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Glenna's avatar

I acquired genital herpes sometime in my 20s - did not know at the time what it was and was too embarrassed to ask a doctor. It was finally diagnosed in my late 30s because I used cortisone to treat the itching which caused huge welts, and finally saw a doctor. I took valacyclovir at the time but then stopped after the initial treatment for that one episode, and tried to treat outbreaks with lysine (which didn't work). In 2007, at age 54, I developed Ménière's disease, diagnosed by a very well known ENT. He asked if I had ever been diagnosed with Herpes, because he believed the virus causes or perhaps triggers Ménière's disease. He prescribed 1g/day of valacyclovir basically for the rest of my life. My hearing has been fairly well preserved; I stopped having episodes of vertigo after about 6-12 months of treatment with valacyclovir which could occur anywhere, any time (I still feel woozy at heights but nothing spins); I do have constant tinnitus but I've trained myself to pretty much ignore it. I've never had another herpes outbreak - I'm now 71. I wonder if you've heard of this potential connection between the herpes virus and Ménière's disease?

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Dr. Jen Gunter's avatar

I don't know of a connection per se, but I would think if there were it would be with oral herpes.

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Stephanie's avatar

It was such a relief to find the book "The Good News About the Bad News" by Terri Warren when I contracted HSV-2 many years ago. Grateful for those like you who do their part to shed light on this subject now as well.

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Kirsten Beier's avatar

I got them from my husband. He gets cold sores, I get genital herpes. *sigh* Knock on wood, only 2 outbreaks in 25 years. Acyclovir was my best friend the end of pregnancy, times 5. It's no fun but it's not the end of the world :)

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Brenna's avatar

Thank you for this article. Is there any data on the safety of valacyclovir (and others) for long-term (i.e. multiple years) suppressive use? Specifically thinking about kidney impacts/damage. Previous doctors have told me that suppressive use of valacyclovir should only be for one year at a time, then “take a break and see if outbreaks recur” (which they inevitably do). Thank you!

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Miranda's avatar

A good read, the stigma can be really difficult to deal with that is for certain! One thing you didn't discuss is that Herpes is not tested for on routine STI panels- is that true? I remember thinking I was always careful and would go to a clinic to get "tested for STIs" regularly in my twenties. I was never into paying attention to specific results at that time in my life, I was just always told that everything was negative! If this is true, I think it's an important reminder to those who may be struggling with the stigma. Even if you thought you were carful, this particular virus can slip through the cracks pretty easily 💔

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Dr. Jen Gunter's avatar

I have a post coming up about why routine testing for herpes is not recommended and why

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margaret sledziewski's avatar

I taught a course many years ago at the university which provided several details about STI's. I was astounded that so many students had no information about how they were contracted and the visible signs. I had a few students who could not look at the visuals which was very sad. Neglecting sexual health information at every level of eductation should nto be happening.

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S. Levin's avatar

Interesting anecdote from my years of practice: I had a teenaged pt. (who was a piece of work, eventually grew up & straightened out) whose initial outbreak was on her cervix, picked up (this was a needle in the haystack event) on Pap smear. Soon after she became pregnant & went to the local Ob. clinic for care and returned to tell me very obstinately that her Pap was fine & I was wrong. My explanation of the transient nature of the infection fell on deaf ears. Years later (she'd come back to us after the pregnancy) she had the 1st of many external outbreaks, eventually went on suppressive therapy (she had a problem swallowing pills so was on liquid Zovirax). One day she asked me - "Do you remember when you told me I had herpes & I didn't believe you?" Yes, I sure did. As noted above, she was one of my 'more colorful' pts, about whom I have many memories...

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Sarah's avatar

Such a helpful clarification on the use/value of different tests in determining type and "timing" of infection. Thank you!

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John Fontaine, Phm's avatar

The challenge of what may be an individuals initial diagnosis & the proximal cause (transmission) without question can be devastating & severely affect a couples relationship...so very important to have the pathophysiology correctly conveyed.

I have had the coincidental encounters with several clients (3 female & 1 make) whom were misinformed that their said to be blisters were "shingles".

Given their description of the location & recurrence (yes shingles can reoccur however not with the frequency these individuals described) I cautioned each individual that may very likely have a recurrence of HSV-2 possibly HSV-1.

I informally asked a newly retired Ob-Gyn if my thoughts were correct...no adequate comment was given...so!

Comment(s) requested...each client was encouraged to get an informed diagnosis from their physician!

In both men and women, the external genitalia are innervated by branches of the pudendal nerve, which originates from the S2, S3 and S4 ganglia of the sacral plexus.

Reactivation from the ganglia that form the pudendal nerve could result in the potential appearance of HSV throughout the branches of the nerve distribution...as such upon reactivation is conceivable to present as dorsal ventral lateral blisters aka buttock(s)

Each client I referenced had recurrent blisters in their lower back-buttocks.

I was & remain quite willing to be correct &/or overly cautious given each could be exposing their partner to HSV 1 or 2.

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