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Diagnosed with HSV1, ongoing symptoms?
Hi everyone,
I have somewhat of a long story to tell, so please bear with me! June 4th I had just started my period and felt an itch towards my rectum, gave it a scratch and thought nothing of it. The next day I was sore but thought "I probably just cut myself, no big deal". That was until I took a look at what was going on and saw a small open area clustered next to three blisters on the left side of my perirectal area. I tried to convince myself that it was from scratching as I had long nails at the time. I also noticed a swollen lymph node in my left groin. The first thing that pops up when you google swollen groin lymph node is: herpes. I thought that there was no way, I've been in a committed relationship for two years and neither of us has had even so much as a cold sore! ANd then I started to see that anyone can have the virus and have it lay dormant for a period of time or forever, that's how so many people don't know they have it. Anyway, I spent the next two weeks with EXTREMELY high anxiety. Like I couldn't function normally it was that bad. I saw one doctor who mentioned nothing about herpes, giving me an antibiotic cream to make sure the "cuts" didn't get infected. I tried to take comfort in this because she didn't even mention it, so it couldn't be that, right? Then a couple of days later after sobbing and telling my fiance what my worst fear was, I took off of work and made an appt with a gyn doctor who took one look and said "this is fungal in nature, buy over the counter clotrimazole and it'll be gone in a few days". I tried to take solace in this too, this was the second medical professional to NOT mention herpes which is good..? But something in me knew that this was being brushed off. Three days after that, June 16th, I saw a THIRD medical professional - a midwife - whom I told my story to and she asked about a history of herpes and then said she wanted to swab the open area for herpes although her suspicion wasn't high. I was anxiously awaiting the results, knowing that even if it was negative that it could be a false negative as the only remaining small open area was almost healed when it was swabbed. I got the call 6/22 that it was negative for HSV2 and positive for HSV1. She then started me on antivirals, which I'm sure were probably moot at that point as I started them two and a half weeks after symptoms started.
I've had my ups and downs coping with the news since then. My fiance is great, he's super supportive. We had a sit down meeting for Q&A with the midwife last Tuesday, 6/27, and decided to do a blood test for me. Again, confirmed HSV1 IgG was positive, HSV2 IgG was negative. My fiance is getting his blood test done tomorrow so that we know if he carries the virus.
Now that the background is explained, the reason for my post. Since the first week of the sores being there, I started with on and off burning on one side of my vulva. Then after the lesions healed, I began to get what I've seen described as "prodromal" symptoms. I get random twinges/zings/itches/stings/etc in the area around where the sores were as well as on the other side of that area where I haven't had lesions. These happen randomly throughout the day, every day. I elected to take suppressive therapy with 500mg of acyclovir once a day so I am on that. I constantly feel the need to feel and check that no more lesions have popped up because of these feelings. I also still have some irritation and itching on and off to my vulva and clitoris (mainly only the right side, makes me think nerve distribution?), where there were no lesions of any kind. When I look nothing looks out of the ordinary. And when the midwife had looked when I was experiencing the symptoms (back when she swabbed me) she saw nothing visible of concern. To make things complicated, I have a history of a form of vulvodynia, vestibulodynia (aka vulvar vestibulitis), for which my main symptoms were irritation and itching. I've had this under control for several years and went off of meds (cymbalta for nerve pain and estrogen cream) within the last year and have been pain free.
The midwife said to up my pill to twice a day if I experience symptoms. My question.. how do I know if I have symptoms if I ALWAYS have the prodromal feelings?! When I asked when those feelings would stop, she said that they would and that "it'll take time". My thoughts are that they are one of the following:
1. Left over nerve irritation as I didn't take any antivirals until two and a half weeks after symptoms started (I know some are skeptical of this as this isn't "typical" and there isn't much research on it)
2. The virus is constantly active and trying to form an outbreak (note that I DID have these symptoms even when I was initially on 1000mg of valtrex twice a day for ten days)
3. The virus is shedding constantly at this point
Any thoughts? Similar experiences? Also of mention, when I got my first outbreak, I had just finished my first pack of a new birth control they wanted to switch me to with different hormone concentrations related to developing a large ovarian cyst on my previous pill. I go to see the NP I see for my vulvodynia on 8/9 and hope she can shed light on some of this if these symptoms continue.
Thank you for reading!
I have somewhat of a long story to tell, so please bear with me! June 4th I had just started my period and felt an itch towards my rectum, gave it a scratch and thought nothing of it. The next day I was sore but thought "I probably just cut myself, no big deal". That was until I took a look at what was going on and saw a small open area clustered next to three blisters on the left side of my perirectal area. I tried to convince myself that it was from scratching as I had long nails at the time. I also noticed a swollen lymph node in my left groin. The first thing that pops up when you google swollen groin lymph node is: herpes. I thought that there was no way, I've been in a committed relationship for two years and neither of us has had even so much as a cold sore! ANd then I started to see that anyone can have the virus and have it lay dormant for a period of time or forever, that's how so many people don't know they have it. Anyway, I spent the next two weeks with EXTREMELY high anxiety. Like I couldn't function normally it was that bad. I saw one doctor who mentioned nothing about herpes, giving me an antibiotic cream to make sure the "cuts" didn't get infected. I tried to take comfort in this because she didn't even mention it, so it couldn't be that, right? Then a couple of days later after sobbing and telling my fiance what my worst fear was, I took off of work and made an appt with a gyn doctor who took one look and said "this is fungal in nature, buy over the counter clotrimazole and it'll be gone in a few days". I tried to take solace in this too, this was the second medical professional to NOT mention herpes which is good..? But something in me knew that this was being brushed off. Three days after that, June 16th, I saw a THIRD medical professional - a midwife - whom I told my story to and she asked about a history of herpes and then said she wanted to swab the open area for herpes although her suspicion wasn't high. I was anxiously awaiting the results, knowing that even if it was negative that it could be a false negative as the only remaining small open area was almost healed when it was swabbed. I got the call 6/22 that it was negative for HSV2 and positive for HSV1. She then started me on antivirals, which I'm sure were probably moot at that point as I started them two and a half weeks after symptoms started.
I've had my ups and downs coping with the news since then. My fiance is great, he's super supportive. We had a sit down meeting for Q&A with the midwife last Tuesday, 6/27, and decided to do a blood test for me. Again, confirmed HSV1 IgG was positive, HSV2 IgG was negative. My fiance is getting his blood test done tomorrow so that we know if he carries the virus.
Now that the background is explained, the reason for my post. Since the first week of the sores being there, I started with on and off burning on one side of my vulva. Then after the lesions healed, I began to get what I've seen described as "prodromal" symptoms. I get random twinges/zings/itches/stings/etc in the area around where the sores were as well as on the other side of that area where I haven't had lesions. These happen randomly throughout the day, every day. I elected to take suppressive therapy with 500mg of acyclovir once a day so I am on that. I constantly feel the need to feel and check that no more lesions have popped up because of these feelings. I also still have some irritation and itching on and off to my vulva and clitoris (mainly only the right side, makes me think nerve distribution?), where there were no lesions of any kind. When I look nothing looks out of the ordinary. And when the midwife had looked when I was experiencing the symptoms (back when she swabbed me) she saw nothing visible of concern. To make things complicated, I have a history of a form of vulvodynia, vestibulodynia (aka vulvar vestibulitis), for which my main symptoms were irritation and itching. I've had this under control for several years and went off of meds (cymbalta for nerve pain and estrogen cream) within the last year and have been pain free.
The midwife said to up my pill to twice a day if I experience symptoms. My question.. how do I know if I have symptoms if I ALWAYS have the prodromal feelings?! When I asked when those feelings would stop, she said that they would and that "it'll take time". My thoughts are that they are one of the following:
1. Left over nerve irritation as I didn't take any antivirals until two and a half weeks after symptoms started (I know some are skeptical of this as this isn't "typical" and there isn't much research on it)
2. The virus is constantly active and trying to form an outbreak (note that I DID have these symptoms even when I was initially on 1000mg of valtrex twice a day for ten days)
3. The virus is shedding constantly at this point
Any thoughts? Similar experiences? Also of mention, when I got my first outbreak, I had just finished my first pack of a new birth control they wanted to switch me to with different hormone concentrations related to developing a large ovarian cyst on my previous pill. I go to see the NP I see for my vulvodynia on 8/9 and hope she can shed light on some of this if these symptoms continue.
Thank you for reading!
Heres the deal for genital hsv1. It has much fewer outbreaks than hsv2 and sheds far less. Some of what you describe is normal body sensations magnified by a heightened awareness. You nay actually never get another outbreak.
After a primary (or any outbreak) there can be some lingering effects.
Now for more good news. Hsv1 is very rarely transmitted by intercourse. Its most always spread to the genitals by oral sex. Reasoning is it sheds very little from the genitals and usually isn't very potent when it does. All and all i would much preffer my partner to have genital hsv1 than oral.
After a primary (or any outbreak) there can be some lingering effects.
Now for more good news. Hsv1 is very rarely transmitted by intercourse. Its most always spread to the genitals by oral sex. Reasoning is it sheds very little from the genitals and usually isn't very potent when it does. All and all i would much preffer my partner to have genital hsv1 than oral.
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I know that statistically most people do have less outbreaks and it does shed less, but this is very individual and I've seen some people who post about getting relatively regular outbreaks with genital HSV1 . If I didn't have what feels to be frequent and daily prodromal feelings, I think I'd be fine. While unpleasant, I could deal with having an uncomfortable week or two here or there. But constantly not feeling normal and being uncomfortable is what's bothering me. I know I have a heightened awarensss right now and probably will for a while, but some of these feelings are definitely not normal. I have read that some people on valtrex experience more, and in some cases constant, prodromal symptoms and have switched to acyclovir instead with success. This is something I will look into if the symptoms continue.
You seem to think that these are lingering effects of the outbreak, is that correct?
You seem to think that these are lingering effects of the outbreak, is that correct?
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You are reading content posted in the Herpes Community
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.
