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aliceisdead

My experience so far. To summarize - confusing.

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aliceisdead

Hey everyone, 

 

I am brand new here and this is my first post. I wanted to just have a place where I could keep track of my symptoms and tell my story - public enough to be useful for someone else if they are experiencing the same (confusing/upsetting) symptoms as I am. 

I contracted the virus in April 2016 from my long term boyfriend. He had a cold sore that looked like it had healed completely but we were not well informed enough to know that we should wait for a good while after it looked healed before he went down on me. 

I experienced my first outbreak shortly after this and it was confirmed - I have HSV-1 genital herpes. The first outbreak was pretty "typical", I think.. at least compared to the things I have read online. I was sore and achy for a few days leading up with cold/flu like symptoms. My lymph nodes in the front of my legs were swollen to the point that it was painful to walk or sit down. The sores themselves were painful to the point where I wasn't able to walk. From beginning to end I think it was over in about 1 week.

The second outbreak timeline is harder to pin down. It was a few months after the first one. I had been experiencing intense lower back pain  - I went through ultrasounds and X rays, chiropractors, massage therapists, physiotherapists and GPs and no one was able to tell me what was going on or tell me what to do about my mysterious lower back pain. The pain was almost unbearable for the week leading up to my period and seemed to subside slightly when my period began. The pain didn't change during any movement - it was constant and consistent if I was sitting, standing, walking, laying down, working out... nothing helped or alleviated the pain whatsoever. This continued for weeks to months - at least 3 period cycles I believe. After some time my lymph nodes started to swell in my legs again (although less than the first time), I had cold and flu symptoms again and I realized that this may all have been related to herpes. The sores themselves were absolutely benign during this outbreak - I wouldn't have even noticed they were there if all of the other stuff that was happening was not occurring. This was the lowest I have been emotionally during this whole journey - I was absolutely devastated thinking that a healthy, fit 24 year old could be debilitated by back pain for months leading up to an outbreak. 

The most recent outbreak is in progress. Again, completely different than the other outbreaks this one had absolutely no symptoms leading up to the sores. No back pain (thank god), no cold and flu symptoms, no muscle soreness. The sores just showed up and were only around my anus this time. The appearance of the sores and itchiness associated with them coincided exactly with the start of my period (which was a weird one for me - absolutely no PMS symptoms whatsoever). They were incredibly itchy and painful. I didn't even realize that this one was attributed to herpes until about 2 days in because it was so different than my previous outbreaks. I had trouble sleeping due to itchiness the first night and was terrified to think that I may have hemorrhoids or some other issue. I am very confident that it is herpes though, although I didn't ever have any sores on my vulva like the other outbreaks. It lasted about one week, with about 2 very itchy and painful days/nights but was not horrible overall. 

 

I look forward to hearing about others experiences. I am very surprised at the huge range of symptoms I have experienced and how different each outbreak has been. What a rollercoaster ride :|  

Edited by aliceisdead

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Scooby2112

Thanks for posting your story.  It's helpful to hear real accounts of outbreaks and the symptoms that lead up to them.  Sorry you are having symptoms at all.  

 

Hsv1 generally averages 0.7 outbreaks a year so after your first year you may get some longer breathing room between outbreaks.  

Can I ask would you say you feel Norma (other than the back pain ) inbetween outbreaks?

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aliceisdead

Hey Scooby, thanks for the reply. I feel completely normal between outbreaks with the exception of the lower back pain that persisted for between 3-6 months between my first and second outbreak. I had absolutely no warning signs or symptoms previous to my most recent outbreak, it literally just appeared as sores within about 12 hours and was gone within a week.

It has been almost two years, with three outbreaks. The second outbreak affecting my day-to-day for 3-6 months makes it feel like more! Not so terrible overall though, I suppose. I crossing my fingers that it will slow down and that I won't have to deal with another outbreak like that one again.

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Scooby2112

I am with you.  I am positive for HSV1 but not sure if it's oral or genital.  I have never had a typical outbreak in either location.  Have some irritation on my penis in one isolated spot but doctors say it's not hsv.  Then burning and tingling in my thighs and butt for about 4 months.  

Drs say likely cause via extreme anxiety causing prostatitis or pelvic floor.  Just trying to stay calm and release stress to see if things get better.  

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aliceisdead
3 hours ago, Scooby2112 said:

I am with you.  I am positive for HSV1 but not sure if it's oral or genital.  I have never had a typical outbreak in either location.  Have some irritation on my penis in one isolated spot but doctors say it's not hsv.  Then burning and tingling in my thighs and butt for about 4 months.  

Drs say likely cause via extreme anxiety causing prostatitis or pelvic floor.  Just trying to stay calm and release stress to see if things get better.  

Yes I am a very busy MSc. student and I think my outbreaks are linked to stress as well. I am just sticking to a healthy workout routine and keeping my diet healthy in hopes that staying healthy overall will help. I also try to drink more water than coffee - but that doesn't always happen for me :). I hope you figure it out and thank for you replying. I am glad I signed up for something like this, I have a very supportive partner (he gave it to me so I'd hope so :O) but it is nice to have another outlet. 

 

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Jason2019

just try to pass first year, according what i heard most probably Ghsv1 wont shed after first year, that means no more severe obs after 1st year, 

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