Is this Prodrome – lasting forver

[Frustrated in SC]

2 years ago (2 weeks after a risky encounter) I developed a burning feeling on the left side of my penis. I was achy, felt feverish and had chills. I took Valtrex a 1.5g/day for 2 weeks. I use it to treat Oral HSV as needed.There was never any lesion or blister or anything that looked out of the ordinary with this sudden genital burning. I went to dr, he looked and said I did not have herpes and ran testing to confirm that I only had HSV1 and no other STD. Several weeks later this feeling went away while still on Valtex. I discontinued valtrex for several months with the exception of an occasional few days to head off an oral OB.The tingling/burned never fully went away but was manageable. Fast forward about 6 months or so and the intense burning was back on my penis – only this time accompanied by nerve pain on my buttocks, back of my thighs and burning scrotum. Also new was a “tightness/soreness” in my groin, and a tight scrotum most of the time its hard to explain but it was new and uncomfortable. I went back on valtrex but found no relief, went to dr. He diagnosed with prostatitis treated with a ton of levaquin. The burning never went away. Although i was peeing better with a healthy prostate. With the pain persistent and still on valtrex, I went to the urologist, desperate for help. He thinks is a lumbar spine/nerve issue and dismissed the herpes idea. He ran a test to ease my mind, and called me personally days later with the result that I was positive for HSV1 but neg for 2 and to him this supported his idea that I could not possibly have genital herpes. Ever more desperate for answers – I reluctantly came off the valtrex – to “see what happens and if an outbreak would occur. I’m in week 3.5 of intense nerve pain but no outbreak to date. SO -what is happening? I think the initial timing of the flue like symptom and burning is suspicious, but I’ve tested neg twice, valtrex never eased the symptoms, and coning off of it so far has not caused and outbreak.?Ideas

[Frustrated in SC]

Terri, Do you have any insight here? I have an apt with urologist on Friday. I plan to be tested again and if there is anything specific I should request it would be great to know ahead of time.
I realize this all sounds nuts and even a couple of Drs have already dismissed this but SOMETHING is happening and it hurts and all of the symptoms could be prodrome/herpes and Considering the timing of the onset of the initial symptoms and the fact that Drs often misdiagnose herpes – it makes sense to me that it could be. I dont have mental illness or anything like this. lol.

Is there a way to be 100% sure that I DO NO HAVE HSV of any type genitally? I’d like to get on with my life and sex life/marriage, but I need to be fully educated on any medical situation I have going on that could potentially affect my loved ones.

[Terri Warren]

This does not sound like herpes to me due to negative testing, lack of sores, lack of improvement with antivirals. If you want to be absolutely sure about HSV 2, you should get the herpes western blot. I am guessing you will come back negative. These sounds like possibly pelvic floor or prostate issues to me.

Terri

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