optimist

@janedoe Love it! Thank you for sharing.

@Elise1977 I agree with you about the dialogue. I also think it helps when the HSV+ person takes steps to move on rather than trying too hard to influence the prospective partner. I don't know why exactly, but it seems this can trigger the prospective partner to reevaluate. And even if they don't reevaluate, the HSV+ person gets the benefits of having moved on.

@gr8fulheart - I'm so sorry. FWIW, some people do come around later after initially saying they can't risk it. Obviously it's important to respect someone's choice, but I've had this happen already in the brief time I've been aware of my positive status, so I want you to know it does happen. And I understand how people can have these contradictory responses because my own reaction to my diagnosis was strong and negative but changed with time and education. I also have a friend who tells me I should explore dating sites for HSV+ people. I tell her that dating site is called Planet Earth. The majority of adults on any given dating site are HSV+.

Great topic! Ella Dawson's TEDx is fantastic:

@MMissouri Thank you! We met and really hit it off. Feels so good to have moved out of the mindset of feeling like everything would have to change and my sex life would have to be less spontaneous and fun. It was just an extra little conversation. No biggie.

@Confusedandscared - I can help with a few of these. 1) I believe I read 98% of cold sores are caused by HSV. I don't know what the remaining 2% are caused by. Apparently 98-99% of oral HSV cases are caused by HSV1, 1-2% HSV2. 4) Yes, just like with genital herpes, oral herpes can be transmitted when no sores are present. In both cases, the risk of transmission is significantly higher when a sore is present and when you feel a sore coming on. 5) The risk of transmission from female to male, assuming you refrain during outbreaks, is 1% per year if both condoms and antivirals are used, 2% if one or the other method is used, 4% if neither method is used. So not using condoms would increase risk but not by much, so that's more of a value judgment for the two of you to make, I think.

@Confusedandscared I'm glad you're here but want to clear up a couple items you mentioned. First, yes, HSV1 can spread from the mouth to the genitals. But it doesn't change to HSV2, it remains HSV1 but in the genital area. Some refer to it as GHSV1 to make the location more clear. It is believed a fair proportion of genital herpes infections are caused by HSV1. I've seen figures cited such as "close to half," "roughly half," and "more than half." On another topic you mentioned, my understanding is that roughly 40% of people with HSV2 also have HSV1. That's much lower than the percentage of HSV2- people infected with HSV1 but it's still significant. So there appears to be partial cross immunity but I don't have the precise details on that. I have to think some of the immunity must work in the other direction (HSV1 providing some immunity from HSV2) because I think more than 40% of the general population is infected with HSV1 by young adulthood. Forgive me for not addressing your other questions. I will leave that to other posters.

Happy to be posting in this section, sharing a disclosure success story. Hopped on a dating site that is generally known as a place to meet hookups. When I received my diagnosis, I thought I would never be able to responsibly use that dating app again but my thoughts on that changed after educating myself about relative risk, starting antivirals, and becoming more comfortable with the prospect of having to have the disclosure conversation. I matched with several people and began chatting to get to know them a little. One stood out as being particularly interesting to talk to so I focused on my communications with him. Our communication was easy and fun but we quickly moved beyond small talk to discussing real stuff. I know it is generally advisable to wait until you've met and humanized yourself before disclosing, but we had been chatting a while and an opportunity came up for me to bring up the topic of safe sex practices, so I went for it. First, I asked about his approach to safe sex and when he last had STI tests. In providing answers to those questions, I had an opportunity to share my own thoughts and provide my own STI test history. This was over text. There were times when I typed and erased certain parts of the disclosure because I could sense I was being defensive and wanted to provide the information in a more objective way. It was challenging but I was able to do it, then took a deep breath and sent the message. This man is quite young (20s) and I had readied myself for the possibility that the stigma would be too great to have much disclosure success with younger guys with less life experience. Not true in this case. His response was compassionate, acknowledging what I had shared but also reassuring me of his continued interest and attraction. He went on to share that he has tested for HSV and is positive for oral HSV1. When he received that diagnosis, he was pretty freaked out and educated himself, so he is aware of how transmission works with HSV. Thankfully, he was able to apply what he understands about his HSV1 to a partner with HSV2. He thanked me for being open about it, I thanked him for sharing about himself as well, and then we moved on to discuss other things. It didn't change the course of our overall conversation or intentions and we plan to meet soon.

@lifesentence I know you are hurting. I don't want to minimize that. But I will share some information that helped me when I was having similar thoughts about my sex life being over. (I am an older divorced woman who is mostly looking for a physical outlet, not a life partner.) There is risk in every casual sex encounter. Speaking strictly about HSV, according to projectaccept.org, roughly 64% of people in their 20s, 81% of people in their 30s, and 93% of people in their 40s are infected with HSV1, HSV2 or both, meaning that the majority of adults engaging in casual sex are capable of transmitting genital herpes through either oral sex or intercourse. I know it doesn't feel that way. The stigma is powerful and the fact that the majority is unaware of their status generates an illusion of rarity that can make us feel like we are in a small minority of damaged people who should be quarantined from the "healthy" people. The facts simply do not support that. It sounds like you are concerned about the consequences of disclosing and feel that women are less likely to be accepting than men. Based on the posts I've read here, I haven't noticed a pattern like that. You may want to check out hippyherpy's numerous posts. I think he has stated about 80-90% of his prospects have chosen to have casual sex with him after he disclosed. Some people will walk away, yes, but it seems most are accepting. I would also encourage you to talk with someone about your anger toward the person who transmitted the virus to you. Pushing through that anger may help you to heal and move through the grief process to acceptance. I know you are hurting and hope you can find peace.

@Pop - Normally I would say this sounds like an anxious person who should not be in such a relationship. In this case, given her existing health concerns, I understand why she is so nervous about it. Is it the case that she would otherwise refrain from kissing *anyone* who might have oral HSV1 (most adults)? Or do you think she is making some distinction between HSV1 and GHSV1?

@Pop - It sounds like your concern is passing along HSV1 via kissing. You mentioned you don't have HSV1. Is that an assumption based on lack of symptoms or have you been recently tested? And has the woman with Lupus been tested to check her HSV1 status? The majority of adults are infected with HSV1, so thought I would ask.

@BoatyMcBoatface - I'm sorry that happened to you. Who knows why they had such a strong reaction. Probably just an ignorant jerk but you never know, they may carry shame about their own status. A girlfriend of mine has strongly encouraged me to try a "positive" site because she thinks I will otherwise have too much anxiety about transmission. I tried to explain to her that the vast majority of adults on regular dating sites are capable of transmitting herpes one way or another but it didn't get through.

@Sassy2543 Love it! Thanks for sharing!

@serendipity515 - Also, I'm not sure where they got the information that genital herpes rates as a whole are declining. Mostly I've read there has been a decline in the average HSV2 infection rate for 14-49 year olds and an increase in GHSV1. I have no idea why this is. If I had to guess, and if it is not simply due to better testing ability and awareness that HSV1 can infect genitals, I would say maybe more people are using condoms which partially protects from HSV2 but more people are also having oral sex during which barriers are not as commonly used. I've read fewer young people are getting oral HSV1, so perhaps there is a domino effect of younger people having reduced partial immunity to HSV1 so they get GHSV1 at higher rates, but those same people with GHSV1 get HSV2 at lower rates because the GHSV1 is providing partial immunity, therefore lowering the overall rates of HSV2? I really don't know. One issue I've seen is that, although it is recognized that HSV1 can cause genital herpes, the statistics for genital herpes infections almost always reflect only the percentage infected with HSV2. Of course, it's difficult to quantify the GHSV1 cases because blood tests don't reveal the location, but there must be some way they are coming up with the statistic that "up to half" or "about half" or "more than half" (I've seen all these varied references) of newly diagnosed genital herpes cases are caused by HSV1. I assume it is swab based. But I very rarely see those numbers integrated into genital herpes statistics. The only exception I can think of is the statistic that 25-30% of pregnant women have genital herpes which I believe includes both GHSV1 and HSV2. Another issue is that the infection percentage increases rapidly and sharply with age in certain demographics (such as adolescent girls, young black women and single non-black women in their 40s) so providing averages does not provide a clear picture of risk in such cases. Furthermore, because genital herpes is not curable and many people continue having sex beyond 49 years old, the percentage of infected people only continues to increase. If we consider how many people are capable of transmitting genital herpes through a sex act, we're talking about anyone infected with either HSV1 (with greatest risk being oral to genital transmission) or HSV2 (risk being intercourse). I think it's something like 2/3 of people in their 20s, 4/5 of people in their 30s and close to everyone in their 40s who is infected with at least one of the viruses.

@serendipity515 - I'm not sure but it appears they may have used the average HSV2 rate for 14-49 year olds as the max percentage for the highest age in the range for combined HSV2 and GHSV1, so two problems there. Then they mentioned HSV1 also causes genital herpes but did not appear to include HSV1 cases in the overall percentages of people infected with genital herpes. Also mentions people with HSV1 are likely to only have a single outbreak but I believe it is even more common for them (and for people with HSV2) to have no outbreaks at all, so more context on that would've been nice if the purpose is to raise awareness.

Yes. Some of these stats appear to be way off. It is correct that more women than men are infected with HSV2 and the percentage increases with age, but the percentages they site for different ages appear to be way, way off. Especially unfortunate when the goal is to increase awareness.

@MMissouri - I would assume there are two reasons foreskin is more susceptible. First, because mucus membranes are generally more susceptible to infection. Second, because I assume the skin would be more prone to micro-tearing. This is also why vaginas and anuses are more susceptible to infection, especially when combined with sexually activity such as intercourse that can cause micro-tearing. I have no position on circumcision but here's a link to a relevant research study: http://www.nejm.org/doi/full/10.1056/NEJMoa0802556?siteid=nejm&keytype=ref&ijkey=RbvFxmaQQyTs.& Another possibility I didn't mention earlier is that I think there is increased awareness that most women do not orgasm during intercourse and perhaps this has lead to an increase in oral sex with the goal of mutual pleasure. If so, I think that's a good thing. I also appreciate some young people choosing to engage in oral sex as an alternative to intercourse because there is no risk of pregnancy. That is not to say people should not be educated about the risk of STI transmission through oral sex, but I think there may be positive aspects of an increase in oral sex rates. Just my opinion.

I will add some additional possibilities regarding the perception that GHSV1 rates are increasing. - Decline in rate of oral HSV1 infections in childhood, diminishing partial immunity to GHSV1 - Decline in circumcision rates, diminishing partial immunity to GHSV1 - Improved ability of tests to distinguish type - Increased awareness through recent research that a high proportion of genital herpes cases are caused by HSV1, leading to more type testing instead of an assumption that cold sores = HSV1, genital herpes = HSV2. - Increased awareness through recent research that HSV can spread asymptomatically, leading to awareness that HSV1 can spread from mouth to genitals in cases in which there is no history of cold sores.

@suzyq15 - I'm new to all this, so take my advice with a grain of salt, but I would advise you to say nothing more about it, unless he specifically asks about it. You've done your part. He is processing. Continually mentioning it may be counterproductive at this point. The first guy I disclosed to, we were in a relationship at the time, and he specifically told me his stress level increased the more often I mentioned it. It was challenging/impossible for me to keep quiet about it because I was also processing the information so my views were changing. Also, he had so many misconceptions and I mistakenly believed sharing facts would make a difference. The only difference it made was stressing him out more. Around the same time, I had a female friend on the other side of the same dynamic. A guy disclosed to her and after a couple days, she got too stressed hearing about it and shut down. A little later, I disclosed to another guy and he disappeared for a while. I made no attempt to communicate with him further as I wasn't particularly invested in the outcome and didn't really appreciate how he suddenly disappeared. He later contacted me to tell me he was fine with it. Ideally, someone can give you timely feedback in a compassionate way. But when they are confused or anxious and you have already provided them with resources and details of your own experience, I think it's better to let them go process without interruption. Just my two cents.

@MMissouri - That's so disappointing to hear. I recently read a statistic that roughly 20% of women with 2-4 lifetime partners are HSV2+. While number of partners increases the odds of contracting HSV, it is very common even among women with few partners. Likelihood of contracting the virus also increases with age, regardless of number of partners, because more potential partners are positive as they age.

@Scared16 - I appreciate your insight. I think part of why you've seen this is because people are educated to believe everyone who contracts herpes will have ongoing, widespread and painful ulcers. This is absolutely true for a minority of people, just as it is true for a minority of people who contract oral herpes. Secondly, because the testing model is based on treating symptoms, not reducing asymptomatic transmission, it follows that most of those diagnosed have experienced painful symptoms. Most of those who are asymptomatic or have very mild symptoms (the majority of people with HSV) are unaware of their positive status and therefore do not post about it. Finally, because those newly diagnosed are as aware of the stigma as anyone else, they are processing both the physical pain and the impact of the stigma. That's a lot to process. I shouldn't speak for everyone, but my own experience was that it took me more than two months to get over the stigma enough to rationally assess my situation and that was in the absence of symptoms. There were days when I felt suicidal, based solely on my fear of how my future would be negatively influenced by the stigma of carrying the herpes virus. But as happens with most people who receive this diagnosis, those extreme emotions eventually passed.

@hippyherpy - I'm not certain about this, but I think there was a study that brought greater attention to rates of asymptomatic shedding of both oral and genital herpes and at that point more emphasis was placed on disclosing that risk of transmission is not limited to active outbreaks. However, because it is seen as less manageable to avoid asymptomatic oral transmission (daily affection, etc.), more attention was given to counseling patients about reducing asymptomatic genital-to-genital transmission as that's seen as more optional and manageable. IMHO, an unfortunate byproduct of this is that there is a public perception that asymptomatic oral-genital transmission is very rare or even non-existent while asymptomatic genital-genital transmission is exceedingly common. It makes it difficult for people to put the true risk in perspective and broadens the gulf in perception between oral herpes and genital herpes.

I think that if everyone who had oral HSV1 had to disclose like the people with genital herpes, that would go far towards reducing the stigma all around about herpes. @hippyherpy - I agree it could reduce the stigma but I believe it would first need to become a routine part of STI testing. Most people test only because they have bothersome GENITAL symptoms, so the pool of people testing positive for HSV1 with no genital symptoms is very thin. And even those people (who have no genital symptoms but test positive for HSV1) can't know if the location of their infection is oral or genital which makes meaningful disclosure difficult.

@hippyherpy As far as I can tell, those who are expected (by much of society) to disclose are those who have been positively diagnosed with genital herpes. This typically includes the following people: 1) people with GENITAL symptoms who sought treatment and were positively identified as having HSV1, HSV2 or both, and 2) asymptomatic people who tested positive for HSV2 (because it is assumed the location is genital). Perhaps it also includes people who get very frequent cold sore outbreaks (a minority of HSV1 oral cases) because the risk of transmission of herpes to the genitals is significantly higher during oral outbreaks. The 88% of people unaware of their HSV2+ status are not expected to disclose because they don't know and because most people assume you'd know if you have herpes. The people who had positive HSV1 results but no genital symptoms are not expected to disclose because it's not possible to know where the infection is or it is assumed to be oral. The people who had one cold sore twenty years ago or get one cold sore per year are not expected to disclose because it is assumed to be a fairly typical and normal part of being human and nothing to be alarmed about. I don't think expectation of disclosure is based on HSV TYPE but rather location, even though oral herpes can be transmitted to the genitals. IMHO, I think this is an unfortunate byproduct of there being no reasonable workaround to prevent people from passing oral HSV1 through normal affection combined with an attempt to scare sexually active young people about the dangers of sexual intercourse. I don't think the medical community is behind it. If anything, they are generally very "meh" about both types of herpes and more focused on treating symptoms than preventing transmission. Also, they don't uniformly advocate disclosure when counseling patients. I think the expectation of disclosure and illogical nature of disclosing one type and not another is societal and rooted in stigma and misinformation. Just my two cents. Having said all that, I do feel an obligation to disclose my known status because the risk is not nonexistent and the "what ifs" are too much for me. I know that it will sometimes be a deal breaker and it is frustrating to me that the deal breaker element is mostly (though not entirely) based on stigma and an inability to weigh known risk against unknown risk in a population largely unaware of their status, but I've dealt with other such things in life and have come through just fine. I'm just adding this to the pile of things that makes me imperfect. We're all imperfect. It's part of being human.

As for the educational part of rebranding herpes, I would like to hear doctors routinely tell patients the following when they request a standard STI panel: - A standard STI panel does not include tests for HSV or HPV, two of the most common STIs. - The majority of the population will contract both HSV and HPV at some point in their lives. - Condoms only provide partial protection from HSV and HPV. - HSV can be spread from the mouth to the genitals through oral sex, even when symptoms are not present, but the risk is particularly high when an oral sore is present. Transmission works similarly for genital-to-genital contact with risk being exponentially higher when a genital sore is present. Reasonable risk management includes avoiding oral sex when oral sores are present and avoiding genital-to-genital contact when genital sores are present. - Most people with HSV and HPV are unaware they are infected due to an absence of symptoms or very mild symptoms. - Contracting HPV and/or HSV should be considered an assumed risk in casual sex situations.