Still so many outbreaks I can't cope..

Hi everyone! Just wanna say thanks for this amazing site and all the support. Has helped me a lot!

Well I never thought about posting anything myself. I guess my story is a lot like other peoples here.. I've had HSV2 for 1,5 years - got it from an ex boyfriend who did not know he had it (or so he says). I'm only 22.

The first year, I went on Acyclovir which was amazing. Only had the first outbreak and nothing else for that year. But I wanted to get off the meds so my body can learn to fight this, so stopped the meds back in september. Since then I've had an outbreak each month! Sometimes only 3 weeks apart...! And even those weeks without a real OB, I often still have itching, tingling etc.

Physically my outbreaks aren't that bad, a bit itching and pain and a few paper cuts for 7 days. Never blisters. Still annoying but manageable. Mentally though, I'm having a hard time. I do still wonder if it get's better, sometimes I lose hope. I wish I could just have at least 3 months without anything, like many other with HSV2. Since I stopped the meds I guess I've had maybe 10 outbreaks or so..

I wish I could drink a glass of wine without fearing it will cause an outbreak. I wish I could eat chocolate, stay up late, drink a lot of coffee without that fear in the back of my mind. Wish I could go out with my friends, be busy with all kinds of stuff instead of always having to stay stress free and go home early.. I wish I could just do stuff people my age do. This virus is really controlling my mind and my entire life and I am so sick of it. I could go back on the meds, yes. But I don't want to.. I think I have to "ride it out" and hope that it get's better in a few years maybe. It has to get better right?!

I'm jealous of those with GHSV1 (so so jealous of them!), those with oral herpes and those with asymptomatic HSV2 - why is my body so bad at adjusting to this damn virus! It's not fair. Life's just not fair. I'm a smart girl and never slept with many guys, always been careful. Guess herpes does not care about that, ha!

I'm pretty sure I'm having an outbreak again right now. Only 3 weeks since my last one was over. I'm not that stressed, I sleep at least 8 hours most nights, never drink a lot of alcohol, eat healthy (mostly), exercise, take vitamins and natural supplements..

Sorry for the rambling... Just had to write it down and share it with someone who might understand what I'm going through. Herpes is always in the back of my mind, lurking. I've accepted it, yes. But learned to live with it, no.

Can anyone relate to these feelings, and how do you cope with this? How do you learn to live with the outbreaks and the constant fear that something you do or don't do can cause an outbreak?

Tina

Hi, @Tina94. Sounds like your monthly cycle could be a trigger for you. I acquired herpes 18-25 years before I ever got the diagnosis, and I think the hormone shift during the month is a trigger for me too. Once I got diagnosed and really started paying attention to my body, I realized those mild yeast infections I was getting so often were probably outbreaks or sometimes a combination. When I was on Valtrex initially and then after I went off meds, the increased itching and irritation was pretty much every month. When I started acyclovir about four months ago, I was shocked by the absence of itching! I think I had become so accustomed to it.

Anyway, this is a long-winded way of saying that the outbreaks may get better or less frequent over time...or not. My body had two decades to build up antibodies and it still didn't decrease the frequency. I sincerely hope your case will be different. I can think of one month stress may have caused an OB (filing for divorce, a hospitalized dog and flooded basement). Otherwise, it all seems tied to my cycle. As best I can tell anyway, since I had an ablation last year and no longer have periods, but it's about monthly. I sure hope menopause doesn't make it worse!!

Have you tried keeping a calendar? I'm doing that...noting days I don't sleep well, eat a lot of junk, have tingling, itching or feel like I'm getting a yeast infection. I keep a small calendar in my bathroom to keep it easy. It may help you to more easily identify triggers. If your big trigger is your cycle, you might as well be enjoying your favorite foods!!

Thanks for the reply @HikingGirl. Acyclovir was such a game changer for me too! No itching, no outbreaks or anything.. I'm just not ready to give up on the idea that my body can fight this virus itself.. At least keep the outbreaks from happening once every month. I can't really find a system that reflects my period. The outbreaks appears before, during, after, so I don't know if it is related to that..

It does make me sad reading that you've had this for 20 years or so and still have outbreaks quite frequently. I'm sorry to hear that.. I hope it gets better for you soon - or that the acyclovir can help you for a long, long time. I do hope that my body will be better at coping the outbreaks as the years go by.

Last night I had two pieces of my favourite chocolate, just because I was like f*** this, I will not let it control my life. I think it was kinda because of what you had said: it may get better over time, or not. I do not know this, so why not just live my life and do things that I once did. Life's too short. So thank you for that! My outbreaks aren't even that bad, sometimes it can hurt while I sleep, but I can still walk, run, ride my bike and sit down without even feeling uncomfortable when I have an OB.

Anyways thanks for the support - I see that you respond a lot to other people on this forum as well. It is an amazing job you are doing @HikingGirl!

It's a nuisance my outbreaks have been so frequent, but honestly, even without antivirals it was still so mild I lived with it just fine all these years! I mostly tried the antivirals because I wanted to find one I tolerate well when I return to dating someday. I was so pleasantly surprised with the absence of itching when I started acyclovir I've decided to continue on it for now. I admit I also like not being reminded of it all the time!

Since everyone is so different, you could have a totally different experience if you stay off the meds. Either way, unless certain foods very clearly cause an outbreak for you (repeatedly and not by coincidence), I'm all for continuing to enjoy your favorite foods. Hope the chocolate was good! :-)