Sunday, June 22, 2008

And the plot thickens...

When I first got diagnosed, Planned Parenthood simply told me I had genital herpes. They didn't tell me much else, other than "use condoms." (I had been, and look where it got me.)

I was extremely confused and scared and knew this was never going to go away. In a few short seconds my entire life had changed and my faith in love, and good prevailing over evil, and virtually everything else was gone. I assumed my fate as old maid was signed, sealed and delivered. Basically, I prayed for sweet death.

Then I went home and cried, screamed, hid away for a while.

When I emerged from bedroom exile, which included a few additional doctors visits where again I was told a whole lot of nothing, I could barely look my friends in the eye. I felt like somehow I was a liar. Hiding my dirty secret, not worthy of being around fine, upstanding people anymore. I felt I wasn't "clean," no matter how much I showered.

One of my Planned Parenthood doctors had rolled her eyes and told me to "stay off the internet." So for a while I did that, pretending none of this had happened. But I could only pretend for so long. I needed to know more about what this thing was, and what it really meant for me. I needed to defy the eye roller, brace myself, and head back into the treacherous territory that is online herpes information. It includes a lot of bad jokes, misinformation, icky pictures, and finger pointing, especially at a few select unfortunate celebrities.

Luckily I quickly found HHP, the Original Herpes Homepage.
(I related to the visual of a racoon, hiding out in the darkness, scavenging for tidbits when no one is looking.) Its message boards are full of the most unbelievably patient and knowledgeable people, answering each other's questions, keeping tabs on one another, and providing helpful article links and info, along with insight after insight to get us through the dark moments and celebrate our victories. People who could relate to one another and didn't hesitate to discuss the most TMI kinda health problems. I immediately felt comforted and like less of a freak. It was like a place of refuge for me.

But most importantly, I became informed. I realized that this truly is just a virus, and an incredibly common one at that. Lots of nice, normal people get it.

And I learned that while gential herpes is traditionally thought of as being type 2, it can also be HSV type 1.

That's right; if someone gets cold sores on their mouth, the virus can be present on their mouth at any time, with or without symptoms. And if they go down on you, and you are in the minority of the population that have somehow never previously been exposed to the "cold sore" virus, their HSV1 can infect you down below.

Having this type of genital herpes is usually pretty different from having type 2. And it's also different from having type 1 on your mouth. While the person with type 1 on his mouth will probably continue to go on to transmit the virus to others (in both sexual and non-sexual scenarios), the chance that those he has infected genitally will go on to transmit to others is very slim, because the virus doesn't prefer to live down there and it doesn't shed from or recur in that area very often, if at all .

So, months and months after my primary outbreak, months of complete and utter stress also caused by outside factors going on at the time, I never had any signs of a second outbreak. I was wondering if I was one of the lucky ones who just don't get that many outbreaks.

But it slowly dawned on me that this could be a type 1 infection, and not a type 2, since I hadn't been given a type specific test when the OB was happening. (baaaad doctors.) I didn't want to let myself hope too much, because I couldn't deal with the letdown that was inevitable. What were the chances I would get a break when fate just seemed to have it in for me lately? So I put it off for a while, and went on a long trip. When I came back I finally went in for it a blood test, I was gently treated like I was delusional and repeatedly told that genital herpes is type 2. One doctor told me that having type 1 genitally is "1 in 10,000." Which I knew was wrong, since I had come across tons of people on the boards who have GHSV1. I told him that he might want to update that statistic and check out some new information on herpes. He grudgingly agreed to give me a blood test, but only at a different PP clinic, because the one I was at "frowned upon" blood tests for herpes. WTF? A sexual health and family planning clinic FROWNING ON GIVING HERPES TESTING???

I think maybe he only agreed so he could see my positive type 2 diagnosis and say "told ya so."

But after a couple of weeks with no phone call from the clinic, I absentmindedly picked up a letter I had thrown into the bills pile a couple of days earlier, and recognized the address as being from the PP clinic where I had gotten the blood test. I tore it open and braced myself.

And saw that I had only tested positive for herpes type 1.

Now. I had come to terms with thinking I had GHSV2, knowing that the transmission risk to others was minimal with precautions, and I was pretty much at peace with it. But learning that it was type 1 and that this would most likely affect my life a lot less than I originally had been lead to believe was like a huge weight off my shoulders. I literally felt like I had been born again, and taught a huge lesson that I was now free to learn from rather than just suffer from.

I know I still have a responsibility to discuss this with future partners, as do those who have gotten a cold sore orally.

Now, I know it is my duty and yours, if you're reading this, to educate one another about what is the fastest growing STD in the country, GHSV1.

If you have a history of cold sores, don't give someone oral sex until you discuss the risks and they get a blood test. Chances are your partner will be in the majority of the population that already has HSV1 antibodies and the risk to them will be virtually zero. But there's always a chance that, like me, they are in the minority and are susceptible to getting your cold sores in a place where the sun don't shine, even if it will probably just happen once.

If you are someone who has never been tested for HSV and are recieving oral sex now or in the future - and hopefully, you are! - get a blood test ASAP. Find out if you are at risk for getting GHSV1.

Planned Parenthood and most OB-GYNS do NOT include HSV in their standard panel STD testing. The reason they give is that most of the population will test positive for type 1 any way, and if you have type 2 but are asymptomatic, you really don't want to know, do you? But these reasons are outdated, archaic, foolish, and a health risk to you and to society. Specifically request to GET TESTED FOR HSV and insist that your partners do. Because when it comes to something that is chronic, prevention is priceless.

If you have type 1 genitally, you could still get type 2 on top of it. So find out about your partner's status and take the proper precautions.

I'm not sure exactly what my next move will be, but along with continuing to try to erase the GHSV stigma of both types in general, I want to somehow start a movement to get people specifically educated about the existence, prevalence, and risk of getting GHSV1. Planned Parenthood needs to send its doctors the memo; genital herpes is not only type 2. Everyone who comes in with a primary oubreak needs to have a TYPE SPECIFIC test from the get go, so they can know how to proceed.

Here are some more articles about GHSV, which HHP links to:

Let's spread the word... not the virus.


auntiejessi said...

Every time I read this story, I get more pissed. This shouldn't be happening in 2008.

I'm so proud that you pushed it, and got some answers. :)

Anonymous said...

I found out about two years ago that I had herpes. I was not told anything else about it either.I cried for weeks and then I accepted it. Im so glad I came across your story because now I can demand a test to let me know which type I have.

Anonymous said...

I just found out I have type 1... In your research have you found how long it takes to heal? I'm on a week now with meds and it isn't getting much better...

Anonymous said...

my girlfriend went to Planned Parenthood to get tested for STDs. they tested her blood, gave her birth control and never called her back so she thought she was "clean". now i have HSV-2. thanks Planned Parenthood. PS why would you take blood samples, hand out birth control and not test for genital herpes?! it's almost as if they want people to spread it. aren't doctors supposed to be smart?

Anonymous said...

HerpeSelect is a type-specific blood test and is the gold standard for detecting HSV-1 and HSV-2. Go to and buy direct, go to Labcorp, and get your results in 2 days. It's the way to go. You're right. Doctors are not always going to see the value in testing but it's your sexual health that's at stake. And the health of those who you may unknowingly infect.

Anonymous said...

Although, I agree that herpes testing should be included in regular checkups, I see why they aren't. I've read THOUSANDS of posts of people w/ false positives IgG tests as well as discrepancy after discrepancy (negative test-positive test-negative test-positive test IgGs). I've seen indeterminate Western Blots as well as the same negative-positive-negative roller coaster ride with them. The ONLY way to know for sure is w/ a culture/PCR swab. Blood tests are FAR from 100%. Don't get me wrong; they can be helpful, but they also cause unnecessary grief and despair.

Anonymous said...

I was diagnosed with ghsv1 just last wednesday, and I have never cried so much in my life. I have been with the same adorable amazing guy for two years...And I wake up one day with herpes?! I was so shocked and devastated. He apparently has had only one cold sore before..back in ninth grade.He is 30 now. What are the odds? Anyways, many other online forums have been all DOOM AND GLOOM about herpes. I was so scared and discouraged. I am still up and down, but your blogs have given me such comfort and hope. I appreciate your positive and honest attitude SO much. Thank you!!!

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Anonymous said...

My GF had Type one and without my knowledge gave me GHSV1 as I think.... I am dumbfounded plannedparenthood would not test for herpes the Dr just shrugged her shoulders and said I don't know it could be herpes. I replied so the test will not show if I have HSV1 or HSV2? She shrugged again and said we can not tell. It is 2013 and I am scared and yes I appreciate the free test but in a few days if all negative I still will not even know if I have herpes. Regardless your not alone and in my case I feel dirty and after going to get answers im left with distrust and just questions. thing is my father had HSV1 before I was born regular mouth cold sores so logically would I 100% be born with it I never had cold sores and after my Ex gave me oral with an open cold sore I had a very small outbreak only one sore on my penis right under the tip. I immediately started anti viral meds at 800mg 4 times daily its healing now but I have 0 pain not really any discomfort and a swollen node in my pelvic area. My Girl left me and we were engaged to be merried..... I feel dirty because I knew the cold sore was open and the fact I infected I have been clean and I don't cheat or sleep around she on the otherhand has been with 100s of men(don't judge I love her) I am alone been crying because I know she was rubbing the open sore on it and told me "I am going to make sure you never can leave me". After all of that I'm alone and scared for her she had sex with me twice before that raw feeling was seen and not just felt I had no idea the outbreak came out of nowhere.... I need to know if its type 1 I cry and pray everynight..... Lesson being I knew the risk but my Ex thought it could never happen or really wanted this.... she wanted me to make sure I gave it back to her and I refused because she is already at risk because she was exposed vaginal with the open sore the day of my outbreak. If your having the same issue then just know a women with a cold sore can 100% give you HSV1 in the genitals. If it is type one how long till I should expect for a average healing time?

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anonymous lilly said...

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Anonymous said...

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rosealbert said...

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Patricia Shiels said...

I am from Usa i was diagnosed with HSV TPYE 2 while I was pregnant .I cried for days. I was devasted and looking up info on it just made it worse. I don't know how long I have had it for. I don't know if my partner has it or if he was the one who transferred it to me. I had one outbreak while pregnant. That's how I found out I had the virus. I started taking and antiviral and took it everyday twice a day to make sure I wasn't able to get an outbreak. I debated whether I wanted to have my daughter natural or c- section. I was terrified. Stress wasn't helping my situation. I ended up having her natural and she is a beautiful healthy 2 month old baby girl. I try not to think about me having the virus because of my depression i couldn't. so I have to focus more on how to get rid of HSV TPYE 2 because i don't want anything to happen to my daughter and thank God she was born fine. i visited different hospital but they gave me list of drugs like acyclovir, Zovirax, and (valacyclovir)Valtrex without without get rid of my virus. one day i decide to surf the internet for cure so i saw a testimony total cure of HERPES by Dr. EHIAGWINA with NATURAL HERBS so i pick up the email Address: and contact he an hour latar he reply explain to me how am going to get the herbs and how am going to use it to cure my viruse i give a try believe me it work perfectly i used it within seven days now am tested negative i'm free from the viruse thanks Doc.

john randy said...

I am a 64-year-old lady. My HERPES SIMPLEX VIRUS 2 (HSV) disease appeared at the age of 62, with no hope of a cure from the hospital i looked further for an alternative treatments, a friend of mine told me about Larry Herbal Medication in Lagos, Nigeria who sell herbal treatments for diseases including Hepatitis B disease, I contacted the herbal clinic via their website and purchased the Hsv herbal remedy. I received the herbal remedy through DHL couriers within 8 days and i immediately commenced usage as prescribed, i used the herbal remedy for about two weeks, my condition has greatly improved, all my symptoms including Abdominal pain, Nausea and vomiting, Loss of appetite, I am HSV free! contact Health Herbal Clinic via their email or What-sap via +2348163807836.
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Helen Zeinab said...

Suffering from herpes virus is a terrible experience because i was told it has no cure,the good news am happily sharing now is the great power behind herbal medication i got diagnosed of herpes virus in the year 2014 and in 2016 i started having outbreaks and it became more terrible for me to bare,One blissful morning i came across a blog comment posted by a man call Thompson on how he was cured of herpes simplex virus type 2 with the herbal medication of (Dr. Omo. Promise)who is a specialist in curing all kinds of std virus and chronic disease with herbs,i immediately copied out his contact mail that was ( and i explain all my problems to him, he was very honest with me and also kept his promise to get me cured with his herbs if i follow the prescriptions he gives along with the medication which i did exactly as he prescribed, to God be the glory My herpes simplex virus i have been suffering from got cured in just 2 weeks after completing the dose of his herbal cure. once again thank you so much sir for restoring my health back and most especially my skin. Please for any who has health problem of any kind should mail him on the email provided above mail me directly for more info,give him a chance and see what he can do.