New diagnosis, feeling alone

[BoldAsLove]

Hey everyone,

 

I’m glad I’ve found this forum, just got my diagnosis two days ago and I don’t know who to turn to. I’ve told my mom and my best friend, who are supportive but they don’t quite know what I’m going through. My boyfriend hasn’t gotten his results yet (I’m pretty sure I got it from him) but he would rather pretend this never happened. I know he needs to cope in his own way, so I’m not upset, just feeling alone and in need of someone who can relate to what I’m going through. Looking online I found the nearest support group is 2 hours away.

 

I haven’t spoken to my doctor yet. The diagnosis came over the phone from his nurse. I don’t even know if it’s hsv 1 or 2 yet. My mind is reeling with questions, waiting for 2 weeks for my appointment with my doctor so I can ask him. Was it from my boyfriend? This seemed like a primary outbreak (came along with a high fever and flu like symptoms, plus the blood test came back negative for antibodies) and I haven’t been with anyone else since we got together 6 months ago. But is it possible id contracted this earlier in life? I thought I was getting yeast infections every couple of months starting a few weeks after we began sleeping together - was that the precursor to my first outbreak?

 

I plan to discuss all of this, and more, when I see my doctor in 2 weeks. In the meantime I feel lost and confused and in need of someone to talk to. Not necessarily for answers, I just need someone who can relate. Does anyone out there feel like I do? Please chime in and share your story. Or if you have any words of comfort or peace of mind for me and those in my position, please comment.

 

Sending strength and love to you all ❤️

[HikingGirl]

Welcome, @BoldAsLove. You are definitely not alone! I’m continually surprised by how often we have new people join us on this forum when you know that’s only a drop in the bucket as most people aren’t even aware they had herpes. When I was first diagnosed nearly two years ago, I felt so ashamed and alone I didn’t even feel worthy to talk to strangers! That craziness went on for eight long months until I finally saw a therapist, got educated about HSV, and started reading these forums.

 

The more I experience loss in my life, the more I realize that support sometimes comes from the people I least expect it to and sometimes doesn’t come at all from those I do expect would be supportive. And as you described with your mom and best friend, just because someone loves you doesn’t mean they know how to be supportive.

 

If you don’t feel like waiting two weeks to get more answers from your doctor, you could always call and request a hard copy of your lab results. Or you could leave a message with your doctor’s nurse and ask him/her to call you back with your lab results in hand. The big questions to ask is (a) did you have a swab test in addition to the blood test? (I’m assuming so, otherwise I don’t know how else you’d be diagnosed) If so, which type (1 or 2) do you have? And (b) which blood test did you have? The IgM (older, unreliable test) or the IgG? If it was the IgG, what was the index value (it’s a number)?

 

Nailing down whether this is a new infection or not is totally dependent upon the tests you had done, which makes for an even a stronger case to get those detailed lab results sooner than later.

 

 

 

[BoldAsLove]

Hi @HikingGirl,

 

Thank you for reaching out! That sounds like a rough eight months. Clearly it takes time to process a shock like this and adapt. Right now I’m worried about my daily life, considering I have a horse who I’m supposed to ride regularly. Thinking about not being able to do that, my lifelong hobby, makes me nauseous. I’m just hoping my outbreaks keep to a minimum.

 

I did have a culture test as well as an igg blood test and the results were posted online, perhaps not in full. The igg came back <0.2 for both. The herpes simplex culture only states herpes simplex virus isolated. No type indicated.

 

I had determined the recent exposure based on the igg test as well as the fact that I had all symptoms of a primary outbreak, which comes within 20 days (fever, swollen lymph nodes, etc.) that you wouldn’t get with a recurring outbreak if that was only the first symptomatic outbreak. I need to ask my doctor, since I don’t want to assume.

 

I do want to ask him all of this but I think i should just wait to see him face to face in a couple of weeks. That will be a pleasant meeting!

 

If you’d ever want to tell me more about your journey I’d love to hear it, feel free to send a message!

[JenPhoenix40]

@BoldAsLove welcome, and know that things get much easier the further you get from your diagnosis. I was diagnosed 2.5 yrs ago on my 40th birthday. Yay me lol. Welcome to 40, and here's a little viral friend to accompany you on your journey.

 

But anyway, my initial OB was as you describe, but the sickness only lasted 24 hrs or so, and the lesions were minimal. I take valacyclovir daily now, and don't have OBs. Initially, they'd happen when I shaved, intercourse, and especially backpacking. FRICTION. So keep that in mind. Stress and alcohol can also lead to OBs for some people.

 

The most important thing right now is to understand that this isn't anything that should affect how you feel about yourself. It's a minor skin condition. One in 4-5 people in the US has it, and about 85% don't even know because they may not have symptoms. Let that sink in. It's incredibly common. It doesn't mean you've been promiscuous. I'm 42 and have been with a dozen men, and I got it. It's the luck of the draw. I have friends, male and female, who've been with WAYYYY more people than me and are negative (to their knowledge anyway). Also, intercourse isn't required to contract it. Oral and just skin to skin contact in the "boxer region" can be risky.

 

This forum is awesome for support. I told my mom. I also told my BFF of 37 yrs. That BFF has an alcohol problem and told everyone she talked to, blaming it on drinking too much. Her mom, both brothers, sister in law, 18 yr old son, and her bf know. Luckily, her mom and one brother are like family, so they were understanding. So be careful who you disclose to right now. It's your story, and you should be the only one telling it. That BFF is no longer in my life other than an occasional facebook interaction.

 

I wish you the best of luck. With time you'll have a better perspective. For me, my first thoughts were, "It is what it is". I can't change it. All I can do is live with it, so in my mind that meant there wasn't much need for worrying and stressing over it.

[BoldAsLove]

@JenPhoenix40 -

 

Wow, what a BFF! That’s terrible - whether you’re OK with those other people knowing or not, that’s your business to share not hers! I personally don’t think alcohol is a valid excuse for any type of behavior, but I can’t judge when I don’t know what it’s like to have a drinking problem.

 

Funny story, I found all of this out at work. I didn’t manage to keep my wits about me AT ALL so now all of my coworkers know. Luckily we’re all women, and it’s only 7 of us. I know they will all be responsible with the knowledge so I’m OK with it, as much as I would have much rather had that breakdown on my own and kept this information to myself.

 

I know it’s still early, but I’ve got the same attitude as you - it is what it is. Im not shouting from the rooftops by any means, but I don’t want to act like this is some dirty little secret. It will only make me feel like it really is dirty and embarrassing.

 

I’ve had my time of promiscuity in my 20s. I’m not ashamed of it, I think everyone needs to follow their own path in order to grow. I thought I was being responsible by getting tested regularly. When I got older and stuck with monogamous partners, I always got tested in between. Never once been tested for herpes. If I had been exposed earlier in life, there’s nothing I could have done. But based on the factors that seems unlikely. Even more surprising that after all that, I got it now, being in a relationship.

 

I still want to know for sure whether I had this or not before entering this recent relationship. I’m hoping my doctor can help me narrow it down when I see him. Not to place blame on anyone, just so I can know what happened. Once I get my answers all I can do is embrace this, accept it, be responsible with my body and grow and learn from the experience.

 

Thanks for commenting! Feel free to reach out via PM :-)

[BoldAsLove]

Quick update / venting session: my boyfriend took his swab test a week ago. He still won’t call or log in online for his results. Every time I ask him about it he ignores me or gets mad. We’ve had a lot of unprotected sex over the past 6 months (as well as our first go around basically all of 2016) so even in the chance that I had it first he probably has it too. While he didn’t have symptoms he did say they found one bump upon inspection for the swab test, I guess that’s an indication he probably has it. But there’s still a small possibility he doesn’t, and he refuses to find out. I just need answers! Leaving questions in the air for no reason makes me crazy. And to top it off, he wanted me to go down on him the other night. Not knowing yet whether I have hsv1 or 2 or whether he even has it! When I told him we couldn’t make contact until he got his test results, which are readily available, he got upset again. I don’t want to get mad at him for handling this his own way, but I feel like he needs to grow up and be more responsible about this. Will he be the kind of guy who can just go sleep around and not tell anyone the truth?

 

On a positive note, my OB (I’m catching on to the lingo!) has been clearing up very nicely with the meds. This morning is my last dose (they gave me 1000mg 2x a day for 7 days). I still have some bumps but they are well on their way out, and the only pain left is in my swollen lymph nodes, which can make my whole hip/leg sore, but all in all it’s not bad. I’ve been limiting physical activity until those feel better since I don’t wanna agitate them. Can’t wait to get back in the gym, though!