Genital Herpes: Useful info for those looking for answers like me!

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This discussion has been locked due to a period of inactivity.

Ever since I suspected genital herpes (GH) and was recently confirmed to be going through a primary outbreak of HSV-2 (ugh, the "bad" one), I have been researching the topic like crazy! Guess that's a pretty normal thing to do, lol, and I'm sure many others here have done the same.

Anyway, I thought it would be helpful to share everything that I have learnt thus far, and I will continue to add to this thread as I come across more useful, interesting and/or relevant info.

Genital HSV symptoms https://patient.info/forums/discuss/comment?discussionid=482438&commentid=1776485

Testing for HSV https://patient.info/forums/discuss/comment?discussionid=482438&commentid=1776488

Does having one HSV type protect you against the other? https://patient.info/forums/discuss/comment?discussionid=482438&commentid=1776489

Autoinnoculation (self-contagion to other areas) https://patient.info/forums/discuss/comment?discussionid=482438&commentid=1776492

When is genital HSV most contagious? https://patient.info/forums/discuss/comment?discussionid=482438&commentid=1776494

Genital HSV transmission risk https://patient.info/forums/discuss/comment?discussionid=482438&commentid=1776497

Antiviral meds for genital HSV https://patient.info/forums/discuss/comment?discussionid=482438&commentid=1776501

Natural treatments for genital HSV https://patient.info/forums/discuss/comment?discussionid=482438&commentid=1776503

Genital HSV and increased risk of HIV https://patient.info/forums/discuss/comment?discussionid=482438&commentid=1776505

Transmission risk via inanimate objects, swimming and blood https://patient.info/forums/discuss/comment?discussionid=482438&commentid=1778698

Genital herpes and menstruation https://patient.info/forums/discuss/comment?discussionid=482438&commentid=1778703

Genital herpes and BV and yeast infections https://patient.info/forums/discuss/comment?discussionid=482438&commentid=1778708

Is there a vaccine for HSV-1/2? https://patient.info/forums/discuss/comment?discussionid=482438&commentid=1778714

Possible complications of genital herpes https://patient.info/forums/discuss/comment?discussionid=482438&commentid=1782789

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  • Posted

    I have done tons of research but I can't find anything about constant nerve pain due to herpes??

    Any insight on this?

    I get intense burning sensation on the inside of my butt cheeks, inside of legs and vagina. It moves around but it is always there and it is driving me crazy!

    • Posted

      That's because it's probably not due to herpes. I've read loads on herpes, too, and nowhere does the info, research or experts mention anything about *constant* symptoms of any kind, even when asked. Shingles can cause lasting nerve issues, however, and there's an unrelated nerve condition called vulvodynia, amongst others. Have you tried seeing a neurologist?

  • Posted

    I was diagnosed with herpes type1 about 3 months ago. My initial outbreak was horrific (painful open soars everywhere on my vagina) and lasted about 10 days. My gyno started me on Valtrex immedietly and said it should suppress the outbreaks and prevent them from coming back. Unfortunately, I have yet to go longer than 3 days without a new outbreak occuring. Generally, I get a few open soars and fissures toward the back of my labia that heal anywhere between 2-6 days. My doctor prescribed a lidocane ointment to put on the soars to help with the irritation and to keep them moisturized. Since I have had so many outbreaks, my skin seems to be extrememly thin/ sensative to any pressure ie. I tear putting in a tampon. 

    I took the Valtrex for about 2 1/2 months without any sign of it preventing reoccurances (have been on it since I had my very frist outbreak, 2x a day for 10 days the nonce daily) so decided to get a second opinion about treatment. I am now taking the original medicine that was used to treat herpes which is a twice a day pill. Not sure that it is helping much since it has been 3 weeks and same thing as the valtrex... 

    In addition to my prescribed meds, I have been taking lysine, vitamin C, and B12 since my first outbreak. I just started taking a pro-biotic as well (too soon to see results). 

    This is extremely frustrating and mentally very difficult to deal with the lack of control or any shred of normalcy. I have accepted my diagnosis and want to move on to being able to manage it but nothing seems to be helping. Do you have any suggestions for what might help me prevent reoccuring breakouts?

    I met somebody who I am extremly interested in and I know I will need to disclose this before we take it to the next step. I certainly am not ready to share my news with him because of my lack of self esteem because I feel completely out of control and cannot reassure myself it'll get better at this point. How likely is it that he can contract it from me if I have mild symptoms and he uses a condom? Also, if a future partner were to contract it from me, would is still be type 1?

    Thank you!

    • Posted

      Type 1 is the type/strain, so it will always be Type 1 no matter where it occurs on the body. It is not common for genital HSV1 to recur that often and all herpes should respond to the meds. Have you tried increasing the dosage? Also, how were you diagnosed? By which test?
    • Posted

      Thank you for your response. Yea I thought it was sort of odd that I just can't seem to 100% kick an outbreak for more than 2 days. I have not, my doctor said that the new one is a twice a day and to follow that regiment. I am currently on acyclovir. I went in while I still had an outbreak, I believe she collected a sample from one of my soars and also a blood test. 

    • Posted

      You should check that there was a swab done confirming gHSV1, and if not, have it swabbed just because it sounds so atypical of genital herpes regardless of type, but especially gHSV1 (too frequent/constant). There was no reason to change your meds either. They could have upped your dosage to the maximum of 1000 mg valacylovir a day (500 mg morning and evening to spread the meds out in more severe cases). Your current dosage of acyclovir (presumably 400 mg twice daily) is not much different from 500 mg valacylovir a day, since it is an indirect form of the same drug, so more of it is needed to deliver the same or similar quantity.
    • Posted

      I know she took a culture of it since it was still open but I havent actualy recieved my results via mail. I was presecribed Valacyclovir HCL 1 gram tablet twice a day for 10 days, then once a day for suppression (I had a second outbreak before even finishing my first round) after being on that for two months with no signs of lettng up another doctor said maybe try the Acyclovir 400mg twice a day, still having outbreaks and maybe more now than before? I am going to go to another doctor to get another opinion and want to get retested as well. I am just not really sure what else to do... It isn't like there are a ton of medicines to try anyway. I have also lost 6lbs in the past few months which is very unsual and have been experiencing dizzy spells while sitting with a resting heart rate. It could be the constant stress of this or maybe there is more going on which is causing the continous outbreaks? Not sure if anybody else has ever had a case like this... hopefully something gives soon!

    • Posted

      Oh, if you were previously on 1000 mg valacyclovir daily for suppressive therapy, then 800 mg acyclovir daily is much less! Yes, definitely retest and get a second opinion, preferably from a sexual health doctor or good gyno. Hope they can sort that out for you, as it sounds very unpleasant to be constantly symptomatic with herpes or whatever.
    • Posted

      Yea both doctors are gynos through my insurance medical group. I hope so too, it would be nice to feel semi- nirmal again... Having constant outbreaks makes me feel like I'll never be noraml again. 

  • Posted

    I thought I had a yeast infection and I went to the doctor and then did a pap and said it was bv.... well now my bottom has been hurting I don't see any blisters. But everything kind of has a burn to it. I started feeling funny a week ago. I have been on the medication for bv for only one day. I feel like it's more then a bacterial information I think I herpes but no blisters yet..... how long till someone gets blister?

  • Posted

    Hi, FelisCatus, love reading about folks experiences and suggestions. I am a female, 61 years old,Having had herpes since 1976 (41 yrs), I have had many an outbreak and seen alot of changes in the course of my infection over time. In the begining, for many years I got my outbreaks like clockwork with my period. There was a stretch of time where I was ob free for months at a time, I would only get it every April; strange that I remembered that just now. But, like a bad penny... it keeps showing up... through emotional uphevils, stress, other illnesses, pregnancies, and life in all phases. My first ob was devistating,emotionally and physically. Plus I was sooo ashamed to have this nasty, incurable disease. Vitrually nobody had heard of it at that time and there were no anti-viral durgs. No internet either, to search for solace and information. One doc told me that maybe laying the cooled down tea bag from my cup over the sore would help, and maybe that did help alittle. Over time, obs have been from mild to pretty dang painful. 

    There have been "a few" men in my life, some I told about my herpes, some I didn't. I regret that I probably passed it to some.

    I always have warnings that an ob is coming. Believe it or not, a long-standing symptom, is a pronounced pain in my foot, odd no??? but there is no mistaking it for me. Also, something I can only call painful skin, at areas on my lower body. Joint pain in general is my current warning. 

    About 10 yrs ago, my ob site changed from my vag to my buttock, where I can plainly see, the sore is in the exact same spot and has the exact same pattern, every time. Never get them on my vag anymore.

    Take heart newbies, life in all it's glory goes on.  Although it may not seem like it now, you will get through this, learn how to manage it and have a satisfying life.  

    Very pleased to hear that the virus is not spread through contact during daily living, this has been a huge and long-standing fear of mine. The fear of passing herpes to my children via the toilet seat or something, to people who I am visiting or are visiting me. That info alone, relieves alot of stress (which is a trigger and a half for me). 

    What prompted me to write was an ob I am having right now. Taking care of a loved one (Alzheimer's), results in my not taking such good care of myself. Stress again. I am having obs that clear up w/ meds (I start them when my foot starts hurting) and ointment, only to return in a day or 2.

    So I found this forum looking for help. The idea that a soak in epsom salts would feel good and help, is one I like. Just feel creepy about emersing myself in a tub with my germs floating around in water and coating my skin. Is this really safe? I won't deposit eckk on my skin and start new infections? Ease my mind if possible.

    After all these years, I have never spoken so openly about my herpes and the chance to do so is worth a milloin bucks.That alone has done wonders for me.  Thank goodness for this opportunity. 

    • Posted

      That's great you found this forum helpful and a way for you to offload after all these years! It definitely helps to open up. It's also really refreshing to have someone who has had so much personal experience with herpes post here, as most people on here are relatively new to it.

      In your experience, did menopause change your outbreaks in any way? They say that over time, recurrences should become less on average. Would you say that's been true for you? Just curious. That's interesting how you get foot/joint pain before an outbreak, and how some outbreaks have been painful, even after the first one, which is supposed to be the worst.

      Regarding soaking in Epsom salts, they usually suggest a sitz bath, so a small tub for your private parts only, not whole body. But even so, in your case, you should be immune from getting it elsewhere, since you have had it for so long and likely carry ample antibodies. I still wouldn't rub a lesion then immediately rub my eye (no need to overly tempt fate!), but I wouldn't be too concerned about soaking in a regular bath and certainly not a sitz bath (once you have genital herpes, the entire boxer shorts area is already essentially infected via the sacral nerve body in which HSV "resides"wink.

  • Posted

    Does Hvs Igm <1:10(1:10) means I am positive or negative ?

    • Posted

      If IgM, that doesn't really mean anything, since IgM is not a reliable test for herpes. Even the CDC advises against it. You should retest for IgG (and only IgG should you ever need to test for herpes in future).

    • Posted

      I just don't understand why they would even use IGm if it's useless! Smh this world I tell you.

    • Posted

      It's because IgM antibodies are useful for detecting recent infections in other cases, but not herpes due to its recurring nature. Also, the IgM test for herpes just isn't very accurate for some reason. Guess doctors aren't fully up to speed about herpes, so assume the IgM test is just as relevant and good for herpes as other diseases. Perhaps it would be better if labs stopped offering the IgM test for routine herpes testing. That might be more effective!

    • Posted

      Kayla, I may be in the same boat as you, let me know....but I tested positive HSV2

      IgM 1:10 H Titer <1:10

      Negative HSV1 IgM

      And I don't even understand the IgG results

    • Posted

      The confusing part about IgM is, does it mean you DEFINITELY have an infection of HSV1/2?
    • Posted

      No, it does not. Disregard IgM and retest for IgG. Testing window period for IgG is 3+ months from exposure.
    • Posted

      So what does this mean for IgG

      Reactive => 1.0

      Non Reactive < 1.0

      HSV1 IgG 0.03Index <1.00

      HSV2 IgG 0.08"."

    • Posted

      Does this say when someone can or can't transmit

    • Posted

      It means you are below 1.0 for both HSV types, so are negative. You don't have either, according to the test at the time.

    • Posted

      I've secluded myself not understanding this test, after everything I was told, everything I read...all that registers is that I'm HSV2 positive...going for a retest now that's been exactly a month, any suggestions on affordable reliable test to take?

    • Posted

      Without lesions to swab, you can only really do the IgG antibody test for herpes at 3 months post-exposure. Do not repeat the IgM test. It is not advised in the case of herpes, even according to the CDC.
    • Posted

      Okay, so it's been exactly 31 days since I last had unprotected sex with a brand new partner after being abstinence for two years...should I wait 3 months for the retest? Or has enough time pass since my first test (I took 3 weeks ago) 6-8 days after having intercourse.

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