[Question #1279] Comepletely Confused

48 months ago
Hi there,  

I posted a question regarding my female NGU diagnosis about a week ago. If you recall, I was experiencing severe urethral pain with increased urgency and frequency to urinate.  It began about 4 days after protected sex with a new partner. Chlamydia/Gonorrhea/UTI/ bacterial vaginosis testing were all negative. My physician sent out Igg testing for HSV 1/2 which were both negative. Due to the excruciating pain and lack of other explanations,  he also did a scraping of the inflammation around my urethra and sent it for culture and started me on a course of Valtrex. I have been on Valtrex for about a week. However, I am still experiencing excruciating pain and I've started to notice tingling in my left thigh, yet still no lesions anywhere. My doctor finally took pity on me and prescribed Vicodin which does offer some pain relief, but it's only temporary. In the meantime, I was referred to a urologist. She didn't really offer any help, suggestions or hope. I asked about the possibility of using prednisone to reduce the inflammation and she told me to take Advil (eye roll).  She offered a cystoscopy, but also said she didn't really think we would gain much insight from it since the inflammation and pain appear to be on the outside because I have no markers in my urine to indicate cystitis or anything else similar. Moving on, the results from the culture came back yesterday, and the it was negative for HSV 1/2!! When I questioned the accuracy of the culture, the nurse told me I absolutely do not have HSV, in any form.  My doctor instructed me to go ahead with the invasive cystoscopy. I think he is at a loss for what else to do with me. Your input would be most appreciated. I want my normal body back! I've always been a very healthy person and this is wearing on me mentally and physically. The pain has been present for three weeks straight, and I don't know where to go for help. 
Terri Warren, RN, Nurse Practitioner
Terri Warren, RN, Nurse Practitioner
48 months ago
oh Heather, I have been wondering how you are doing and I'm both sorry to hear your are not better, though happy to hear your swab test is negative from the urethra.  Do you know if it was a culture or a PCR?  A PCR is far more sensitive.  Here's an idea - could you get your partner(s) to test and see what herpes, if any he has?  If they are negative for HSV 2, that would be a good sign that you are really unlikely to have HSV 2 at the urethra.  I'm also thinking that if Valtrex isn't helping at all, it is less likely to be HSV.  I also rather doubt that herpes urethral pain would last consistently for 3 weeks without abating.  I know this is so terribly bothersome for you.  Do you think you will pursue the cystoscopy?  I don't think it would hurt anything to do this and it's possible it could clarify something for you.

Terri
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48 months ago
Thank you so much for the response. I truly appreciate your input on my case....again.  I don't think I could get the partner I suspect exposed me to agree to testing. He was so adamant that he had recently been tested, and he was negative. It's rather annoying. My soon to be ex husband was tested and was negative as well. I have a feeling I have HSV despite all the negative tests. Nothing else explains the burning and tingling sensations. But, like I said before, it's been three weeks and still no outbreak. Today I asked my Dr to increase my Valtrex dose despite the negative culture. He agreed, and I'm now taking 1gm three times daily. We will see if that offers any relief. How soon should I feel improvement with the Valtrex? Is that the upper end of dosage? I'm only 125lbs. I will find out what type of culture was done. Could HPV cause symptoms like this? One last question, with an HSV outbreak, is it common to see WBC or other signs of infection in urine dips/cultures? 
Terri Warren, RN, Nurse Practitioner
Terri Warren, RN, Nurse Practitioner
48 months ago
1 gram three times a day is the upper limit, yes - it is the dose used to treat shingles and I don't think you want to take that very long - if you see no relief in a week or so, I really doubt that it is herpes but until more time has passed for accurate antibody testing, we can't really know for sure.  But here's the deal - if you happen to have  new herpes and you take big doses of antiviral medicine for quite a while - I would say longer than a couple of weeks - you could well interfere with your body's ability to make antibody which would then be detected on the antibody test.  If the medicine is working as it is supposed to, it will prevent viral replication which then means that the immune system can't see it and make an antibody response  Do you see what I mean?  If you were my patient, I would strongly recommend that you not take antivirals for more than about 2 weeks for this reason, if you really want an accurate antibody test down the road.  I do not think HPV would cause this sort of pain, no, not at all.  And yes, we often see WBC's in urine with a primary, though not a lot of them.  What is happening there is that the urine is picking up white cells as it passes over open lesions.

Terri
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48 months ago
That does present a bit of a conundrum for me because I would rather suppress the virus than risk an outbreak of lesions. The pain I'm currently in is enough already! Although, I would like to know definitely if I have the virus. I will follow your advice and try this higher dose for a week and see if I get relief. If I don't, I will move on to the follow up with the urologist and the cystoscopy. I feel like I have a plan now. Thanks a million. 
Terri Warren, RN, Nurse Practitioner
Terri Warren, RN, Nurse Practitioner
48 months ago
Will that be just two weeks of antiviral therapy then?  I think your plan is a good one.  Then you can antibody test down the road several weeks with more accuracy.  Stay in touch!  We want to help if we can
Best
Terri
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