Dear Betsy,
I'm a female and I've been dating the same guy for over a year. I am very cautious about sex and std's. I waited nearly 4 months to sleep with him and we both got tested (little did I know that when you say test me for everthing they do not include herpes! that angers me a lot!!) He has had a couple of cold sores throughout the year but had no signs of a sore on his mouth for months.

I contracted HSV1 about a month ago now (I know it is true from a culture and from a blood test. I had the blood taken afterwards when I was paranoid I caught something else from him too. Thank goodness only HSV 1 turned up positive). I can't sleep, I cry everyday, I'm scared, confused, ashamed, etc. It was the worst pain I've ever felt. I could barely walk or sit down. It lasted a little over two weeks. I hope it never returns.

We had been having oral sex a lot. It was a weekend and after having genital sex I felt as if there were small cuts around the opening of my vagina. I thought I had a cut from too much sex or something. I didn't think much of it. We continued having genital sex on Saturday, Sunday, Monday. By Monday I felt as if I couldn't walk properly, like the opening of my vagina was so sore and swollen. Still I thought it was from too much sex. Monday night, I woke up in the middle of the night from the burning. I then thought it was a yeast infection but it was a trillion times stronger than any yeast infection I had ever had. Tuesday I went to his house crying and asked to see his penis. He said I was overreacting but I cried to him telling him something is not right. I asked to see his penis and he had picked at it because there were little bumps on him. I went to the doctor the very next morning and they did a culture from the 5-6 sores they saw! YUCK. They were milder from the pictures online...I didn't even really think it was too much more than a cut but it hurt so bad when I urininated. They took look at me and put me on Valtrex and said it looked like herpes. I made him go to the doctor and his doctor looked at him and said it wasn't herpes but they'd test his blood anyways. The bumps on his penis had gone away by the morning. But then two days later, he had little scabs on his penis and so we think what happened was that he gave it to me orally and then I gave it back to him genitally. I've been reading a ton and I just wanted to inform people that it can happen. I know the odds are that someone that already has the antibodies won't get it as easily but it can happen! His results came back that he has Hsv1 only. I guess if I had known what it was we could've avoided him getting it too.

Four questions for you:

1. From your postings you say that the outbreaks for HSV 1 genitally are few and far between. But do you have any statitistics? Like how many can I expect a year? Is that with or without medication? I know of one other person that has HSV 1 genitally and she had one initial outbreak but hasn't had another in 4 years. Is this normal?

2. My doctor put me on suppressive therapy for 6 months to a year taking 1 gram of the valtrex daily for the first 6 months. What would you recommend for the genital HSV 1?

3. Is there anyway of knowing if he did indeed contract the HSV 1 in the genital area apart from his previous oral hsv 1 from his blood? Since his doctor said it couldnt' be herpes in the genital area and then days later he had scabs, I think he has it. but from what I'm reading, there is no way to tell unless they do a culture of the sore. Is that correct?

4. I went to a doctor for a second opinion and they said that my hsv 1 is actually hsv 2 since it's in the genital area. Is this correct? The number doesn't change because of the location does it? I ask because a friend of mine was so concerned she may have caught somethign she got tested. She's never had a cold sore or a genital outbreak but came back positive for hsv1. Could it be in either area? Her doctor said it was oral but is there any way to know for sure where it is without a sore? SO CONFUSING!!!

Thank you! I appreciate your feedback and help!!!! This sucks!

was your lesion culture just + for hsv or was it specifically hsv1+?

betsy

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ASHA Moderator

The sores and my blood (2.5 weeks later) both came back positive for HSV1. Everything else was negative (HIV, Hepatitus, HSV2, etc.)

1. From your postings you say that the outbreaks for HSV 1 genitally are few and far between. But do you have any statitistics? Like how many can I expect a year? Is that with or without medication? I know of one other person that has HSV 1 genitally and she had one initial outbreak but hasn't had another in 4 years. Is this normal?

About 1/2 of folks never have another ob. Of those who do , the average is 1 additional ob the first year and 1 ob ever other year. Only a small percentage of folks get more.


2. My doctor put me on suppressive therapy for 6 months to a year taking 1 gram of the valtrex daily for the first 6 months. What would you recommend for the genital HSV 1?

Your current partner is hsv1+ too so your hsv1 genital infection isn't of consequence in this relationship ( hard to tell if he had hsv1 genitally or not since who knows what his genital symptoms were - should they reoccur he needs to go see his doctor pronto about them ). I really don't recommend suppressive therapy for hsv1 genitally unless you are having frequent ob's or if you need the peace of mind if your partner is negative. You just don't get a lot of bang for your buck since hsv1 genitally doesn't shed much and doesn't reoccur very often. it's totally up to you and your doctor though. there are no benefits to treating it for the first 6 months or anything of that sort.

3. Is there anyway of knowing if he did indeed contract the HSV 1 in the genital area apart from his previous oral hsv 1 from his blood? Since his doctor said it couldnt' be herpes in the genital area and then days later he had scabs, I think he has it. but from what I'm reading, there is no way to tell unless they do a culture of the sore. Is that correct?

As i said - who knows what he had. He'll need follow up if they ever reoccur.



4. I went to a doctor for a second opinion and they said that my hsv 1 is actually hsv 2 since it's in the genital area. Is this correct? The number doesn't change because of the location does it? I ask because a friend of mine was so concerned she may have caught somethign she got tested. She's never had a cold sore or a genital outbreak but came back positive for hsv1. Could it be in either area? Her doctor said it was oral but is there any way to know for sure where it is without a sore? SO CONFUSING!!!

if you had a culture that was hsv1+ ( and not just + for hsv and then your blood test was + for hsv1 ) then you have hsv1 genitally. it's not hsv2 just because it's below the belt. Sounds like the 2nd opinion you got wasn't a good one unfortunately.

betsy

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ASHA Moderator

Betsy,
Thank you very much for your responses. It's been a few months now and it's all I think about and I still cry everyday even though the symptoms are gone. I think I could write a paper on all of the information I have.....many of which is contradictory. I feel confident that the information I'm getting from you is accurate though and I thank you for your dedication and feedback. It's quite scary how many doctors say different things! I really appreciate your site. It is nice to know that I'm not alone. I still walk around wondering who might have it. Who's experienced this pain....I can't imagine others having gone through this. Here are a couple more questions I've come up with:

1. My mom and good friend just went to get tested after hearing my story. Both came up HSV 1 positive and both doctors said it was no big deal and that it's oral, although neither has ever had any symptoms orally -cold sores, etc. or anywhere else. So my question is if someone I date in the future gets tested and it comes back hsv 1 positive, is there anyway to tell the location of the virus? If I go to get tested with them, is there anyway that they can tell if my hsv 1 is genitally? (I know I obviously have it genitally but just curious if my mom or friend can REALLY know that they hadn't contracted it in another area.) Also, I'm curious if my outbreak was the true initial outbreak. If I get the tests back from the gyno in the mail, would you be able to tell from the results? It seems so wierd that I wouldn't have contracted the virus orally by now (I'm 32) but who knows?! I'm confused by the fact that so many people have it orally but yet so many people are still contracting it genitally. I thought the chances are so slim of getting the same Hsv 1 in both places?

2. When you say that the chances of someone that has hsv 1 orally have a slim chance of catching hsv 1 genitally, do you have any statistics? I feel like I'm only going to be able to date someone if they have had a cold sore. This sucks. I'm not with the guy that gave this to me and the thought of dating someone is killing me. I've now heard of 3 girls that have had this (successful and good people) and NONE of them have told their partners which I just can't morally even think of doing. I can't imagine giving this virus to someone and I can't imagine not telling someone after how much this has effected my life. I just want to know the facts so I can be up front with someone in the future.

3. How likely is it that a person would have HSV 1 on their mouth and on their genitals? Is it possible that I could've givent this back to my ex boyfriend genitally by having sex when I had an outbreak even though he had cold sores in the past? I'm just confused if he was lying to me this entire time now because he did not have a cold sore when he performed oral sex on me. I know I could drive myself crazy trying to figure this out and he would need to get tested.....so I'm wondering if his blood test came back positive for hsv 1...is there a way to tell if he actually had it genitally or not?

4. I am in my swimsuit more than the average person because I play beach volleyball....which I feel like I almost need to quit now! I could barely walk or sit down during the initial outbreak. I'm afraid to ever get bikini waxed again. Can I get waxed at a salon? Do I need to tell the person that's going to wax me? Can I spread it? Will it cause an outbreak?

I'm sorry for all of the questions but this has not been easy for me to accept. I've been so careful all of my life. I never slept around like so many people I know. I've been very depressed and I don't know how I'm going to get over this feeling. I went to a support group and I think it made me feel worse. I know it's horrible to say but I just don't want to be a part of that group. Their stories scared me. I can't imagine living with this the rest of my life. I want my old life back. I want the old me back. Sorry for the pity party. I just can't seem to get over this. I hate it. I've gone to a phycologist too. and I just don't seem to feel better. I've never had such a secret like this that I have to live with. My mom and few friends have been supportive but no one can really say anything that will make me feel better. I'm so afraid to meet someone I care about again.

1. So my question is if someone I date in the future gets tested and it comes back hsv 1 positive, is there anyway to tell the location of the virus?

Even though about 60% of adults in the US will test + for hsv1, only about 20-40% of them will get obvious cold sores to know that their hsv1 is oral. Most folks who have hsv1 orally aren't getting obvious cold sores to know it. Many of us have bodies that have evolved to fight the virus so that it doesn't cause obvious disease in us regularly. Unless someone has had obvious genital symptoms, it's ok to assume that the hsv1 is oral.

2. When you say that the chances of someone that has hsv 1 orally have a slim chance of catching hsv 1 genitally, do you have any statistics?

I'd have to really dig to find you an exact study on this but they've done ones where they draw blood at the same time as the initial diagnosis and most folks are hsv1 negative on the initial blood test. It happens but not often. Very few folks who can recall obvious cold sores in the past ( really cold sores and not canker sores ) show up on the boards saying they got hsv1 genitally later on to boot.


3. How likely is it that a person would have HSV 1 on their mouth and on their genitals?

If your bf has a hsv1+ blood test, no way to tell if it's oral or genital from that. If he can't recall symptoms either orally or genitally, it's probably a hsv1 oral infection. Hsv1 orally sheds more often than hsv1 genitally does.

Unless someone who contracted hsv1 genitally has an obvious cold sore to know that they also have hsv1 orally, no easy way to know. Only a few studies have been done on this and all of them looked for obvious cold sores and didn't look at oral shedding of hsv1.


4. I am in my swimsuit more than the average person because I play beach volleyball....which I feel like I almost need to quit now! I could barely walk or sit down during the initial outbreak. I'm afraid to ever get bikini waxed again. Can I get waxed at a salon? Do I need to tell the person that's going to wax me? Can I spread it? Will it cause an outbreak?

Not an issue. If you find that once you get waxed again you get an ob, next time start a round of antivirals the day of the wax to ward off an ob. The "trauma" of the wax can triggers an ob for some folks but for most it doesn't. Ever consider a more permanent hair removal method like laser ?


It really sounds like you are letting the IDEA of having genital herpes mess with your head. Take back control of it all and remind yourself that this probably won't reoccur very often and it's not going to be shedding very often either. You are just giving this pesky and very common virus far more power in your life than it deserves. Keep on following up with your psychologist ( your post got cut off ) and keep talking thru it all. Get back to playing volleyball and start having fun again!!!

betsy

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ASHA Moderator

Thank you for your reply Betsy. Yes, I agree that I am letting the idea of Herpes get in my head but I feel like all of my lifelong goals are over. I'm in the prime of my life and now this? UGH! I don't know how I would ever be able to tell someone this. It makes me sick to think of it. Someone at work just set me up on a date with a friend of theirs and thank goodness there were NO sparks. I feel like I'll never allow myself to fall in love again and if I do, and they accept this, I think I'll be so grossed out by sex. I'm repulsed by the thought of ever spreading this nasty disease. I don't know how I will get over this.

I feel like I should only date someone that has ever had a cold sore! If I do, do you think I need to tell them about this? You say the chances are slim of them contracting it genitally if they already have HSV 1 like I have? I know it's so bad but I just can't think of another way to bring this up to somebody. I'd rather die.

and then I think, ok, so say I do get with someone and they accept this, how will I ever have babies? I wouldn't want to have unprotected sex so how the heck do you get pregnant with this? I know how the delivery works and the c section, etc. but how the heck am I gonna get to that point if I have to them use a condom all the time?

I keep feeling like it is coming back and I check myself daily. and it started to itch really bad again the other day so I tried monistat because I didn't see anything. It seems to be better but I am also on the valtrex so I'm not sure what is what anymore! I think I am paranoid! The doctor also prescribed zovirax when I was diagnosed and I'm curious if I should use that or not if I feel another one coming on? It burned so bad the last time when I used it and I'm still unclear if I shoudl be using it before an outbreak, during, on the open sore, or what?

I HATE this! This is my life now? How do so many people deal with this? I don't believe so many people have it. No way!

Hey fearful,
I'm telling you my story in hopes that I can encourage you. I'm am only 23 and I contracted hsv genitally a year and a half ago. Not sure which one I have hsv1 or hsv2. I have had quite a few outbreaks so I'm thinking it could be 2. I also get cold sores so I guess that's hsv1 cuz' its not very often. I read your latest post and I saw myself in your shoes. I know EXACTLY what your going through and I almost cried when I read "I want my old life back:( I won't the old me back" Because that was me a year and a half ago. You feel like your not yourself, you check down there every day and every little itch or weird feeling makes you paranoid and you think your getting another ob, you don't want to date and you can't imagine EVER telling someone about this, you think you'll never have sex again and then the whole family thing, I kept telling myself how in the world would any man want to be with me....I'll never have a family....etc. And yes you'll think about the herpes every single day like all day long for "awhile" it won't be forever and yes there will be a day when you won't think about it all the time, I promise. When I contracted hsv, I was MORTIFIED, literally wanted to die, I thought my life was over. I wasn't suicidal or anything crazy like that but I just thought ever plan and goal I ever had was ruined. It's a scary thing believe me I know. Luckily I had been seeing a guy for about a year and although it wasn't from him whom I contracted hsv, I wasn't dating him at the time but we started talking again a week afterwards and I thought I would never tell him but he knew something was wrong because I was depressed and he thought it was something like an std and I kept hinting around but wouldn't tell him and he told me he would never see me any different no matter what so eventually I told him and believe it or not he confessed that he too had hsv genitally, WHAT A RELIEF...lol so he helped me a lot and definitely helped me to move on with my life and although we are not together today and haven't been in over 8 months (which I hate, lol) I am still moving on. I am still scared to meet someone for fear of having to tell them about my situation. I don't constantly think about it and since you are taking valtrex you shouldn't have to worry about an ob. My ex takes valtrex and he hadn't had a ob he said in over 7 years. Anyway, many things will change, like well I'm not taking meds at the moment so it may be different for you but I noticed that the symptoms of an oncoming ob changed. I would get real sensitive down there or my butt or the back of my leg or something, it's really weird, I still hate it to this day but there are many people who have this, the only problem is knowing who does or doesn't. It's been a year and a half for me and I still want a guy that has hsv genitally too. It would just be easier that way and they won't see you any different. So I thought about online dating like h-date or something like that. Lots of people have successful relationships with hsv Negative partners as well though so I dunno. I just know that you need a shoulder to cry on and I haven't told anyone but my ex whom I don't speak to now so I need a shoulder still at times as well. Maybe we can write and help each other. I promise it will get better but there are still bumps to go over. Don't let this be the end and be optimistic, focus on you and what you want in life and like betsy said don't let this take over your life. I still have so much to write but I can tell this is getting very long. If you'd like to talk more your welcome to email me at brittanyquest08@yahoo.com. Hope this helped. -Britt

If it was zovirax cream you were given, don't bother using it. In fact - toss it. It's of little use on herpes

Yes I do recommend that no matter who you start dating, when it comes time for sex, you talk about your hsv1 genital infection - even if they have an obvious cold sore and you know they have hsv1. It's a honesty issue don't you think? And plus if you are omitting telling them something like that about you, imagine what they aren't telling you about them? Besides they'll need tested for hsv2 to see what their status is so it's a good way to start the conversation as well as talk about testing for other std's.

Have you thought about talking to a counselor about all of this? Sounds like you are gving herpes far too much power in you life to be honest.

betsy

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ASHA Moderator

Betsy,
I'm now going on the six month mark and I'm thinking about getting off of the valtrex. I'm crying thinking that I'm going to turn 33 years old and now I have my six month anniversary of herpes...and I'm not married and the guy that gave this to me isn't the one I'll spend the rest of my life with. Ah lovely. Cry me a river, right? Can't seem to shake the sadness even half a year later. I'm thinking of getting off the valtrex just so I don't have to wake up and take this blue pill. I'd rather not think about this right when I wake up. good morning! oh and don't forget...you have herpes.

The worst part is thinking I'm going to be alone the rest of my life. I used to think I was a pretty good catch. Now I feel like the scum of the earth.

I'm just wondering how you would recommend I wheen myself off of the medication. I'm worried my body might go into shock or something if I just stop taking it. Any advise on that? Thanks. I'm sorry to be so pessimistic. I'm still angry at the world, myself, everything. Am I going crazy or are other people feeling this way too? It seems like some people just get over it. I think I'd be over it if I had someone in my life forever. I feel like that'll never happen now.

UGH.

You can just stop taking the valtrex. No need to wean or anything like that. with hsv1 genitally typically recurrences are few and far between anyways so it shouldn't be an issue.

Have you talked to a professional at all about any of this? Sounds like it's time for some counseling.

betsy

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ASHA Moderator

Hi Betsy,
I was just reading on the site again and saw on a recent post that you mentioned that a good amount of people that have hsv1 genital also get cold sores. Is this true? I thought that they had more protection so the chances of having both hsv 1 genital and hsv 1 oral were pretty slim. Do you have any statistics on how many people could have hsv 1 in both places?

I know I need to let it rest but the guy that gave it to me turns out to be not such an honest guy. I'm just wondering if he could've had the hsv 1 genital before me along with his cold sores on his mouth. I know...I need to let it go. It just bothers me to think that maybe he cheated on me too. I did see his test results (blood) and know for certain that he only has hsv 1 and his blood work came back negative for hsv2. now, whether or not he has it or had it in both places is the question. I'll never know.

You are right. I do need to see a counselor. good news is that I've been off of the medication now for over two weeks and I haven't had any sign of it coming back, even with my period back this week. Do you think doctors get a cut back for prescribing the medication for a certain amount of time? I did stop the meds cold turkey. I feel like printing all of this out and goign back to him so he is more educated on hsv1 vs hsv2. The support group I attended one time mentioned something about the doctors getting a cut back for prescriptions filled and I hate to think this doctor woudl put me through that knowing how upset I was.

I still wake up adn think I've just had a bad nightmare. I really appreciate your site. and all you do. I need to write a letter to Oprah but don't want to show my face.

I just wanted to say I can empathize with you...I was recently diagnosed via a blood test (I am asymptomatic), and have been going through many of the emotions you've described.

However, one thing that *does* make me feel like I have some control over this is being proactive. Maybe it's just because I'm an engineer, but I find that if I'm doing *something* to try and solve the problem then I feel better about myself and HSV.

I find it ironic that you mentioned Oprah in your last post, because getting an HSV segment on Oprah is my current "do something" focus! Everything you need to take action (form letters, cited facts, addresses) can be found here. Perhaps getting involved and taking action (even if that means sending a letter anonymously) will help give you a welcome respite from the "broken HSV record" playing in your thoughts. Believe me -- I know that tune well, myself! HANG IN THERE!

Not many studies that have specifically looked at how many folks contract hsv1 orally and genitally at the same time but the 2 ones I've read in the past , both only looked for the appearance of obvious cold sores as an indicator of oral infection along with culture hsv1+ genital infection, one showed 1/4 of folks had it both places and the other one was 50-60% as I recall. Since most folks who contract hsv1 orally don't get obvious cold sores to know it, real rates of infection both places might be higher.

betsy

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ASHA Moderator

Hi Betsy,
I'm so confused now. I understood that if someone has HSV 1 in their system (orally) lets say...that their chances of having it (HSV 1) genitally were very slim. I thought by having it orally actually gave you a little defense mechanism to also getting it in the other area - I actually almost wished that I got cold sores! But now you say that it's possible that if someone has HSV 1 orally they have a 25% - 60 % chance of also having it genitally at the same time? Those numbers are much higher than I consider slim chances!

My ex that gave this to me didn't have an obvious cold sore when he was going down on me and now I'm wondering if he maybe had this all the time down there and just never told me. I know it shouldn't matter...I have to live with it but I guess I'm still beating myself up on ever being with such a liar. He told me I was making it up in my head and not to worry...then I begged to see his penis...and he didn't want to show me...when I saw it, he had picked at it and there were bumps. He said he didn't want to show me because he didn't want me to worry and freak him out. Maybe he had this all along! UGH.

I am taking acidophilis. I'm off the medication now for almost a month and now I'm starting to itch down there. I don't knwo what's what anymore! I think I've gone completely crazy. Still can't get this off my mind. I'm goign to be alone forever.