Jump to content

2 years of nerve pain and now a diagnosis


Recommended Posts

Well this sucks and I still can't believe I am in this position. 2 years ago I started to experience severe nerve pain. The pain started in my nether regions but moved around to my legs, bum, and tail bone. It felt like hot coals. I immediately went to my GYN. She had a long thorough look and declared everything looked perfect. I was sent for blood test (IGG and IGM) and they came back negative. The nerve pain persisted and was making me depressed. I did a lot of research and decided that perhaps I had injured my pudendal nerve (the pudendal nerve enervates your inner thighs, buttocks and genitals.) My GYN agreed but to be on the safe side I had blood work redone after four months. Everything came back negative. At the same time the pain had started to die down and then one day it was gone.

I was relieved and went on with my life. I almost felt a little silly for entertaining the idea of HSV. Until last week, almost 2 years later. The nerve pain came back in full force but this time so did a little single red lesion on my nether regions. I tried to explain it away but nothing seemed to fit. So today, with my heart thumping away, I dragged myself back into my GYN office. Hoping that she would say something like, "that looks like a friction rub, nothing to worry about". But she didn't. She swabbed it and told me she was pretty sure it was HSV. I don't have the results back but my gut it telling me it will be positive. 

Nothing about this has been typical. The 4 months of nerve pain. 2 negative blood tests four months apart. No lesions until 2 years after first symptoms. I want those tests to come back negative so bad but I know they won't. So what do I do? Sit around and cry? Spiral into depression? But I don't have time to do either one of those things. I have children, a job and a wonderful understanding BF.  I don't have time to fall apart. So I guess I will do my research, change my diet and take it as it comes. 

  • Like 2
Link to post
Share on other sites

I get the nerve pain to but mine has been constant I never had sores but my vagina gets red and feels like chafing I'd rather have that then the nerve pain my tailbone hurts constantly and radiates to my upper buttocks nothing seem to have worked this happens for 14 days then i get the chaffing. I finally excepted the fact that I have it after just being diagnosied it been a rough 7 months but lucky for you your boyfriend understands it put a strain on my relationship even if u have it there are ways to control the break outs it's not the end of the world and I hope for u the nerve pain doesnt always come. You still have ur family. Uou can always take antivirals I have tried some online remedies nothing seems to work for me but for some it does. Just keep it immune system up. Let me know ur results 

Link to post
Share on other sites
  • 2 weeks later...

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

  • Single ➵ You may like to try the Dating App

  • Similar Content

    • Jesusislove777
      By Jesusislove777
      Hello, 
      I was diagnosed with hsv1&2 earlier this year. I was prescribed 1g of valtrex (valacyclovir) a day for suppressive therapy.  Valtrex helps greatly with my symtoms, but I recently had to leave my job for health reasons and will no longer have health insurance to get prescribed valtrex. 
      Does anyone know where I can purchase valtrex (valacyclovir) online without a prescription?
    • HSV2sucks
      By HSV2sucks
      I am experiencing a lot of nerve pain, numbness, shooting pain, back pain, leg pain, pain in my butt cheeks... and I found some studies on nerve pain & HSV... 
      https://jamanetwork.com/journals/jamaneurology/fullarticle/795486
    • Freefalling87
      By Freefalling87
      I contracted the virus anally 2 years ago without a primary outbreak, just the fever like symtpoms. Only had my first visible outbreak 4 months later and took valtrex for a few days. Only afyerni was done with the meds, that's when the nerve pain started. Ever since then, I never used any meds again and only have a small red dot outbreaks in my inner left and right thighs near my dick. 
      However, the nerve pain is constant on my left inner thigh in the crease and it sometimes moves to the head and shaft (nerve tingly pain). This pain has been constant for 2 years. Just wondering if I'm the only one with this problem, but are there any guys who have constant nerve pain from hsv2? 
    • CookieSC
      By CookieSC
      I am GHSV2 positive with a full credential--an unequivocal and indisputable blood test with lots of little antibodies in it.  I even obtained an advanced degree--a biopsy of the first OB. I've had this nervous system infection for several years...yes, nervous system infection...not a dermatologic infection. It is a widely known fact that GHSV2 resides in the sacral ganglia.  Pesky things, them facts!!! 

      My first OB presented with all the bells and whistles...and sirens.  Now, I rarely get OBs.  By rarely, I mean that I can go a couple of years or more without one.  However, I do frequently suffer from the same identical sacral nerve pain that I experienced when I had my first OB.  I did not experience this type of pain prior to being exposed to HSV2.   There are two reasons I use Valacyclovir, but I do not take it every day.  1. I want to decrease the likelihood of giving HSV2 to my significant other (I don't medicate daily because it was a LDR) and/or 2. I am in a lot of sacral nerve pain and I don't want to wait it out.  In my case, whether or not I use Valacyclovir, I rarely have an OB...I just have nerve pain.  The nerve pain is alleviated by taking Valacyclovir.  It's like prodrome nerve pain, but without the blisters.  Does anyone doubt what I am experiencing as being HSV2 related?  If so, please explain why.  Make sure you have done significant research and are able to post charts and graphs and multiple sources to back up your statements...because this shit's real 😤 
    • morty1234
      By morty1234
      Hello,
       
      I have noticed that most people who suffering of daily nerves pain are mainly male and have mediteranean background: turc, arabic, spanish, jew, (indian, pakistanese are obviously not mediteranean but they might have some ancestor ).. It's also my case.
      I want to confirm this hypothesis. Among people suffering of nerves pain, can you post if you are/are not with mediteranean background?
      It could be interesting to understand the virus and adapt a cure for us.
      Thank you
  • Trending Now



  • Donate

    If Honeycomb has helped you, please help us by making a donation so we can provide you with even better features and services.

  • The Hive is Thriving!

    • Total Topics
      71,807
    • Total Posts
      485,686
  • 0_unsure-if-it-is-herpes.png

    Nervous about dating with herpes? Skip "the talk" and browse profiles here.

  • Posts

    • CHT
      1.11 on the IgG test is still really low and could easily be a cross-reaction with the antibodies you have for HSV1..... based on all your data, it sure does not seem as though you have HSV2.... I'd relax and go with that....
    • CHT
      Hey Willily..... what would make you think you have HSV2?  Have you been tested?  Results?  The idea of getting it in the kidneys is unheard of (at least in my non-medical opinion)..... HSV2 tends to stay in the urogential area of the body and to a lesser degree can also be transmitted to the lips/mouth but, inside of an internal organ?  No.  
    • CHT
      Hey Lucy.... well, I guess getting much the same answer from the gyno specialist sort of puts the whole issue back into the category of "it's not likely HSV" you're dealing with down there..... and stick to the 1 gram of valacylovir (which I think is good advice).... did she pull any blood samples or did you bring the data you already have with you?  If I recall, your HSV2 antibodies level were very low, almost "borderline" thus giving more doubt that you may actually have HSV2.  Not sure why she would lean toward HSV2 and not HSV1 based solely on your IgG results..... So she thinks you have seborrheic dermatitis down there?  I've never heard of that but, that means nothing.... hopefully with the new medication, that will be under control in a few weeks or couple of months..... then it will be interesting to see if you have any sign of problems in that zone.... particularly if you stay with the valacylovir.    BTW, the full nude body exam must have come as a surprise!  LOL.  But, she was being extremely thorough I suppose.... better than rushing you in/out.   Oh, and to answer an earlier question, so far, it's been about 3 or 4 weeks back on 1 g/day of valacylovir.... and so far all clear!  It's not a record for me but, I am encouraged.  Also interesting to note that I've been dealing with a whopper of a stomach virus for last 5 days (fever, chills, aches, etc).... I thought for sure this would put too much pressure on my immune system and allow my HSV2 to reactivate but, fortunately, all clear, not even any prodrome.... but, I won't get too excited just yet, it can all change in a second!  
    • Fernie
      I’ve been diagnosed with hsv1 and have had some cold sores on the inside of my lips.  I’ve been diagnosed for some time with that. But around July 2020 I went in for an std panel and to my surprise my hsv2 IGG levels were equivocal.  My doctor at the time told me that I indefinitely had hsv2 although I’ve never had any symptoms.  This began a whole craze. I switched doctors and ordered another hsv2 test that also came back equivocal and was told that what the first doctor said was correct, that I do in fact have hsv2. The fact that I wasn’t testing positive and none of my past sexual partners tested positive led me to think I should keep getting tested to confirm whether I do or don’t have it.  So I went for the third test and it was .72 IGG which would be a negative. (Around July 2020 as well) I was still a little confused so I went for another a couple months later in October 2020, this hsv2 test was .89 IGG which is right under equivocal but still negative.  So armed with this data I went to a private doctor that I paid out of pocket for because I began to think that the Medicaid doctors might be wrong and maybe underpaid or whatever I dunno it just didn’t make sense. So I went to the private doctor and at the time I had what seemed to be like a small ingrown hair and I showed them and showed them my data. They said based off the ingrown hair that it was just an ingrown hair, and that the lab results were correct and that I had no hsv2 and that the prior doctors were wrong. The doctor said I should’ve never been tested because I never had any symptoms prior to that small ingrown hair.  So this made me happy but also made me lose faith in our healthcare system.  But just recently I went back for my 10 panel and on 6/9/2021 my hsv2 results were 1.11 IGG which indicates I am positive. This is driving me crazy and on a side note I noticed that my hsv1 IGG levels were both gradually going up as the hsv2 was creeping up. I dunno if there’s any correlation there but it’s just something I went back to look at out of curiosity because I do know I’m hsv1 positive.  At this point I just want to know if I am in fact hsv2 positive, what should I do? I want to get the western blot test because it’s supposedly the golden standard.   here are copies of my tests  https://ibb.co/Wskdtqs https://ibb.co/fGgjJxd https://ibb.co/HryKn8g
    • ohno35
      I'm sorry you're struggling to find answers; I feel like I'm in a similar place.  When I stopped worrying about the symptoms, they eventually went away completely after almost two years. Then, I did not experience any symptoms AT ALL for 2.5 years. In April I started worrying about the symptoms again, and they came back and are pretty much constant, as they were before. I know that it looks like it's *just* anxiety. But my gut is telling me there might be something else going on. I'm getting the WB done so I can finally rule out herpes completely.  I've been diagnosed with somatic symptom disorder, and I've wondered if it's not just anxiety about symptoms but hyperfocus on certain parts of my body that makes the nerves more sensitive and causes neurological-like issues. I've always struggled with hyperfocus and I've found I fit into the diagnostic criteria for Autism, ADHD, and OCD, but do not have enough of any of the symptoms to qualify for a diagnosis (though I have been misdiagnosed with 2/3 multiple times). The concept of Vulvodynia seems interesting because my understanding of it is that it results from hypersensitive nerves from a variety of initial causes. I wonder if hyperfocus on my vagina, vulva, and mouth is causing certain symptoms.  I definitely had extreme anxiety about herpes before my symptoms started, but I did have an outbreak on my mouth of something that seemed too long-lasting and blistery to just be a pimple, so I wonder if herpes or another related virus is involved too. I know I'm anxious, but I still know my body and I've never had anything on my mouth like that before, as far back as I can remember. I still have the scar from the huge blister almost five years later!!!!! Otherwise I would have been effectively gaslit by my doctors that it was a pimple and I was overreacting. It's possible though that I have had HSV-1 since childhood and had a rare herpes outbreak, but all the other symptoms are largely unrelated. I was hospitalized at age 4 for an extreme reaction to mono and possibly HSV-1, so I'll have to see if I can locate those hospital records. If I can confirm I was positive for HSV 1 at age 4 and also come up positive on the WB, I could still probably rule out my current symptoms being caused by herpes.  If my herpes WB is negative, I do wonder if another virus could be the culprit. I'm not sure if other things can cause blisters on the mouth, or if the oral blister and my other symptoms are unrelated. I know CMV is not out of the question. I know that hand, foot, and mouth disease was epidemic at my University at the time, so it could have caused the oral sore and maybe been an instigator for chronic pain? I've been reading about how certain infections can be catalysts for nerve pain, reactive arthritis, and so on for people with certain genes, autoimmune issues, high levels of stress, and/or other pre-existing risks. I've always had weird reactions to things despite being seemingly healthy, so that would not be out of the question.  We seem to have very similar symptoms, so I'll keep you updated on what I find! I'm getting blood drawn for the WB next week, and then I'll see what happens after that. 
×
×
  • Create New...

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.