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New infection at different site after 2.5 years. What is going on?

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I was diagnosed with HSV2 about 2.5 years ago. Since then I have had regular genital outbreaks - once every month or two. 
Everything I have read has said that the outbreaks will likely be less severe and less frequent with time but I have not found this to be the case. A few months ago I had an outbreak that lasted a month that was even more painful than my initial infection. 

A few days ago I entered a new level of hell. I began having another genital outbreak and I realized I'm also having an outbreak on my butt cheek right on the sit-bones. It is extremely painful and swollen and sitting down for any length of time is agony and I have to sit for 8 hours at a time for my job. 

My understanding was that once you are infected your body builds up immunities so that it is not possible to spread to a new location after the initial infection. I have never had an outbreak at this location so it is definitely new, so what is going on? Here is my source for that assumption: https://www.hopkinsmedicine.org/health/conditions-and-diseases/herpes-hsv1-and-hsv2/genital-herpes
Is this incorrect that you can't transmit the infection to other parts of your body? 

I feel like I am losing control of my body and this is really making life hard for me. Everyone has told me that this disease gets easier to manage with time but in my experience it's only getting harder and more unpredictable. I'm starting to feel again that having an infection makes me a dangerous even to myself. If it is possible to spread despite me being very careful, where will it spread next? My face? My eyes? 

Has this happened to anyone else? Can anyone help me understand how this happened? 

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A few more specific related questions I have:

1. Is it possible that this is only a "surface level" infection at this new site passed by the virus directly to the skin? Or does the appearance of blisters mean that the virus is already established in the nerves and I can expect that this is a new site that will have recurrent outbreaks for the rest of my life? 

2. Sometimes I will have an outbreak and 4 or 5 days into it when the initial blisters are already scabbing over and healing, new blisters will start to form close by and appear which will then take another 4 or 5 days before they scab and start to heal. Is this the "same" outbreak? Or is this somehow a new patch of skin being infected by the virus particles released from the initial blisters. 

Thanks for your help. 

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Hey @very_obvious_throwaway,

I totally feel you on the frustration of dealing with recurrent outbreaks – it can be a real rollercoaster. I'll try to help clarify some things ...

The idea that outbreaks get less severe and less frequent with time is a general trend, but it's not set in stone for everyone. Everyone's body is a little different, and factors like stress, immune system strength, and even just plain luck can play a role. The outbreak that lasted a month and felt more painful than the initial one might have been a fluke, or it might have been influenced by some unique circumstances.

Genital herpes can indeed pop up in new areas, including the sit-bones (it's actually very common for people who are used to only genital outbreaks to occasionally get outbreaks on or around the butt area). The herpes virus hangs out in your nerve cells, and outbreaks happen when it decides to travel along the nerve to the skin's surface. So, yes, it's possible to have outbreaks in new locations even after the initial infection, but it's not necessarily because of auto-inoculation (transferring herpes from an outbreak on one part of their body to another, which only tends to happen during a primary outbreak before antibodies are established). Your understanding isn't off the mark, but herpes has its sneaky ways.

Feeling like you're losing control is understandable, but remember, you're not alone in this. As for spreading herpes despite being careful, while the virus's behavior can be a bit unpredictable, you're not a danger to yourself. Herpes isn't likely to just hop around your body randomly.

As for your other questions:

  • It's tough to definitively say if a new site will have recurrent outbreaks or if it's a one-time thing. It could go either way. For me, all my outbreaks (on both my mouth and genitals) recur in exactly the same place. However, the appearance of blisters doesn't necessarily mean the virus is fully established in the nerves at that site. Time will be the true tester here.
  • The appearance of new blisters close to the initial outbreak area is usually a continuation of the same outbreak. It's not so much a new patch of skin being infected by released virus particles; it's just the virus moving along the nerve pathway.

Let us know if you have any other questions!

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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Hi @very_obvious_throwaway firstly I understand completely how you're feeling, around 18 months - 2 years ago I had what is now believed to be an OB on my back, then a month or so later at the top of my chest and a few frequent OB's at the top of my butt. Prior to this I'd only had OB's in the same area on my genitals HSV-2. I also encountered the most severe OB I've ever had which again my GP assured me only happens on the 1st OB. That information is not 100% accurate at all. 

At the time my GP and sexual health clinic led me to believe this was shingles or auto-inoculation due to a possible auto immune disease (in the middle of my back?!), fast forward to now and an infectious diseases consultant I saw a few weeks ago is quite confident this was HSV-2. So to back up what @mr_hopp said above it can travel, and most doctors and information will give the text book norm. I've not had an OB in those areas since.

The good news is, things have calmed down for me now, a LOT! But I did have a rough 6 months or so, I imagine some of that was due to how stressed I was with all of the wrong information I was being given at the time. Try to stay calm ignore it as best you can, it will pass.

Coincidentally this all happened a few weeks after my COVID vaccine, which the ID consultant said may or may not have been a factor, I definitely wasn't the only person he'd seen with new and unusual problems related to HSV in recent times.

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  • 2 weeks later...

Thanks @J1010 and @mr_hopp for taking the time to reply. I really appreciate both of your answers. 

So my understanding now is that it is not actually a new infection, but just he same infection expressing itself at a new location along the same nerve pathways. I'm not sure if that makes it better or worse lol, but at least I don't feel like everything I read and learned about this disease is incorrect I guess. 

I am still feeling quite down though. I have already had another new outbreak since making my first post. This is the 2nd this month with only about a week in between of feeling "normal." I feel like I have lost hope in the idea that herpes will be managed better with time. I'm now more than 2 years in and still having at least an outbreak a month on average and haven't noticed really any decrease or predictability in the outbreaks. It has really ruined my sex life with my partner, they are very understanding, but somewhat avoidant of the topic. They don't really initiate anymore because they know odds are I will be having an outbreak, or waiting to heal from my last one. We haven't really found it possible to maintain a fun spontaneous sex life when odds are there is usually just a week or two in a month where it's "safe" to have sex. I have tried daily antivirals but I found they don't really reduce the outbreaks that significantly enough to re-establish a normal sexual relationship, and the thought of beating up my liver everyday for the rest of my life feels not worth it to me. 

I thought I would become more optimistic and learn to live with this as time went on but I think I feel the opposite now. I don't know. I'm just rambling now but it feels quite hopeless. All of these things that I have learned and been hoping for are just turning out to be false. That it gets more infrequent and less severe with time, that antiretrovirals can suppress OBs, that you don't have to worry about it appearing in new locations... that you can still have a fulfilling sex life. That might be true on average but it seems like for whatever reason I seem to be an exception. 

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Hey @very_obvious_throwaway

I'm really glad you found the responses helpful. It's true, herpes can sometimes take unexpected turns, and understanding that outbreaks in new locations are often related to the same infection expressing itself along nerve pathways can help make sense of it. And hey, knowing the nuances doesn't necessarily make it better or worse, just a bit more understandable!

I hear you about feeling down – it's completely understandable. Dealing with frequent outbreaks can be incredibly frustrating, and it makes sense that it's affecting your outlook. It's okay to have moments of doubt and frustration. And remember, everyone's journey with herpes is unique, and timelines for improvements can vary a lot.

As for the impact on your sex life, that's a tough one. It sounds like you and your partner are really understanding of each other's needs and limitations. While things might not be as spontaneous as you'd like, your connection and intimacy are clearly strong, which is amazing. And it's okay to not want to take daily antivirals if they're not giving you the results you'd hope for. And if you'd like to give it another go, you might try a different antiviral to see if it works better for your body. 

It's true that averages don't tell the whole story. While some folks do experience decreasing severity and frequency of outbreaks, it doesn't mean that everyone follows the same pattern. Your frustration and doubts are completely valid reactions. But — and this is important — it doesn't mean there won't be better times ahead or that new solutions won't emerge. Sometimes it does take longer for certain immune systems to catch up and keep the virus more at bay. And medical research is always evolving, so who knows what might be on the horizon.

Keep reaching out, keep sharing your feelings, and keep taking care of yourself. You're not alone in this journey, and while it might feel tough right now, remember that your experience is just a part of your bigger story. Feel free to ramble here anytime – sometimes getting those thoughts out can help ease the weight.

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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  • 2 weeks later...

Thanks again, 

I'm trying to remain optimistic. I woke up today with new lesions in a new location. This is my 4th outbreak in just over a month. 3 have been back to back with no real break in between and I have spent almost the entirety of the last month in pretty bad pain. I just feel very discouraged. 

There is no point to this message lol. 

I guess I'm just putting it out there in case someone reading is in a similar situation to feel less alone. 

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