Possible GHSV-1 (high IgG positive) and pending biopsy for LS

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Hi there, wonderful amazing people,

So this has been the year of health issues for me (‘30s mom of 2). Five root canals, bleeding disorder from long-term ibuprofen use for injury-induced arthritis, increasingly painful sex to the point it’s not been an option for several months now (luckily I have a most awesome and understanding husband) then tiny papercut-like sores on both sides of my perineum that wouldn’t heal...and the emotionally-taxing, frustrating and expensive journey to find out the cause.

At first I was convinced it was genital herpes and got swab tested twice with negative results. I was still desperate to get a diagnosis so I got an IgG test that came back positive for type 1, but there’s no way to know for sure if it’s genital. I just assume that it’s possibly both genital and oral and take a daily suppressive of acyclovir. I’ve also been tested for yeast, BV, every STD out there including Pap smear for HPV and all negative. I was sure it was just herpes after the IgG, but after months of acyclovir and every homeopathic herpes treatment I could find, still had pain and occasional perineum cuts. So last week I went to see a highly-rated specialist. She very quickly advised a biopsy for lichen sclerosus, observing that not only did I have the characteristic lightening of the skin but that my labias have moderately fused. sad The specialist plans on treating with topical steroids.

I was actually relieved when I thought it was herpes...now I’m devastated at the strong possibility of LS. My clitoris, labia tips and perineum (especially where the cuts appeared) are noticeably lighter, almost white. I guess in short, I’m expecting the worst and hoping for anyone with similar problems and any tips I haven’t yet tried for relief of the pain in the mean time while awaiting biopsy results. I’ve been taking L-lysine, vitamin C, vitamin D, iron (had slight anemia recently), and topically been bathing in epsom and applying coconut oil with lavender essential, but the whitening is still progressing and seems pretty rapidly lately. Also awaiting results for thyroid and other panels I got today with the biopsy.

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4 Replies

  • Posted

    HI Sus  ~ Nancy here, I'm in the U.S., age 72 and my first site for this LS has been the perineum and anus before moving on up to the labia.  IN the last 3 months I've been so helped by this site. I first learned about Vita min D and then MSM from women here and magnesium and OH yes! most of us use either castor oil or coconut oil very liberally down there reapplying every time we go to the bathroom. Some have mentioned how phenomenal olive oil has been for them - including applying it as far up the vagina as possible.  I've also read of using a Vit min E gel capsule and inserting it and letting our own body heat  dissolve it.  For me, the CASTOR oil has been the best for near the perineum and anus and I use the more runny coconut oil for the rest of me. 

    But closing those fissures as they are called actually takes a good dose of Vitamin D3 AND its cofactors of K2, magnesium, omega-3's, and vitamin A (which let's us take high therapeutic doses of D without toxicity worry ( they each balance each other out.... and learning about various diet changes - no sugar, gluten... each of us responds to one or another of hte autoimmune diet or anti-inflammatory diets, or Candida diets that you can read up online.. Welcome.     

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  • Posted

    Try mule 20 team borax. two tsp. in 1 litre of warm water, shake until dissolved

    use it after using washroom. works wonders for a lot of women. Keep area moist with something

    like coconut oil .

    Good luck.

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  • Posted

    OMG, you're cup REALLY runneth over. You poor love, you've been through the mill ! I take it from the wording of your message that you are not yet on the typical steroid ? For 99% of people I'd say you need the steroid to get rid of the white patches and any itching, tears, fusing etc the sooner you use it the better in my opinion. A few of us have recently hit upon the autoimmune connection and are following an antiinflammatory diet. (loads of info on Youtube) Sugar and stress are a huge factors in flare ups. There's a wealth of info on this site but don't experiment with too many things initially or you won't know what is helping and what is not ! You basically need a steroid and PRONTO, borax soak if you wish, spray to use after loo and barrier/lubrication at all times. Good luck and keep us updated.

    Oh and when you have the steroid, get an OINTMENT if possible not cream and rub in for 90 seconds, that's important.

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  • Posted

    Hi Sus

    This is a UK forum, you don’t say if you are from the uk?. Stop eating yeast, it’s the best thing I’ve done so far and taking probotics. Most people on here are changing there diets, best thing to do is read all the chats and you will pick up loads of advice and tips.

    good luck 😃

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