HERPETIC Neuralgia

[Karner]

Dear ladies and gentlemen,

For 3 years now I suffer from terrible pain in the genital nerve area due to a herpes Type 1 infection.

Does anybody have any experience with this?
During the week when sitting whole day the pain gets very bad.

I would be so thankful for any advice.

kind regards, Siegfried

[Violet M]

Siegfried, what medications have you tried so far? What about antivirals? What about pain meds for neuropathic pain such as lyrica?

Violet

[Karner]

Dear Violet,

Thanks so much for your interest.

I tried a lot alraedy. Antivirals are not helping the pain. I also tried Cymbalta and other anti-depressants, and also some pain medication with litte effect.

It took me 3 years to find out that my main issue is sitting, as it seems that the pressure on the nerves triggers the Herpes virus. This sounds crazy, but I have a red glans basically all the time. Even in the mornings, and I have no clue why.

One positive thing - I bought a TEMPUR seat cushion a week ago - and I feel so much better. Did you ever try TEMPUR products? It is so much different and better than all I tried before.
Yesterday I felt like in heaven with very little pain (after 3 most terrible years).

All the best, Siegfried

[river133]

Seigfried, exactly what tempur cushion did you buy that gives you much relief.? I looked, the prices and styles vary so much. Thanks. I hope your problem will go away. You have come to the right place to find help. We have wonderful moderators.

[Violet M]

Sigried, I'm glad to hear you are feeling a bit better.

[Gurma]

Are you certain it's herpetic?

Did you actually have lesions?

If you had lesions did you get a swab test, and did they test for Herpes Zoster (shingles) ?

I was diagnosed with the same thing (herpetic neuralgia from hsv1), and a year later it turned out it was actually pudendal neuralgia.

I never had lesions, but the docs best guess was it was herpetic neuralgia caused by hsv1 because of recent oral sex and there are extremely rare cases of herpes with no lesions.

I spent a year in pain without help, constantly upping my meds over and over because the underlying cause wasn't being treated.

Neuralgia from HSV that isn't Zoster is not even documented. It's purely theoretical because neuralgia can be caused by Zoster (shingles).

HSV1 and 2 can cause some lingering pain that can last, but it is nothing like what happens with Shingles.

[Gurma]

Dear Violet,

Thanks so much for your interest.

I tried a lot alraedy. Antivirals are not helping the pain. I also tried Cymbalta and other anti-depressants, and also some pain medication with litte effect.

It took me 3 years to find out that my main issue is sitting, as it seems that the pressure on the nerves triggers the Herpes virus. This sounds crazy, but I have a red glans basically all the time. Even in the mornings, and I have no clue why.

One positive thing - I bought a TEMPUR seat cushion a week ago - and I feel so much better. Did you ever try TEMPUR products? It is so much different and better than all I tried before.
Yesterday I felt like in heaven with very little pain (after 3 most terrible years).

All the best, Siegfried

Hi Siegfried,

Not sure if you saw my last post, but the more I read your post the more I wonder if you really have herpetic neuralgia.

As I mentioned I was also initially diagnosed with the exact same thing (herpetic neuralgia from genital hsv1).

A year later I saw a pelvic pain specialist and they gave me a more likely diagnosis: Pudendal Neuralgia

Have you seen many doctors? I saw 7 before I found one that was competent and actually helped me.

Pain that gets worse with sitting is a common symptom of pudendal neuralgia.

The fact that your glans is red permanently could also be a sign of a fungal infection.

Do you have outbreaks? Did you ever have herpes lesions, and did you get a swab test?