HikingGirl

@ash2018 Let yourself be sad tonight.....grief (like the loss of total sexual freedom, a loss to some degree of your health, the loss of control and not being able to figure all of this out right now) does not rise up the graph chart in a straight line. It looks like a bunch of ups and downs which ultimately trends upward. A researcher at UCLA found that simply naming a negative emotion that you're feeling reduces your amygdala response by half. Half! I have this list posted in my bathroom to help me when I feel upset and can't quite put my finger on what the emotion is: https://www.cnvc.org/sites/default/files/feelings_inventory_0.pdf Yeah, I'm that much of a nerd. :) {hugs}

Welcome, @fitnessfanatic! As for what to say regarding the cold sores if someone asked, I would probably just say something nonchalant like, "Oh, it's just a cold sore." If a good friend pressed further because they're not used to seeing you have them, I' might say, "turns out if you carry the virus, they can pop up at any time, even if you've never had one before." For what it's worth, I personally don't think anything of seeing someone's cold sore. (I have HSV1 and HSV2, but I've never experienced a cold sore--only about a third of those who have oral HSV1 actually get cold sores.) At worst, it's like a pimple....you just kind of hope that person doesn't have a hot date that night. Please know that I'm not trying to minimize them at all. I'm just offering my perspective to show you that most people don't think they're a big deal. It sounds like you're doing everything you can to avoid transmission. I'm pretty sure your pillow cases, etc are okay. The virus doesn't live but more than a few seconds (I think I heard 10 seconds once?) outside of the body on clothing, etc.

@youngh, You can just call your doctor's office and ask for the nurse or medical assistant to the doctor you saw. You might have to leave a voice mail if they're with a patient. Just give them your name, date of birth, and explain you'd like them to pull your chart and confirm what type of test was done during the month of X and which type of HSV (1 or 2) you tested positive for. That's very easy for them to do.

@youngh, you'll need to be taking antivirals for 5-7 days before having sex to get the benefit of reducing the chances of transmission.

Hi, @youngh, and welcome. I am glad you found us, because you are most certainly not alone! First of all, there is not a single thing wrong with you. {{hugs}} Just wanted to get that out of the way. :-) You happen to have a very common virus that is easily spread because it often doesn't have any symptoms or the symptoms are really mild. You are not the first person to get HSV with their first partner. When your peers start having sex, their odds of getting HSV will rise as they age and have more partners. Do you happen to know which type you have? This interactive graphic combines both HSV1 and HSV2, but it'll show you that you're in goood company. It's one of my favorite links: http://projectaccept.org/who-gets-hsv/ Another great link for basic information about HSV is here: https://www.westoverheights.com/herpes/the-updated-herpes-handbook/ You're smart to listen to your instincts about telling this new boy. Someone once told me that when it comes to sharing really vulnerable stuff, the other person needs to have *earned* the right to hear my story. Sometimes the hardest part is trying to tell whether I can really trust someone, or if I like them so much I simply want to believe they are trustworthy. I told a friend once because I just had to get it off my chest. She didn't tell anyone else, but she didn't know how to support me either, and it brought up some anxiety in her about how her brother acquired HIV a few years earlier. So honestly, I didn't feel any better after telling her. Your experience may be different. But just know that not everyone is going to be able to support you in the way that you need, and it will have *nothing* to do with you. I'm really sorry that your mom and sister haven't been very supportive. That sucks. No matter the age, most people know almost nothing about herpes, and your mom may be at a loss for how to help you. If you click on my username, you'll find the posts I've started. Look for the two-part post called My Herpes Manifesto. I don't know what kind of relationship you have with your mom, but if anything in that post resonates with you, you could print it, maybe highlight a few areas, and give it to your mom. She might be eager to know what this is like for you and how she can help you. As for your sister, tell her to relax. It's virtually impossible to acquire HSV from sharing a towel. Maybe if it was wet and you rubbed it against open sores and she used it seconds later.....MAYBE.....but honestly, she'd have better chances winning the lottery. Like you, I didn't really have anyone to talk about this with, and I'm more than twice your age. My mom and sisters are very religious and can be quite judgmental. I also told a couple of friends, but I think they honestly couldn't relate and didn't know how to respond, so they weren't able to be a support to me either. What *has* really helped me is this message board and also talking to a counselor. You would be amazed at how awesome it feels to have someone truly listen to your concerns and validate your feelings. They're also really good at being objective and helping you to see the big picture. I promise you this: if you try to ignore your feelings of resentment, anger and fear, or stuff them away deep inside, they WILL resurface later on at the worst possible time. There is something magical about letting them out with a person who won't judge you. Finally, I leave you with good news....you WILL be okay and your sex life is definitely not over. :-) Tons and tons of people with HSV meet others who are fine with it, and you will too when the time is right and you meet the right person. {{more hugs!!}}

No worries (I usually see most posts), and you're very welcome. It makes so much sense that having your experiences with vestibulodynia would help you here with HSV. Someday a friend or family member is going to have a hard time with a medical diagnosis (or lack of one) and you're going to be a huge support to them. And then to have the added support of your fiancé is just awesome. Most people on this board need to hear, over and over and over, that there *are* men and women who are willing to look past the virus to see the person. Give him a hug from all of us.

Hi @EHL. If he's not already at the 1 pill twice a day level, I would start with that. 500 mg of Valtrex taken once a day is often used for suppressive therapy (to prevent outbreaks), while 500 mg taken twice a day is the recommended dose for episodic therapy. In the interest of full disclosure, my outbreaks are very mild and I have not needed to use most of these suggestions. But I've heard them from reading and from other posts, so I'll mention them anyway in case one of them helps your hubby. -Topical pain relieving sprays (available OTC with lidocaine or xylocaine in them) -Urinating into water (if the lesions are internal) -Wearing loose clothing -Keeping the area cool and dry (a blow dryer on the cool setting after a shower is perfect for this--I learned this trick when I was having frequent yeast infections and I still do it daily!) -A sitz bath with some kind of drying agent like Burrows Solution or Epsom salts. I've heard people say this might not be very comfortable if the lesions are still pretty raw. -A moistened but cool tea bag (black tea) placed against the lesion. -Tea tree oil is great for itching, but MUST be diluted (like with a wet cotton square or coconut oil. A little goes a long way here! Also probably best used on lesions that are healing nicely and not open ones. This would likely hurt like hell on an open sore. -Rubbing coconut oil on the sores. -Lysine supplements help some. There's no research to back it up, but if I were in pain, I'd be willing to try it. My last suggestion is a little unconventional, and frankly, I'm nervous about mentioning it for fear of being laughed out of the room, but I'm a huge fan of vitamin C so I'll just say it anyway. Vitamin C has strong antiviral properties and it has saved me from a viral infection induced vertigo years ago which the regular doctors couldn't figure out, and countless colds. On Amazon you can get packets of liposomal vitamin C (about a dollar a packet--I won't pretend it's cheap) which has great absorption if you take it internally (just put a little water in a shot glass, add the packet of goo and take like a shot). I've had HSV2 for a couple of decades and never had an actual raised bump/sore until last year. Out of desperation, I opened a packet of the liposomal C and applied it to the sore a few times a day. It does not sting. I swear that thing was healed in no time. Now for the love of god, do not open a vitamin C capsule and apply the powder instead because it's cheaper. Vitamin C powder is ascorbic acid...note the word acid. :-). Fine taken internally, but not on an open herpes sore. If you want to try it anyway, mix it with a little baking soda to cut the acidity and experiment slowly. Good luck and if you find any other treatments that work for him, we'd love to hear about them!

I don't think there's anything wrong with STI dating sites if it helps to ease some of the anxiety that comes with dating. As @Bambina3 mentioned, there's a ton of evidence on this forum alone--and in your own life--to reaffirm that they need not be your only option. I once did a guided art journaling project using some phrases of encouragement and support, as if I was telling them to a friend, only I was saying it to myself. Then I chose an overarching theme, which was, "No matter what happens, you'll be okay." You can't imagine how often I look at that. Perhaps this latest outbreak and the resulting emotions that are bubbling up are an opportunity to further develop and strengthen your self-acceptance. In my own experience, the work I've done around self-acceptance as a result of my divorce (and a year later, the herpes diagnosis) has done more for my confidence and inner peace than anything. I wish the same for you. {hugs}

Thanks for sharing that link, @Sil88. It has helped me to better understand what my mother is going through. The mind is indeed a powerful thing.

That's interesting what you mentioned about only Valtrex being FDA approved for lowering the risk of transmission. I went back and re-read a few sections of the Terri Warren book to understand that better, since I do not want to go back to Valtrex when I resume dating someday! Warren says that the reason Valtrex is the only FDA approved antiviral for reducing the risk of herpes transmission is because it's the only medication which has been studied specifically for that outcome. In other words, no one has bothered to do the same study with Famvir or Zovirax (acyclovir). However, all three anti-vitals have been shown to drastically reduce shedding, so there's reason to believe the others would also work in the same way to reduce transmission. It's also worth mentioning that valycyclovir (Valtrex) converts to acyclovir when it passes through the liver. It's just that taking acyclovir from the start isn't absorbed by the body as well, so it has to be taken twice a day instead of once a day. By all means, you should take the drug you feel the most comfortable with. But if you continue to have frequent zingers and other prodromal symptoms, it might be worth considering an experiment with one of the other drugs to see if there's a difference for you. Even though I am not a fan of big pharma (I'd give anything to be able to ditch my $250/mo asthma inhaler!!!), or their marketing/scare tactics, I personally find a lot of value in taking antiviral medication. Obviously, reducing the frequency or duration of outbreaks is a plus. The biggest plus, in my opinion, is that when you reduce the physical symptoms of herpes, it's a helluva lot easier to cope mentally and emotionally because you're not always thinking about it! One of the things that really ate at me in the first 6-8 months after diagnosis.....and I hear some of this in your post, and also in the posts of others.....is the uncertainty. Is this symptom related to herpes or something else? If I don't recognize what herpes symptoms are for me, how can I possibly avoid sex during that time to protect my partner? It's been 17 months since my diagnosis and I am just now really starting to find some acceptance of the fact that I'm just not always going to know when I'm shedding the virus. I might not always recognize a prodromal or outbreak symptom. I am human, I am imperfect, and I am doing the best that I can. I can do what I can to reduce transmission (condoms, antivirals), and I can do my best to recognize symptoms, but it's not a perfect science. And at the end of the day, there's always the asymptomatic shedding to consider which I'll never recognize. There will always always always be a risk of transmission when someone has sex with me. I've somehow arrived at this place recently where I'm just tired of worrying about it, I guess. I'm sure others can relate! :-) There is a loss, of sorts, with a diagnosis like herpes. A loss of control. As I've spent time trying to work through that, I've realized how much I obsess about controlling the outcome in other areas of my life. And how much energy that uses. Now my big concern is, if I wasn't obsessing over the fact that I have herpes and what my body is doing and why would anyone want to be with a walking contagion....... .....how else could I use that time to create an awesome life? I guess all of this rambling is to say that the thoughts and feelings and concerns you're having now, being newly diagnosed, are very normal. It's a lot to process, but you are well on your way. I can see from your posts you have a tremendous positive energy about life in general and a very strong will to move forward. No matter what happens, there is no doubt in my mind that you're going to be okay. :-)

Welcome, @LumaFaithInvader. It was about this time last year when I was seriously contemplating suicide too. (Alas, I don't trust my ex-husband to care for our senior golden retriever, so I stuck around and I'm so glad I did.) I admire your courage for sharing your thoughts with us. Many of us have felt or still feel much of what you described. I'm glad you are here. P.S. There is some good news I can share: No one is normal. :-) Not really. Everyone feels abnormal or alone or shame about something...usually many things!

If it was a PCR swab (and not a culture), then yes. You can call the doctor's office and ask for a nurse or medical assistant to just pull your chart and look for you.

@peanutbutter You are more likely to transmit the virus when you're having an active outbreak, and it's true that in general you're shedding the virus more often in the first 6-12 months after acquiring the virus. It's entirely possible that someone else with no recognizable symtoms is shedding the virus asymptomatically even more often than you are. Like @ash2018 suggested, determining which type you have will give you an idea of how often others with the same type shed on average. But the truth of the matter is, it's a little different for everybody.

@mp, for what it's worth, I think the most likely scenario here is that your boyfriend may have oral HSV1 and transfered it to your genitals with oral sex. When the two of you get around to a blood test, just be sure to ask for the IgG test (the IgM tests are unreliable and don't distinguish type 1 from type 2). If you're still having an active outbreak, the doctor can also swab your sores and do a test that way. That's probably the even better route, because then you can confirm both type and location. Once the sores are healed you may not be able to collect enough sample for the test to tell you anything, but the opportunity may present itself again if you have another outbreak in the future.

I meant to add that I believe--in all likelihood--my giver didn't know he had it either. Putting him in the same boat as me...unaware of a virus that is very sneaky and will not be contained.

Since this is a new infection, the "it just takes some time" advice may be pretty accurate. Everyone's response to the virus varies. Initial infections may have longer-lasting symptoms than recurrences. It varies so much from one person to the next, and even over the years. Were you experiencing the prodrome symptoms before starting Valtrex? I acquired HSV2 18-25 years before ever being diagnosed with it because my symptoms are so mild. I tried Valtrex to reduce transmission since I was seeing someone at the time, and Valtrex gave me constant zingers. So annoying. I'm now on acyclovir with no tingling. It's awesome. Glad you're seeing the NP who manages your vulvodynia. Hopefully she can shed some more light on this for you!

I've learned more from Terrri Warren's book (available on Amazon in the kindle version) and this site than anywhere else. Your mileage may vary with doctors. The nurse practitioner who diagnosed me didn't know a thing about asymptomatic shedding. The gynecologist who did my tubal was more educated, but still very nonchalant about it all. I get my current prescription for acyclovir from a physician's assistant at the family practice I now go to.

You're moving forward, and that's all that matters! Good question about finding closure. My ex-husband tested negative, so I must have acquired it from one of five partners I had before meeting him. They were all 20+ years ago and I'm not in contact, so I have absolutely no idea whom I got it from. How did I find closure? I guess I told myself that it didn't matter. I can't change the fact that I have HSV. In a way, I'm glad I don't know. Without knowing, I can't carry such resentment toward one person. I already had a hard enough time forgiving myself for not knowing I could get herpes if I practiced safe sex. For me, knowing who gave it to me wouldn't change a damn thing. P.S. Happy belated birthday! :-)

Such good news about the negative test results! Kudos to you for facing your fears. We'be all been there.

What type of information are you looking for from a specialist?

Hi, @UK_89. I'm not much help when it comes to disclosing as I'm woefully unpracticed, but please do consider disclosing *before* sex. Future potential partners deserve to have a choice in the matter, just like your ex gave you a choice before the two of you had sex. Do you know what type you have? You mentioned that you've never been officially diagnosed, but you were also able to obtain a prescription for acyclovir. Knowing which type you have will be helpful when having the disclosure talk because the transmission rates vary.

I haven't heard of it being used that way. Without some kind of scientific studies, there's no way to know if it works like an antiviral or how well it works.

That is what some people infer, yes, but there is no research (that I know of) to back that up. Using condoms and antivirals will lower the risk of transmission even further, no matter which type you have.

Terri Warren's book says that genital HSV1 tends to shed, on average, 1-2 days per month. Your body will shed the virus more often during the first year when it's still building up antibodies. From what I've read, there really are no hard numbers for statistical transmission risk for gHSV1, just that the risk of transmisssion for gHSV1 is "small." (The stats you read about a 4% transmission rate per year for female to male with no condoms or antivirals, etc. is referring to HSV2.). Since HSV1 is now responsible for about half of all new genital herpes infections, hopefully someone out there is doing some research to determine stats! By comparison, gHSV2 sheds, on average, about 6 days per month. So intuitively, you could do your own math from there.

@JustTryingtocope You're not alone. Everything you described feeling is very normal and very common! I've also struggled with the permanency of the virus and the shame resulting from the social stigma. With time and education, my hangups over "contagious AND incurable!!" have gotten so small that they're now small speed bumps and not brick walls. It has also really helped me to know that EVERYONE feels shame around something (often, several things). Brene Brown has a great book about shame ("I thought it was just me, but it isn't") that I really enjoyed reading. You'll find your way through this. Just look at everything you've tackled so far!