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Still really angry and struggling 😧

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So it's been 6 months since I was diagnosed with Genital HSV 1. I got it from my husband who has Oral HSV 1 even though there were zero signs of a sore and he hadn't had an outbreak in a couple years.

I am still struggling so much with this. Like extremely struggling. It is still on my mind all the time. Literally there is still not an hour that goes by that i don't think about it. I still have really bad days where I feel humiliated, angry, sad and I'm crying.  More anger than anything.  If my husband tries to talk to me about it I get even more upset. It seems like he's trying to downplay it because he feels guilty.  Last night he said 'There are lots of people who live with it' which,  yes there are but that shouldn't dictate how i feel and how i deal with it.  To some people it's not a big deal,  'just an inconvenience' I've seen people here call it but to me?  It IS a big deal.  Just because some others may not think it's a big deal, does that means I'm overreacting because i do? My feelings aren't valid?  And is easy for him to say. He doesn't have genital herpes. This is something I will have for the rest of my life!  No cure.  Nothing I can do about it. I feel disgusting.  Gross.  Dirty.  The thought of sex disgusts me.  It's all i would think about during. Anytime my husband says something about how good he thinks i look or grabs my ass that's the first thing i think of. That I have herpes. Then I feel disgusting again. I could not feel less sexy.  I don't want oral anymore, i don't even want to make out with him.  I'm so paranoid about getting it on my mouth now or spreading it to my kids. And yes I'm aware that the risk is practically nil for doing that but I think that the way I contacted it is why I am so paranoid. He had absolutely no outbreak, not for a couple years yet I still got it. If he had a sore starting or ending then it would be our own fault. Actually scratch that.  We honestly didn't even KNOW this could happen. Which is why I have a lot of anger.  I'm angry at my husband which I know is multiplied by a thousand because we have been struggling as a couple for a couple years. But I'm angry at him for not knowing or learning enough about his life long 'cold sores' to know that he could pass it to someone's genitals. I think of the other women he's been with and hope he didn't pass it to them.  I'm angry that they are CALLED cold sores and not what they actually are.  Herpes.  I had a doctors appointment last week for a prescription renewal and I was sobbing in her office when I had to talk about it.  She said 'is it better if we call them cold sores?'. No. Because that's not what it is. It's Herpes.  And maybe if we called it what it is we could have more of a dialogue about it and prevent spreading it by educating instead of calling it 2 different things.  One being worse than the other. Or so society says.  It's ok for someone to have cold sores but if you have Herpes....well....
Why is it ok to have herpes above the belt but not below? Because herpes is associated with the genitals. No one calls cold sores herpes. When someone says herpes, people who don't have it automatically think of it being on your genitals. I did.  It wasn't until I was diagnosed and began my research that I found out about different strains and how location factors into it. Or that 'cold sores' are actually herpes and can be transmitted to genitals . (Again, because they are called different things) I'm angry at our sex education for not explaining this all and being specific. They need to stop calling them cold sores. They need to teach that it can be transmitted even without symptoms.  They need to fully explain this to kids so they have as much information as possible going forward.  But what society really needs to do is stop making us the butt of their jokes.  Their punchlines.  The jokes you see in movies. I feel so embarrassed when I hear one.  We feel bad enough. We don't need to be reminded of it when we are trying to escape for a couple hours.
Wow I just read all this back and holy cow I am angry and bitter. I know I should see a therapist or something but the thought of telling someone, anyone that I have genital herpes is mortifying to me. I havent told anybody. Not even my Mum who is my best friend in the world and who I know wouldn't judge me. I just can't. I hate this. 

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Hello @PinkButterfly,

I am so sorry that you are going through this. I just want to say that you are not alone and encourage you to talk someone. Humans are very vocal creatures; our emotional health is strongly correlated to the way we speak. This is part of the reason therapy is so successful. Many people feel an instant relief by just speaking about an issue to someone. I personally felt better after talking about my diagnosis with trusted friends and family. I'm wishing you all the best and hope you get the same feeling of relief and comfort that I get from talking about my diagnosis.



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Hi @PinkButterfly I am waiting on my diagnosis of HSV1 after swab and culture after and swab and culture and no explanation to my genital burning, itching, painful urination and a papercut type lesion my doc noticed. They didn’t think it was HSV at first but after so many tests and antibiotics and antifungals with minimal relief and return to symptoms I have gotten the blood work and swab done for HSV. My boyfriend of 4 years tested positive for HSV1 on the std panel he got when we started dating. I had gotten one too that was negative but he hasn’t even had a “cold sore” the whole time we have been dating so I didnt think much of it. Here I am 2 months after unexplained pain and misery. I am taking acyclovir and I’m on day 6 with minimal relief. I’m taking 4 400mg tablets a day. Your story stuck out to me and made me sign up. I am certain that HSV1 will be my diagnosis and I’ve spent a lot of time crying and worrying. I was just wondering if your first “OB” was anything like this.. I hate even calling it an outbreak. I thought maybe I was luckier that I’m not getting actual large lesions but this pain will not subside. Sorry you’re going through this. 

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Hello @PinkButterfly I was just like you. I was angry, I did not feel sexy, I felt dirty... all of it. I understand what your going through. I was diagnosed with genital HSV-1 in August 2016. I was mad that the virus was so common that most health care facilities do not even test for it because maybe it could of be prevented for people like me who have weakened immune systems. I was constantly upset when I heard jokes being made about herpes or cold sores like I was some lesser human being because I had HSV-1. I am telling you, that I do not speak for everyone on this website but I went through what you are going through. I was angry, I grieved for the me "before" HSV. Last month was two years and I am still learning to cope with HSV-1. I still find it challenging at times. Just know your feeling are validated. He  should not downplay your diagnosis or your feelings. It is sad that it is so common that as a society it is not tested for on most STD panels unless asked for. If you are not ready to talk about it you do not have to yet. At first only vented to people on this site. Anonymously, you can message with people on here like I did. I eventually told my immediate family like my mother and sisters because they would not judge me or tell anyone. I felt I needed to tell someone and i knew I could trust them. When you are ready you should tell your mother. 

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Hi Pinkbutterfly

Sorry about your situation!

It wasn't that big deal for me when I first found out, 8 years ago, in fact its a bigger deal for me now, even though OB's are rare.
But we are all different & deal with things in different ways, If you feel the way you do, no one can tell you not to feel that way.
Anger & feeling dirty are a pretty common feeling, hopefully it will pass eventually & get easier.

Its strange that oral herpes isn't deemed to be so bad & when I said to the woman that rejected me
You wouldn't be so bothered if I had cold sores years ago on my mouth, she said its hardly the same is it?
I did try explaining to her that it could be passed to her genitals through oral sex, which she answered "watever"
Just shows that most of us are not educated enough about this until normally it is to late & we educate ourselves.

Maybe it would be better if they called it Upper cold sores & lower cold sores than Herpes as that name carries such a stigma
after all Chicken pox is Herpes too, but mostly everyone's had that.

I wish you the best & hope you start to feel better soon

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  • 3 weeks later...

Hello PinkButterfly, just wanted to say I can so relate to your post. I have genital herpes after having sex with someone that I loved who happened to have a cold sore. I had NO IDEA the virus could spread like this. I never received any sex ed in school and I’m furious that this person couldn’t even be bothered to read up about thier condition before getting intimate with me. Now I’m stuck with an incurable std that I suffer with daily whilst this person is happily carrying on with life. My life has been turned upside down and I fear I’ll never recover from this, I hope that I do but I struggle so much. 

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