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Cmc

I'm stuck in herpes limbo land. please help :(

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Cmc

Hi all!

I am not really one for forums of any kind, but I would sincerely appreciate advise from anyone. I have put this post on the new diagnosis page, but really this 'thing' has been up in the air for over 3 years... here is my story:

Just over three years ago, I had a genital lump that was visually diagnosed as Herpes. I had gotten sick beforehand with what I presumed was tonsillitis ( I used to get it regularly). Around a week after the infection, the lump appeared. I was given anti virals, but did not get swabbed. It was one large red lump ( I think it was slightly ulcerated but I cant remember).

After this primary outbreak it never came back and I became more and more frustrated that it hadn't been 'confirmed' by testing. After struggling for months to find a doctor who would do a blood test, I managed to find a place that tested for HSV2 only. That blood test came back negative - I was told it could have been HSV1 or herpes Zoster (??) or absolutely nothing at all. There seems to be no one that will give me a HSV1 test to check.

In term of recurrences. I once got a tiny red dot that was confirmed as nothing by doctors. Another time, I got a pang on a patch of skin when I was in shower. It vanished by the next day so I couldn't even get any sort of confirmation as to what it was. I sometimes get sharp pains and zingy/pins and needles feelings on my lower back, legs, groin area, feet and even hands. I am not sure if that could be anything related to it. ( but I have been told by a doctor that it wasn't).

I am now in a sort of limbo where I do not know what measures to take in the future. Should I disclose this information to future partners? what 'risks' do I pose in terms of transmission? ( I was comforted by the figures on transmission for HSV1 but still confused). Internet research is a minefield! I read articles and journals telling me I don't need to do a thing ( 90 percent of people have it etc..), then other forums that say disclosure is fundamental and 'I got hsv1 from genital transmission' stories that make me anxious all over again. Finally, I still don't have that 100% guarantee I have anything at all.

I have had a very 'just forget about it' response from doctors, but I am finding it hard to drop it and I was wondering if a) someone has/is going through the same thing and B) ADVICE ON WHAT I SHOULD DO!?

Thanks again x

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Acesheart
Hi all!

I am not really one for forums of any kind, but I would sincerely appreciate advise from anyone. I have put this post on the new diagnosis page, but really this 'thing' has been up in the air for over 3 years... here is my story:

Just over three years ago, I had a genital lump that was visually diagnosed as Herpes. I had gotten sick beforehand with what I presumed was tonsillitis ( I used to get it regularly). Around a week after the infection, the lump appeared. I was given anti virals, but did not get swabbed. It was one large red lump ( I think it was slightly ulcerated but I cant remember).

After this primary outbreak it never came back and I became more and more frustrated that it hadn't been 'confirmed' by testing. After struggling for months to find a doctor who would do a blood test, I managed to find a place that tested for HSV2 only. That blood test came back negative - I was told it could have been HSV1 or herpes Zoster (??) or absolutely nothing at all. There seems to be no one that will give me a HSV1 test to check.

In term of recurrences. I once got a tiny red dot that was confirmed as nothing by doctors. Another time, I got a pang on a patch of skin when I was in shower. It vanished by the next day so I couldn't even get any sort of confirmation as to what it was. I sometimes get sharp pains and zingy/pins and needles feelings on my lower back, legs, groin area, feet and even hands. I am not sure if that could be anything related to it. ( but I have been told by a doctor that it wasn't).

I am now in a sort of limbo where I do not know what measures to take in the future. Should I disclose this information to future partners? what 'risks' do I pose in terms of transmission? ( I was comforted by the figures on transmission for HSV1 but still confused). Internet research is a minefield! I read articles and journals telling me I don't need to do a thing ( 90 percent of people have it etc..), then other forums that say disclosure is fundamental and 'I got hsv1 from genital transmission' stories that make me anxious all over again. Finally, I still don't have that 100% guarantee I have anything at all.

I have had a very 'just forget about it' response from doctors, but I am finding it hard to drop it and I was wondering if a) someone has/is going through the same thing and B) ADVICE ON WHAT I SHOULD DO!?

Thanks again x

Hey Cmc, welcome honey. If you've never gotten confirmed as having herpes why would you still think it is? Most doctor's only give a herpes test to determine if you have it, not the type test needed to know if it's h1 or h2 . Visual diagnosis is the least accurate way to get diagnosed. If you just ask your doctor or another obgyn to just perform a blood test for herpes they can do so. If your first TEST said negative for h2, that would mean if you retest positive for herpes it can only be h1 from oral sex. Being a female it's harder to Pass this herpes h1 genitally to genital. I'd say if you know you have it confirmed by proper testing then it's up to you to disclose. If it has never been confirmed you cannot disclose what you don't have. Did a partner you had relations with get facial cold sores? I'm just wondering if you considered the doctor's office testing for any other diseases? Was it just a Standard STD panel test, or just BLOOD taken for h2?

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Cmc

Hi,

Thanks very much for getting back to me.

Your answer makes alot of sense - it is just hard to disconnect from it when I am so unsure of what I did have. It's never came back like before, any other bump or red spot I started freaking out about got a swift 'that's not herpes' response. No one else will do a bloodtest because they will only test on an active sore.

I was able to get a blood test (after searching long and hard for a place that would) because I wanted to find out if I had type 2/1 or at all. The STI clinic I went to that offered free Herpes specific testing only did it for HSV2 because of the nature of type 1, and the fact that pretty much everyone would test positive for it. I had everything tested for as well, and everything else was A-ok.

I feel really fortunate to not have constant reacurrances but this grey area is really killing my confidence and making me feel like I'm 'lying' to people. Even though I know alot of people have it and have NO idea they are possibly shedding etc...

My ex boyfriend never got cold sores, and I have been with 3 other guys casually so I have no idea - I definately do not recall any active coldsores on their face.

Maybe i am just overthinking it? I don't know. I am just really confused!

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Acesheart
Hi,

Thanks very much for getting back to me.

Your answer makes alot of sense - it is just hard to disconnect from it when I am so unsure of what I did have. It's never came back like before, any other bump or red spot I started freaking out about got a swift 'that's not herpes' response. No one else will do a bloodtest because they will only test on an active sore.

I was able to get a blood test (after searching long and hard for a place that would) because I wanted to find out if I had type 2/1 or at all. The STI clinic I went to that offered free Herpes specific testing only did it for HSV2 because of the nature of type 1, and the fact that pretty much everyone would test positive for it. I had everything tested for as well, and everything else was A-ok.

I feel really fortunate to not have constant reacurrances but this grey area is really killing my confidence and making me feel like I'm 'lying' to people. Even though I know alot of people have it and have NO idea they are possibly shedding etc...

My ex boyfriend never got cold sores, and I have been with 3 other guys casually so I have no idea - I definately do not recall any active coldsores on their face.

Maybe i am just overthinking it? I don't know. I am just really confused!

Hey Cmc, you are just trying to act responsible and that's okay. But if you have those test and something should occur you have your sexual health status in your hands. Don't be afraid to ask a potential partner if they know their sexual health status. Please don't stress this since 80% already has it and just don't know. You have done the test now relax and don't be afraid to protect yourself. The chance of you passing, if it should happen to be h1 is very minimal. Take care. Hugs Aces xo

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Cmc

...and the strange tingling leg thing is just nothing? the doctor said it wasn't predromes, but I have read some people's stories that say it has been.

I will try and just forget about it, I think I might need to stop reading things online and getting myself worked up. Thank you so much for your help so far :)

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Acesheart
...and the strange tingling leg thing is just nothing? the doctor said it wasn't predromes, but I have read some people's stories that say it has been.

I will try and just forget about it, I think I might need to stop reading things online and getting myself worked up. Thank you so much for your help so far :)

That could be stress, anxieties or worrying needlessly. My tingles were nerves damage but from previous epidurals. This was seen by my neurologists and quickly tended to. Your female and if it's h1 in the genitals, the transmission rates are slim. Take a warm bath, pour glass wine, turn on your favorite Nora Jones tunes or Adele and relax. You exercised good judgement getting tested since many don't, you now have a baseline should something ever occur. Hugs Aces xo

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sickornotsick

The word limbo really resonates with me at the moment. If you still need to do an igg blood test and your doctor's won't test for hsv1, you can find labs that run tests for both types.

http://www.healthcheckusa.com/std-tests.aspx

You might want to talk to Terri Warren at Westover Heights clinic about a western blot blood test.

The best thing to do is get a swab of a lesion though which you can do at any clinic.

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