but obviously not during prodrome symptoms (tingling, burning, itching, redness, etc that occurs before an outbreak (kind of like a warning bell!) or during outbreaks. Could you still pass H even if you aren't experiencing symptoms of prodrome or have an active outbreak? Yes. This is why understanding the risks and being open with your partner, and being safe, are essential. 

How do you start feeling more comfortable and less fearful with sex again, if your partner is on board? 

This is the million dollar question! Honestly, it all starts with self-acceptance, kindness, and positive self-image. You are NOT a danger. You are not contaminated or bad or dirty. You are safe and you are a beautiful human being. You are a wonderful person with a common virus. H doesn't change anything! 

You may be afraid of passing it to your partner, which can feel really scary. Remember that you cannot control when the virus sheds or when you have an outbreak, but you CAN control honesty and offering information to your partner. You were honest with them and did your part. If you feel like they should be more informed, have them check out some information (we have fact sheets on this site!). If they consent to still being with you and being physically intimate after disclosure and understanding risks, that is their choice. Of course, you do not need to do anything you don't want to do until you feel ready. Take your time, and heal from everything, be kind to yourself, and remind yourself that you are deserving of love and respect, and that H is just a common virus. It's the social stigmas that make it seem scary and bad!

I hope this all helps you! 

Reach out for any advice or support anytime. 

Sending happiness and positive energy your way! 🙂 

- grace

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@Flowerteacher55 Thank you for your kind response!

It's really comforting to know that someone else my age has been in a similar situation and is doing well (I hope!). I know many people who have oral HSV-1, and they have been very supportive so far. I know it's just stigma, but I feel somehow worse having GHSV-1. I think that's something I'll have to process and let go of. 

Being trans has also been a complicating factor, and I was very fearful of going to see a doctor because of past negative experiences with health care providers. The doctor I saw who initially ran tests for me was great, and didn't make me feel weird about being trans, it was just the follow-up that was lacking! 

 

Thank you for your answers to those questions! I imagine I'll continue to learn a lot about what this diagnosis means. I'm pretty perplexed about how I got it, especially if my current partner tests negative (he's getting a test soon). I guess it's not going to be all that helpful to dwell on how I got it, since so many people have no idea they have herpes. 

Thank you again for your response! It really helps to know there are other people out there, especially people my own age, who are living with HSV and living full healthy lives. 

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