My story. Now mostly just itchy - anyone else have this problem?

[Capybara]

I've been lurking on here for months, just reading and getting up the courage to tell my story. I caught GHSV-1 about 3 months ago from an ex boyfriend who briefly came back into my life. One of the things I’m still struggling with is that we were – I thought – quite careful. Before we became intimate this second time around, we had two detailed discussions about STDs, testing habits, and previous "scares." He's a bit OCD about his health, which I found reassuring. He showed me his most recent test results from just a few weeks prior (all negative - but no herpes test was included). He mentioned a herpes "scare" he'd had a few months back which ended up simply being chafing due to wearing the wrong shorts while training for a marathon (PCR tests came back all negative). He'd never had a cold sore (that he knew of), and never had any other herpes symptoms. We used condoms. In hindsight, he had some mild but "painful and bothersome" (his words) razor burn or acne on his jawline, which he attributed to switching to a cheap disposable razor during his visit to me (he had to fly and couldn't bring his fancy straight razor in his checked bag). I do believe he had razor burn, but I'm also almost certain the razor burn + the stress of flying overseas for the first time in his life to visit an ex he hadn't spent significant time with in 7 years (me) triggered a mild outbreak - or at least shedding - in the spots where he had razor burn.

 

The primary outbreak, which started 3 days after exposure to his razor burn (via one very short bout of oral sex), was pretty terrible. First it hurt to pee, then the next day I started itching, then by 5 days after exposure the sores appeared. I knew what it was before I rushed to the doctor, but I didn't know if it was type 1 or 2. Fever, sore throat, muscle aches, swollen glands in my neck AND groin, and incredible itching and discomfort all over my crotch followed. I even had a few large, itchy lesions on my chest, back, shoulder, and a terrible one on my chin (friends even asked me 2 weeks after it cropped up whether I'd been in a bike accident - I still have a scar). I got on Acyclovir about 4 days into the outbreak, and by day 10 the physical symptoms were mostly over...the psychological symptoms not so much though. Feelings of being dirty and no one ever loving me again kept me in bed, crying and reading literally everything herpes-related on the internet for 2 weeks. I remained depressed for another month after that, and that feeling still comes and goes.

 

The guy who gave it to me apologized, said he felt terrible and had no idea he might have it. He said he'd get an igG blood test and let me know the results (not that it really mattered at that point - I had it and was nearly 100% certain he'd given it to me). He never got back to me about that and also hasn’t asked me how I’ve been doing. He was never very good at dealing with emotionally charged situations, which was one of the reasons we hadn't worked out the first time (mid-20s). I thought that 7 years might change that, but it clearly didn't.

 

Everyone I've talked to (including the GPs I've been to) told me that it's just not a big deal, that 50-90% of people have HSV-1, that it's the stigma that is the biggest issue, and that most people have no or very few recurring GHSV-1 outbreaks. I don't disagree that the stigma might be the worst part, but I just don’t agree that it’s “no big deal.” I've had 3+ subsequent mostly-internal (but incredibly itchy) outbreaks that have been not nearly as horrible as the primary outbreak...two after drinking 3-4 alcoholic drinks over the course of an evening (clearly I won't be able to drink much anymore), and one after being stressed about giving a presentation and not sleeping enough. The worst thing for me, though, has been a near-daily fiery itching where the original lesions were. I haven't had visible external lesions since the first outbreak, but this itching comes in unpredictable waves and lasts for sometimes 10 minutes, sometimes 6 hours. It's usually worse at night. Has anyone else had that? Does taking daily viral suppressants help with itching/paresthesia?? I was hoping to stay off daily meds for at least a year to let my body figure out how to deal with this on its own, but I'm so tired of wanting to claw the @#$% out of my labia!

 

[HikingGirl]

I have gHSV2 (acquired it 18-25 years before getting the diagnosis and had no idea I had it) and also oral HSV1 (no symptoms). In hindsight, my biggest symptom has always been itching. Even between fairly frequent outbreaks (which I thought were just yeast infections), I still had a low grade itching and figured I was just cursed with the itchiness.

 

After my diagnosis, I tried Valtrex, which did nothing for me but give me near constant prodrome symptoms. After about 2 months or so on acyclovir, one day I realized....."hey, I'm not itchy! Like....at all!!" It's been WONDERFUL. I practically feel like a new woman!

 

So from my experience, yes, antivirals can help with itching. If you don't want to go that route, my old standby is tea tree oil *diluted* with a wet cotton square or coconut oil. Even just plan coconut oil helps me if the itching is mild. I sincerely hope it subsides soon. It's maddening!!!

[Capybara]

Yikes! I didn't realize meds could cause constant prodrome symptoms! I'm definitely thinking of getting on Valtrex to try to stop the itching. It's funny the Acyclovir didn't cause any itchiness and Valtrex did for you, since your body just converts Valtrex to Acyclovir once it's metabolized (granted the absorption rate of Acyclovir is slower, so maybe it's a timing issue?)...thanks for the tips though :) Glad you've found some things that have worked! It gives me hope.