I am a 46 year old immunocompetent female. I contracted herpes over 20 years ago. After the initial outbreak, I have never had another outbreak until now. A year or so ago I had a type specific blood test for type 1 and type 2 that was negative. I was told that after so many years with no outbreaks it is possible to get a negative blood test because I don't have enough antibodies to show up in the test. I had a positive culture about 3 months ago when I had a lesion. It was not typed. Since then I have had back to back outbreaks...usually 2 times a month, always on my period and then one time in between, maybe because of ovulation. I am concerned as to why, after all this time, this is happening? I recently had a full panel of bloodwork done and everything seems fine. The only thing I can think of is hormone fluctuations due to perimenopause and vaginal dryness and thinning. I have not been sexually active so I am at a loss to explain this. I am on acyclovir but it doesn't seem to be making much of a difference. Can you offer any insight? Is it possible that once I build more antibodies my outbreaks will diminish? I have alot of pain with the outbreaks and alot of odd nerve issues as well. I only get the lesion in the same place but the skin there is very red and irritated even when I am not having an outbreak. I get what I call "hatpin" pain...like someone is jabbing me with a hatpin. It can be excrutiating. Also, I get the hatpin pain with sexual arousal, as the skin swells or moves, regardless of whether I am having an outbreak. This is really maddening. I have talked to my doctors but they are really pretty clueless about herpes in general and have no idea what is going on. Thanks for any helpful info you might offer me.
You describe a dilemma that probably isn't very common, but it certainly comes up from time to time: someone with an established pattern of genital herpes recurrence who then develops more frequent outbreaks. Usually it is not possible to come up with a clear explanation as to why it happens. Some cases reflect new HSV infections, probably mostly in someone who previously had genital HSV-1 infection who then acquires HSV-2. In a few cases it might be due to a second infection with the same virus type. That is rare, but might be more frequent many years after the initlal infection than just a few years later.
However, in your case it is most likely that your problem 20 years ago was something other than herpes. This is supported by the negative blood test a year ago. If you had a positive culture test at that time, then the diagnosis was valid. If not, most likely you never had herpes at all. However, this is an unclear area. It is generally believed that once positive, an HSV blood test remains positive for life. However, this has has not been studied much over such a long time frame, and perhaps antibody sometimes drops to unmeasurable levels after 20+ years. Research is needed in this area.
That you are having particularly frequent outbreaks also suggests your new genital herpes infection is the first. Symptomatic outbreaks are most frequent in the first 3-6 months, and except for that period, rarely occur more often than once a month. Most likely your outbreaks will decrease in frequency in the coming months. It is also possible that not all your symptoms are due to herpes itself. Certainly the "hatpin pain" or pain during sexual arousal are not herpes symptoms. Likewise, between herpes outbreaks, generally there is no continuing pain or redness at the site of recurrent lesions. The only symptoms due to recurrent genital herpes are the sores themselves; in the absence of sores, other symptoms are uncommon.
Are you on antiherpetic therapy? If you are taking valacyclovir or one of the other anti-herpes drugs, you can be pretty certain that most of your continuing symptoms are not due directly to herpes. (However, it is possible to get recurrent blisters/sores on treatment, but with reduced frequency.)
Somewhere along the line you need to have another test for the virus, to determine for sure whether you currently have HSV-1 or HSV-2; or have another blood test. Since you had a positive culture 3 months ago, a repeat blood test at this time should show positive for one or the other virus type.
So my advice is to follow up with your provider. Specifically ask whether s/he believes all your symptoms are due to herpes. Get on antiviral therapy if you're not yet on treatment. Have a follow-up blood test.
I know it's frowned upon when we answer posts before dr hook and HHH do but - have you been tested for yeast and bacterial infections? Have you tried any topical estrogen creams to try to strengthen the thining vaginal skin?
Answering these questions will save them from asking you the same things when they get to your post.
This is what is so confusing. No, I have no vaginal infection or yeast. And no, this is not a new herpes infection. I haven't been with anyone, so new infection is not possible. I do plan on a second blood test and hopefully find the type. The only thing I can think of, and this may be born of desperation and not likely, but perhaps I had the herpes lesions vaginally and have autoinocculated myself from masterbation to the area outside the vagina, and because I had few antibodies, it is now acting like a new infection? And yes, Grace, I have tried estrogen creams for thinning skin and have not been able to tolerate them. So...thank you all for your input but I'm afraid I haven't been able to glean any new info. I have researched this pretty extensively and have found no one who can really give me any insight. I don't suppose I will ever get any conclusive answers, I was hoping I might, so I could better help myself deal with this but it doesn't look like that will be the case. I am on acyclovir. I was doing the 200mg 5 times a day but now am on the suppressive therapy of 400mg twice a day. So far it hasn't seemed to make a huge difference, but it's hard to really know because you don't know how it would be were you NOT on suppresives. Anyway, thanks again for the info.
"So far it hasn't seemed to make a huge difference, but it's hard to really know because you don't know how it would be were you NOT on suppresives."
That statement is powerful evidence against herpes as the cause of your symptoms. When acyclovir works, it is like magic; there is no middle ground. Recurrent outbreaks still can occur, but with lowered frequency. But between overt outbreaks, the symptoms will ge gone, gone, gone. You need and your provider(s) need to continue to explore other explanations for your symptoms. Trust me on this.
You might google vulvodynia for info on possible triggers and treatment options for vulvar pain (biofeedback/physical therapy, meds like amitriptyline, creams, etc.). Someone documented her experience with vulvar vestibulitis on a sex board I frequented. She eventually got better with a combination of estrogen cream, physical therapy, and sex therapy. Part of her treatment involved avoiding soap on her vulva (just water is fine), wearing cotton or no underwear, no tight jeans or pants, fragrance-free laundry detergent, etc.--those are some easy things you might try, if you haven't already.
I would definitely pursue this; maybe look for a gyn who has experience treating vulvodynia. Neuropathic pain is tricky. The sooner you can alleviate it, the better :-)
Thanks again for the input. I actually have looked in to vulvodynia...in fact I am trying to get in to see a specialist in that field who is in my town but so far have not been able to, since I need certain tests and pathology to send to get in and my HMO won't do them. Gotta love Kaiser. Anyway...I am taking the acyclovir but still get the outbreaks like clockwork. So...in that regard, I don't know that they are all that helpful. I do think I have some skin thinning and some vulvodynia issues but would really like to get a handle on the outbreaks as that just makes everything that much worse. I can deal with one or the other but both at the same time is pretty daunting. I admit, I am not the most patient person with this kind of chronic illness. I tend to be more logic minded and want definitive answers and solutions and this seems to be something that is not going to be managed in that way. My quality of life has really taken a hit, as I am really uncomfortable a majority of the time. And I agree with monkeyflower. Having had nerve pain issues before I know it is important to try and deal with them since they can kind of create a vicious cycle. But I greatly appreciate all the input and information from you all. Thanks you.
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