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Recently Diagnosed

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mc41453
mc41453

For the past year and a half I've had skin issues down there. It was always relatively minor, more of an annoyance. Acne on my butt, a cyst, folliculitis.. etc etc. I had thought since I was STD testing, it had to be some sort of autoimmune condition like Hidradenitis Suppurativa. I went to a clinic to have some of my lesions looked at and was told it was a simple follicle infection and sent home with antibiotics. The next month I went in for a STD test and a herpes dna test was included (but it was a cervix swab, not of a lesion) and it was negative. I naively took this information to believe that it was not herpes. I mean two different dr visits. Once I got off hormonal birth control, things seemed to get better. Further making me believe that what was happening to me was hidradenitis suppurativa.  Then something happened to my gluteal cleft, it was intensely itchy, hurt, and it had a lesion. I went to urgent care. Told them I was worried it was herpes. They looked and said definitely not, this is a pilondial cyst. Again, more antibiotics. I changed my diet and things got better. I didnt have a recurrence again for almost 2 months, once I started taking hormonal birth control again. In a panic, I decided to get a herpes blood test. I wanted to 100% see a negative result to put my mind to ease. 

Well. it came back positive. Went to my obgyn, she told me my symptoms didnt sound like herpes but we did a blood test, and again it came back positive for both HSV 1 and 2. 

Questions for people who have lived with this for a while, how long did you all have symptoms before confirming your status? 

Does it get easier disclosing? 

I want to take daily anti virals. Since I am hsv 1 and 2 positive, and I can't run to the dr for a swab every time something isn't right down there, I want to just be on meds. Does anyone have side effects from the medication? 

When do recurrences slow down? I've tried to create a timeline of my symptoms, and so far I've got 23 times I've had my "bumps" in the last 18 months.

I'm just feeling really alone right now. I want to talk freely about this to my friends/family but I do worry about my status getting around, and unwanted judgment and criticism coming my way. 

0 likes, 6 replies

6 Replies

  • FelizCastus
    FelizCastus mc41453

    Posted

    What type of blood tests were they? IgG or IgM? How did you score? Blood tests alone are not reliable under certain scenarios, so actually you should get one (or more) of your presumed outbreaks swab tested the next time. Far more accurate if done early on fairly new bumps, and it might rule out some of the things you thought were outbreaks, because not all of them do sound like outbreaks.
    • mc41453
      mc41453 FelizCastus

      Posted

      Igg and igm

      Igm was negative.

      Igg was 20 for hsv1, and 6 for hsv2.

      It's the only thing that could possibly explain what was happening to me, all the lesions had clear fluid, no pus . I can only assume that I was asymptomatic for hsv1 orally and maybe that's what my genital issues where rather atypical and mild.

    • mc41453
      mc41453 FelizCastus

      Posted

      And the last flare I had, I ate a lot of raisins the night before. Which I under stand is aggravating to hsv.
    • FelizCastus
      FelizCastus mc41453

      Posted

      Hmmm, those are unlikely false positives, but not all of your outbreaks sound like they are actually outbreaks. I'd still get the occasional one swabbed just to better understand what's an outbreak and what's not, since not everything that goes on down below necessarily is. Foods are not clinically proven triggers. Maybe in some individual cases, but there is no official advisory against eating any particular foods, just fyi.

  • e00826
    e00826 mc41453

    Posted

    Hey, I understand your feeling of being alone and not feeling like you can talk about it openly. Herpes can be looked at as "social suicide " Ive been medically diagnosed for a little over 2 yrs now and was misdiagnosed for 3 yrs. I dnt think it gets any easier with openly telling ppl about your status. To be completely honest you have to be careful of who you tell about it. I am on an everyday suppression therapy which helps so much. If I feel like I may be getting ready to have an crisis I will take 2 pills a day for 3 days. I am in a relationship now and was very comfortable enough to let him know my status from jump and he accepted it which I was truly surprised. He has been checked and hasnt come back positive for the std. So suppressive therapy works very well. NO MATTER

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