Jump to content
World's Largest Herpes Support Group
aliceisdead

My experience so far. To summarize - confusing.

Recommended Posts

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

Share this post


Link to post
Share on other sites
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?

Share this post


Link to post
Share on other sites
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.

Share this post


Link to post
Share on other sites
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.  

Share this post


Link to post
Share on other sites
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. 

 

Share this post


Link to post
Share on other sites
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, 

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • The Hive is Thriving!

    • Total Topics
      69,296
    • Total Posts
      466,214
  • Posts

    • that1youngguy
      hello all, update... so the white ulcer inside started around january 4... and today it is still there... no burning while i pee, just a constant mild irritation feel, no other symptoms i went back to get retested 2/12 so 2.5 months after exposure... including HSV, HIV, gon, chlam, everything came back negative... the doctor thinks it's some form of chlamydia, he gave my doxy for 10 days is it too soon to tell if i have HSV? is it possible to have an ulcer inside the urethra and be fungal or bacterial?
    • MikeHerp
      Probably not many.  I'm going to change my twitter symbol to the copper ribbon at least.  
    • nope1234
      okay! I guess I will just start at the basic dosage of vitamin C and go up every week little ? I take 1500 mg of super lysine like the bottle says and it still gives me gas and diarrhea. hoping it will pass if not I'll drop down to 2 a day! I really appreciate the advice! i know we would all.do ANYTNING to not have OB  at the moment idc about stigmas od boyfriends or dating or sex....I just care about FEELING healthy in my own skin. this is my one and only life 
    • Lulupazoola
      That sounds like a good place to begin.  The lysine worked really well for me for about a year and a half.  Then things got steadily worse for me and nothing worked until vitamin C.  My immune system is not that great even tho i take care of myself, so u may have good luck if u have a decent one.  With the vitamin c, u must 1) take it at intervals throughout the day, not all at once 2) dont increase the amount u r taking too fast 3) it will give u gas at higher doses and even diarrhea if u go crazy with it. These r signs to lower your dose!  If u can just control your OB's with vitamin c and lysine or anything else, maybe a cure will finally become available.  
    • nope1234
      any updates? worth the pricetag?  
×

Important Information

We have placed cookies on your device to help make this website better. You can adjust your cookie settings, otherwise we'll assume you're okay to continue.