Aa
Aa
A
A
A
Close
1726082 tn?1309925542

Recently diagnosed with HSV 1 genitally

To be honest, i'm not quite sure what my question is. I was diagnosed with HSV 1 genitally 2 months ago and it pretty much turned my world upside down. I thought that my boyfriend at the time had given it to me as i had my first outbreak 5 days after we had sex, however he was tested (via bloodtest in NB) a month later and it came back negative. So now i'm confused as i have no idea who gave it to me or how long i've had it. I try to be careful and always get an STD screen before starting a new relationship but in NS they don't test for Herpes unless you have an outbreak which i think is stupid considering how many infected people are asymptomatic. My point is that because it's not tested for here and so many people have no symptoms the chances of me finding out who gave it to me are next to nil.

I had a boyfriend that cheated on me numerous times so i thought perhaps he could have been the one considering he had unprotected sex with so many women while with me but he refuses to get tested (he's the only one i've been with in the past 4 years that lives outside of NS and can be tested). About a year ago i dated a guy who loved performing oral sex on me, about 4 months after we broke up i noticed he had a cold sore, but he never had one the entire time we were dating, so i don't know if he could have given it to me when he had no symptoms or if it's more likely that i got it from intercourse.

I've been having a hard time finding consistant information about this disease and what it means for me. My doctor just kind of brushed it off saying it's a "nuisance disease" and not really harmful, but i can tell you that mentally it is vey harmful to me and i've contemplated suicide a couple times since finding out. In my head i feel like no one will ever want me again and that at 30yrs old i will be single and sexless for the rest of my life and i'm terrified of that feeling. I've watched people treat me like a leper when they find out about my disease and it hurts so much (emotionally).

I'm not a bad person, i'm not promiscious or dirty but i feel like that's how others see me now and i've lost all my self esteem and self worth. I want to know who infected me and don't know how to deal with the fact that i may never find out. I want to know if it is most likely that i got it from oral sex or if it could have been from vaginal sex. I want to know why i just now had my first outbreak (in May 2011) when i hadn't been with the boyfriend that had cold sores for 6 months (nov 2010).

Every guy i've slept with i've also kissed and performed oral sex on but i have never gotten a cold sore from it, so why is it that i got it genitally only (not that i want to have it in both places - i'm just curious why it chose that place to take up residence).

I just want help understanding this disease and what it means for the rest of my life. Can i still have sex, can i still have children (as it's hard to get pregnant while using a condom to prevent transmission). If no one i've ever had sex with has ever shown any signs of Herpes but still infected me how do i know when i'm most contagious? Even my doctor didn't think i had herpes when she first tested me because i just had a few small bumps that she said looked like razor burn. So now how do i know if (when i get bumps) it's an outbreak or razor burn or a pimple or ingrown hair as my outbreak didn't even look like herpes to begin with. She only tested me because i had swollen lymph nodes as well.

I realize this is a lot of questions and i apologize. I'm just so overwhelmed right now and feel so alone and scared and don't know where to turn. Any advice or help you can offer would be very greatly appreciated. Thank you.
25 Responses
Sort by: Helpful Oldest Newest
Avatar universal
How are you doing now? I recently found out I have HSV 1 in the genital area and it has been a roller coaster ride of emotions.
Helpful - 0
Avatar universal
I have Genital Herpes type 1 . I felt some tingling every now and then in the anus area . I never seen a bump or anything close to a break out on the actual penis.  I also did a lot of research and I read that GHSV type 1 is very hard to transmit because the virus doesn't operate good below the waist.  And I am told that shedding only occurs 11 days out the year . Lately I've been having sex with boxers on, and would stick my condom protected penis through the opening just to be safe . My question is, can I still have sex without a condom?  And is oral sex without a condom totally over for me now that I have GHSV type 1?
Helpful - 0
Avatar universal
Thank you for your comments and suggestions.  I didn't realize I posted incorrectly.  Sorry about that.
Helpful - 0
101028 tn?1419603004
You need to see a dermatologist every single time you have symptoms. I recommend stopping the valtrex completely so it doesn't interfere with lesion cultures.

they also need to test you for bacterial skin infections like MRSA too.

grace
Helpful - 0
Avatar universal
Only now I've noticed you "hijacked" someone else's post. Please open a post of your own if would like to continue this discussion - forum policy.

As far as I'm concerned (not my field of expertise in biomedics, really), Behçet is not easily diagnosed through blood tests. It's not like other autoimmune diseases. An app with a reumatologist would be ideal for you, IMO.

Maybe it would be better to stop the Valtrex and try another swab of lesions. Valtrex is known to quickly decrease the level of viral particles in sores, thus giving false-negative results.
Helpful - 0
Avatar universal
Thanks for responding.  We have discussed Behcet's disease several times, but the doctor doesn't feel my symptoms point in that direction (other than the ulcers).  Frankly, I'd rather have Herpes than Behcet's.  So far my test for auto-immune disease has come back normal, as well.  I will continue to pursue what is causing this.  So many illnesses do not have test to confirm them.  I'm back on Valtrex and I'm going to see what the future brings.  Thanks again!
Helpful - 0
Avatar universal
If you had swabs that were negative for herpes, it's time to find a new diagnosis. Besides, herpes is usually not associated with rash on other parts of the body.

Your report reminded me of Behçet's disease. Maybe it's time to find a doctor that deals with auto-immune diseases.
Helpful - 0
Avatar universal
Hi, I've glad I've found a thread that discusses this issue in such depth.

Last year at age 58 I had my first severe case of canker type sores in my mouth and genitals.  So painful I refused to talk for three to four days, and I could barely walk or sit.  Three outbreaks-Aug, Sept and Dec.-each as bad as the first -the last one occuuring while on Valtrex to control it.  Every swab test I've had has come back negative, but my gyn dr. still thinks it's herpes.  Each time I broke out, I also had an odd rash.  It's a reddish circle (not ringworm-the entire circle is very reddish, barely raised, larger than a quarter on my calf, plus smaller ones here and there on my body. They do not itch and it isn't hives. It always appears on my calf first and that one is the last one to go away when the genital/oral sores heal.

My dr. is dumbfounded.  she is very smart, but she can't make sense of it or figure a connection.

Let me also add that I've been married for 40 years this year, and I have never cheated on my husband.  He did have one indiscretion-oral sex with a  woman 20 yrs ago when we were separated for a short time.  He nearly killed himself over it because of guilt so I know he hasn't ever done anything else, especially since he's bipolar and disabled for the past 11 years.

The sores have been swab tested four times and have come back negative for herpes; however I have HSV-1 present as I've had chicken pox and shingles, and a fever blister or two over 30 years ago.

So my dr. has concluded it must be genital HSV-1, which I must have gotten through oral sex with my husband who still has occasional mouth sores.  However, I have always refused to have sex when a sore was present so even that is weird after 40 years together.

Now after nine months without an outbreak, I started to come off the valtrex slowly.  After the last four days of no valtrex, I woke up during the night with a burning sensation.  I checked myself and I am nearly blood red everywhere the canker sores presented the first three times.  I feel raw, and a little blood seeps through the skin where the redness is, too.  Very painful--the same pain as when I had the sores. However, I do not have the mouth ulcers this time either.  The reddish rash (calf and elsewhere) is present as usual.  

All of my blood work has come back normal/negative-Chlamydia, yeast, fungus, amine, wbc, rbc, epithelial cells, trichomonas, clue cells, and for auto-imune disease (ana, sedimentation rate, and rheumatoid arthritis factor),  My dr. did bloodwork for HIV, syphilis, and my liver just to rule them totally out. The results aren't back yet.

I am sorry this was long, but it is so strange I wanted to give as many details as I could.  Although I am beyond the anger and hurt over this, I am confused as to why the illness itself would have changed its presentation.  Does anyone have any input or has anyone had anything like this?  I am hoping someone can shed some light on my condition.  
Thanks!
Helpful - 0
Avatar universal
Also, I get rashes and sometimes a tear when using a pad for my period.

Also get ingrown hair and razor burn from shaving down there.

Neither are as painful as my HSV1 OB was. I used to think everything that happened down there was from HSV, but it was not. I was just being paranoid.
Helpful - 0
Avatar universal
So much good information this thread!

Just want to chime in with my experience. I have HSV1 gentially also. The first outbreak was severe. Painful and ill. I was devastated too.

The first 2 years I had 2 very very mild outbreaks.

The next 11-12 years NO outbreaks. Genital HSV1 isn't a big deal. Just be aware, be honest about it and take care of your body.

After learning about HSV1 gentially, I felt so much better. It's he best place to have HSV1 since most likely your outbreaks will be very rare, if ever.
Helpful - 0
101028 tn?1419603004
well I'm glad your self esteem is getting back to normal :)  A low self esteem is far more unattractive than herpes could ever be!!!!

Helpful - 0
1726082 tn?1309925542
I know :(  But on the plus side i am finding it easier to deal with (the not knowing part) and i'm realizing that this disease doesn't make me any less worthy of love. Since finding out that i had Herpes, i told 2 guys and they both stayed with me for short periods of time but they walked all over me and treated me like i was an inferior person. I think in their minds they figured they could get away with it because they thought i had no choice but to stay with them because who else would want me. I realized that i had allowed them to believe that because that is what i initially felt - that i was unworthy of love and a bad person so it was ok to let others treat me badly. I have since come to realize that it's not ok and i don't allow it to happen anymore. I am still the same person and although i felt that this disease weakened me initially i find in some ways it has made me stronger too.
Helpful - 0
101028 tn?1419603004
unfortunately you might never figure it out  :(
Helpful - 0
1726082 tn?1309925542
The only other thing that was going on at that time was the severe tear i had received from the rough sex - the bumps (and swollen lymph nodes) occured 3-4 days after the tear. I should also mention that my boyfriend at the time never performed oral sex on me - we only had vaginal sex, and there were no bumps on his penis before or after my outbreak and to this date he still has never had an outbreak so that makes things even more confusing to me. But i do know genital to genital transmission of HSV 1 is possible just less likely.

Also it started out as 2 small bumps (the size of a pin head), then became 8 in total but they never blistered or scabbed - just looked like little red pimples but without much fluid inside (infact my doctor was only able to find one bump with a tiny bit of fluid that she could test) and they were only on one side of my labia minora (the left side, not that that matters, lol). As for pain - it was really hard for me to tell if the bumps hurt or not because i was experiencing excruiating pain from the tear at the time and by the time the tear healed the bumps were gone.
Helpful - 0
101028 tn?1419603004
look around at laser prices - it's actually fairly affordable when you compare it to a lifetime of other means of hair removal. ( though you aren't in the US so maybe it is more pricey there for you )

Yes, it probably was a new infection for you in May unless something else was going on that triggered a recurrence. If it was more than 1 lesion, odds are it was a newly acquired infection.

Helpful - 0
1726082 tn?1309925542
Thanks, it would seem then that because my lymph nodes were swollen and painful back when i had what i suspected was my first outbreak (in May), that would mean that it was in fact my first one? I haven't had any bumps since - that i can tell of. Like i said i get razor rash but it's in the normal razor rash places, whereas the herpes bumps were more away from the hair growth areas.

So my dilemma is thinking that i'm always having an outbreak or that it's always razor rash and never being completely sure. I was really hoping i could count on the lymph nodes to tell me because then i would know for sure, darn - they just can't make anything easy can they, lol.

As for your suggestions - i tried waxing before and had a bad reaction and ended up with severe bruising and scarring. I've tried creams but had an allergic reaction to that and ended up burning all the skin off down there - that took about a month to heal and i unfortunately can't afford laser hair removal so shaving is my only option as going au natural isn't really for me :)

As you said - i should be surprised when i actually do have a recurrence as they're not often, but i've never really liked surprises or uncertainty, i guess that's another frustration i'll just have to learn to deal with in regards to this illness :(  I guess i just wish i had a way of knowing for sure if i was having an outbreak so i could take extra precautions during that time and i hate not knowing when i'm contagious and when i'm not. This disease is definitely a lesson as far as my personal control issues go, lol.
Helpful - 0
101028 tn?1419603004
typically your lymph nodes won't become swollen with recurrences. Since it's hsv1 genitally, you really should be more surprised when you do have recurrences more than expect to have them with any frequency.

you might want to consider a different form of hair removal if you are prone to razor rash. Consider waxing or even some laser hair removal to make the area you have to keep "tidy" smaller.  You can also use a body hair trimmer too to just keep the hair short instead of taking it all off too - depending on the location of course. No one wants to look like they have a small animal hidden in their bathing suit with fur sticking out the sides ;)
Helpful - 0
1726082 tn?1309925542
Thank you Grace. After i had typed out my questions, i realized i had forgotten one key thing which was the fact that i had swollen lymph nodes in my groin area which of course meant that it was definitely genital - so i guess i could have answered my own question had i thought about it a bit longer, lol.

That also made me think of another question, as i find it really hard to tell if i'm having an outbreak or not due to the fact that it didn't present as "normal" herpes and it was the presence of the swollen lymph nodes that made my doctor do the test, can i use the swollen lymph nodes to tell when i'm having an outbreak in the future? As in, would i get swollen lymph nodes everytime i have an outbreak and that's how i could tell or do they only swell and get painful at sometimes and not others? If i was to rely solely on the presence of bumps i would never know as i shave there frequently so i quite often have razor burn and i'm not sure if a bump is a hair follicule or a herpes bump as i've never had anything that actually looked like a typical herpes lesion.
Helpful - 0
101028 tn?1419603004
Herpes is not a blood borne infection. You won't test + on lesion cultures from any body part just because you have it orally.  You know you have hsv1 genitally from the lesion culture that was typed hsv1+. It wasn't + just because you had had hsv1 somewhere else previous to your genital symptoms.

Can trauma to the genital area cause a recurrence of a previous infection? Indeed it can. Hard to tell at this point if your initial infection was before this and you never realized it ( initial infections in women can present on the cervix and be hard to distinguish from vaginitis ) or if this was a newly acquired infection from your now ex partner. You might never figure that part out at this point but you do know what you have and where you have it which is what is important for deciding how to treat your herpes as well as what precautions to take with a future partner.

As to do you have hsv1 now orally as genitally - well hard to tell unless you get an obvious cold sore. What few studies we do have show that anywhere from 1/4 - 2/3's of folks who have hsv1 genitally, also contract it orally at the same time. When you have a new partner, if they don't already have hsv1 themselves, discuss the potential and see if you want to utilize barrier protection for oral sex or not in case you do have hsv1 orally too.

keep asking questions as you think of them - you will get through this :)

Helpful - 0
897535 tn?1295206435
I have had genital HSV1 for about 3 years now (or, is it 4??). So, I understand some of what you're feeling (although, any of the feelings are way in the past). I remember crying when I found out in the doctor's office, of course right away thinking "oh my god herpes", but fortunately that lasted shorter than the length of my outbreak. Once I became educated, and realized I was no different a person with herpes than I was without, moving on was pretty easy.

Sounds like you're struggling a lot with something you may never have the answers to. In the end, you know you have genital HSV1, and the healthiest thing you could do for yourself is try to move forward from the who gave it to you and when and why and all of those things that clearly are causing great distress for you. Don't get me wrong, I'm sure it's frustrating not knowing, but if it's impacting your life like this, consider working with someone to overcome it. Wouldn't it feel great to NOT have this herpes burden on your mind? You can get there, but it may just take time and finding a good counselor to do so.

A couple quick answers: blood pumps throughout our body. Where it's drawn from makes no difference. Your swab/culture was positive, that's what matters. I've never had a cold sore either; my infection was a primary one on my genitals. Could I have got it orally at the same time? Possibly. But I don't worry about it, there'd be no point. But to answer your question, folks may get it both places because usually during a sexual encounter you kiss in addition to (in this case) having oral sex.

As to HSV1 orally and HSV2 genitally, well yes statistically that's usually how the two go. About 1/3 of all new genital herpes cases are HSV1 though, no doubt due to oral sex. As to your question, Dr. H explains that stats here:

http://www.medhelp.org/posts/STDs/HSV1-Questions/show/1393887

And another good post:
http://www.medhelp.org/posts/STDs/Recently-diagnosed-with-Genital-Herpes-HSV1/show/969931

Fortunately most folks my age (46) already have it, so it's been a non-issue with dating over the past couple of years. Relationships are tough to come by, herpes is easy compared to the other stuff you have to work through to find the right partner in life.
Helpful - 0
Avatar universal
"It's just that if it wasn't the most recent boyfriend and was in fact the one i know for sure who has HSV 1 orally that i dated almost a year ago - why would i have caught it genitally and not orally? Isn't it easier to catch one or the other type in the area they are more common too - HSV 1 on the mouth, HSV 2 on the genitals? And for that reason, if i was to have unprotected sex, not that i plan on doing so, but if i did would i be more likely to spread HSV 1 to a partners genitals or to their mouth (if they performed oral) due to the fact that HSV 1 prefers residing in the mouth area."  GREAT QUESTION!

"my doctor just kind of brsuhes it off cause it's just Herpes, no big deal - easy for her to say cause she doesn't have it, lol" - HOW DO YOU KNOW, LOL!
Helpful - 0
1726082 tn?1309925542
I have a few more questions and was wondering if either of you might be able to answer them. First of all the boyfriend i was with when i first tested positive has since left me after months of no sex as he refused to touch me. He's still adamant that he doesn't have it because he tested negative and refuses to believe that there is such a thing as a false negative so i have simply learned to let it go - i have no control over anyone's thoughts or feelings and refuse to fight over it.

So i guess my question is this, on the off chance that it really wasn't him and i caught it from someone else before him, it is possible to have a first outbreak months after catching it? Can a trauma to the area bring about an outbreak? See when i had sex with him, he was quite rough and i tore quite badly - that was actually why i went to the doctor's in the first place because i had such a severe tear, it was shortly after receiving the tear that the little bumps appeared.

Also, i know it is possible to have HSV 1 orally and genitally at the same time, although somewhat rare, any idea what causes a person to have it in two different areas? Would they have been likely to have caught it in both places at the same time or seperate transmissions over years?

I read that having HSV 1 orally is supposed to help reduce the chance of catching it genitally but yet it still happens. It was mentionned that most people are exposed to HSV 1 orally as children and it made me start to wonder. Both my parents have HSV 1 orally - my dad had it first and passed it to my mother before they were married, so it seems as though i should have been exposed to it through them as a child as they would have kissed me goodnight most nights as an infant.

So then i started questionning how accurate the swab test is - i know it's more accurate than blood tests in determining where the HSV is located, but i was wondering if you could test positive for it anywhere you are tested for it in your body. For example if they did a blood test on my arm - that should show up positive because it's in my blood, even though it's not from the actual infection site. So is it possible that when they tested the little bumps (that my doctor was sure was not Herpes before they were tested) they could have simply been little bumps due to trauma or irritation and that they tested positive for Herpes simply because by scraping quite a bit in order to get the bumps to bleed so she could test them - it showed up in my blood? Sorry if that doesn't make sense, i keep trying to reword it but i can't seem to get my words to work :(

I've never had a cold sore in my life, but from time to time my lips will burn and i'll get a tingly sensation on my upper lip that might last for a day if that and then go away - i had that long before i ever tested positive for HSV 1 genitally. Is it possible that i already had it orally and it's just asymptomatic and that when i tested positive it simply showed that i have it in my system but it's not necessarily genital or am i grasping at straws and more likely have it in both places, just one has symptoms and the other doesn't?

It's just that if it wasn't the most recent boyfriend and was in fact the one i know for sure who has HSV 1 orally that i dated almost a year ago - why would i have caught it genitally and not orally? Isn't it easier to catch one or the other type in the area they are more common too - HSV 1 on the mouth, HSV 2 on the genitals? And for that reason, if i was to have unprotected sex, not that i plan on doing so, but if i did would i be more likely to spread HSV 1 to a partners genitals or to their mouth (if they performed oral) due to the fact that HSV 1 prefers residing in the mouth area.

I don't mean to keep bothering you with so many questions, it's just that i find getting answers isn't always easy and my doctor just kind of brsuhes it off cause it's just Herpes, no big deal - easy for her to say cause she doesn't have it, lol.  Over the months since i tested positive i have found moments of peace and acceptance and other times it causes me a great deal of stress - hence the reason i keep asking questions as it makes it easier for me to understand and find peace again. Thank you both for all your help thus far - it's means a great deal to me :)
Helpful - 0
101028 tn?1419603004
unfortunately even the best blood tests still miss 1 out of every 10 hsv1 infections. odds are the partner you were with when you had your first ob 2 months ago really is infected and it just isn't being reflected on his blood testing he had done. if you never had symptoms previously, odds are it was a newly acquired infection for you and not just a recurrence from a prior partner.

Hsv1 genitally on average  is only active less than a dozen days out of the year. Since at your age, 1 out of every 2-3 people has hsv1 orally , odds are that any partner you find, is going to have it whether they know it or not. If they have it orally, they are incredibly unlikely to contract it genitally from you. Even if they don't have it before meeting you, odds are they aren't going to contract it from you either. Recurrences will also most likely be few and far between so there shouldn't be many disruptions to your sex life either.

In time, it will get easier to talk about your genital herpes with potential partners. it's all still new and fresh and not easy at this point. Always remember to talk about all std's with potential partners, not just the hsv1 you know you have.

keep asking questions :)

grace
Helpful - 0
1726082 tn?1309925542
Thank you for your reply and advice, i greatly appreciate it and am feeling better. Some days i feel calm and somewhat at peace with the situation and other days i can be really depressed. In answer to your question - i think the reason i want to know who gave it to me is because i don't think they realize they have it or if they do, they never bothered to tell me, so i want to know who it was so that i can tell them and hopefully they would take precautions against infecting someone else.

I'm trying to look at this disease as a skin condition as you suggested. The truth is a know a few people with HSV 1 orally - infact both my parents have it as do some of my friends. Unfortunately it doesn't stop some of them from treating me like i've got the plague which is really frustrating because it's the exact same disease just in a different location, but oh well - i can only control my own thoughts and feelings.

Oh yeah those acronyms are NS (Nova Scotia) and NB (New Brunswick). And yes you are correct that my doctor tested the bumps, but even she was surprised by the positive result because it didn't look like any herpes case she's ever seen - yay me, i always have to be different, lol.

Anyways i do feel better after reading your reply and i'm going to try to keep a positive attitude about all this. As far as my future relationships go - if someone can't love me inspite of this disease then i guess they're not really worth it anyways :)  I'll check out that website you mentionned as well. Thanks again :)
Helpful - 0
1 Comments
Hi CursedGirl. I stumbled upon your comment after myself being diagnosed in a very similar way. With the tear and then positive for HSV1. I also had a very tough times coming to terms with it, especially during the outbreak (which is still happening actually), but I am feeling much better reading other people's experiences with type 1. Could I please ask you to share how you have been in the last few years? Did you choose to do suppressive therapy? How many outbreaks have you had? Were you in a relationship? Did you transmit the virus?
2
Have an Answer?

You are reading content posted in the Herpes Community

Didn't find the answer you were looking for?
Ask a question
Popular Resources
Herpes spreads by oral, vaginal and anal sex.
Herpes sores blister, then burst, scab and heal.
STIs are the most common cause of genital sores.
Millions of people are diagnosed with STDs in the U.S. each year.
STDs can't be transmitted by casual contact, like hugging or touching.
Syphilis is an STD that is transmitted by oral, genital and anal sex.