Sensitivity loss due to genital herpes?

I suffer from what I believe are complications relating to a herpes infection in 1991.  I have been experiencing genital sensitivity loss since then, and it has increased over time.  I have seen a number of doctors across the country, none of whom have been able to give me what I am hoping for, which is a way to reverse the symptoms.  Other than my herpes infection, I am in perfect health, and am 36 years old.  I do not take any drugs other than acyclovir, 400 mg five times daily.  This dosage long term seems to be excessive to me.  Is this the necessary dose of acyclovir that will suppress the virus, and (hopefully) protect my partner from contracting the virus or can I take less of the drug?

Is there a way to reverse the sensitivity loss?  Its been 16 years and the symptoms have slowly gotten worse, not better. I am wondering where I might find more information that supports what I have going on. I want to be in touch with doctors who have seen and treated patients with sensitivity loss (preferrably male patients) with success. I am very much in need of regaining my sensitivity and want to know what I can do myself to initiate that healing.  My life has suffered as a result of not having my sense of feeling for so long.  And like I said, the symptoms are slowly getting worse, and I am very scared.

greg

[H. Hunter Handsfield, M.D.]

First to your main question:  To my knowledge, loss of genital skin sensitivity is not a reported or known compllication of genital herpes and I have never seen a patient with your complaint.  I am skeptical that herpes is the cause.  Evaluation by a neurologist seems in order; I can't help and doubt that any other STD experts are likely to be able to be much better.

to the ancillary questions:  You indeed are on an atypical dose of suppressive therapy.  The standard recommendation for acyclovir is 400 mg twice daily.  The drug is not known to have any side effects, and the larger dose is unlikely to harm you (except perhaps in your pocketbook) or to have anything to do with your symtpoms.  But most likely you don't need that much and I'm puzzled about why a provider would prescribe it that way; that's the recommendation only for 7-10 days for the iniviatl infection.  Also, if protecting your partner from infection is the primary motivation for continued treatment, you might speak to your provider about valacyclovir (Valtrex).  Acyclovir probably is effective, but valacyclovir is the only drug proved to prevent transmission, and requires only one dose daily.

On the other hand, you may not need suppressive treatment anymore.  You don't say how effective it has been, i.e. whether you still have symptomatic genital herpes outbreaks.  If few or none in recent years, you should consider stopping acyclovir for a few weeks or months to see what happens.  Most people with recurrent herpes stop having frequent recurrences over a few years, and the frequency of asymptomatic viral shedding (i.e., the risk of sexual transmission) probably also declines with time.  You might not need any suppressive treatment at all.

And if you are in an committed relationship with only one partner, perhaps preventing transmission isn't all that important.  Many couples in that situation just let nature take its course, knowing the most genital HSV infections are trivial affairs, often entirely asymptomatic; and that effective treatment is available in the event of significant symptoms.  Also, even without suppressive therapy, the average rate of transmission in HSV-2-discordant couples is only about 5% each year - so even without protection, you might go 20 years without your partner ever cacthing your infection.  Of course this is a personal decision and one size does not fit all.

Best wishes--  HHH, MD

[monkeyflower]

While you wait for Dr. Handsfield's response, I was wondering about a couple of things. Do you ride a bike, by any chance? The seats can compress the pudendal nerve, leading to genital numbness.

Also, what about the emotional impact of being diagnosed with herpes? How about any relationship issues? Are either you or your partners overly concerned about contracting herpes? I'm not dismissing your physical experiences, only wondering if you've fully explored all the possibilities. Certainly emotional issues can have an *enormous* impact on your sexuality and genital sensations in general. So, in the process of seeing all those MDs, have you considered talking with a sex therapist as well? You would not be the first person they've seen with similar concerns.

And I'm wondering what your doctors have said. You've apparently seen a lot of doctors; have they all agreed it's related to herpes?