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ash2018

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Everything posted by ash2018

  1. Hi everyone! I joined last year after being diagnosed with gHSV1. I was diagnosed last June and was absolutely devastated. At that point I was freshly engaged and wondered how my fiance could want to be with me after that, I felt gross, I felt dirty, and I felt alone. I had pretty severe depression and anxiety which I had never experienced before and did end up going to a few therapy sessions through a confidential program that my employer offers through a third party company. It took quite a while for me to accept and be okay with things but I wanted to pop back on here and let you know that everything will be okay! This truly does not impact anything in your life unless you let it. I think one of the most validating things for me and the thing that has helped me with acceptance and just living my life is the acceptance that I have received from my now husband (we got married in June!), the friend I met through these forums who ended up being H-, and the two friends that I have confided in that have treated me absolutely no differently than they did before. Acceptance is a great feeling. And so is having those who accept you realize it isn't a big deal. While no one wants to be in the situation all of us are in, it really is not different than those who get 'cold sores'. We just have the chance of getting them in a totally different area on the body. I did elect to take suppressive therapy which of course is totally individual decision and there's nothing wrong with either choice. At this point though I am happily married and currently waiting on a decision from the graduate school I just applied to :) I hope that my post can inspire some of those struggling to accept their diagnosis. I have been there. And while it can be difficult and nerve wracking to disclose, even to friends, the acceptance you can gain from doing so can be such an important part of healing and accepting yourself <3
  2. Hi everyone, I hope that this post finds you doing well or on the way to healing! I'm posting to start a discussion of what symptoms every one has had that are related to HSV. I'm curious because people experience it so differently. So if you could please post about your symptoms/outbreaks I would appreciate it! Thanks! Personally I've had one outbreak with 4 blisters and a swollen lymph node in my groin, the open areas took 3-4 weeks to totally heal. I've been left with weird residual feelings that come up at times. I had some irritated/burning feelings to one side of my vulva (opposite side and far away from where the outbreak was) but with my history of vulvodynia figured it could be nerve pain so I saw my specialist and went back on cymbalta which mostly took that feeling away. What's plaguing me now is one sided clitoral discomfort, nothing visibly wrong in the area. Sometimes I'm just aware that it's hypersensitive and other times it aches. I have no idea if this is HSV related but needless to say it is frustrating!
  3. I don't think they always do, the reason being that my first outbreak was in the beginning of June which my swab came back positive for HSV1. My blood IgG for HSV1 was over 9, I forget the exact number. Meaning it wasn't a new infection, just the first outbreak, but I had a swollen lymph node in my groin. That's what really put in my mind that it could be HSV. I'm engaged and have been in the relationship for over two years so it was quite a shock. But, those are pretty classic initial outbreak symptoms so its hard to say. These viruses are so complicated
  4. Your IgG was positive which *typically* points to an infection that isn't so new, HOWEVER some people do start to produce antibodies to the virus more quickly than others and since your blood work was 2 weeks after the encounter you describe it is *possible* that this is a brand new infection. You could have also acquired it during a time when you had protected sex as condoms don't protect form HSV 100%. Your partner could very well carry the virus asymptomatically and have no idea that he has it. Most typical STI panels don't include HSV so even if he was tested he may not have know HSV wasn't included and assumed he was tested for everything. But as HikingGirl said, IgM is not a test to pay much attention to as it isn't reliable, which most doctors aren't well educated about when it comes to testing for HSV
  5. It's hard to say whether the bumps are herpes for certain. I know when I had my first outbreak my mind was constantly on it and I was so worked up and anxious ALL the time which led to constantly sweating in that area and my entire crack (no such thing as TMI on here!) was red and raw from the constant moisture. One thought I have is maybe trying a different antiviral. For some reason some people have varying success with different ones. I'm on suppressive therapy and thankfully haven't had another outbreak but had all kinds of weird symptoms for a while and still randomly do have weird feelings like an itch in one spot that was super sensitive from the beginning, but totally separate from the spot I had an outbreak. To make things more difficult to discern, I have a history of vulvodynia for which my symptoms involved irritated/burny/itchy feelings... I had come off of meds for that successfully after a few years but went back on and they've helped tremendously with the strange sensations so who really knows! This virus is quite frustrating! It's hard not to let it run your life but I'm determined not to
  6. I can't say whether you have it of course, but I would recommend retesting at 16 weeks with an IgG blood test. If for nothing else then your peace of mind!
  7. I totally understand the wave of emotions. I had my first outbreak at the beginning of June however my IgG was also a definite positive so who knows how long I've been carrying the virus. I've been with my fiance for over two years now so it was quite the shock to say the least. I highly recommend looking up Ella, she's awesome. In the first month or two I watched her videos pretty much daily to lift my spirits
  8. I think that, like for most things HSV related, the answer isn't clear cut. It is probably something that everyone's body reacts to differently. I think that it has the *potential* to because its something that causes an immune response in your body. This can liken it to being sick, in a way, which can be a trigger for some people. I'm getting my flu shot (required by my job) soon, it'll be my first since being diagnosed and I'm nervous about it but its one of those things I have to face and just see how my body reacts
  9. I just wanted to jump in and say that IgG tests miss up to 30% up existing HSV1 infections, so while you *probably* recently contracted it, there's a chance that you're one of the people int hat 30%. Ella Dawson, whom is internet famous for being open about having genital HSV1, is in that 30%. I heard her on a podcast speaking about how one doctor tried to insist she didn't have it because her level was not conclusive and she was like no bro, I really do.. You certainly can't deny a positive culture which she had when diagnosed. Also in reply to your most recent post, everyone's body reacts differently so you never know until you try! What triggers OBs for some, doesn't for others. And since genital HSV1 *tends* to recur less often, these things may not trigger you at all. Especially being on Valtrex
  10. Blood tests are good but remember that they need up to 16 weeks to become positive as your body builds antibodies to the virus as that is what the IgG detects - antibodies to the virus, not the virus itself
  11. Whats really important is to learn *your* body and learn what symptoms look like for you. You can't go through life assuming every slight itch/irritation/shave bump is herpes. As I've adjusted to the diagnosis I have come to start learning my body and realize what is/isn't HSV related for me. If I regarded every one of the above occurrences as a symptom I would be symptomatic the vast majority of the time. I've had one outbreak and it was four blisters in one cluster, I have GHSV1. I have learned to regard a slight itch/irritation that goes away quickly as just that. I have also learned that what a shave bump looked like for me before, is what a shave bump looks like for me now. This has helped to reduce my stress and anxiety over things. It does help that I'm engaged and while he doesn't want it if he doesn't have it, he doesn't see it as a huge deal. We also don't know if he already has it because we haven't gotten him tested and he doesn't care either way. The point is not to freak out over every slight thing that is off, but to take the time to learn *your* body. This will help you prevent transmission with future partners without living on edge 24/7
  12. Your symptoms are so vague it's really hard to say unfortunately. I would see if you can convince your PCP to do a PCR (these are more sensitive than cultures) swab of the red areas and see if anything results. It could really just be a rash or random red areas that coincidentally occurred at the same time as you not feeling well. I know it's easier said than done, but try not to worry until you know for sure. Focus on yourself, be kind to yourself, pamper yourself (in whatever way you would normally treat yourself!). Even if it is HSV, as you've probably seen from many posts on this site, it is NOT the end of the world and it doesn't inhibit a normal life anymore than any other health condition does. I'm only 3 months in and it still kind of gets me down sometimes but I've made leaps and bounds from where I was in the first few weeks
  13. Hi there, symptoms are not always blisters. Besidea those who are asymptomatic, many living with herpes that have no idea get more mild symptoms mistaken for something else. For women I've heard it can be mistaken for a yeast infection. It can also be mistaken for ingrown hairs. Some people have itching or irritation only. That's one thing that makes these viruses so tricky! They can indeed swab your red areas even in the absence of fluid. They've done studies on asymptomatic shedding by doing exactly that - swabbing asymptomatic people to try to detect the virus in the absence of symptoms. Just be careful, many PCPs and even GYNs for women I'm finding don't know a ton about HSV. It took me three medically providers for someone to even suggest swabbing my first outbreak to test for HSV
  14. I also wanted to mention and totally forgot last night that for some reason with the IgG blood test, up to 30% of HSV1 infections *don't show up*. So, to make things more complicated, "negative" IgG doesn't always mean negative for HSV1.
  15. I second the above - thank you so much for educating yourself! There is so much stigma around HSV and I think it's great you're doing your research before turning down a potentially great partner :)
  16. Hi there! I also have HSV1 genitally so I know a bit about this topic. 1. Unfortunately there is no way to know for sure she doesn't have oral HSV1 unless she has an outbreak. But consider this - the world health organization says two thirds of the world's population has HSV1. Two-thirds!! A large portion of those with oral HSV1 never have cold sores and thus don't know. Chances are high you've had oral sex from someone with it whether they knew they had it or not. There's a huge lack of education around HSV with so many people not knowing it's herpes and/or not knowing it can transmit in the absence of symptoms 2. If she does not have it orally there is no risk. But again, see above 3. Oral HSV can be transmitted via kissing. But again - 2/3 of the world's population carries it so chances are that you have kissed many people with it. And since a lot are asymptomatic you could carry it already and not know If you test positive via blood test that would mean you carry the virus - impossible to know where with out symptoms. Most likely oral but again unless you have symptoms that's not 100%. If you carry it orally, while not 100% fool proof, you would have a large amount of protection from contracting it genitally. Also, something to think about is if you give her oral sex, you are no more at risk than kissing someone with a history of cold sores. You are actually at less risk because genital HSV1 sheds much less than oral HSV1. I'm glad you're educating yourself and getting tested! Feel free to ask if you have anymore questions!
  17. We do have a lot in common! I think that here the cost honestly depends on your insurance. I know that acyclovir is cheaper as it was the first antiviral made. Valtrex is converted into acyclovir in your body, but more of it is absorbed and thus allows you to take the dosing less frequently so it can be preferred by many. With my insurance we have to use a mail order pharmacy for any prescriptions that aren't "one time meds", meaning if its something I'll be taking every day. I just looked and the 3 month supply I got back in August was $15. so not bad at all. I think I paid $7 or something similar when I picked up a month supply at the local pharmacy prior to getting the mail order script. I wish your doctor would give you a script to take on your holiday with you, just in case! I know that here even if you do episodic treatment most docs will give you a script for 5 days of valtrex to keep on hand so that you can self initiate the treatment as soon as you feel symptoms. I totally get what you mean about not being able to tell when you have symptoms. I still probably don't but I *think* I may be figuring my body out. I've had some shave bumps and pimples on my butt since my outbreak and I've classified them as such based on prior experiences. My outbreak was clearly recognizable even though it wasn't very big, just 4 blisters, but it was painful and hurt to walk. I thought I had cut myself with my nails scratching. So I'm trying to live as normally and only pay attention to the odd feelings and if anything that was never "normal" for me before pops up. As for the feelings, I still get random prickly feelings sometimes but have no idea what they are/mean. I thought they could be from the valtrex. I think I have experience *real* prodrome for me though. I had two episodes where I had strong itching and irritation at the site where my outbreak was and no where else. I upped my valtrex for a few days and was okay. So frustrating to not know for sure how your body will react nor be able to tell for sure what symptoms are! I've been just trying to learn my body and figure out what its telling me. I am happily living life, but it has taken me time to get here and I still have my days where I get kind of down! But having a supportive partner and having this forum to come to have made a world of difference. Oh, and Ella Dawson is AMAZING! I loved her TED talk and many of her articles she has written. In the first month or two I watched her TED talk many times to help myself feel more normal.
  18. @Daringgreatly I'm sorry that you are hurting. I can't say I've been in your shoes, as I was diagnosed with HSV1 while engaged to my fiance which has had its own challenges. But I can imagine the hurt that this has caused you. I think that while it is difficult, it may be important to try to view things from his point of view. I know that I can say that if I was dating someone and they told me that they had herpes, I would have to think long and hard about the risk and where I see the relationship going. Not because I think its gross or disgusting at all, just because this is something thats for life. He has a great woman that he likes a lot, but now that he knows you have HSV1 he wants to educate his self about the virus and the associated risk and decide if its a deal breaker. One of the moderators used to say in posts all the time that HSV is just *one* deal breaker of many. If it isn't HSV its someone having kids, someone not wanting kids, someone not having their finances together, smoking, drinking, the person doing something that annoys you too much to put up with, etc that are deal breakers. So while I totally understand the hurt, try not to take it as a jab at you or your worth. You *are* worthy! He just needs time to educate his self. That being said though, if he takes weeks and weeks, I'm not sure that that is fair to you but I don't think there's any right amount of time
  19. Hi there @Ashh and welcome! You've stumbled onto an amazing community that has been invaluable to me since my diagnosis in June. I have GHSV1 as well and was diagnosed late June. I too have been in a two year relationship however my fiance has never had a cold sore nor have I. My IgG was positive as well as my culture so this is either something I've had since before him and I started dating or he unknowingly carries it and has just never had a cold sore. I got tested prior to our relationship but unfortunately didn't know at the time that HSV is not routinely tested for unless you ask for it, so there's no way for me to know for sure. I'm sorry for all of the health issues you've been through in the past few years. The good news is that this one is totally manageable and *shouldn't* hopefully cause you too many issues. I struggled being terribly depressed over this initially and would cry all of the time, I wasn't myself at all I was very withdrawn from everyone, and I sought out the help of a therapist. I think one thing that has really helped me is my fiance's attitude towards it which is basically "so what?". If he would have freaked out or made me feel disgusting or bought into the stigma like most of society, I don't know that I could have coped with those reactions. For GHSV1, it does tend to shed less and also cause less outbreaks than HSV2. That being said, everyone's body reacts differently to the virus. Some get one and never have another, some get them very infrequently, and others have them more regularly. Your GHSV1 may end up being very mild. In this initial phase, your body is still building up antibodies to fight the virus and thus it doesn't have it "in check" as well as it will once your immune response is at its fullest. Outbreaks are more common in the first year and tend to decrease over time. As far as your boyfriend contracting it, while *possible*, the chances are pretty rare. If he's has HSV1 since he was a kid then his body would have the virus pretty well under control at this point and his antibodies should provide him a large amount of protection from contracting it genitally. I'm guessing by the term "holiday" that you like in the UK? I ask because I know that here, in the US, we have the option to go on suppressive treatment which involves taking a small dose of an antiviral daily. This serves the purpose of decreasing transmission (which I don't think you have to worry about) and also helps prevent outbreaks. I had read somewhere that in the UK they typically won't prescribe the suppressive treatment unless you have many outbreaks and even then only short term (a year or so) but can't remember where I read that. If you do get more outbreaks, you could ask for suppressive treatment and see what the doctor says. Since diagnosis I've been taking suppressive valtrex and haven't had any outbreaks but I also haven't felt back to normal totally in my area either, I get those weird prickly feelings too much for my liking as I never know what to expect with them. Hopefully your doctor will prescribe the valtrex when you call today! There are also things you can use to help dry the sore up. I think tea tree oil works, salt baths, and then a moderator on here used to recommend ammonium alum. I saw this mentioned multiple times in old posts. She stated it burned at first but helped dry the sores up very quickly. That could help speed healing for your holiday next week. I really hope that you can get past this outbreak before your holiday so that you can fully enjoy it! Including intimate time with your boyfriend :) if you have any questions that I can help with don't hesitate to reach out to me!
  20. @Hikinggirl I am curious about the boxer short region. I've read this multiple times but I swear I read somewhere where Terri Warren stated that the skin on the buttocks/thighs is too "thick" to shed virus from. I wish I could remember where I saw that. Have you ever read that?
  21. Have you had an HSV outbreak on your lips before? The only way to know for sure if the bumps are HSV is to have them swabbed. They could be pimples or something completely unrelated. When I tried acyclovir, it made my mouth super sensitive and I got a few canker sores inside my mouth in that two week period and the inside of my mouth was very sensitive overall. Which some of the research I did on it confirmed that can be a side effect. I also felt crappy on it. I switched back to valtrex which I seem to tolerate better. Even if you get HSV outbreaks while on meds, it doesn't necessarily mean you need to switch. Sometimes, especially when the virus is new to your body, you can have breakthrough outbreaks while on meds. Usually the dose gets up at those times. Some people go on meds and it completely eliminates outbreaks while for others it just decreases their frequency or severity, its all very individual. There are two other options for meds though, valtrex and famvir, if you ever do want to try switching meds
  22. @new2this2017 having genital HSV1 unfortunately doesn't provide protection from HSV2. You can contractboth genitally
  23. It could be another outbreak, but that doesn't mean you had the outbreak while you were having sex. Sometimes sex can be a trigger for outbreaks, especially while the virus is still new to your body. If you want to text him you certainly can, if you feel like he is someone you want to keep in the loop on how your body is responding to the virus I would say go for it. Remember that he is an adult and whatever happens, it is *his* choice to continue a relationship with you. You've done your part by informing him and talking to him about the risk
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