› Forums › Herpes Questions › Having constant intraoral herpes now genital lesions
- This topic has 9 replies, 2 voices, and was last updated 1 year, 4 months ago by Terri Warren.
-
AuthorPosts
-
-
June 22, 2022 at 10:01 am #77851Bluebutterfly1Blocked
My husband tested negative for hsv-1 igG. He had the sore on his palate I was worried about since I have oral hsv1. I am the one who is having this terrible and rare presentation of intraoral sores on my hard palate for 6 plus months. About 2 months ago i started having itching and strange sensations in my genital area that were intermittent. I asked you about it and you said since I had a well established hsv1 in my mouth it is unlikely I autoinfected my genitals. About a month ago I developed about 7 small bumps that were in my pubic hair region. No itching or burning. No oozing or ulcers developed. They were not folliculitis as there was no hair in them. This was a first fir me. Husband thought they were bug bites due to linear distribution rather. They did not break open or scab. A few days ago I have red painful ulceration on my right inner labia. It started as itching now burning. Red and a couple spots look like tears or small cuts. Oozing liquid. I got it swabbed fir pcr test yesterday. I might have touched my genitals a few months ago without washing my hands furst?
1. Do you think this is how I infected myself with hsv down there?
2. What other ways could I have infected my genitals? My husband does not do oral sex. He also is negative fir hsv1 and 2 (recently tested.
3. If this is hsv, I have had 2 obs already after 1 month. Does thus mean I will have frequent obs? I though hsv1 I supposed to recurr much less than that?
4. If I have hsv 1 orally and genital, do obs in both places occur simultaneously or do you have them in one location at a time?
5. I am concerned that my sex life is now over. I cannot live with myself if I spread thus to my husban. I am on valtrex for suppression as you know 500 mg bid but I still had obs in my mouth and also now in my genitals while on suppression. What hope do I have? Is there anything more I can do? -
June 22, 2022 at 10:06 am #77852Bluebutterfly1Blocked
6. If my body is not able to fight hsv and I keep getting frequwnt recurrences despite taking suppression what do you recommend I do next? Should I get immune testing done?
7. Is it pissible I have a crazy strain of hsv1 that is exceptionally hard to fight off?
8. Have you ever encountered a case like mine? If so, what happened to those patients over time, did their disease ever improve and how long did it take? -
June 28, 2022 at 11:03 pm #77884Terri WarrenKeymaster
1. Do you think this is how I infected myself with hsv down there?
Wait, I’m confused, you already have results saying this is HSV 1?
If this is HSV 1, has anyone else ever given you oral sex? Could you have acquired HSV 1 orally and genitally at the same time in the past? Again, it is very unlikely that you transferred virus from your mouth to your genitals.2. What other ways could I have infected my genitals? My husband does not do oral sex. He also is negative fir hsv1 and 2 (recently tested.
Again, has anyone else ever given you oral sex?3. If this is hsv, I have had 2 obs already after 1 month. Does thus mean I will have frequent obs? I though hsv1 I supposed to recurr much less than that?
You are ahead of yourself here, I think. Let get results (and you likely have them by now). If this is HSV 1, the recurrence pattern you are having is atypical, yes.4. If I have hsv 1 orally and genital, do obs in both places occur simultaneously or do you have them in one location at a time?
If this is genital HSV 1, you will have far fewer outbreaks genitally than orally5. I am concerned that my sex life is now over. I cannot live with myself if I spread thus to my husban. I am on valtrex for suppression as you know 500 mg bid but I still had obs in my mouth and also now in my genitals while on suppression. What hope do I have? Is there anything more I can do?
The IgG test for HSV 1 misses 30% of infections, compared to the western blot. So it is possible that your husband’s IgG test missed an infection. If you have it in both locations, I would suggest that he obtain a western blot to be certain that he is really not infected. How long have you been together?6. If my body is not able to fight hsv and I keep getting frequwnt recurrences despite taking suppression what do you recommend I do next? Should I get immune testing done?
If you continue to get frequent recurrences, you could have an acyclovir resistance testing done of a positive culture, yes.7. Is it pissible I have a crazy strain of hsv1 that is exceptionally hard to fight off?
I doubt that8. Have you ever encountered a case like mine? If so, what happened to those patients over time, did their disease ever improve and how long did it take?
I’ve not really encounter this particular thing before, no.Terri
-
June 29, 2022 at 7:56 am #77913Bluebutterfly1Blocked
1. The PCR swab of my genital lesions came back neg for HSV DNA. I noticed the sores/burning in the evening on my labia minora and the next day in the afternoon it was swabbed in less than 24 hours of me noticing any symptoms/redness. At the time of swab the sores were open, red, and raw and oozing fluid a hurting/burning. The provider swabbed all of the red sore/open cut areas and it did hurt during the swab procedure so I figured she scraped a good amount and got a decent sample. The result came back the next day. Do you think that this could be a false negative? What are the rates of false negatives on genital PCR swabs for HSV-1?
2. I had been taking valtrex 500 mg BID for at least a week or more prior to the PCR swab for treatment/prevention of the oral HSV-1. Is it possible that the valacyclovir made this result a false negative despite the sore being fresh (nonhealed)? I think the timing on the swab was good as my ulcer/sore became less painful and started improving after following day and was swabbed at it’s worst. It took about 4-5 days to heal. No crust or scabbing but it was itchy when it was healing.
3. Yes, I have had oral sex done to me at the age of 20 (I started having classic cold sores on my lip when I was 13 or 14 years old (probably got it from my mother who had cold sores) but didn’t have anyone do oral sex on me until I was 20 years old. I was focused on school and did not really kiss or have sex with anyone until 18 years old. So, my HSV-1 oral infection was definitely well established by the time I had any oral sex or sex in general. Is it possible I could have gotten gHSV1 from the oral sex in my early 20s and just never had an OB until now… 15 years later?
3. Do you think I could have infected myself as a teenager by autoinoculation (carelessly touched my cold sore and then my genitals) in the 4 month span after my primary HSV-1 oral outbreak? I was not careful and I didn’t understand anything about HSV at that young of an age…
-
June 29, 2022 at 8:06 am #77914Bluebutterfly1Blocked
4. If that is possible, then how likely would it be that I had HSV1 genitally and orally all these years (since age of 14 ) and never had a genital occurrence until now 20 years later? To me, if I had genital HSV-1 for 20 years and never had an OB, why all of a sudden now? Especially since I’m taking Valtrex (never took suppression antivirals until this year due to the frequent intraoral sores). I am very confused.
5. What should I do next to figure this out? So far the 1 genital HSV swab was negative while on valcyclovir supression. My biggest question and concern is do I have HSV genitally and it is consuming my thoughts. I am afraid to have sex with my husband as I don’t know what’s truly going on and his risk for transmission.
6. My husband and I have been together for about 15 years, married for about 11. Like I said, he and I don’t kiss and I don’t give him oral, or share food/drinks/utensils. I have been very particular about doing what I can to not infect him or my kids with HSV. He tested neg for HSV-1 on igG test and I would be willing to do a western blot test for him if I have genital HSV just to get more clear idea of our circumstance and risk but i am primarily focused on what I need to do next. IF i have another genital sore, I will plan to go and get it swabbed again, maybe I should get it biopsied if I had a negative PCR? I thought for a second I might have bequette’s given my intraoral sores and genital sores but that is super rare and my oral sores do not look like aphthous ulcers.
7. It is very frustrating because I think I need to assume i have genital HSV until I rule it out by more negative testing or finding out the sores are something else. I realize there are very few things that can cause ulcers/sores on labia so that is why I have to assume it is HSV. What is your opinion on everything I have described about my lesions, symptoms, and history…what would you assume and recommend I do at this point? I value your input greatly. TY!
-
June 30, 2022 at 1:12 am #77927Terri WarrenKeymaster
1. The PCR swab of my genital lesions came back neg for HSV DNA. I noticed the sores/burning in the evening on my labia minora and the next day in the afternoon it was swabbed in less than 24 hours of me noticing any symptoms/redness. At the time of swab the sores were open, red, and raw and oozing fluid a hurting/burning. The provider swabbed all of the red sore/open cut areas and it did hurt during the swab procedure so I figured she scraped a good amount and got a decent sample. The result came back the next day. Do you think that this could be a false negative? What are the rates of false negatives on genital PCR swabs for HSV-1?
I think it is very unlikely that this is a false negative. Given there is no better and accurate test than PCR swabs, we have no data on false negatives.2. I had been taking valtrex 500 mg BID for at least a week or more prior to the PCR swab for treatment/prevention of the oral HSV-1. Is it possible that the valacyclovir made this result a false negative despite the sore being fresh (nonhealed)? I think the timing on the swab was good as my ulcer/sore became less painful and started improving after following day and was swabbed at it’s worst. It took about 4-5 days to heal. No crust or scabbing but it was itchy when it was healing.
It is possible but unlikely.3. Yes, I have had oral sex done to me at the age of 20 (I started having classic cold sores on my lip when I was 13 or 14 years old (probably got it from my mother who had cold sores) but didn’t have anyone do oral sex on me until I was 20 years old. I was focused on school and did not really kiss or have sex with anyone until 18 years old. So, my HSV-1 oral infection was definitely well established by the time I had any oral sex or sex in general. Is it possible I could have gotten gHSV1 from the oral sex in my early 20s and just never had an OB until now… 15 years later?
No. I didn’t realize you had had cold sores for so long.3. Do you think I could have infected myself as a teenager by autoinoculation (carelessly touched my cold sore and then my genitals) in the 4 month span after my primary HSV-1 oral outbreak? I was not careful and I didn’t understand anything about HSV at that young of an age
I think that is extremely unlikely…4. If that is possible, then how likely would it be that I had HSV1 genitally and orally all these years (since age of 14 ) and never had a genital occurrence until now 20 years later? To me, if I had genital HSV-1 for 20 years and never had an OB, why all of a sudden now? Especially since I’m taking Valtrex (never took suppression antivirals until this year due to the frequent intraoral sores). I am very confused.
I think that is extremely unlikely5. What should I do next to figure this out? So far the 1 genital HSV swab was negative while on valcyclovir supression. My biggest question and concern is do I have HSV genitally and it is consuming my thoughts. I am afraid to have sex with my husband as I don’t know what’s truly going on and his risk for transmission.
HSV 1 genital infection is rarely active and is rarely shed. Once someone has had HSV 1 genitally for two years, they shed virus on about 4 days out of an entire year. Given the very unlikely possibility that you have genital infection and the low number of recurrences if you did, I think your concern about infecting your husband is not realistic. Is he as worried as you are about all of this?6. My husband and I have been together for about 15 years, married for about 11. Like I said, he and I don’t kiss and I don’t give him oral, or share food/drinks/utensils. I have been very particular about doing what I can to not infect him or my kids with HSV. He tested neg for HSV-1 on igG test and I would be willing to do a western blot test for him if I have genital HSV just to get more clear idea of our circumstance and risk but i am primarily focused on what I need to do next. IF i have another genital sore, I will plan to go and get it swabbed again, maybe I should get it biopsied if I had a negative PCR? I thought for a second I might have bequette’s given my intraoral sores and genital sores but that is super rare and my oral sores do not look like aphthous ulcers.
Biopsy is not the method to diagnose HSV. PCR swabbing is.
Again, you don’t kiss and you don’t give him oral sex all because of your oral HSV 1 infection? How does he feel about all of that?7. It is very frustrating because I think I need to assume i have genital HSV until I rule it out by more negative testing or finding out the sores are something else. I realize there are very few things that can cause ulcers/sores on labia so that is why I have to assume it is HSV. What is your opinion on everything I have described about my lesions, symptom, and history…what would you assume and recommend I do at this point? I value your input greatly. TY!
People approach things differently. I would take a very different approach of I were in your situation. And it also depends upon how your husband feels about all of this. If he is the one that is so scared of getting HSV 1 that he is OK with never kissing his wife or receiving oral sex, then that is a decision for the two of you to make. Given that half the population has HSV 1 anyway, given effective treatments are available, given how infrequently HSV 1 reactivates in the genital area, I know my husband wouldn’t give it a second thought – he’d take the risk in a heartbeat to have a fuller loving and sexual relationship. But as I said earlier, everyone is different and their priorities are different.Terri
-
June 30, 2022 at 1:09 pm #77943Bluebutterfly1Blocked
1 I understand the false negative rate is low but I think the clinical suspicion is high for HSV considering the presentation of ulcers and breaking of the skin on my labia minora. I believe the swab timing was good but PCR testing is not perfect. How many cases have you seen of valtrex causing a false neg PCR swab? How do antivirals interfere with PCR swab testing? is is possible that shedding of the sore is intermittent even though it is an open sore, and therefore there was no virus on the sore or is there always virus there when there is an open sore?
2 Why do you say valacyclovir unlikely would cause a false positive? I am trying to understand better.
3 So you are saying that you haven’t seen or heard of cases when someone got genital HSV earlier in life and it be dormant (asymptomatic) for 15 or 20 plus years and showed up later?
4 I do remember touching myself with my hand on my right labia (carelessly) without washing my hand a few months ago. Let’s say that there was HSV 1 virus on my hand (I was eating food shortly before touching the labia and had saliva on my hand) and I touched my labia using that hand/finger 5/10 minutes later, did I autoinfect? I didn’t start having genital sx until after this incident.
5 My husband is very concerned about HSV and requested we don’t kiss/oral sex. He does not want to take chances and am OK with it as I don’t want to give it to him. That is why it is VERY IMPORTANT I KNOW IF I HAVE GHSV OR NOT. It could end our sex life. Are there underwear condoms that would cover his entire pelvic area? what % does condoms reduce risk of transmission from w to men using condoms? What are the best things I can do to reduce my risk of infecting him with gHSV and what is that transmission risk decreased down to doing all those things? If we don’t know from data, what is your estimated guess? I am willing to do whatever I have to do.
6 if this is a new infection, should I hold off sex for a year or 2, and what is shedding rate?
-
June 30, 2022 at 11:03 pm #77951Terri WarrenKeymaster
1 I understand the false negative rate is low but I think the clinical suspicion is high for HSV considering the presentation of ulcers and breaking of the skin on my labia minora. I believe the swab timing was good but PCR testing is not perfect. How many cases have you seen of valtrex causing a false neg PCR swab? How do antivirals interfere with PCR swab testing? is is possible that shedding of the sore is intermittent even though it is an open sore, and therefore there was no virus on the sore or is there always virus there when there is an open sore?
I don’t know if I’ve seen Valtrex interfering with a swab test – how would one know? It is possible that the Valtrex interfered with the swab, yes, but you took it so soon after a symptom appeared – seem like it would have picked up here but it’s possible the meds interfered, yes.2 Why do you say valacyclovir unlikely would cause a false positive? I am trying to understand better.
I don’t think I said Valtrex would cause a false positive, and if I said that, that was an error3 So you are saying that you haven’t seen or heard of cases when someone got genital HSV earlier in life and it be dormant (asymptomatic) for 15 or 20 plus years and showed up later?
No, I have, that is possible, but I thought we were talking here about you transmitting virus from your mouth to your genital and I said that with all the time that you’ve had HSV 1, having that happen recently is unlikely. It is possible that you got this years ago but with no symptoms genitally until now, that seems unlikely4 I do remember touching myself with my hand on my right labia (carelessly) without washing my hand a few months ago. Let’s say that there was HSV 1 virus on my hand (I was eating food shortly before touching the labia and had saliva on my hand) and I touched my labia using that hand/finger 5/10 minutes later, did I autoinfect? I didn’t start having genital sx until after this incident.
I don’t believe you did, because your oral infection was so well established a few months ago5 My husband is very concerned about HSV and requested we don’t kiss/oral sex. He does not want to take chances and am OK with it as I don’t want to give it to him. That is why it is VERY IMPORTANT I KNOW IF I HAVE GHSV OR NOT. It could end our sex life. Are there underwear condoms that would cover his entire pelvic area? what % does condoms reduce risk of transmission from w to men using condoms? What are the best things I can do to reduce my risk of infecting him with gHSV and what is that transmission risk decreased down to doing all those things? If we don’t know from data, what is your estimated guess? I am willing to do whatever I have to do.
I am not aware of any underwear condoms, no, but you could look online. Condoms reduce transmission of HSV 2 (we don’t have data on HSV 1) by 65%. If you are also taking antiviral medication, that may reduce it more, we don’t have any data on the reduction of transmission of HSV 1 as it is such a rare event to start with.6 if this is a new infection, should I hold off sex for a year or 2, and what is shedding rate?
It is not a new infection because you have it orally. If you believe that you gave it to yourself months ago, it is also not a new infection. I really can’t advise you on how long you should not have sex since you’ve had the oral infection for years.Terri
-
July 13, 2022 at 6:59 am #78064Bluebutterfly1Blocked
1 Sorry. I meant to say how can the Valtrex cause a false negative on the PCR swab test? I want to understand how antivirals may interfere with PCR swab testing better. I was taking Valtrex 500 mg BID for at least a solid week prior to getting the outbreak and had it swabbed within 24 hours of noticing any symptoms/redness. I have seen some studies show that PCR can still show positive even if people are taking valtrex (like when they test shedding rates of antivirals vs placebo). That is why i am confused how antivirals can cause a false negative.
2. Do you recommend i get off the valtrex to get a more accurate PCR swab test result?
3. I have had some rash on the skin of my buttcheek two sepearte times. It looked like 7 very small dots that appeared in somewhat of a linear distribution. They did not itch but first presented as redness and then later within a couple of days lightly scabbed. I did not see obvious vesicles, but maybe they were very flat and tiny vesicles. Does that sound like herpes on butt? It showed up 12 days after the genital lesion appeared. I have been taking valtrex 500 mg BID for supression so i am disappointed if this is another ob that happened so soon while on antiviral.
4. For females, what areas of my body can I shed asymptomatically? Is it just the vagina, anus, and vulvar region, or can I shed from other locations that I had an outbreak- like where i had those dots on my butt? Please let me know which areas of my body can shed virus?
5. Can covering those areas on my body by wearing bike shorts during sex help to decrease transmission since there is less skin-skin exposure?
6. What are areas on men can HSV penetrate/infect? I know penis is one, but what other areas are susceptible? In other words, what areas on men’s bodies should be covered to prevent transmission?
7 If this is HSV1- why am I getting it so often on AV suppress? what else can I do to treat? I am considering getting off label SADBE. What are your thoughts?
-
July 13, 2022 at 6:58 pm #78089Terri WarrenKeymaster
While people can shed virus while on antivirals, it is also possible that the medication is working so well to reduce or prevent viral replication that the sore doesn’t have enough virus in it to make the test be positive.
If you want a more accurate result, you could get off Valtrex, yes
the lesions on the buttocks that you describe sound nothing like herpes
Females shed virus from the labia, the vagina, the anus. You do not shed virus from thick skin like the buttocks when no lesions are present, no.
I’m not sure how you would cover the labia and vagina with bike shorts and still have sex?
the penis is the area that needs coverage.
Do we know for sure that this is HSV 1 now? I didn’t think we did.
I don’t recommend other treatments such as the one you describe, no. We don’t have enough science about this yet.
You have posted seven times and paid for six. I’ve listed you as a spectator now.
Terri
- This reply was modified 1 year, 4 months ago by Terri Warren.
-
-
AuthorPosts
You must register to ask your own question or be logged in to reply to this question.