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Hello,
In November of 2022 I received oral sex from my wife. Later that day she had a cold sore, and 3 days later I was at my primary care with burning genital pain.
I had 3 bright red spots on the shaft of my penis but none of them broke open. Pain lasted 8+ days.
I was diagnosed Genital HSV1 and had lab test with result:HSV 1 IgG, >62.20
HSV2 IgG was negative.
Uneventful for a while.
My genitals seemed to be much more sensitive to chaffing, and would get irritated more easily, but overall I didn’t think about it much.Things changed in March of this year (2023). Similar feeling (burning, tingling, pain all over my genitals) but much worse. This time no lesions at all.
I was put on 500mg Valtrex a day (still on 500 a day). For the next month I thought I was having constant outbreaks (even on the meds), though I never had any lesions. After 30 days of this pain I went back to my primary care.
He thought maybe genital PHN. He put me on Gabapentin which helped immediately, I started at 300mg a day and now 5 months later am up to 1800mg a day. I have had this pain for 5 months, the Gaba is helping.
In April I saw an Infectious Disease doctor who said PHN sounded correct.
June to a Neurologist who also agreed. He said because the pain was along the top of my penis and in my groin area, that lined up with what nerves are typically affected by HSV.
Lab tests again last month, HSV 1 IgG > 62.20. Negative for HSV2 IGG, HIV, CMV, Chlamydia, Syphilis
I have to use the treadmill naked. Chaffing greatly aggravates the pain for days.
1. Does this sound like PHN to you?
2. What are outcomes like for patients with genital PHN? There is virtually no information I can find on the internet about genital PHN lasting as long as mine has.
3. I have a follow up with my Neuro in 3 months. He thinks pain likely gone by then. What questions/concerns should I bring to him?
4. I am afraid to kiss my wife and get oral HSV1. HSV1 has had me in pain since march. Is that crazy?
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Let me first I think there has been some questionable advice here. When you’ve had the symptoms and had an antibody test, the test indicate that you have been infected with HSV one for a long time prior to this encounter. You did not have sores consistent with herpes, at least from your description with me.
1. Does this sound like PHN to you?
No, not due to genital HSV 1, it doesn’t2. What are outcomes like for patients with genital PHN? There is virtually no information I can find on the internet about genital PHN lasting as long as mine has.
I think that is because it is very unlikely that that’s what’s going on here.3. I have a follow up with my Neuro in 3 months. He thinks pain likely gone by then. What questions/concerns should I bring to him?
I could be pointed out that you have HSV one way before you had this encounter with your wife and subsequently got a cold sore. We don’t know if your HSV-1 infection is oral or genital unless you have had a cold sore at some point in your life that you can recall. If you have had a cold sore that you could recall at any point in your life, then it is extremely unlikely that you would subsequently acquire genital HSV 1.4. I am afraid to kiss my wife and get oral HSV1. HSV1 has had me in pain since march. Is that crazy?
I don’t think I describe it as crazy but I think I would describe it as uninformed. You already have HSV one and you had it when you thought you got new genital HSV 1. I think you’ve been getting some bad information or at least incorrect information and have made some decisions based on that that aren’t reasonable.Terri
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1. Can you elaborate on my Igg result indicating a previous hsv infection? I’m guessing I wouldn’t have> 62 within a couple weeks of infection.
You definitely would not have a 62 within a couple weeks of infection!2. What would you do next if you were me? I seem to have some recurring problem or a problem that fluctuates in severity. I’ve been in pain for almost 6 months, I’m taking a high dose of Valtrex and 2400g of Gabapentin a day and soon switching to Lyrica because Gabapentin no longer works.
Lyrica is a brand of the same drug.
I hope you’ve had other things done like imaging of the spine?Terri
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