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Phantom nerve pain (?) and getting trusted doctor's advice

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Hi everyone, 

I contracted genital herpes (HSV2) 2 years ago, and have come a long way in acceptance and self-love. However, I have two topics that I would love support from the community on:

1) "Phantom" nerve pain - I really struggled with outbreaks for my first ~1 year. I was having outbreaks at least once a month, and sometimes more. I started taking acyclovir in response to outbreaks at first, as recommended by my doctor, but they were coming so frequently that I asked about suppressive treatment. I am now on a suppressive regime of acyclovir. Despite this, I continue to have dull pain in the areas where I have had physical outbreaks in the past. Does anyone have any good information on what this is? Is an outbreak around the corner but being repressed due to the medicine? Can I still transmit the virus to my partner, when I am feeling these symptoms, despite being on the medicine? Any information would be very helpful. 

2) Getting trusted medical advice - Somewhat tied to the above, I worry about the legitimacy o my doctor's advice on the above and generally relating to my HSV2 because I had multiple issues with doctors on this area. During my first physical outbreak, the doctor sent in for the wrong tests (bacterial, not viral). A second doctor then doubled down on the bacterial diagnosis, which caused further inflammation. Subsequently, my general doctor is one that just follows anything in her big book of medicine, but I've really struggled to believe that they truly know what they are talking about. Does anyone have any good resources on how to find a quality doctor who actually knows about this virus?

Thank you so much. I'm glad to be a part of this community.

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Hi there!

I've posted on here recently also describing the painful sensation I felt with the term "phantom nerve pain". As far as I am concerned, its very common for any herpes virus to cause phantom nerve pain - on a much worse scale, shingles patients complain of nerve pain years after having the illness. 


As for point 1. I share your pain, I've had HSV since 2019, and the first two years were quite the struggle with what I would recall monthly OBs. I was put on the daily suppressive therapy for one year (I believe it was 2022 until recently) and it helped a lot - in fact, while on the daily therapy, I cannot recall a single bad OB. Dull pain, however, seemed common, especially during periods when I had stress or bad sleep, and I imagine if it were not for the daily medicine, I would have had an OB during that time. 

I also question my doctor. He asked me to stop the daily therapy and go back to taking valacyclovir only during OBs, and as you can imagine, a month after stopping the daily therapy I had another major OB. 

Hang in there! 

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Hi @bd2nbo,

I'm really glad you reached out to the community for support and information. Dealing with herpes can be challenging, but you're not alone in this journey.

1. "Phantom" nerve pain is something that many people with herpes experience. It's often described as a tingling, burning, or discomfort in the areas where you've had outbreaks before. While it can be unsettling, it doesn't necessarily mean that a full-blown outbreak is imminent. The suppressive medication you're taking can help reduce the frequency and severity of outbreaks, but it might not eliminate these sensations entirely. It's essential to continue taking your medication as prescribed, even when you're feeling these symptoms, to help keep the virus in check. Transmission risk is lower when you're on suppressive therapy, but it's not zero. (Generally it lessens viral shedding by 50-80%, which is hugely helpful in minimizing transmission). It's still possible to transmit the virus to a partner, especially if you have intimate contact during an outbreak or when you're experiencing prodrome sensations. Using protection and having an open conversation with your partner about your herpes status is crucial.

2. Finding a knowledgeable and trustworthy doctor is essential when managing herpes. It can be frustrating when you feel like your healthcare provider isn't giving you the guidance you need. Unfortunately I hear about this a lot. There are just so many doctors who are just ignorant about how to treat herpes, and some who are outright stigmatized. Oof. For medical advice from a true professional, I always suggest booking a time with Terri Warren or asking questions on her forums; she's super knowledgeable in all things herpes. As far as finding a local doctor, don't hesitate to literally interview doctors on the phone to get a sense of how much they know about herpes or if they are awkward or throw any sort of stigma or shade in answering any herpes-related questions. 

You're making great strides in your journey of acceptance and self-love. Keep reaching out for support, and remember that you have a community here to help you along the way. 😊

Note: This is for informational purposes only. This information does not constitute medical advice or diagnosis.
I'm not a medical professional, so please take this as friendly peer support. 

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