Diagnosed with GHSV1: SO MANY QUESTIONS

[vihsv1]

Hi all,

I was diagnosed with GHSV1 on October 14th of this year. Although it is not totally relevant as to how I got it, I feel like my story is worth sharing as I feel some people may have thoughts on it. 

Anyhow, I was with a guy who didn’t present with symptoms (that I knew of) and we had had intercourse three times (twice with a condom, once with one that was broken). See, this is where things get interesting. I am convinced that this guy intentionally RIPPED the condom. He claims that he was “adjusting” it and that it “may have” broke at that time. I was reminded of all of this when I found the broken piece of condom in my sheets the next day. And my heart sank. 

Within two days of this encounter, I experienced very runny discharge, and noticed it smelled a bit different... so I thought oh I might just have a yeast infection, and went about the normal procedures of dealing with that, however... things did not get better. 

NOTE: I also had a strange canker sore type thing on the top of my tongue at this same time. It was a small painful, almost swollen tastebud type sore. Also, I have a nipple piercing that was also VERY AGGRIVATED around this time as well. 

I took a look down yonder with a mirror and noticed a small chancre-like lesion on my outer labia. It was itchy, but not sore. I saw a doctor on October 12th and he took a look, claimed to not think it was HSV. He took swabs that WERE NOT SUBMITTED TO PROTOCOL (which I found out later) and left me with no information. That evening, I was itchy around the area of my clitoris, where the mobs pubis meets the fleshier bits of the vulva, and noticed some red bumps developing. Of course, I panicked. 

This whole time I had been experiencing watery, sometimes blood streaked discharge. I’m lead to believe that I have sores internally, however, of the three doctors I’ve seen since symptoms began, not one has looked at my cervix. 

Note: A month prior to all of this, I had a clear STI screening. (I now know that HSV is not part of that) 

On Sunday, October 14th I returned to the clinic and saw another doctor who took one look and said “looks like herpes”, took swabs, and put me on Valtrex 500mg 2x/day for five days. It seemed to really help and the sores all disappeared within a weekl, including the soreness in my nipple. HOWEVER, this only seemed to last a few days. I returned to the clinic and saw another doctor to discuss my results. Let’s just mention that this doctor was ANCIENT; I call him Dr. Dinosaur. He insisted that the lab results were wrong, that it MUST be GHSV2, and insisted that I be on daily suppressant Valtrex, starting with 1/day until I had an outbreak, then 2/day, and so forth. I questioned his recommendations based on what I had read about HSV1; and the fact that he completely disregarded the facts of the lab results. I didn’t take the suppressants at first, in hopes of getting a second opinion.

Almost exactly a week later, the discharge started up again, I got a splitting headache, felt the “tingle/itch” but wanted to convince myself it was all in my head, yet sure enough, two little bumps came up. I immediately filled the rx for the Valtrex that dr. Dinosaur had given me and did the whole 2x/day of Valtrex 500mg for another five days. Everything seemed to subside quite quickly. 

After the five days, I decided to go ahead and try the 1/day idea, and for the first few days everything seemed fine, but within a week, the tingle returned, no visible bumps, but I got the signature splitting headache, and the abnormal discharge returned as well.  I returned to the clinic, and saw a younger doctor and grilled him with questions. He disagreed with Dr. Dinosaur about the daily suppressant but couldn’t really answer the questions I had. 

Throughout all of this, since the initial canker sore on my tongue, I’ve had a pretty constant “tingle” sensation in my tongue that I cannot explain. I have never had signs of a cold sore or sores in my mouth other than the swollen tastebud at the beginning. I am PARANOID that I’ve got HSV 1 in both my mouth and on my genitals as well as my nipple. But no one has been able to answer me. 

I have since been taking 2/day Valtrex 500mg (with a short period of taking 3/day) as I was planning to meet a new guy I’ve been seeing (and hope to be seeing for a long time, and YES I have disclosed my situation to him and he has been nothing but wonderful and supportive about it) and am now going back to 2/day and hoping that I can wean myself off of the antivirals and be okay. 

MY QUESTIONS TO YOU ALL ARE: 

-has anyone had experience with abnormal discharge from herpes? What did it entail and what were you told about how to deal with it.

- it’s been a month of on/off symptoms. Is this all just an initial outbreak or am I getting slammed with recurrent outbreaks? 

- how will I know if the internal sores have healed and how long do I have to wait to have sex again? (I am terrified of intercourse now, for fear of passing this on to this lovely man, and for the fear of sex being a trigger for outbreaks) 

- has anyone experienced the tingling of the tongue? Advice? 

- are there better options than Valtrex? Is it possible that I am resistant to the antiviral right off the bat? 

I appreciate anyone with answers-to /experiences like mine. This forum has been a saving grace for me so far but it is SO HARD to have questions answered. 

Ive been trying to manage my stress and diet and supplements to cater to this virus, yet I feel it’s kicking my ass. I’m almost convinced that the rest of my life will be one constant outbreak and that my sex life is doomed forever.

 

lots of love and appreciation, 

H. 

[Michgirl73]

I got a bacterial infection after I got diagnosed. I hear that it happens to a lot of woman after getting it. I was on suppressive therapy for 3 months I just stopped taking mine. I have Ghsv1 which is supposed to be milder one. Most ppl that have OHsv1 don’t even take medication most of the time and that’s where it’s supposed to be. Anyhow.. I’m on supplements currently.. which seems to be doing good. I have limited myself on drinking alcohol as it supposed to cause outbreaks. I’m looking into ozone therapy which helps keep your body immune system healthy to fight this thing. I had to wait 4 weeks before I had sex.. to make sure it was healed and even then I probably should of wait another 2 weeks. I don’t have issues with oral.. so I’m unsure about that. In my opinion all suppressive therapy takes a huge toll on your body. 

[Covergirl360]

So I was diagnosed back in May and for months I had the constant prodrome symptoms without visible sores and was on and off acyclovir. I had my second outbreak in November and since then the constant prodrome symptoms have stopped. I feel a tingle every now and then but I think I’m just hypersensitive to any sensation that I get in my groin. I also have HSV 1 genitally. I think the first year it takes our bodies time to adjust and fight the virus since I’ve heard similar stories. I also switched to valcyclovir which in the beginning of taking I was getting those prodrome feelings but like I said it’s not as constant anymore 

[blurneworder]

 

Hi all,

I was diagnosed with GHSV1 on October 14th of this year. Although it is not totally relevant as to how I got it, I feel like my story is worth sharing as I feel some people may have thoughts on it. 

Anyhow, I was with a guy who didn’t present with symptoms (that I knew of) and we had had intercourse three times (twice with a condom, once with one that was broken). See, this is where things get interesting. I am convinced that this guy intentionally RIPPED the condom. He claims that he was “adjusting” it and that it “may have” broke at that time. I was reminded of all of this when I found the broken piece of condom in my sheets the next day. And my heart sank. 

Within two days of this encounter, I experienced very runny discharge, and noticed it smelled a bit different... so I thought oh I might just have a yeast infection, and went about the normal procedures of dealing with that, however... things did not get better. 

NOTE: I also had a strange canker sore type thing on the top of my tongue at this same time. It was a small painful, almost swollen tastebud type sore. Also, I have a nipple piercing that was also VERY AGGRIVATED around this time as well. 

I took a look down yonder with a mirror and noticed a small chancre-like lesion on my outer labia. It was itchy, but not sore. I saw a doctor on October 12th and he took a look, claimed to not think it was HSV. He took swabs that WERE NOT SUBMITTED TO PROTOCOL (which I found out later) and left me with no information. That evening, I was itchy around the area of my clitoris, where the mobs pubis meets the fleshier bits of the vulva, and noticed some red bumps developing. Of course, I panicked. 

This whole time I had been experiencing watery, sometimes blood streaked discharge. I’m lead to believe that I have sores internally, however, of the three doctors I’ve seen since symptoms began, not one has looked at my cervix. 

Note: A month prior to all of this, I had a clear STI screening. (I now know that HSV is not part of that) 

On Sunday, October 14th I returned to the clinic and saw another doctor who took one look and said “looks like herpes”, took swabs, and put me on Valtrex 500mg 2x/day for five days. It seemed to really help and the sores all disappeared within a weekl, including the soreness in my nipple. HOWEVER, this only seemed to last a few days. I returned to the clinic and saw another doctor to discuss my results. Let’s just mention that this doctor was ANCIENT; I call him Dr. Dinosaur. He insisted that the lab results were wrong, that it MUST be GHSV2, and insisted that I be on daily suppressant Valtrex, starting with 1/day until I had an outbreak, then 2/day, and so forth. I questioned his recommendations based on what I had read about HSV1; and the fact that he completely disregarded the facts of the lab results. I didn’t take the suppressants at first, in hopes of getting a second opinion.

Almost exactly a week later, the discharge started up again, I got a splitting headache, felt the “tingle/itch” but wanted to convince myself it was all in my head, yet sure enough, two little bumps came up. I immediately filled the rx for the Valtrex that dr. Dinosaur had given me and did the whole 2x/day of Valtrex 500mg for another five days. Everything seemed to subside quite quickly. 

After the five days, I decided to go ahead and try the 1/day idea, and for the first few days everything seemed fine, but within a week, the tingle returned, no visible bumps, but I got the signature splitting headache, and the abnormal discharge returned as well.  I returned to the clinic, and saw a younger doctor and grilled him with questions. He disagreed with Dr. Dinosaur about the daily suppressant but couldn’t really answer the questions I had. 

Throughout all of this, since the initial canker sore on my tongue, I’ve had a pretty constant “tingle” sensation in my tongue that I cannot explain. I have never had signs of a cold sore or sores in my mouth other than the swollen tastebud at the beginning. I am PARANOID that I’ve got HSV 1 in both my mouth and on my genitals as well as my nipple. But no one has been able to answer me. 

I have since been taking 2/day Valtrex 500mg (with a short period of taking 3/day) as I was planning to meet a new guy I’ve been seeing (and hope to be seeing for a long time, and YES I have disclosed my situation to him and he has been nothing but wonderful and supportive about it) and am now going back to 2/day and hoping that I can wean myself off of the antivirals and be okay. 

MY QUESTIONS TO YOU ALL ARE: 

-has anyone had experience with abnormal discharge from herpes? What did it entail and what were you told about how to deal with it.

- it’s been a month of on/off symptoms. Is this all just an initial outbreak or am I getting slammed with recurrent outbreaks? 

- how will I know if the internal sores have healed and how long do I have to wait to have sex again? (I am terrified of intercourse now, for fear of passing this on to this lovely man, and for the fear of sex being a trigger for outbreaks) 

- has anyone experienced the tingling of the tongue? Advice? 

- are there better options than Valtrex? Is it possible that I am resistant to the antiviral right off the bat? 

I appreciate anyone with answers-to /experiences like mine. This forum has been a saving grace for me so far but it is SO HARD to have questions answered. 

Ive been trying to manage my stress and diet and supplements to cater to this virus, yet I feel it’s kicking my ass. I’m almost convinced that the rest of my life will be one constant outbreak and that my sex life is doomed forever.

 

lots of love and appreciation, 

H. 

The tongue tingling happens to me! I had unprotected vaginal and oral sex, and now I have horrible symptoms all over my body that no doctor can figure out.

[Navigating this new normal]

Interested to hear how you are doing now after a year, has it gotten better? I was diagnosed two months ago with hsv1 too. Started with splitting headache and painful sores too. Went on daily suppressive and had a lot of prodome symptoms the first 4 weeks; tingling all over my butt, itching. That went away for two weeks but now the itching is back but less bad and I have clumpy white discharge. Not sure if it’s prodome or BS or something. Frustrated because it rarely feels 100% normal down there anymore. Hoping to hear in a year it’ll be better!