Stressed and Scared

[Imananon200102]

Hello Terri you can call me Twin 1 and my sister twin 2. For the longest time we could remember our vaginas has ached and burned this especially happened after or before our periods. My vagina often aches after masturbation for 1-3 days or it can switch into burning for a week or so. For twin 2 she can relate to this sometimes with sex with her boyfriend. All together the aching and burning can happen for a few days/ week or so. This has also been the case a week or so before one of us gets our period or after. We always just put a heatpad/ Boric Acid and it would go away. That or just leaving it be itll go away. This pain has always been located internally of our labia majora. For twin 2 sometimes external pain of the same area too, We always equated this to our Ph balances being thrown off or something. Now heres the problem since October 2022 til now I (Twin 1) have been experiencing this pain along with frequent urination. The burning and aching pain has been going on for almost 6 months now & sometimes the feeling go away for a few hours or maybe a day then returns. I went to my doctor about this in the beginning of January for the Uti symptoms which i tested negative for. I took the next step and asked to see a gynecologist and my doctor called one. They both insisted of telling me it was genital herpes despite me telling her I was 100% a virgin and never received oral sex. I called my sister (Twin 2) crying & she came to draw her blood with me.
Herpes Labcorp results: HSV-1 igg 55.4, Hsv-2 1.55 supplemental test negative (Twin 1)
HSV-1 igg 46, Hsv-2 <0.91 (Twin 2)
The doctor tells us we have herpes and I (Twin 1) has genital herpes. I bring attention to my supplemental test, she didnt realize. She tells me I dont have it and I should go on with my life. Im hyperfocusing on my vagina & she doesnt know whats wrong. The gynecologist wouldnt have the same patience as her. We were shocked because we never had symptoms or even a coldsore.

[Imananon200102]

My symptoms now (Twin 1)..
My vagina is burning on and off it will now stop for a few hours or a day then return and ive been peeing way less frequent now
Also off topic we both have experienced achey/burning legs along with the burning/achey vagina but it happens without vaginal pain too sometimes not often. While Ive been experiencing this (Twin 1) it has happened probably 1-3 times.

This has left us very spooked we both have some questions
Twin 1
Can I trust these test results and say I do not have genital herpes?

What does an outbreak feel like? If this was genital herpes in theory wouldnt it have progressed if left untreated for several months?

What does this sound like Ive had this sensation in the same place now for months on and off I am peeing less now and for a few days I used vagisil cream and it helped out

My mom believes we may have vulvadoynia ive looked up the symptoms its the same as mine but its hard to diagnose

If we both have never had any cold sores and tested positive for Hsv-1 is it safe to assume this is oral herpes? And could we pass this genitally?

Twin 2
If her boyfriend performs oral on her does that mean she can spread the herpes to her vagina if she has it? Does she have to do anything different?
We wanted to take the WB test because we have seen so much false positive stories and how low my sister tested along with her supplemental gives us hope.

Also if I tested negative for genital herpes how could my sister have it and I experienced the exact same symptoms?

Should we look into endometritis and vulvadoynia?

WB test questions

How do we store the western blot kit?
Does it go bad do we need to reorder?
Currently we have the ice packs in the fridge and the rest of the kit in their package in my bedroom is that ok?

sexual history:
Twin 1-
Complete virgin no oral sex just masturbation
Only kissed 2 people in my life
Twin 2-
Kissed two people
Boyfriend and her lost virginity together

Thank you for hearing us out.

[Terri Warren]

Can I trust these test results and say I do not have genital herpes?
There is excellent agreement between people who get a negative supplemental test from LabCorp and get a subsequent negative on the western blot. So yes, I think you can trust these negative results.

What does an outbreak feel like? If this was genital herpes in theory wouldnt it have progressed if left untreated for several months?
Outbreaks feel like sores in the genital or anal area, that start as water blisters, break open, make an ulceration, crust over or fill in and heal. I don’t see that in your description at all

What does this sound like Ive had this sensation in the same place now for months on and off I am peeing less now and for a few days I used vagisil cream and it helped out
Honestly, I have no idea what is going on with either of you but I would be a lot of money it isn’t herpes.

My mom believes we may have vulvadoynia ive looked up the symptoms its the same as mine but its hard to diagnose
That is true, but that would be my best guess as well. There are specific Obgyn folks who specialize in this – I think you should try to track on down.

If we both have never had any cold sores and tested positive for Hsv-1 is it safe to assume this is oral herpes? And could we pass this genitally?
We cannot know where your HSV 1 infection is if you’ve received oral sex in your lifetime, but statistically, I would say oral is more likely and if you give oral sex to someone, you could give them genital HSV 1

Twin 2
If her boyfriend performs oral on her does that mean she can spread the herpes to her vagina if she has it? Does she have to do anything different?
If she has it orally, it is extremely unlikely that she would then acquire it genitally.

We wanted to take the WB test because we have seen so much false positive stories and how low my sister tested along with her supplemental gives us hope.
You could do that to get the greatest accuracy

Also if I tested negative for genital herpes how could my sister have it and I experienced the exact same symptoms?
Have you and your sister had exactly the same sexual experiences? If not, then we can’t apply something to both of you

Should we look into endometritis and vulvadoynia?
vulvodynia, yes

WB test questions

How do we store the western blot kit?
The freezer pack goes in the freezer and the rest can be stored at room temp until used, then it should be shipped

Does it go bad do we need to reorder?
After six months, it will expire

Currently we have the ice packs in the fridge and the rest of the kit in their package in my bedroom is that ok?
Yes

sexual history:
Twin 1-
Complete virgin no oral sex just masturbation
Only kissed 2 people in my life
Twin 2-
Kissed two people
Boyfriend and her lost virginity together

I cannot imagine that either of you have HSV 2. Twin 1 can assume her HSV 1 is oral
Terri

Thank you for hearing us out.

[Author]

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