Genital Herpes Diagnosis

[gemini55]

      I've had facial cold sores for 44yrs, very frequent outbreaks recently- due to severe stress.  Have been on Valtrex 1gm x2 for 2 yrs and recently added Acyclovir 800 x2 several weeks ago.  Also taking 1000mg Lyscine. My  gyn thinks that these meds would be helping if it were genital herpes, but they almost do nothing for my facial ones, in fact they've become more frequent. And have read that they simply don't work for some people.
       A blood test in Nov  showed pos. for hsv1, >5.00 and neg for hsv2, <0.91 and will repeat in Mar. I had UTI in Nov,  and was treated with Levaquin.
      Recently have had more sex with husband, including. oral, and 1st time tried a hypoallergenic silicone sex toy with sensitive formula lubricant.
      Jan 1 began symptoms of itching,tingling,burning, tenderness, and a whitish bump on clitoris.  But, opening to vagina very red, and very red and tender between the anus and vagina, which gyn told me to put Neosporin on. Severe itching in folds of genitals with flat looking whitish spots on skin all around which resemble the ones on mouth after cold sores heal.  Gyn says no discharge from cervix, but a slight, white, milky discharge from down low that probably isn't fungal since I had just recently completed a 2 wk course of anti fungal meds for something else.  I have developed bloating, gas, and abdominal pain and discomfort also.  Symptoms have been going on for 3 weeks now and I don't have a great immune system. In fact, just had a very bad outbreak in Nov and Dec of cold sores on both upper and lower lips that healed but still feel as though they are raw today.Also use Denevir.
      On Jan. 3rd went to Gyn. and he said it didn't appear to look like typical genital herpes and that you can get either hsv1 or 2 either place, but 2 is more typical.  A website women's dot gov says that type 1  on genitals is becoming a more frequent.
     Jan 12 my symptoms were no better so I went back and he ran a culture which he said would take week to 10 days to come back.  Found out after waiting almost 2 weeks that dr. office and lab screwed up the test and never did the herpes 1 or 2 but only a basic profile of reg stds, which was normal.  
     So, completely stressed now, I went back  2 days ago and he repeated the culture which by the way came back in less than 2 days as normal.  Wonder if the  first, botched culture would have shown something since it was closer to onset of symptoms?  Or that I simply don't have it.
     I am still very scared over all this; my gut says it's probably type 1 genital, and from what I read, it can be hard to diagnose. And my gyn. said variables like temp., handling, getting the proper sample, etc. have to be just so for the culture to show positive. He did advise me to have my husband get the blood test next time he went to his dr.
      I'm also scared to have sex yet, but dr thinks I can and doesn't think I need to use a condom, just more lubricant.
     Sorry this is so long. I would appreciate your expert advice. Thanks

[gracefromHHP]

oral antivirals do work for oral herpes infections. Certainly look into more about what is going on on your facial area. If you are still getting cold sores frequently while on suppressive therapy with valtrex 1gm 2x/day, that's a good sign that this isn't all herpes going on plus having both lips being involved is also a reason to think other causes. you aren't also taking acyclovir while taking valtrex at the same time are you?    

lysine is relatively ineffective for herpes.  pretty much wasting your time taking that. it's a big herpes myth.

I totally 2nd what mistakeguy said - it's incredibly unlikely this is hsv1 genitally going on.  your symptoms don't really sound like genital herpes either.  I wouldn't waste any time or money on lesion cultures genitally for herpes either - you are on suppressive therapy so they are going to come back negative each time for you anyways though no reason to think herpes from your description of symptoms.

there are many things that can cause both oral and genital issues for us gals especially.  time  for a more extensive work up to see what is going on.  no more neosporin in the genital area either - it can be very irritating and your symptoms don't sound like anything bacterial anyways.  work with your gyn and a dermatologist to try to figure out what is going on.  Vulvodynia and Vulvar Vestibulitis Syndrome  are also worth looking into though honestly they are just fancy words for pain in the genital area. You still have to work with your providers to find out what is causing them.  Wheat allergies and chemical sensitivities are common causes of issues as well so ruling them out is important. having your discharge tested for yeast and bacterial infections is also important.  if you feel your regular gyn isn't as helpful as they could be, look for a different one.

gas and bloating aren't a sign of anything that could be going on in the genital area.

grace

[Mistakeguy789]

I am glad you are here asking us questions.  

Lets answer so some things.  Given that you have HSV-1 orally it is rare for someone to get it in another location.  You would have to either transmit the virus to that location yourself or your husband would have to have HSV-1 as well to give it to you.  But with you having HSV-1 for so long orally it would be hard as you do have an immune response to fighting the infection in a new site of the body.  

The website is correct in that it is on the rise with the younger generation performing more oral sex then the older generation did.  Given the culture was negative you do make a strong point that is the culture can and does come out more often false negative.  

Have you considered working with a dermatolgist?  Given this is the skin I would look at going to them.  Yeast infections and even bacterial can cause the same problems.  But I would look at getting another doctor as well.  There is a possibility that you should get more lubricant (it won't hurt anyway) when having sex.