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@Hikinggirl I forgot to mention you in my reply!

I know that I'm late to the post, but that is great news @Parsley! I'm happy you guys are working on your marriage :)

Thank you for researching and sharing all of that info! I did know that about valtrex, that it is converted to acyclovir in the body, which I thought was interesting. I have been feeling *less* zingers and random intense shooting itches/stings/etc the past few days and have settled into just random areas having some itchiness or irritation. I'm going to try to wait it out a bit and see if I continue with less of the prodrome symptoms while on valtrex. If not, I will definitely ask about switching to acyclovir. When I brought up my thoughts of switching meds to my fiance and the transmission reduction part he stated that I should take whatever medication I need to take and not to worry about him because it isn't a big deal. This was of comfort to me and definitely comes from a place of unconditional love and support from him which is much needed right now. While I want these remaining off feelings to go away, I find them a little easier and a little less anxiety producing than all of the constant prodromal symptoms, as I have dealt with similar feelings before. It took me over a year to be properly diagnosed with my vestibulodynia. It was a horrible year, almost constant irritation, itching, and pain. I tried every thing I could think of for whatever the doctors (whom although well intentioned, had no clue what was going on) would throw at me in addition to natural remedies. I also went on a special diet to try to help things and lost about 20 lbs and weighed only 107lbs (I'm 5'4, I looked like bones). I think that situation has helped my resilience in coping with this thus far. I got back to normal after more than a year of feeling awful with the help of the right nurse practitioner; I keep telling myself I can surely do it again. I totally agree with you when it comes to the antivirals. When the midwife offered to put me on suppressive therapy and said it was totally my choice, I absolutely wanted to try it. It does give me some peace of mind, and I know more will come with time and learning what things feel like for my body with this virus. I have moments now where physically I *almost* feel normal and my mental state is always at its best at those times, compared with the past 5 or so weeks. Its crazy how the diagnosis can eat you alive - little things you NEVER would have questioned before now come into question as to whether they're herpes related or not. I can have what is clearly a shave bump.. or is it something more?! I have a slight itch, is it herpes?! I have a random red area, is it herpes?! I have a pimple on my butt, is it herpes?! My thigh itches, is it herpes?! Before, I would have paid these things no mind! Now I question literally everything. And I'm trying to get better at that but I know it will take time. I LOVE reading about what your thoughts are and where you are mentally in this process! They make sense, you're right in that there's no way to ALWAYS recognize symptoms or know when it could be passed. My fiance has told me that I have an issue with wanting to be in control of things, so it would make sense that I am struggling with a loss of control over my body. Thank you most of all for pointing out the positives you've found in my posts - the positive energy about life and the will to move forward :) I am doing my very best. I still have my moments, but the support of my fiance coupled with this forum and a very inspiring blog I've come across have helped me tremendously to make me feel like this is something I can live with and that I can lead a normal life

Hi there, I wanted to reach out as I saw no one has replied yet. I haven't experienced this, but I am newly diagnosed two and a half weeks ago. During my initial outbreak, after being an symptomatic carrier for who knows how long, I had some pelvic discomfort. I think part of it ended up being my constant tensing of muscles in that areas as my anxiety was through the roof and since that decreased my pain did too. I'm NOT saying that's what's causing your pain as I'm sure there is a very real cause! I'm just sharing my experience. While I don't have your symptoms, I have some random things going on that I too have no idea if they're related or not. You are far from alone! I'm so sorry you're going through this and hope the CT provides some answers

Also, I find myself thinking the same thing and envying others with their "care free" lives. But now I also find myself wondering "which one of them has this virus?" all the time. Statistically speaking, we probably encounter multiple people in any given day that have this virus, whether they are aware of it or not! And some I encounter, I KNOW have it because I've seen them with cold sores, so they have herpes - just in a different part of the body than ours

Hi peanutbutter! I am so sorry that you are going through this. Its not something that I would wish on anyone. I was diagnosed a little over two weeks ago, although I dealt with the mental anguish of thinking I might have herpes for two and a half weeks prior to that. If you're interested, my only post (warning: it is long!) describes exactly what I went through. Any who, the anxiety absolutely ate me alive the first two and a half weeks and I think I lost like 6 lbs because of a decreased appetite. I wasn't functioning well in my daily life. By the end of that time period, my attitude had improved because I took on the approach of "it is what it is and nothing I can do will change it". I had that approach UNTIL I received the call that my swab was HSV1 positive. And then I went into a pretty deep depression for a number of days. I cried all the time, still didn't eat much. I felt somewhat better after meeting with the midwife who diagnosed me for a Q&A session but still very down at times. While I'm still learning to cope with this and all of the things I now obsess over with my body, my mental state is improving each day. And I have confidence that once my sensations down below return to normal, that my mental state will improve even further. The only person I have told (aside from this group and another support group for my other health issue) is my fiance. I told him of my fear one night prior to diagnosis and broke down ugly cry sobbing a little over a week after this all started for me. The way he reacted and continues to react is something that I think has been invaluable to my healing process - unconditional love, acceptance, and support. I think that choosing someone in your life to confide in, even if only one person, could be of immense help to you. This forum is fantastic, no doubt! But having someone you knew "before" love and accept you regardless of this diagnosis, is a very soothing thing

Thank you so much! My post was long, so thank you for reading! True love does indeed prevail :) I am so happy to have him and he has been my biggest encourager through this. He is constantly trying to frame this in a positive light for me and doesn't understand why it upsets me so much. Which is easier for him as he hasn't experienced the physical aspect of it, but I am still thankful he thinks this way. Once I get back to feeling normal physically, and I'm confident I will at some point, I think that will make me feel even better mentally as well

You're very welcome! I did not get the western blot test. For me, I had an outbreak and the open area was swabbed and was positive for HSV1. I then had follow up blood work which showed my HSV1 IgG to be 9.48 (so a definite and established positive) and my HSV2 IgG to be < 0.91 which is negative. My results were cut and dry, which I am thankful for. But I have read others posts about getting the western blot done to verify or confirm their diagnosis

I can totally relate to that. My anxiety was so high until I got a diagnosis that I couldn't function correctly for a couple of weeks. And then after diagnosis everyone would repeatedly ask what was wrong because I was so withdrawn and sad. I've since started to come out of that but struggle sometimes. I was only diagnosed a little over two weeks ago. My suggestion would be to get the western blot test done. I wouldn't trust only the IgM being positive if it were me. This will give you the peace of mind and you will know your status, no matter what that status is. The first step to healing is knowing!

You're welcome! A lot of doctors are not well educated on the viruses which is very unfortunate. Even my midwife who seems pretty well educated on it, performed the IgM on me, prior to me reading about that being unreliable. You could wait and retest in a few weeks or months and see if your IgG levels change, or you could seek out a western blot test. This test I've read is what those who get unclear results (such as a low positive IgG reading) do to verify if they actually have the virus or not. The western heights clinic in Washington state (I believe that's the name) is a good resource for this. The test is only performed in one lab nationwide so it is something a lot of doctors don't know about or use unless specifically asked. Google the test and how to get it done if this is something you're interested in for the purpose of getting answers

The IgM test is said to be unreliable. I would wait and retest your IgG levels in 4 months from potential exposure to see if you've developed antibodies to the virus(es). The blood tests unfortunately don't tell you where you have it (oral vs genitals), you would need an outbreak to know that for sure. I'm sorry you haven't gotten replies until now, sometimes people I think don't contribute if they don't think they personally can be of help and sometimes people just aren't on the site. Don't get discouraged! It's a great site.

I would definitely give valtrex a try, like you I've read about people having different experiences on the different antivirals. And if that doesn't work, there is a third called famvir (I think that's the brand name) that could be tried as well! And thank you!

I don't think anyone thinks you're stupid. My post was viewed many times and I got one comment. Sometimes people I guess don't think they have anything valuable to contribute so they don't comment. I highly doubt the bumps on his back are anything related to herpes and the disappearing rash on his thighs probably isn't either. If it'll give him peace of mind a test is probably a good idea. The itching could be related to the powder you use, if he is getting a lot of it on him. It's really hard to say. But testing is always what will provide the best peace of mind!

Have you tried taking a good probiotic targeted to the vagina? I take femdophilus to help keep my bacteria balance in check down below to help prevent any infections. Just a thought to help with the yeast infections!

I don't think that this has anything to do with you being more contagious, except when the lesions are open those are contagious. The initial outbreak can be pretty bad and is usually the worst. Did you get the diagnosis confirmed by a swab? Which type did it show? The virus strain can have an impact on how much you shed the virus, but other than that having a bad outbreak doesn't have anything to do with how contagious will be

@Answersneededplz It can feel very lonely for sure. This forum has been great even though I just stumbled upon it. I haven't told anyone I personally know except my fiance. I had a support group for vulvodynia I used to post in all of the time with those struggles and they were the first group I reached out to for support. A few ladies on there actually replied about their own experiences with this virus which was nice because I could talk to people who had experienced it. My fiance has been great through every thing but he sees it as no big deal at all. Which I'm thankful for, but he also doesn't understand why it has taken a toll on me mentally. Once you get through this outbreak I think that your feelings about not being ready to date again will pass! I've seen so many success stories where someone who is H+ has disclosed and the H- person has seen it as a total nonissue. A lot of the stories talk about how the person they were dating then had so much more trust and respect for them for being upfront and disclosing something that certainly isn't the easiest thing to tell someone.

@Answersneededplz I'm still very new to this so I get the thoughts of wondering what previous "outbreaks" if I've had them and not known look like. For me I'm pretty confident I probably haven't as this one, thought to be the initial one even though I've had the virus for some unknown amount of time, included a lymph node in my groin swelling which I've never experienced before and is more common with initial outbreaks. Anywho, have you been stressed or did something happen you can think of that preceded the outbreak? There's no way to know when you'll get one short of if you get prodromal feelings. From what I've read some have one then never have another. Others have one then get one many years later, like you. Some have them regularly, some have them when brought on by triggers. It's all very individualized. I don't think that having a bad outbreak 15 years later means your body is reacting worse. It just means you haven't had an outbreak in 15 years and for some reason one happened. I have a long post about the weird ongoing symptoms I've been experiencing since my sores healed that you could read, if only to let you know that you're not alone and others also experience strange things after an outbreak. I've had random vulvar burning and itching since a few days after the areas appeared and my outbreak was in my perineal area close to my rectal area and totally healed over at this point. It's hard to say. Maybe a visit to the doctor to make sure nothing else is going on would do you some good, especially mentally. Because this does take its toll and make us obsess over every little thing

Hi there! I have only been diagnosed for a couple of weeks but my first outbreak occurred after finishing my first pack of a new birth control pill and starting my period. I had been switched to a pill with different hormone levels as I had developed a large ovarian cyst on my previous pill. I often wonder if that had something to do with why the outbreak occurred. I have positive IgG levels so I have had the virus for a period of time and never had an issue before. After my second pack I was taking a large dose of valtrex to treat the previous outbreak, thus I didn't get an outbreak on my period then, but I wonder what will happen when I finish this pack. I am also now on suppressive anitviral therapy so I wonder if that would prevent it from happening anyways. So many thoughts! If I do notice them to be hormone related I will ask about switching pills. I'd much rather have an ovarian cyst then an outbreak every month! Maybe they can start you on suppressive anitvirals instead of episodic (taking them only when you have an outbreak) and see if that helps? If not, then maybe they could do that AND start you on birth control to see if regulating your hormones helps. Just some thoughts and letting you know you're not alone in trying to figure this out! Also, your boyfriend could still have HSV1 even if he's never visibly had a cold sore. Having him tested could be helpful to figure out a *possible* source or just to know if he carries the virus as well. My fiance got tested yesterday so I am anxiously awaiting those results!

Hi there, I'm relatively new to this all as I was diagnosed less than a month ago. But I have spent the past month (even before diagnosis) reading any and every thing I can get my hands on! That coupled with having a medical background (I'm an RN) have helped me to much better understand these viruses then before. I knew a small amount about herpes but nothing near like what I do after putting some effort into reading up on them. Its amazing that they don't better educate people, especially health care providers, on them. That being said, I'm certainly no expert and everyone's body reacts differently to these viruses. I had my first outbreak of genital HSV1 last month. It wasn't fun, I had about 4 open areas, but not as horrible as I've read they can be. I've read that while it is the "norm" for subsequent outbreaks to not be as bad, I have also read that this is different for every one. As are symptoms for outbreaks, so many people don't get the classic blisters which is why a lot of cases go undiagnosed. Some people get fissures or symptoms mistaken for a fungal infection or "jock itch" or a rash. The constant sensation can be what they refer to as "prodromal" symptoms. This can mean an impending outbreak or it can mean that the virus is actively shedding. A lot of people who take meds will start to take their antivirals at the first twinge/itch/tingle/whatever their prodrome feels like, to help prevent an outbreak. You could be positive for HSV2, but you won't know until you get another blood test done 4 months post exposure as you've written. I have read that western blot is the *most* accurate test, but the IgG tests are *usually* very accurate. The only iffy part about them that I have come across is that some people with very low positive readings (< around 5, depending on the source you read), can be getting false positive readings. These people are usually the ones that seek out the western blot test. I hope this helps!

I absolutely LOVE Ella! Her blog posts and her TED talk have helped me to be more accepting of my recent diagnosis

@HikingGirl Thank you for your response! I know this is a long post and a lot to read. I have read some of your other posts and responses on the forum and was actually really hoping that you would chime in! :) While it is an initial experiencing of symptoms, the virus isn't new to my body as my IgG is positive (9.48). So I'm unsure how long I've been carrying it around with me and not knowing. I will be curious to see if my fiance carries it. It won't tell us who had it first, at that point it would be the "which came first the chicken or the egg" scenario, but it is important to know his status. And luckily he seems to understand that it IS possible to carry it for years without symptoms, whether is be oral or genital. Thinking back, I really think that I did NOT have the prodrome symptoms until after beginning the valtrex. I was on the really high dose at first (1000mg twice a day for 10 days). The only "prodrome" I can think of preceding the outbreak I had was an itch that went away when I scratched it. After that I just remember the open areas hurting and being sore, but not particularly itchy or zingy or tingly or any of that. I have to correct my post, I'm on 500mg of valacyclovir***, not acyclovir*** So, I am on valtrex. Which I've read is the only one FDA approved for reducing transmission rates. I've read that acyclovir similarly decreases shedding, but not as much as valtrex. I'm waiting to see if my fiance carries the virus. If he does, I may ask to try switching to acyclovir to see if that helps these feelings go away. Because if he carries it I will just be more worried about having outbreaks as opposed to transmitting it to him. That being said, I had noticeably less of the prodrome feelings yesterday and today I haven't had a ton so far, it is early though. The feelings make me constantly feel as if I'm contagious or if an outbreak is going to occur. That coupled with the vulvar irritation I have off and on, and not knowing if that is herpes related or related to other things, scare me. If I could just get back to a time of normalcy where I physically feel normal, that will do wonderful things for my mental health. I think I can cope with having an outbreak that causes discomfort here or there, as long as I know it is very temporary and that I WILL feel normal again. My vulvodynia NP is so awesome and I am truly excited to see her, as odd as that sounds! The midwife has been great but has offered no thoughts up regarding the vulvar symptoms. I am in the process of planning our wedding - we are just finalizing our venue and now have a little less than a year to get everything planned. So this will be a highly stressful, albeit in a good way, year! I want to minimize my chances of outbreaks for this year and especially during our wedding and honeymoon. Prior to my diagnosis, we had chosen 6/22 as our wedding date. I only realized the other day that 6/22 is the day I received my diagnosis. Ironic, huh? That 6/22/17 will be one of the worst days of my life, and then 6/22/18 will be one of the best. Thanks again for reading and replying to me!

Hi everyone, I have somewhat of a long story to tell, so please bear with me! June 4th I had just started my period and felt an itch towards my rectum, gave it a scratch and thought nothing of it. The next day I was sore but thought "I probably just cut myself, no big deal". That was until I took a look at what was going on and saw a small open area clustered next to three blisters on the left side of my perirectal area. I tried to convince myself that it was from scratching as I had long nails at the time. I also noticed a swollen lymph node in my left groin. The first thing that pops up when you google swollen groin lymph node is: herpes. I thought that there was no way, I've been in a committed relationship for two years and neither of us has had even so much as a cold sore! ANd then I started to see that anyone can have the virus and have it lay dormant for a period of time or forever, that's how so many people don't know they have it. Anyway, I spent the next two weeks with EXTREMELY high anxiety. Like I couldn't function normally it was that bad. I saw one doctor who mentioned nothing about herpes, giving me an antibiotic cream to make sure the "cuts" didn't get infected. I tried to take comfort in this because she didn't even mention it, so it couldn't be that, right? Then a couple of days later after sobbing and telling my fiance what my worst fear was, I took off of work and made an appt with a gyn doctor who took one look and said "this is fungal in nature, buy over the counter clotrimazole and it'll be gone in a few days". I tried to take solace in this too, this was the second medical professional to NOT mention herpes which is good..? But something in me knew that this was being brushed off. Three days after that, June 16th, I saw a THIRD medical professional - a midwife - whom I told my story to and she asked about a history of herpes and then said she wanted to swab the open area for herpes although her suspicion wasn't high. I was anxiously awaiting the results, knowing that even if it was negative that it could be a false negative as the only remaining small open area was almost healed when it was swabbed. I got the call 6/22 that it was negative for HSV2 and positive for HSV1. She then started me on antivirals, which I'm sure were probably moot at that point as I started them two and a half weeks after symptoms started. I've had my ups and downs coping with the news since then. My fiance is great, he's super supportive. We had a sit down meeting for Q&A with the midwife last Tuesday, 6/27, and decided to do a blood test for me. Again, confirmed HSV1 IgG was positive, HSV2 IgG was negative. My fiance is getting his blood test done tomorrow so that we know if he carries the virus. Now that the background is explained, the reason for my post. Since the first week of the sores being there, I started with on and off burning on one side of my vulva. Then after the lesions healed, I began to get what I've seen described as "prodromal" symptoms. I get random twinges/zings/itches/stings/etc in the area around where the sores were as well as on the other side of that area where I haven't had lesions. These happen randomly throughout the day, every day. I elected to take suppressive therapy with 500mg of acyclovir once a day so I am on that. I constantly feel the need to feel and check that no more lesions have popped up because of these feelings. I also still have some irritation and itching on and off to my vulva and clitoris (mainly only the right side, makes me think nerve distribution?), where there were no lesions of any kind. When I look nothing looks out of the ordinary. And when the midwife had looked when I was experiencing the symptoms (back when she swabbed me) she saw nothing visible of concern. To make things complicated, I have a history of a form of vulvodynia, vestibulodynia (aka vulvar vestibulitis), for which my main symptoms were irritation and itching. I've had this under control for several years and went off of meds (cymbalta for nerve pain and estrogen cream) within the last year and have been pain free. The midwife said to up my pill to twice a day if I experience symptoms. My question.. how do I know if I have symptoms if I ALWAYS have the prodromal feelings?! When I asked when those feelings would stop, she said that they would and that "it'll take time". My thoughts are that they are one of the following: 1. Left over nerve irritation as I didn't take any antivirals until two and a half weeks after symptoms started (I know some are skeptical of this as this isn't "typical" and there isn't much research on it) 2. The virus is constantly active and trying to form an outbreak (note that I DID have these symptoms even when I was initially on 1000mg of valtrex twice a day for ten days) 3. The virus is shedding constantly at this point Any thoughts? Similar experiences? Also of mention, when I got my first outbreak, I had just finished my first pack of a new birth control they wanted to switch me to with different hormone concentrations related to developing a large ovarian cyst on my previous pill. I go to see the NP I see for my vulvodynia on 8/9 and hope she can shed light on some of this if these symptoms continue. Thank you for reading!