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Genital HSV-1 Diagnosis: Seeking Information and Support

Three days ago I was diagnosed with genital HSV-1. I am devastated, and I would really appreciate being pointed toward reliable resources/information related to:

1) Risk of transmission of genital HSV-1:
     a) Both genital-to-genital and genital-to-mouth;
     b) Both female-to-male and male-to-female;
     c) To a partner who already has HSV-1 antibodies and one who does not.
     d) With and without condoms.
     e) With and without suppressive therapy.
     f) As many combinations/sub-combinations of these scenarios as  possible.

2) Shedding rates and how they (and thus transmission risks) change over time.

I've seen too many different numbers to know what is reliable, and I'm interested in the specific breakdown in terms of transmission type (i.e. to a partner's mouth vs their genitals) and how previous HSV-1 exposure/antibodies affects the risk. I know that genital HSV-1 is still relatively "young" in terms of how long its unique characteristics (outbreak likelihood/frequency/severity, shedding and transmission rates, etc.) have been studied, but is there information out there upon which people could reasonably rely? I would like to compile my own "dossier" of information and keep it in one place, rather than Googling everything I can think of and trying to piece it all together without even knowing if it's valid.

Although my outbreak has been very uncomfortable, I'm struggling much more emotionally than physically. I would welcome suggestions for supportive forums and communities (in addition to this one) in which HSV+ individuals have shared advice about how to get through the psychological shock, shame, and fear associated with this diagnosis and not to allow the stigma and ignorance surrounding HSV to affect their sense of self-worth or identity as a sexual entity. This includes how to approach disclosure, which is my single biggest fear. I have no intention of engaging in a sexual relationship any time soon, but right now I feel like I am no longer even allowed to flirt with someone because there is a miniscule chance that if we ended up dating I might transmit a pretty benign skin condition to them - one that they may well already have or could easily contract by kissing any of the other 50-80% of the population who has it. I am terrified that no one will be willing to accept this about me, that I will never feel or be regarded as sexually attractive ever again, and that a single, low- (but obviously not zero-) risk encounter in which I got incredibly unlucky has ruined my chance to find a partner.

I can't live my life like this, and now that I've become more familiar with HSV, it seems beyond ridiculous that our society reacts to it the way we do, when most people don't even know they have it and it causes no permanent physical damage. How have others been able to rise above these issues (which right now seem insurmountable to me) and live normal lives, sexually and otherwise?

I'm sure more questions will arise as this information sinks in, but these are my primary concerns as I try to cope with this diagnosis. Thank you for any advice you can provide.
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707563 tn?1626361905
Hi -

We are moving this to the Herpes Community, so the info will be there, but closing it, since you have other threads there. You should keep your questions contained to one thread to make it easy for others to help answer your questions.

Thanks, and we wish you the best!

Emily
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Avatar universal
I am reading your older posts now, and they re so helpful! You felt exactly how I'm feeling, it's nice to know that I'm not alone!
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Avatar universal
Thank you for sharing! I am a bit confused - it sounds like you tested positive for HSV-1 in 2013, but then tested negative in 2015? Is that correct? How was the diagnosis made each time (swab, blood test, etc.)? My test was a swab, which I understand to be almost aways accurate. I will definitely get bloodwork done in 6 months or so, but I gather that I shouldn't hold out hope for a different result :-(.

If you did test positive by swab in 2013 and negative in 2015, what did the doctor say? Did she attribute it to the treatments you've been doing?

Or am I misunderstanding, and you do have HSV-1 but the vaginal tears are not related/not outbreaks?

Again, thank you so much for sharing, it is definitely helpful!

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Avatar universal
Thank you for the suggestions! I have heard of that book and am thinking of getting a copy, and I will definitely check out those links too!
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Avatar universal
Thank you for the response! My replies:

Was this your primary outbreak?
-Given the timing and severity of the symptoms, I have to assume so.

What kind of activity did you have before this outbreak?
-One encounter involving unprotected reciprocal oral sex/fingering with a new partner who had no visible signs of HSV-1 (I know transmission usually happens when someone is asymptomatic). My vaginal area was immediately uncomfortable following the encounter, 3 days later I had a terrible sore throat and flu like symptoms, and 1-2 days after that it was excruciatingly painful to urinate. After 3 trips to urgent care I was finally diagnosed with genital HSV-1 (via swab) and late-stage mono.

Did you have cold sores before this?
-Not to my knowledge.

There is this website called westoverheights.com, and a doctor named Terri Warren has a forum on this website. She would be able to answer all of your questions above, and she is very knowledgable. I would absolutely trust her advice and answers.
-Thank you! I've been to the site and read the handbook. I still have some follow-up/very specific questions about shedding and transmission, so I do plan to follow up with her.

I believe she's stated before that genital hsv 1 only sheds about 3-5% a year, and it is highly unlikely to spread from one partner's genitals to another. Also, if a person has an oral hsv 1 infection, it is unlikely that they will contract it genitally too- although it's not impossible.
-Yes, I've seen that statistic, and it is certainly better than HSV-2 shedding rates! Dr. Handsfield has also made a comment on this site that he's never seen genital HSV-1 transmitted either genital-to-genital or genital-to-mouth, but obviously it is still technically possible. And, since it is possible, disclosure is the right thing to do, and that terrifies me much more than any of the rest of it :-(
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Avatar universal
My story as told last week in another forum...just if you need to know for future issues...., BTW.... (I hope I have helped)


In the fall of 2013 I was seeing a man who had had a history of cold sores on his mouth and apparently was "shedding" when I received oral sex from him.  As a result I promptly began to itch extremely bad and then one night I began to have extreme pain and when I went to the bathroom the next morning I had what looked like a mixture of blood & pus going on.  I rushed to my Dr. who did the herpes test and sure enough I tested positive for HSV1 in my genitals and the blood test proved that I had not had it long.  This was devastating to me...even though the Dr. explained to me that this would be only a "mild" case as HSV1 does not "prefer" that particular area and that I may not even have another break out and if I did they would be few and far between.  Still, I opted to begin taking Acyclovir twice daily to ensure no more outbreaks and less of a chance of spreading it to future partners.

To be clear on my treatments.... I have since that time been taking my meds as ordered daily and rarely missing a dose. I take Lysine pills and I apply Lysine ointment to the perineum during outbreaks and sometimes even weekly in an attempt to prevent them.  I am VERY compulsive about it because I want to do everything possible to not experience the pain that I did in 2013 and to keep anyone else from catching this horrible thing from me.  Each time I have an outbreak I call my Dr. and they call in more meds.

I  also did much research on many sites and did read that the particular type usually may present itself as a "paper cut" like tear on the vagina and not a blister after the initial outbreak.  With that being said I did get a  very small "paper like" tear on my perineum (they are/were not painful, they did not scab over, they might would/will sting a bit, no blood, no pus and only 1 at a time) a few times in the 1.5 years following my diagnosis.  I would call my dr and have her prescribe to me a larger dose of my suppression meds in order to treat said issue, without going to the Dr.  

With all of that being said:   In the last two months I have had 4 of these at separate times...I have almost been keeping one.  I called my dr. and again requested the scrip to get them taken care of which is basically just a higher dose of what I am already on and 3 times daily instead of twice daily and Lidocaine cream just in case I do get pain.  FINALLY, my nerves got the best of me and my anxiety grew because my meds are apparently just not working AND I had been told that my breakouts would either not come back or that they would do so VERY infrequently...which is devastating.  When I noticed this 4th one I immediately called my GYNO and made an appointment that day, telling the receptionist that I needed to see the Dr. because my suppression meds were not working.  

The Dr. came in and in tears I explained to her all of the precautions that I have been taking to prevent outbreaks (making it a point to point out that I had also been upping my dosage during the outbreaks) and I explained to her what kind of outbreaks I was having, explaining that they were very mild, almost without pain, only burning a little, no blood, no pus, no scabbing and no itching.  She Commencing with the pelvic exam she ask me to show her exactly where it was because she could not see it...so I did show her what I was talking about and once I did she then was able to notice the tear as well.  (It really is very small and inconspicuous).    The Dr.  then stated to me that I have been doing everything that she could ask of me in order to treat, suppress and not spread my HSV1 and that she does not believe these cuts to be an outbreak.  She believes it to only be tearing caused by rough sex, wiping with toilet paper, irritation...etc.... NOW, she did say that while she doesn't believe it to be herpes she would go ahead and take a swab and send it in.  Which she did.  However, she still was adamant that she would be shocked if it did indeed come back positive.  (this of course being based on how small it is and how much I am doing to counter act the virus).

I will get my results sometime in the next 4 - 5 days and I know that it may be herpes BUT I also know now that it may not be.  Which is how I came to the conclusion of my first paragraph in this reply.   Anyone's best bet is to just go to the gyno and get tested so they aren't going insane with worry and embarrassment.


**********UPDATE*********

I am in fact replying to myself....the test results on my "paper cut" like skin tear came back negative for HSV or any other STD.  It is just a small tear and apparently I am prone to them....Rough intercourse, wiping with rough toilet paper or a rag or towel could...among other things can cause this.



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Avatar universal
Also, the following are other websites that helped me AND a list of at home treatments for relief and to help you to have less outbreaks

https://www.aad.org/dermatology-a-to-z/diseases-and-treatments/e---h/herpes-simplex/who-gets-causes

http://www.herpes.com/hsv1-2.html


http://www.herpesonline.org/herpes-hotline/

1. Ice Packs

Ice helps relieve the pain and discomfort caused by herpes outbreaks.
1.Wrap an ice cube in a cloth or towel.
2.Place it on the affected area for about 10 minutes.
3.Do this several times a day for a few days until you see improvement.

2. Apple Cider Vinegar

Apple cider vinegar helps decrease the severity of herpes outbreaks due to its disinfectant, astringent, and anti-inflammatory properties.
•Dip a cotton ball in apple cider vinegar and dab it on the affected areas three or four times a day for two to three days. For best results, apply it as soon as you experience the initial tingling sensation. Be aware, it is likely to sting a little.
•You can also add one or two teaspoons of apple cider vinegar to one cup of water and drink it twice daily during flare-ups.

3. Hydrogen Peroxide

Being a disinfectant, hydrogen peroxide is a quite popular home remedy for herpes.
•Apply a little 3% hydrogen peroxide solution on the affected area using a cotton ball. Leave it on for a few minutes, and then wash it off. Repeat the process every few hours for a couple of days.
•You can also crush a lysine tablet, mix it with hydrogen peroxide, and then apply.
•For oral sores, use a mixture of one part hydrogen peroxide and three parts water as a mouthwash a few times daily for two or three days.

reduce the severity of herpes outbreaks. It also helps soothe the pain and inflammation. Peppermint oil, too, has been found to have a virucidal effect on the herpes virus.
•Drink peppermint tea at least two times a day.
•Alternatively, dip a cotton ball in water and then in peppermint oil. Apply it on the affected area a few times a day.







Coconut oil contains lauric acid, which converts into a monoglyceride called monolaurin that has antiviral and antibacterial effects. Moreover, the lauric acid and capric acid in coconut oil help kill the herpes virus.
•Drink 10 to 30 ounces, or about a quart, of organic virgin coconut oil daily.
•Alternatively, you can take lauric acid in supplement form after consulting your doctor.




Aloe vera is useful in dealing with herpes outbreaks, especially in the case of genital herpes as it helps heal the lesions. It will heal the sores and relieve pain and inflammation.
•Extract the gel from an aloe vera leaf and apply it on the affected area. Allow it to dry on its own and then wipe it off with a washcloth soaked in warm water. Do this several times daily for three to four days.
•You can also apply an aloe vera cream or extract topically.

In addition to following these remedies, eat more lysine-rich foods like dairy products, eggs, nuts (avoid peanuts though because they are rich in arginine), soybeans, mangos, and apricots to help prevent herpes outbreaks. You can take L-lysine supplements (500 to 1,000 mg daily) too.

Plus, eat more cruciferous vegetables, such as cabbage, kale, broccoli, and cauliflower, which are believed to inhibit growth of the herpes viruses.

If your sores and symptoms do not get better within seven to 10 days, or if you have a weakened immune system, consult your doctor.




Bathing with Epsom salt water is the best remedy to soothe the itching and pain in herpes. Add some Epsom salt in warm bathing water. Take a bath from it. This remedy makes the sores dry, thereby reducing itching.
You can also add some salt in the bath tub. Soak herpes infected area in the water. Allow it to dry and then, take a shower.




Preventive Measures

These are the preventive measures that will surely help in avoiding the attack of herpes virus.
◾Avoid sexual intercourse and kissing for some time until the sores are properly healed.
◾Drink a lot of water to maintain dehydration level in the body.
◾During pregnancy, seek regular and early prenatal care.
◾Practice proper hygiene, like hand washing, to avoid bacterial infection.
◾Use latex condoms during the sexual intercourse.
◾Engage in stress management or stress-relief activities, like yoga and meditation.
◾Stop sharing spoons, drinking glass, silverware, toothbrushes, and mouth guards with the infected person.
◾Maintain cleanliness and dryness in genital parts.
◾Avoid smoking
◾Take 7-8 hours of sleep, daily.
◾Take a proper diet, including healthy vegetables and fruits, like apples, cabbage, beetroot, papayas, carrots, mangoes, etc.
◾Avoid alcohol, sugar, and junk foods.
◾Avoid chocolates, seeds, peanuts, and cereals as they have a high amount of arginine.
◾Synthetic, silk, or nylon undergarments can worsen the symptoms of herpes infection in genital parts. So, always wear cotton clothes, which allow the air to circulate.

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Avatar universal
I bought this book and it did help some.... It has all kinds of information inside.

http://www.amazon.com/Good-News-About-Bad-Everything/dp/1572246189/ref=sr_1_1?s=books&ie=UTF8&qid=1438025776&sr=1-1&keywords=the+good+news+about+the+bad+news

Below are the links to the threads that I learned from when I was diagnosed:

http://www.medhelp.org/posts/Herpes/HSV-1-Support-Advice/show/2054273#post_9727987

http://www.medhelp.org/posts/Herpes/HSV-1-Support-Advice-Information/show/2054280#post_9727993





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Avatar universal
Was this your primary outbreak?
What kind of activity did you have before this outbreak?
Did you have cold sores before this?

There is this website called westoverheights.com, and a doctor named Terri Warren has a forum on this website. She would be able to answer all of your questions above, and she is very knowledgable. I would absolutely trust her advice and answers.

I believe she's stated before that genital hsv 1 only sheds about 3-5% a year, and it is highly unlikely to spread from one partner's genitals to another. Also, if a person has an oral hsv 1 infection, it is unlikely that they will contract it genitally too- although it's not impossible.
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