First, you NEED to get tested. And not a blood test, they need to test the actual sores to tell if it's herpes or not. The blood tests are not all that accurate. But take the anti-virals in case they help dull the pain.
Because you've never had sexual contact with anyone, the chances of it being genital herpes is rare. It can lay dormant in many people for years, but in order to get it, you need to have contact with it (especially if its not around your mouth.)
Last, I understand how devastating this diagnosis is. But, after getting diagnosed with HSV1 (the type that generally on your mouth) on my genitals 2 years ago, I've realized how little it has affected my dating life, my romantic life, and my life in general. I've been with men and women, F(22) for context.
In all honesty, it really just weeded out the assholes. If you don't have an active outbreak and use protection (and are on suppressants) you have about 1% chance of passing it to someone else. It's also harder for a girl to spread it to men, based on studies. I've only had 1 outbreak since my initial diagnosis after a period of prolonged stress. I understand that it's very stigmatized, but a diagnosis is not the end of the world. Good people are understanding about it. If you do not feel comfortable disclosing, it's not the right person. But in my experience, most people are fine with it after a few questions and with protection.
If it is herpes, I hope this can put you a bit at ease. It felt like my entire life ended when I was diagnosed, but after living with it, it really hasn't affected my life and I found a few friends that have the same diagnosis who helped me through.
Edit: If you need some help or support, please DM me.
Good to see people like you talking about your diagnosis, I feel like I've seen more people being open about it recently and that it helps with the stigma !
I never tested positive but I'm irrationnally terrified of catching it (I'm just a hypocondriac) so it helps to hear from people in your situation :-)
As someone who was diagnosed with Bechets, the ulcers really looked like Herpes and I too at that point in time had never had sexual contact. Swab test helped eliminate Herpes from the list of possible causes
Wow…. I WISH that would happen to me! I just got a swab that came back positive for hsv1 on my genitals but it didn’t look like typical herpes. I DO get ulcers/cankor sores in my mouth fairly often
Sorry! But I don’t think hsv1 thrives down there so hopefully it won’t be a big deal. I think I’d rather have hsv than bechets. My friend can’t eat a ton of foods, can’t drink, can’t even wear contact lenses…and fwiw I do also have hsv1 but mild so far. I have only ever had one cold sore on my lip in my life and the virus was generous enough to pop up in the beginning of covid so I just wore a mask
Yeah I am still reeling, I took the news really hard. Had a terrible OB but hope it will stay away as I am generally healthy and chill, stress wise. I’m sorry about your friend :-( I didn’t think about other issues. Glad you have had an easy-ish time at least!
I took it hard when I found out from a terrible OB too. Sorry you’re going through this. You’re not alone. It is essentially a skin blemish with an unfortunate stigma . Sending love!
I gave myself genital herpes when I was 12 (HSV 1) during an oral breakout after spitting on a tampon applicator in order to get the damned thing in, talk about an awkward conversation to have with your doctor. Anywho, HSV1 usually causes oral herpes while HSV2 usually leads to genital, that being said, all it really cares about is mucus membranes, so it is more than possible to get it from simply coming into contact with infected saliva or another bodily fluid (your own or somebody else's) and using the bathroom.
Oh wow. I’ve always been really paranoid about spreading it so even as a kid I’d put a bandaid on the sore when washing face or showering so that nothing splashed into eyes or genitals.
I'm so sorry to hear that you are not doing well. I hope you will be better soon. Take care of yourself mentally and emotionally also.
Did the doctors swab your ulcers? If not, you need to insist on getting a swab test. That's the only way to know for sure if it's herpes or mrsa or something else. It will also let you know if it's type 1 or 2.
It is very very very unlikely to get herpes without sexual contact, but it can happen with skin contact. Also it is possible to infect one self in other areas of the body. That means that if you get the virus orally and then touch your genital area straight after, it can be transmitted there. But that is only possible when you first get the virus when your body have not been exposed before. Have you had cold sores recently? You might need to check inside your mouth and troat also.
Have you kissed someone recently? Have you been stressed or sick with a cold or something before this happened to you? If you had the virus from childhood that might cause a outbreak.
Blisters/ulcers on the vulva can be triggered by some illnesses, so if ypu were sick recently/had a fever it could be related to that.
Edit: Though still see a doctor and have them do a Swab and a rec for blood testing for antibodies, so if it indeed isn't herpes, you can rule that out
This - I got vulvar ulcers when I had COVID (🙃) and they were also initially misdiagnosed as herpes until a blood test ruled it out. Bodies can do weird things when you're sick.
Me too! Exact same scenario. Did 4 blood tests over the course of 1.5 years afterwards bc I was paranoid and each time I had like zero levels of either strain.
It’s the strangest thing. Glad to hear I’m not the only one experiencing this phenomenon
hugs! ♥️ it was so weird, and also so alienating because I thought I was the only one! it didn't help that my OBGYN didn't believe me. this sub was a huge help feeling less alone/crazy and for finding tips to treat the pain. i hope yours doesn't recur! bodies truly are so weird sometimes!
Not a doctor but : Have you been tested for Epstein Barr virus? With this virus but also others, sometimes young women, usually not sexually active, can develop Lipschutz ulcers. Medical staff can sometime confuse it with HPV.
Regardless once you're recovered, if you experience vulvar or Vaginal lesions again, consult with a specialist as this could also be Behcet's disease.
Came here to say this too. My doc was insisting I had herpes but turned out to be Lipschutz ulcers and I had no trace of herpes on the swabs. Also had no sexual contact for many months.
This is most likely not herpes. I posted an explanation on someone else’s comment but I’ll give you the gist of what I said: Herpes is only spread through skin to skin contact, meaning that your genitals would have had to come in contact with someone who was shedding the hsv virus at that time. Given that you’re a virgin, this seems pretty unlikely. When you go to the clinic, ask for your sores to get swabbed for hsv, then you’ll know for sure. If those doctors didn’t swab you and just diagnosed you by looking then that’s pretty disappointing. Sending love❤️
Have you possibly kissed anyone who has active herpes? I'm not sure of the specifics of how herpes is spread. I'd head over to r/AskDocs and give them every detail you have, and ask about how it could've been spread to you [assuming the diagnosis is correct].
I’ve only kissed two people and neither had active cold sores or anything like that, doctor suggested I could have been infected at any point in my life so am very unsure.
I'm sorry I can't help more. I don't know why they wouldn't have gone over every possible infection cause or in depth discussion about what this means and treatment, but I hope someone who knows can!
Does your mom have herpes? If she had an active outbreak of herpes and gave birth vaginally you could catch it. Definitely get the ulcers tested though.
HSV - herpes simplex virus - does usually have ulcers especially on the first outbreak. They’re pretty awful looking, with a crater like center. And they’re painful. And typically accompanied with flue like symptoms. Cause, virus. Your body is reacting and fighting it off. It seems odd to me though, that a dr would not swab and get you an accurate diagnosis.
There is HSV 1 and 2. HSV 1 is typically transmitted orally and “lives” in the oral/mouth area, sores on your lips. HSV 2 is typically transmitted via genitals. And “lives” in the genital region. This can be inside the vagina, on your cervix, outside the vagina, even on your buttocks or hip are.
Antivirals are the correct treatment. IF it is indeed HSV. It is highly contagious especially if you have active sores. It can be re-occurring. Not everyone has reoccurrences. You can have HSV and only have an initial outbreak and never have another reoccurrence. If you do have reoccurrence, you can take antivirals. If you don’t, you don’t have to take antivirals.
I’m not a doctor but I believe some people are just born with herpes dormant and then have random flare ups. So this might just be your first flare up. Some people might even go their whole life without a flare up.
But double check this information with your doctor.
Not quite. Babies are not born with herpes but sometimes contract it by parents and family members kissing them. This usually causes oral herpes (hsv1). Whether it’s HSV 1 or 2, both can stay dormant in the system. This is why herpes is so common (2/3 of the world population) because most people love their whole lives with hsv and not even knowing it. Herpes I spread through skin to skin contact, so this gal would have had to have contact with someone who had a flare up and touched her genitals. If she’s saying she has never had any sexual contact whatsoever, it’s probably not herpes.
Ah gotcha. Thanks for the clarification!
My doctor said herpes can be passed in the womb so that’s what I considered “born” with it lol
I didn’t realize that was only oral herpes.
It's not passed in the womb. Genital herpes (HSV-2) can be passed to the baby during vaginal birth, which is why they test for herpes during pregnancy and might opt for a C-section if a person is positive, because the baby getting herpes (in the eye for example) can be dangerous in certain cases.
It's probably really unlikely but I wonder if you can also get genital herpes as a baby like this? I think it's probably not OP's case tho and they should definitely get tested for other things.
Oral herpes (HSV-1) can be passed from kissing or drinking out of the same bottle, or sharing eating utensils, which is why almost everyone has it. Not everyone has frequent outbreaks (cold sores) so they might not know.
Also fyi you can get "genital" herpes orally or "oral" herpes genitally through oral sex. I think if people realised that like 80% of people have HSV-1 and not having sex with them because you might get herpes would rule out most of your dating pool, people would stigmatise HSV-2 a lot less. In the end it's not that big of a deal.
Please don't suggest a minor send images of their genitalia on the internet. I understand you're trying to help but that is a crime and dangerous in general.
Edit; I'm not sure why but this commenter blocked me 😭
I think the HSV (herpes) subs are fairly active and may be able to provide you context for how others have experienced their diagnoses. I’m so sorry you’re having so much frustration with your doctors
r/herpes
r/hsvpositive
I had the same thing happen to me when I was around 17-19 years old. I’m now 34 and had several more episodes like the one you are having. Also never had any sort of sexual experience before my first episode. Also was told I had herpes on visual examination and turned out to have negative swabs. For me, I would get frequent canker sores in my mouth and then genitals whenever I got extremely sick and my immune system tanked. This happened every couple of months - sometimes every few weeks. I’ve seen probably over a dozen specialists to rule out every illness they could think of that might cause the canker sores. It wasn’t until I was in my mid 20s that a rheumatologist was trying to diagnose me with either behcets or something called PFAPA since both are ridiculously rare.
They ended up diagnosing me with PFAPA even though it’s an illness that usually only effects very young children, not adults. Frequent canker sores, fevers, swollen lymph nodes. It sucks. The only thing that would help me get over an episode faster would be prednisone, but for some amazing reason taking prednisone would trigger an episode to occur in a shorter amount of time. 🤷♀️I also used to take colchicine daily to try and prevent episodes from occurring, which worked decently.
Since PFAPA is an illness kids typically grow out of in their teen years I’ve been slowly growing out of it, which thank goodness cause that shit hurts.
All this to say - don’t let a doctor freak you out by diagnosing you without taking any actual tests. Human bodies are weird and there are a ton of things that can be going on.
You may have behcets. It’s what I have and I’ve gotten those same genital ulcers since I was 13 years old (way before I was sexually active).
I suggest you find a rheumatologist if it’s an autoimmune disease. Good luck :(
theres this podcast I listen to called symptomatic had some one have herpes like symptoms
I tried to link it but it wont its on itunes its episode 8 with August who is a trans man meaning she has female parts from birth. He explained he had herpes symptoms but never had sex . may not be the same disease, or cause (allergies) but I think it would be very calming to listen to
its called symptomatic with host lauren bright pacheco
You may want to look at Lipschutz ulcers. I had flu symptoms and then 3-4 days later these huge ulcers appeared at the entrance to my vagina. They were so painful, and had a thick black scab over them. They are also called ‘kissing ulcers’ because they often appear directly opposite each other. Mine took about 3 weeks to fully heal.
First, you NEED to get tested. And not a blood test, they need to test the actual sores to tell if it's herpes or not. The blood tests are not all that accurate. But take the anti-virals in case they help dull the pain. Because you've never had sexual contact with anyone, the chances of it being genital herpes is rare. It can lay dormant in many people for years, but in order to get it, you need to have contact with it (especially if its not around your mouth.) Last, I understand how devastating this diagnosis is. But, after getting diagnosed with HSV1 (the type that generally on your mouth) on my genitals 2 years ago, I've realized how little it has affected my dating life, my romantic life, and my life in general. I've been with men and women, F(22) for context. In all honesty, it really just weeded out the assholes. If you don't have an active outbreak and use protection (and are on suppressants) you have about 1% chance of passing it to someone else. It's also harder for a girl to spread it to men, based on studies. I've only had 1 outbreak since my initial diagnosis after a period of prolonged stress. I understand that it's very stigmatized, but a diagnosis is not the end of the world. Good people are understanding about it. If you do not feel comfortable disclosing, it's not the right person. But in my experience, most people are fine with it after a few questions and with protection. If it is herpes, I hope this can put you a bit at ease. It felt like my entire life ended when I was diagnosed, but after living with it, it really hasn't affected my life and I found a few friends that have the same diagnosis who helped me through. Edit: If you need some help or support, please DM me.
Good to see people like you talking about your diagnosis, I feel like I've seen more people being open about it recently and that it helps with the stigma ! I never tested positive but I'm irrationnally terrified of catching it (I'm just a hypocondriac) so it helps to hear from people in your situation :-)
May I Pm you about this? So many questions, just got diagnosed with GHSV-1 and still confused
Of course! I don’t get on here too much, but please message me :)
Ask about bechets disease. The black spots in the middle make me think that's a possibility. Often confused with herpes
As someone who was diagnosed with Bechets, the ulcers really looked like Herpes and I too at that point in time had never had sexual contact. Swab test helped eliminate Herpes from the list of possible causes
I came here to say behcets as well- i had the same experience
Came here to say this. I have a friend that was diagnosed with herpes only to find out later it was bechets
Wow…. I WISH that would happen to me! I just got a swab that came back positive for hsv1 on my genitals but it didn’t look like typical herpes. I DO get ulcers/cankor sores in my mouth fairly often
Sorry! But I don’t think hsv1 thrives down there so hopefully it won’t be a big deal. I think I’d rather have hsv than bechets. My friend can’t eat a ton of foods, can’t drink, can’t even wear contact lenses…and fwiw I do also have hsv1 but mild so far. I have only ever had one cold sore on my lip in my life and the virus was generous enough to pop up in the beginning of covid so I just wore a mask
Yeah I am still reeling, I took the news really hard. Had a terrible OB but hope it will stay away as I am generally healthy and chill, stress wise. I’m sorry about your friend :-( I didn’t think about other issues. Glad you have had an easy-ish time at least!
I took it hard when I found out from a terrible OB too. Sorry you’re going through this. You’re not alone. It is essentially a skin blemish with an unfortunate stigma . Sending love!
Thank you for the encouragement! I know that I will only continue to feel better about this as time goes on. Hang in there!
I gave myself genital herpes when I was 12 (HSV 1) during an oral breakout after spitting on a tampon applicator in order to get the damned thing in, talk about an awkward conversation to have with your doctor. Anywho, HSV1 usually causes oral herpes while HSV2 usually leads to genital, that being said, all it really cares about is mucus membranes, so it is more than possible to get it from simply coming into contact with infected saliva or another bodily fluid (your own or somebody else's) and using the bathroom.
Oh wow. I’ve always been really paranoid about spreading it so even as a kid I’d put a bandaid on the sore when washing face or showering so that nothing splashed into eyes or genitals.
It’s unlikely, but sure as hell not impossible
Yeah, most likely not, but never know. I hadn’t had an outbreak since Jan 2007 and just last week got a small one. Stress of December. Lol
I'm so sorry to hear that you are not doing well. I hope you will be better soon. Take care of yourself mentally and emotionally also. Did the doctors swab your ulcers? If not, you need to insist on getting a swab test. That's the only way to know for sure if it's herpes or mrsa or something else. It will also let you know if it's type 1 or 2. It is very very very unlikely to get herpes without sexual contact, but it can happen with skin contact. Also it is possible to infect one self in other areas of the body. That means that if you get the virus orally and then touch your genital area straight after, it can be transmitted there. But that is only possible when you first get the virus when your body have not been exposed before. Have you had cold sores recently? You might need to check inside your mouth and troat also. Have you kissed someone recently? Have you been stressed or sick with a cold or something before this happened to you? If you had the virus from childhood that might cause a outbreak.
Blisters/ulcers on the vulva can be triggered by some illnesses, so if ypu were sick recently/had a fever it could be related to that. Edit: Though still see a doctor and have them do a Swab and a rec for blood testing for antibodies, so if it indeed isn't herpes, you can rule that out
This - I got vulvar ulcers when I had COVID (🙃) and they were also initially misdiagnosed as herpes until a blood test ruled it out. Bodies can do weird things when you're sick.
Me too! Exact same scenario. Did 4 blood tests over the course of 1.5 years afterwards bc I was paranoid and each time I had like zero levels of either strain. It’s the strangest thing. Glad to hear I’m not the only one experiencing this phenomenon
hugs! ♥️ it was so weird, and also so alienating because I thought I was the only one! it didn't help that my OBGYN didn't believe me. this sub was a huge help feeling less alone/crazy and for finding tips to treat the pain. i hope yours doesn't recur! bodies truly are so weird sometimes!
Have you hears of HS? Hidradentits supervia or something like that? Look into it and maybe mention it to the Dr in case it's that
I have hs, we generally have large boils that need to be drained. Very different in appearance than herpes
Same, but to someone who isn't familiar, it may look similar for the early stages of hs
Not a doctor but : Have you been tested for Epstein Barr virus? With this virus but also others, sometimes young women, usually not sexually active, can develop Lipschutz ulcers. Medical staff can sometime confuse it with HPV. Regardless once you're recovered, if you experience vulvar or Vaginal lesions again, consult with a specialist as this could also be Behcet's disease.
Came here to say this too. My doc was insisting I had herpes but turned out to be Lipschutz ulcers and I had no trace of herpes on the swabs. Also had no sexual contact for many months.
This is most likely not herpes. I posted an explanation on someone else’s comment but I’ll give you the gist of what I said: Herpes is only spread through skin to skin contact, meaning that your genitals would have had to come in contact with someone who was shedding the hsv virus at that time. Given that you’re a virgin, this seems pretty unlikely. When you go to the clinic, ask for your sores to get swabbed for hsv, then you’ll know for sure. If those doctors didn’t swab you and just diagnosed you by looking then that’s pretty disappointing. Sending love❤️
Have you possibly kissed anyone who has active herpes? I'm not sure of the specifics of how herpes is spread. I'd head over to r/AskDocs and give them every detail you have, and ask about how it could've been spread to you [assuming the diagnosis is correct].
I’ve only kissed two people and neither had active cold sores or anything like that, doctor suggested I could have been infected at any point in my life so am very unsure.
I'm sorry I can't help more. I don't know why they wouldn't have gone over every possible infection cause or in depth discussion about what this means and treatment, but I hope someone who knows can!
No worries, thank you for the help : D
To be frank, they would have had to kiss you kitty for any sort of viral ulcers to show up down there. If it’s herpes, I’d honestly be surprised.
Does your mom have herpes? If she had an active outbreak of herpes and gave birth vaginally you could catch it. Definitely get the ulcers tested though.
HSV - herpes simplex virus - does usually have ulcers especially on the first outbreak. They’re pretty awful looking, with a crater like center. And they’re painful. And typically accompanied with flue like symptoms. Cause, virus. Your body is reacting and fighting it off. It seems odd to me though, that a dr would not swab and get you an accurate diagnosis. There is HSV 1 and 2. HSV 1 is typically transmitted orally and “lives” in the oral/mouth area, sores on your lips. HSV 2 is typically transmitted via genitals. And “lives” in the genital region. This can be inside the vagina, on your cervix, outside the vagina, even on your buttocks or hip are. Antivirals are the correct treatment. IF it is indeed HSV. It is highly contagious especially if you have active sores. It can be re-occurring. Not everyone has reoccurrences. You can have HSV and only have an initial outbreak and never have another reoccurrence. If you do have reoccurrence, you can take antivirals. If you don’t, you don’t have to take antivirals.
I’m not a doctor but I believe some people are just born with herpes dormant and then have random flare ups. So this might just be your first flare up. Some people might even go their whole life without a flare up. But double check this information with your doctor.
Not quite. Babies are not born with herpes but sometimes contract it by parents and family members kissing them. This usually causes oral herpes (hsv1). Whether it’s HSV 1 or 2, both can stay dormant in the system. This is why herpes is so common (2/3 of the world population) because most people love their whole lives with hsv and not even knowing it. Herpes I spread through skin to skin contact, so this gal would have had to have contact with someone who had a flare up and touched her genitals. If she’s saying she has never had any sexual contact whatsoever, it’s probably not herpes.
Ah gotcha. Thanks for the clarification! My doctor said herpes can be passed in the womb so that’s what I considered “born” with it lol I didn’t realize that was only oral herpes.
It's not passed in the womb. Genital herpes (HSV-2) can be passed to the baby during vaginal birth, which is why they test for herpes during pregnancy and might opt for a C-section if a person is positive, because the baby getting herpes (in the eye for example) can be dangerous in certain cases. It's probably really unlikely but I wonder if you can also get genital herpes as a baby like this? I think it's probably not OP's case tho and they should definitely get tested for other things. Oral herpes (HSV-1) can be passed from kissing or drinking out of the same bottle, or sharing eating utensils, which is why almost everyone has it. Not everyone has frequent outbreaks (cold sores) so they might not know. Also fyi you can get "genital" herpes orally or "oral" herpes genitally through oral sex. I think if people realised that like 80% of people have HSV-1 and not having sex with them because you might get herpes would rule out most of your dating pool, people would stigmatise HSV-2 a lot less. In the end it's not that big of a deal.
Transmission from mom to baby during birth is so rare, so I think passing hsv to a baby’s genitals during birth would be nearly impossible.
Wow that doctor should go back to med school. It’s so scary how the health professionals that you should trust can spread misinformation like this.
[удалено]
Please don't suggest a minor send images of their genitalia on the internet. I understand you're trying to help but that is a crime and dangerous in general. Edit; I'm not sure why but this commenter blocked me 😭
I obviously didn't realize the minor status or I wouldn't have suggested it
Do the sores sting when you pee?
I think the HSV (herpes) subs are fairly active and may be able to provide you context for how others have experienced their diagnoses. I’m so sorry you’re having so much frustration with your doctors r/herpes r/hsvpositive
Herpes can also be self transmitted if you have it orally, or passed from a partner via oral sex or saliva on a finger.
I had the same thing happen to me when I was around 17-19 years old. I’m now 34 and had several more episodes like the one you are having. Also never had any sort of sexual experience before my first episode. Also was told I had herpes on visual examination and turned out to have negative swabs. For me, I would get frequent canker sores in my mouth and then genitals whenever I got extremely sick and my immune system tanked. This happened every couple of months - sometimes every few weeks. I’ve seen probably over a dozen specialists to rule out every illness they could think of that might cause the canker sores. It wasn’t until I was in my mid 20s that a rheumatologist was trying to diagnose me with either behcets or something called PFAPA since both are ridiculously rare. They ended up diagnosing me with PFAPA even though it’s an illness that usually only effects very young children, not adults. Frequent canker sores, fevers, swollen lymph nodes. It sucks. The only thing that would help me get over an episode faster would be prednisone, but for some amazing reason taking prednisone would trigger an episode to occur in a shorter amount of time. 🤷♀️I also used to take colchicine daily to try and prevent episodes from occurring, which worked decently. Since PFAPA is an illness kids typically grow out of in their teen years I’ve been slowly growing out of it, which thank goodness cause that shit hurts. All this to say - don’t let a doctor freak you out by diagnosing you without taking any actual tests. Human bodies are weird and there are a ton of things that can be going on.
So what im hearing is its not herpes and a doctor freaked you out for nothing
You may have behcets. It’s what I have and I’ve gotten those same genital ulcers since I was 13 years old (way before I was sexually active). I suggest you find a rheumatologist if it’s an autoimmune disease. Good luck :(
theres this podcast I listen to called symptomatic had some one have herpes like symptoms I tried to link it but it wont its on itunes its episode 8 with August who is a trans man meaning she has female parts from birth. He explained he had herpes symptoms but never had sex . may not be the same disease, or cause (allergies) but I think it would be very calming to listen to its called symptomatic with host lauren bright pacheco
other people already mentioned it bechets disease
You may want to look at Lipschutz ulcers. I had flu symptoms and then 3-4 days later these huge ulcers appeared at the entrance to my vagina. They were so painful, and had a thick black scab over them. They are also called ‘kissing ulcers’ because they often appear directly opposite each other. Mine took about 3 weeks to fully heal.