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Questions for Terri Warren re genital HSV1
Three years ago I received oral sex from a man with oral HSV-1. Within days I had genital itching all around my crotch -- within two weeks genital pain so searing I felt as though I were being electrocuted and could hardly walk. A gynecologist said I was riddled with genital ulcers and he suspected genital herpes. He took a culture swab and blood test. Two weeks after I spent days in bed with high fever unable to walk, the doctor said he was right, I had genital herpes. The good news: I had HSV-1. He gave me a prescription for Valtrex twice daily. I did not miss a day. The pain continued, and included nerve pain radiating down the backs of my legs. For the last three years I have felt as though I am getting a chemical peel in my vagina. Every single day for three years my vagina has burned all day long. I spend 16 hours a day feeling on fire.
My first doctor seemed to think I was exaggerating and needed a psychiatrist. My new gynecologist appears less informed, gave me another blood test, said I did not have HSV-1 and suggested that maybe that virus "didn't take" because it was not in its preferred location. She suggested I drop the Valtrex, go cold turkey. Here I am, three months later, in vaginal pain daily, skeptical because everything I have ever read about herpes said the diagnosis is permanent and Wikipedia says HSV-1 does not always show up on blood tests for genital herpes. Please help! I want to know: if it's possible I no longer have genital HSV-1, if genital HSV-1 can be killed or hide, whether my symptoms seem typical and if not, what type of infection I may have, whether it's possible to transmit HSV-1, how likely, whether partners should be informed -- Dr. Hanfield said No! Please advise of any medications to alleviate my vaginal pain and suggest a Washington, DC herpes doctor.Thank you.
My first doctor seemed to think I was exaggerating and needed a psychiatrist. My new gynecologist appears less informed, gave me another blood test, said I did not have HSV-1 and suggested that maybe that virus "didn't take" because it was not in its preferred location. She suggested I drop the Valtrex, go cold turkey. Here I am, three months later, in vaginal pain daily, skeptical because everything I have ever read about herpes said the diagnosis is permanent and Wikipedia says HSV-1 does not always show up on blood tests for genital herpes. Please help! I want to know: if it's possible I no longer have genital HSV-1, if genital HSV-1 can be killed or hide, whether my symptoms seem typical and if not, what type of infection I may have, whether it's possible to transmit HSV-1, how likely, whether partners should be informed -- Dr. Hanfield said No! Please advise of any medications to alleviate my vaginal pain and suggest a Washington, DC herpes doctor.Thank you.
MEDICAL PROFESSIONAL
No, I believe you still have HSV 1. The blood tests do miss the infection one out of 10 times, so I would rely on your initial symptoms combined with your positive HSV 1swab test result. Have other sources of trouble been ruled out, such as yeast or trich or bacterial vaginal infections of other kinds? Have you ever taken antibiotics for this, have any been suggested? Have you tried any other types of medicine besides Valtrex? Has anyone discussed the medicine Neurontin with you, it is for nerve pain. Have you tried anything like Advil for the inflammation?
I'm not aware of a physician in Washington DC that specializes in herpes, sorry. Dr. Jeff Gilbert in New York City is certainly good, but I know that isn't close by. There is an excellent doctor named Larry STanberry at Columbia, but I believe he's in the pediatric department now, you might see if you can reach him and he might have a recommendation.
Terri
I'm not aware of a physician in Washington DC that specializes in herpes, sorry. Dr. Jeff Gilbert in New York City is certainly good, but I know that isn't close by. There is an excellent doctor named Larry STanberry at Columbia, but I believe he's in the pediatric department now, you might see if you can reach him and he might have a recommendation.
Terri
MEDICAL PROFESSIONAL
Sorry to be a bit long in answering, I am in Mexico and have unreliable internet access.
We have not statistics on the odds of you transmitting, but the odds of transmitting HSV 2 are 4% per year, and it is likely 1/4 that number. if you are on medicine, likely 1/8 of that number. The antibiotics I asked about would be for bacterial vaginosis, not herpes. Neurontin is the medicine I think they are talking about. It does have some side effects, and I use it rarely. But if you have severe nerve pain, it might be worth trying for you.
You don't need to fly to Portland, I'm not sure I can help with you with nerve pain, and I'm very surprised you have all this with the HSV 1 infection.
Your sex life and emotional life are only ruined if you decide that is the case. So many people have HSV 1, both orally and genitally. It isn't the infection, it is how you deal with it that shapes your life. If you find a partner who has HSV 1, in either location, you don't need to worry about transmission to a new place, we believe so far.
Terri
We have not statistics on the odds of you transmitting, but the odds of transmitting HSV 2 are 4% per year, and it is likely 1/4 that number. if you are on medicine, likely 1/8 of that number. The antibiotics I asked about would be for bacterial vaginosis, not herpes. Neurontin is the medicine I think they are talking about. It does have some side effects, and I use it rarely. But if you have severe nerve pain, it might be worth trying for you.
You don't need to fly to Portland, I'm not sure I can help with you with nerve pain, and I'm very surprised you have all this with the HSV 1 infection.
Your sex life and emotional life are only ruined if you decide that is the case. So many people have HSV 1, both orally and genitally. It isn't the infection, it is how you deal with it that shapes your life. If you find a partner who has HSV 1, in either location, you don't need to worry about transmission to a new place, we believe so far.
Terri
To answer your questions: I was tested for a yeast infection and HPV told no, neither was the problem. Another "N" medication was suggested to me for nerve pain. I have not tried it yet, as I am not confident in my doctor and try to avoid adding medication to my life in general. Are there any side effects I should be concerned about?
Valtrex is the only medication I have taken for this. Antibiotics have never been suggested, nor have I read about them for use with herpes. Could you please elaborate?
Thank you for the doctor suggestions. I will reach out and am all ears if you have further thoughts. I am not kidding when I say I have contemplated flying to Portland and paying for three solid hours of your time.
To all medical experts: It is maddening to me that I should have to inform the doctor what to be testing me for! THAT'S HOW I GOT THIS PROBLEM IN THE FIRST PLACE!!! AND NOW MY EMOTIONAL, LOVE AND SEX LIVES ARE RUINED.
Valtrex is the only medication I have taken for this. Antibiotics have never been suggested, nor have I read about them for use with herpes. Could you please elaborate?
Thank you for the doctor suggestions. I will reach out and am all ears if you have further thoughts. I am not kidding when I say I have contemplated flying to Portland and paying for three solid hours of your time.
To all medical experts: It is maddening to me that I should have to inform the doctor what to be testing me for! THAT'S HOW I GOT THIS PROBLEM IN THE FIRST PLACE!!! AND NOW MY EMOTIONAL, LOVE AND SEX LIVES ARE RUINED.
Thank you. So much. Beyond the searing pain, the emotional devastation, the loss of sacredness and sanctity in a sex life, this condition is just so maddening -- mostly because so many so-called medical experts are not up-to-date on research. I have a 15-minute window to try and educate someone with a medical degree on my pain, only to realize later that I am better read on this topic in many ways and can find basic information on these boards and Wikipedia! How maddening. I will try ALL of your suggestions. Thank you.
Now, could you please, please, please let me know clearly and succinctly: what are the odds of transmission, how often I likely shed, whether you recommend Valtrex twice daily and whether I am doomed to condom-only sex for the rest of my life, even with a potential future husband. This information should be clear, but it is not.
Please also let me know whether you advise another blood test and if so, which kind(s).
Thank you so much, Ms. Warren. I learned so much from your book and to date you are the only person I truly trust to be as informed and thoughtful as possible. I am so grateful.
Now, could you please, please, please let me know clearly and succinctly: what are the odds of transmission, how often I likely shed, whether you recommend Valtrex twice daily and whether I am doomed to condom-only sex for the rest of my life, even with a potential future husband. This information should be clear, but it is not.
Please also let me know whether you advise another blood test and if so, which kind(s).
Thank you so much, Ms. Warren. I learned so much from your book and to date you are the only person I truly trust to be as informed and thoughtful as possible. I am so grateful.
You are reading content posted in the Herpes Forum
Herpes spreads by oral, vaginal and anal sex.
Herpes sores blister, then burst, scab and heal.
STIs are the most common cause of genital sores.
Millions of people are diagnosed with STDs in the U.S. each year.
STDs can't be transmitted by casual contact, like hugging or touching.
Syphilis is an STD that is transmitted by oral, genital and anal sex.
