thoughts/insight on living with HSV?

[sugaree]

I've been dealing with a genital HSV-1 infection for about 8 months now. At the time of my diagnosis, I was encouraged by the fact that it was HSV-1 as opposed to 2 since a lot of people with HSV-1 have a relatively easy time with it (my boyfriend, who gave it to me, has had 2 outbreaks in 10 years that were so mild he had no idea he had herpes).

That has not been my experience. I have basically constant outbreaks, and although they're fairly mild (grateful for that!) they're really affecting my life. Even when I don't have anything visible, I have super intense itching and tingling (a horrible "creepy crawling" feeling) literally 24 hours a day, and often accompanied by sharp shooting internal pains (one spot where I break out is pretty far inside). I'm taking suppressive therapy, but it isn't helping--though my doctor upped my dose just today, so I suppose it could. But so far no luck. I'm taking Lysine. I've also started trying to stay away from foods with Arginine in them (does that actually work for anyone? hasn't made any difference yet for me...). I try to keep my stress levels under control with exercise and yoga/meditation. I get enough sleep and eat well. But no matter what I do, I can't forget for even 5 minutes that I have herpes.

I feel disgusting/disgusted with myself. It has totally obliterated my sex life with my very supportive partner. The few times we've had sex in the last couple months it has caused an outbreak in a matter of hours, not to mention the rubbing/friction is anything but pleasurable. I'm also constantly worried about where his hands are going--freaking out that he'll touch me intimately then touch my face or something without thinking. I know I might be a little paranoid, but I work in public health with an expertise in sexual health, and I know auto-inoculation can happen. I already have herpes in my crotch, and I really don't want it on my face or in my eye. My boyfriend is not in the least concerned, which I guess should make me feel better, but instead it just increases my anxiety and makes me feel like I'm the only one thinking about being careful. Ultimately, I'm so completely unable to relax during any kind of sexual contact and since it always ends up causing pain and discomfort, I truly want nothing to do with it. My boyfriend has been great, but I think he's starting to wonder if I'm ever going to have sex with him again (fair point, I think, because right now the thought of sex makes me want to run away). I've tried to convince myself to at least engage in some sexual activity even if it doesn't involve intercourse, but I find even the thought of it repulsive at this point.

I'm actually a certified sexuality educator, so you'd think that maybe I wouldn't be having such a terrible time with this. I know all the things you're supposed to say to people with STDs--I know I'm not dirty and I'm not bad and I don't have to be ashamed. I know I'm the same person I was before and that people will and do love me for that. I know how common it is. I know it's only a skin infection. I know I should feel lucky that this is the only health issue that's even present in my life right now. I KNOW all of this, but all I FEEL is contaminated and disgusting--like I need to wash my towels after I even touch them, like I don't want to go near my vaginal area in a grooming/washing capacity or any other, and certainly like I don't want anyone else to go near it. Ever. It's putting a lot of stress on my current relationship, and when I think about the possibility that it might ultimately cause the end of the relationship, I just find myself wondering who on earth would want to "take me on" with this. I don't think I'd want to date me. I used to be so comfortable with--and even proud of--my body. I used to be confident when it came to sex and my sexuality. I used to carry myself like I knew I was a catch. Now I literally wince if my boyfriend tries ANY kind of intimate touch--not just where I get outbreaks. On the (very infrequent) days I can convince myself that I need to push through it and have sex, it ends a few minutes later with sobbing. I am so not what I used to be.

So I know all the things I'm supposed to know and everything that I should be saying to myself. I've talked friends down off the ledge about STDs more than once--and I'm good at it. I REALLY get that herpes isn't "a big deal" in the big picture. But I have to say, every minute of every day right now it feels like a really big deal to me. It also feels like a really big deal to my boyfriend. And I don't know what to do about it.

Anyway, my doctor suggested I try posting on a forum like this to see if that might help me deal with some of these feelings, so I'm giving it a try. I'd appreciate any kind of response on any of the things I've mentioned. I guess ultimately I'm just looking for some community or something. I know there's no real "solution."

I hope to hear from some of you--and thanks in advance.

very best,

sugaree

[Elle22]

Sorry to hear that you've been having a rough time. I hope that your body gets things under control in the near future. Have you checked for any secondary infections like BV or yeast that may be helping outbreaks along?

[sugaree]

Thanks for the response. I have gotten checked for secondary infections, though not in the last couple months. I guess it could be worth checking again.

[VVK]

Keep in mind that at 8 months auto-innoculation would be extremely unlikely. Also, transmission requires friction of skin surfaces. Contaminated towels present a risk for maybe a few seconds at most before whatever quantity of virus there was on its surface becomes useless.

The trick to getting back to your usual self is getting the outbreaks under control - or whatever they are, maybe mostly they're not actually outbreaks but perhaps just nerve inflammation that needs to be controlled. Do you eat a good amount of fatty fish like salmon? Or just supplement with omega 3? What about vitamin B12?

[november13]

I'm really sorry this has been so bothersome for you. :\ I hope you find some peace soon. It sounds like you're doing everything right.

Some things I do/did: When I'm itchy down there, I use tea tree oil. I put a drop on the end of a qtip and dab it where I'm irritated, and that always helps me. For a while I was also drinking peppermint tea. (Read somewhere that peppermint helps. I'm not sure if it did but it was delicious anyway.) In addition to lysine, I also take zinc, vitamin C, and a women's multivitamin. The book Live, Love, and Thrive with Herpes was really helpful to me. There were some activities that were helpful for my self esteem too.

It's great that you found this forum. Everyone here has been such a big help for me. I'm glad to be able to bounce things off of others and respond to others' questions. I hope it helps you too.

[sugaree]

Thanks SO much for the responses.

VVK, thanks for the note on auto-inoculation. Makes me feel better for sure. And yes, I do eat a lot of salmon and such but would be very open to eating more of it and/or supplementing with Omega 3. Will also try the B12. Certainly can't hurt.

november13, I'm totally going to try the tea tree oil. And funny you should mention that book as I just bought (and read the whole thing) yesterday! There are some things that seem like they could be helpful in there for sure. Definitely going to try the zinc supplement she recommends. I can't say I'm quite on board with the whole "herpes is a blessing... taught me all I need to know about compassion, love, self-care etc." angle, though. Maybe that's just because I'm still kind of new to the whole thing and my symptoms haven't settled down. From what I've read, though, she's not the only one who feels that way. So maybe that comes with time? Right now I'm still just sad, angry, and celibate. Don't I sound like FUN?!

Really glad I found this place. Talking with people who don't really understand the experience wasn't doing it for me. Even my boyfriend who has herpes has a hard time understanding what it's been like for me since his herpes doesn't affect his life in the least. Anyway.

Hope everyone's having a good day.

[november13]

I totally understand. While there are some positives about getting herpes for me (I'm more compassionate, think more about who my partners are, etc.), I wouldn't say it's a blessing; I wouldn't say I would choose having it over not having it. I always think of this TED Talk whenever I hear people say they are happy they got it: http://www.ted.com/talks/dan_gilbert_asks_why_are_we_happy?language=en But I'm glad people make the best of a difficult situation when they can.

[joeer120]

I've been dealing with a genital HSV-1 infection for about 8 months now. At the time of my diagnosis, I was encouraged by the fact that it was HSV-1 as opposed to 2 since a lot of people with HSV-1 have a relatively easy time with it (my boyfriend, who gave it to me, has had 2 outbreaks in 10 years that were so mild he had no idea he had herpes).

That has not been my experience. I have basically constant outbreaks, and although they're fairly mild (grateful for that!) they're really affecting my life. Even when I don't have anything visible, I have super intense itching and tingling (a horrible "creepy crawling" feeling) literally 24 hours a day, and often accompanied by sharp shooting internal pains (one spot where I break out is pretty far inside). I'm taking suppressive therapy, but it isn't helping--though my doctor upped my dose just today, so I suppose it could. But so far no luck. I'm taking Lysine. I've also started trying to stay away from foods with Arginine in them (does that actually work for anyone? hasn't made any difference yet for me...). I try to keep my stress levels under control with exercise and yoga/meditation. I get enough sleep and eat well. But no matter what I do, I can't forget for even 5 minutes that I have herpes.

I feel disgusting/disgusted with myself. It has totally obliterated my sex life with my very supportive partner. The few times we've had sex in the last couple months it has caused an outbreak in a matter of hours, not to mention the rubbing/friction is anything but pleasurable. I'm also constantly worried about where his hands are going--freaking out that he'll touch me intimately then touch my face or something without thinking. I know I might be a little paranoid, but I work in public health with an expertise in sexual health, and I know auto-inoculation can happen. I already have herpes in my crotch, and I really don't want it on my face or in my eye. My boyfriend is not in the least concerned, which I guess should make me feel better, but instead it just increases my anxiety and makes me feel like I'm the only one thinking about being careful. Ultimately, I'm so completely unable to relax during any kind of sexual contact and since it always ends up causing pain and discomfort, I truly want nothing to do with it. My boyfriend has been great, but I think he's starting to wonder if I'm ever going to have sex with him again (fair point, I think, because right now the thought of sex makes me want to run away). I've tried to convince myself to at least engage in some sexual activity even if it doesn't involve intercourse, but I find even the thought of it repulsive at this point.

I'm actually a certified sexuality educator, so you'd think that maybe I wouldn't be having such a terrible time with this. I know all the things you're supposed to say to people with STDs--I know I'm not dirty and I'm not bad and I don't have to be ashamed. I know I'm the same person I was before and that people will and do love me for that. I know how common it is. I know it's only a skin infection. I know I should feel lucky that this is the only health issue that's even present in my life right now. I KNOW all of this, but all I FEEL is contaminated and disgusting--like I need to wash my towels after I even touch them, like I don't want to go near my vaginal area in a grooming/washing capacity or any other, and certainly like I don't want anyone else to go near it. Ever. It's putting a lot of stress on my current relationship, and when I think about the possibility that it might ultimately cause the end of the relationship, I just find myself wondering who on earth would want to "take me on" with this. I don't think I'd want to date me. I used to be so comfortable with--and even proud of--my body. I used to be confident when it came to sex and my sexuality. I used to carry myself like I knew I was a catch. Now I literally wince if my boyfriend tries ANY kind of intimate touch--not just where I get outbreaks. On the (very infrequent) days I can convince myself that I need to push through it and have sex, it ends a few minutes later with sobbing. I am so not what I used to be.

So I know all the things I'm supposed to know and everything that I should be saying to myself. I've talked friends down off the ledge about STDs more than once--and I'm good at it. I REALLY get that herpes isn't "a big deal" in the big picture. But I have to say, every minute of every day right now it feels like a really big deal to me. It also feels like a really big deal to my boyfriend. And I don't know what to do about it.

Anyway, my doctor suggested I try posting on a forum like this to see if that might help me deal with some of these feelings, so I'm giving it a try. I'd appreciate any kind of response on any of the things I've mentioned. I guess ultimately I'm just looking for some community or something. I know there's no real "solution."

I hope to hear from some of you--and thanks in advance.

very best,

sugaree

Wow, I wish I can say I only had hsv-1. I have felt like this because I have hsv-2. Granted, I did not get an outbreak around my genitals... I had my first cold sore at 16 after kissing my ex-husband... And really didn't know a "cold sore" was herpes until I was 30, smh... And not until I was told I have hsv-2 did I read about how hsv-1 can be "sexually transmitted" because of oral sex.. And well causing the same feelings as to having hsv-2... But my doctor made it seem as though if I only had hsv-1 I didn't have to disclose but do have to disclose for hsv-2 because it is sexually transmitted.. In fact, he was 100% sure my bf had have-2 since we've been together for for over 4 years when I got tested...haven't had an noticeable outbreak, Dk when I got have-2 or which of my previous 3 partners gave it to me.. My bf of now five years is negative so it wasn't him... My doc was wrong to believe he definitely would have it... What I have read about having-1 is that you get less outbreaks with time... I guess I've been lucky that I do not get horrible outbreaks for neither... Now that I know what I have, I can remember having uncontrollable vaginal itching..few a day or two but my doc had dismissed it as maybe it being caused by detergents or soaps or just yeast infection... With time, you'll feel mentally/ emotionally better... It's been 6 months since I found out, I've stopped crying every night so that's good... I still get worried when I'm intimate w my bf since I know he is negative...

[sugaree]

I totally understand. While there are some positives about getting herpes for me (I'm more compassionate, think more about who my partners are, etc.), I wouldn't say it's a blessing; I wouldn't say I would choose having it over not having it. I always think of this TED Talk whenever I hear people say they are happy they got it: http://www.ted.com/talks/dan_gilbert_asks_why_are_we_happy?language=en But I'm glad people make the best of a difficult situation when they can.

thanks for sharing that TED talk!

i'm trying to get to the compassionate part. i think i'm more stuck in negativity and i know i'm being anything BUT compassionate to myself (which i think generally makes you also less compassionate for other people, unfortunately). this whole thing has brought out a side i'm not proud of at all, in fact. hopefully i'll be able to change that with time.

[sugaree]

Wow, I wish I can say I only had hsv-1. I have felt like this because I have hsv-2. Granted, I did not get an outbreak around my genitals... I had my first cold sore at 16 after kissing my ex-husband... And really didn't know a "cold sore" was herpes until I was 30, smh... And not until I was told I have hsv-2 did I read about how hsv-1 can be "sexually transmitted" because of oral sex.. And well causing the same feelings as to having hsv-2... But my doctor made it seem as though if I only had hsv-1 I didn't have to disclose but do have to disclose for hsv-2 because it is sexually transmitted.. In fact, he was 100% sure my bf had have-2 since we've been together for for over 4 years when I got tested...haven't had an noticeable outbreak, Dk when I got have-2 or which of my previous 3 partners gave it to me.. My bf of now five years is negative so it wasn't him... My doc was wrong to believe he definitely would have it... What I have read about having-1 is that you get less outbreaks with time... I guess I've been lucky that I do not get horrible outbreaks for neither... Now that I know what I have, I can remember having uncontrollable vaginal itching..few a day or two but my doc had dismissed it as maybe it being caused by detergents or soaps or just yeast infection... With time, you'll feel mentally/ emotionally better... It's been 6 months since I found out, I've stopped crying every night so that's good... I still get worried when I'm intimate w my bf since I know he is negative...

thanks for the response. i'm sorry you're having a tough time, too. i haven't cried yet this week! granted it's only monday...

hope you're doing well.