December 4, 2014 at 6:07 pm #2150Anonymous123Member
I was diagnosed with genital HSV-1 a little over a year ago. I did not experience any flu-like symptoms. Four days after having intercourse with my boyfriend, it hurt to pee and I just thought I had a UTI. The following morning it still hurt to pee and I looked down to see sores. I made a same day appointment to see my GYN in which she obtained a culture of the sores. The culture came back positive for HSV1 (A year prior, I had tested negative for both HSV-1 and HSV-2 from a blood sample). I took generic Valtrex during primary outbreak and it took a little over a week for the sores to heal. I did not continue to take the medication for several months following the initial outbreak. Every day since my diagnosis, I have had vaginal discomfort and some pressure at the base of my spine. The vaginal discomfort varies from sensitivity to touch to slight burning. I have gone to my GYN doctor for follow-up of the discomfort and was found to have BV at one appointment. I was treated for the BV but did not go for follow-up testing to make sure it was resolved. I did not have foul-smelling discharge that often times accompanies BV. I did not know I even had BV since I constantly experience discomfort. I have been consistently taking generic Valtrex for the past 5 to 6 months. I started with 500 mg a day and now have recently increased to 1 gram a day. Some days I have some relief but often times I experience the discomfort. It has been affecting my day-to-day life as I am constantly living in discomfort. I have yet to find someone who can assist me on what to do next. I have switched GYN doctors as I continue to search for some relief. I have tried to discontinue taking the generic Valtrex, only to experience more vaginal discomfort and back pain. I have not had any sores since the first outbreak. The discomfort has not intensified or shown up in other locations. It is continually in the same area. I worry now that I am not with the same partner, that if I am experiencing ongoing pain that I am constantly infectious and that I could infect a future partner if they are negative for HSV-1. Besides some anxiety due to my diagnosis, I eat fairly healthy and am moderately active. I do not get sick often but I have been diagnosed with chronic mono. I have tried taking herbal supplements and lysine supplements with no positive benefits. I have tried eliminating coffee and do not eat nuts. I have even tried going off birth control for several months (Junel FE) to see if that would make any difference.
If you can provide me with any information as far as what I could be experiencing that would be great. Is this truly my HSV or could it be another factor? Why is it that sometimes the medicine seems to work and at other times doesn’t? Would I maybe benefit from switching to Famvir? Do you think this is neuralgia? Do you think I would benefit from acupuncture in the future to help alleviate the pressure I experience in my lower back?
Any advice or suggestions would be appreciated.
December 4, 2014 at 11:32 pm #2154Terri WarrenKeymaster
Normally genital HSV 1 is quite a benign infection with few recurrences and very little shedding of the virus. The fact that the Valtrex doesn’t really work consistently to me suggests that your symptoms are not really related to herpes. I’m not sure why sometimes it does seem to help and other times not. Eliminating coffee and nuts shouldn’t really be doing anything different about your herpes. I am also confused by what you are calling “chronic mono”. That’s not something I have ever heard of before and I”m not sure how such a diagnosis would be accurately made. I’m wondering if someone is interpreting those lab tests correctly?
I doubt that Famvir would make a difference. I don’t find in my own practice that it works as well as acyclovir or valacyclovir (Valtrex).
Has your health care provider discussed any other treatments for this pain, like Lyrica for nerve pain?
I also don’t think the pain you are describing is due to BV. BV is not an inflammatory condition (thus an -osis rather than and -itis).
Perhaps acupuncture would be worth a try, yes. I just doubt that this is due to herpes, it just doesn’t fit very well with how this disease state normally works.
December 6, 2014 at 8:21 am #2170Anonymous123Member
Thank you for responding so quickly. I have an appointment with the new GYN doctor next week. I hope to find a possible answer to the discomfort I have been experiencing or at least things I could try to help alleviate the discomfort. I am starting to think that some of my anxiety and worries may be the cause for some of my symptoms since I am often times focused on it. I am currently working on that. I read your book and that helped with some of my concerns. My biggest concern is telling a new partner. I know that the majority of people already have HSV1. Currently the person I am talking to has said they are negative for both. I read that Genital HSV 1 transmission genital-to-genital is low. Is it true that the longer you have it the less you are likely to transmit it to someone else? The times of shedding is 3-5% of days. Is this out of 100 days or out of the year? Is it more likely for them to get oral HSV from performing oral on me or is the risk still the same? I feel like I would feel more comfortable in telling someone if I had all my facts.
As far as my ‘chronic mono’.. I had mono a few years back and from recent lab work I was told I had ‘chronic mono’ due to elevated EBV. I had never heard of this as well.
Thank you again for your time.
December 6, 2014 at 3:36 pm #2171Terri WarrenKeymaster
Yes, the rate of transmission of genital HSV 1 is low. That could be because it sheds less (and your numbers are right) but I”m sure it also has to do with the fact that most people already have HSV 1. Did the person you are talking to actually have testing or they just think they are negative? The shedding rate is out of 100 days, yes. We don’t have statistics on whether it is more likely to contract HSV 1 in your situation from giving oral sex or intercourse. And I’m not sure I even have an opinion about that at this time.
Most people have antibody to EBV. I don’t think that qualifies as chronic mono but if it isn’t genital, I’m less confident about my answers.
You have one more question in your subscription if there is something more you would like to ask.
As for your anxiety: I think it could be playing a role in that people who acquire genital herpes, regardless of type, do focus more on their genital area and notice sensations they likely would not have noticed had they not been diagnosed with herpes. It isn’t that you are imagining symptoms but rather perhaps noticing things a lot more. could that be, do you think?
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