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looking_4answers

For those who continue testing negative despite symptoms...

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    I've spent a long time lurking on this board, but this is only my second time posting. This post is for those who feel sure that they have HSV, despite all of the tests to the contrary:

    I, too, spent a long time believing I had HSV. I spent a year in doctors offices, taking tests, and paying attention to every last sensation. I 100% believed I had it. I "found" evidence to support the belief. I know many will throw rocks, but people like Wilso are the reason I didn't just settle for "my truth", and rather sought out the real truth. Instead of darkening office doors demanding to be treated for HSV, I started seeking alternate diagnosis. After each trial failed, I held onto that as one more reason it must be HSV. But then I'd come to this board, read a post that made me start to doubt my self-diagnosis because of one or two people willing to walk into the fire with an opposing view, continued seeking treatment, and now I am nerve/skin/mental pain free. I'm not going to bother writing in much more detail here, because our bodies are incredibly unique, and what worked for me may not be the answer for you, but it doesn't mean you shouldn't keep seeking an answer! I am mostly posting this for the random person, like I was, who lingers on this board, who isn't getting a diagnosis of HSV, but is experiencing pain/discomfort that is upending their lives, and isn't willing to settle for an infection that modern testing isn't picking up. Could you be the 1%? Sure. But you know what's more likely... that you're in the 99%. Please keep seeking out treatment, I spent nearly an entire year visiting doctors, went to 4 specialists, tried 7 different oral pills, and 2 topical treatments before I finally got a proper diagnosis and experienced relief! I can't guarantee what your outcome will be, but I can tell you that if I had just settled on believing I had HSV, I'd still be stuck in that physical and mental misery. 

    For those of you who are determined to believe you have HSV despite your test results, this is meant as no disrespect to you. If you believe you have HSV, that's fine, and I hope you find some relief. But for those of you that have even the slightest bit of doubt, please keep seeking a diagnosis so that you can have an enjoyable quality of life once again. Best of luck to everyone. 

    Edited by looking_4answers

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    @looking_4answers I am in that boat for almost a year now, have symptoms but negative HSV tests. Can you please elaborate on what symptoms you had, what was your diagnosis, what was the treatment, and how did you rule out various conditions, including HSV?? I'm thinking if you also had symptoms similar to HSV like I do, the diagnosis could be similar too, although not always the case. But at this point I really need a way to find what is really causing my symptoms that kinda make it feel like HSV but maybe it's not. So please, if you will, tell your story in more detail. Thanks!

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    Agree,

    I am in a hybrid position.  I tested positive for HSV1 via IGg, but that doesn't confirm location.  I have never had a "classic" OB, but have "sores"/irritation under my penis glans, and tingling burning on inner thighs and below my butt. 

    So I live like I have HSV1 genitally due to the recent symptoms, but would love to resolve these issues through other means but I am not sure whereelse to go from here.  You can privately message me if you don't want to post publicly. 

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    I’m I’m the same position as well...I’ve tested negative to blood test and swanning and active ob...do blood show positive no matter what? I’m just lost at this point ...

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    44 minutes ago, Yasha said:

    I’m I’m the same position as well...I’ve tested negative to blood test and swanning and active ob...do blood show positive no matter what? I’m just lost at this point ...

    Blood tests at 3 months are fairly accurate 95%+. (hsv2 is more likely to give false positives, hsv1 can be missed 20-30% of the time - false negative).  

     

    This anecdotal from other posts I have read.  

    A positive swab is definitive.  A negative swab does not disprove anything.  

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    I'm also very interested in your diagnosis. I hope you'll share it here to help people to find answers. Otherwise I say hello to Australia.

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    Hi @jingle, @Scooby2112, @Yasha, @MoniqueLow

    I almost hesitate to write too much here because my message to people feels more fitting as a general statement, rather than a specific one. What I mean by that is that I don't want people to get so hung up on what *my* diagnosis was, that if they are not diagnosed with the same thing, that they then go back to thinking it must be HSV. So please keep in mind that this is what presented in my body, and while your diagnosis very well could be a missed HSV infection, if you have had multiple blood and swab/PCR tests that say differently, then in all likelihood, you do NOT have HSV. Like I said before, you could be the 1%, but that is so incredibly unlikely; that's why it's the 1%!

    To begin with, my symptoms began as: frequent urination, intense and 24/7 urethra burning, vaginal burning, and pain that shifted from one side of my lower body to the other. I was in excruciating pain every time I was sitting. Even to this day, out of sheer habit, I rarely sit on my butt because for so long it just increased my pain. Additionally, I had pain in my pelvis, hip bones and inner thighs. As if these feelings weren't enough, I also had frequent irritation and tears on my perineum. My skin felt sensitive, and there were sharp pains that presented at random, from my clitoris to my anus. 

    With that, as many people can imagine, I thought I was experiencing nerve pain from HSV, that the skin symptoms were my bodies version of an outbreak, and mentally, I was a mess because I couldn't get a diagnosis. But every time I went googling, I could find "confirmation" wherever I went. That is half of the problem, and that is the reason I wrote this post. No matter what symptom I was looking into, someone was *always* linking it to HSV, even though medical science tells us that the symptom I was referring to was so unlikely, if not impossible, to be HSV. But I believed it because someone else who tested negative over and over again swore they, too, had HSV, despite the evidence. 

    I've seen people here say gabapentin didn't work for them, and thus conclude the answer must be HSV. I also tried gabapentin, and it did not work for me either. Was it because I have HSV? No, it was because everyone reacts to medications differently, and that wasn't the right one for me. I tried a total of 3 nerve pain medications over a long period of time, and it wasn't until I found the right one FOR ME, amitriptyline, that I finally started to experience relief. 

    I tried topical numbing gels, they did absolutely nothing. I tried a steroid cream (in part just to "test" myself -- they say HSV can be made worse by steroids, and so I wanted to see if my so called "outbreak" would be worse following a steroid. It wasn't). But the irritation also continued, thus I'd once again conclude I had HSV... are you seeing the cycle here? Try something. It fails. Declare HSV. Try again. Fail. HSV. Luckily I kept trying instead of seeking affirmation from others who would tell me that my symptoms were due to HSV despite the tests. 

    I visited with a family practice doctor, 2 gynecologists, a dermatologist, and a urologist, before I finally had a doctor who one, believed I was in extreme pain, and two, suggested something that actually helped! That's a big problem with this thinking as well; doctors don't believe we're experiencing the pain that we are. I did have legitimate pain, but it was also hard for my doctors to focus on solving the real problem when I'm sitting in their office sounding like a crazy person, declaring HSV after all of the tests have said over and over again that I don't have it. 

    One of the most obvious things I was doing that did not occur to me until only a couple of months ago... you cannot start stretching, pulling, spreading, checking, touching your skin 20+ times a day when you never did before, and expect it to feel normal. It wasn't until I randomly stumbled upon a hemorrhoid message forum that someone said the simplest thing; they had reoccurring fissures that just wouldn't heal and they couldn't figure out why. Well, it turns out that if you stand over a mirror and stretch your skin multiple times a day, it may weaken, and split. This is what I was doing! And it sounds so simple and stupid, but once I vowed to stop looking at my "symptoms"/"outbreak" every single day, multiple times per day, my skin could actually stay in tact long enough to begin healing. 

    I was put on antidepressants and anti anxiety medication. Honestly, I needed this because the pain I was experiencing drove me to an incredibly dark place, where I became obsessed with my health, and the one and only thing I could think about day in and day out was the irritation and nerve pain traveling my body. While my pain WAS real, it was exacerbated by my thinking. When someone says "it's all in your head", that is NOT true, but what is true is that if you focus on your genitals all day, you are going to be hyper aware of every single sensation, and you'll forget that sometimes you feel sensations that meant nothing before, and they mean nothing now. 

    This is getting rather long, so I'll try to wrap it up. Ultimately, I was diagnosed with vulvodynia, pelvic floor dysfunction, and NERVE DAMAGE! Yes, nerve damage. So please keep an open mind; if you are experiencing nerve pain, just because HSV affects the nerves does not mean that your nerve pain is HSV related. Hell, even if you have HSV, it doesn't mean your nerve pain is related. Maybe it is, but if you are testing negative over and over again, it is probably not HSV! People often write "experts" in quotes to somehow discount their expertise because it doesn't follow their symptoms, but that's a silly conclusion. Every last person who comes across this thread cannot possibly have some mutant form of HSV that isn't being detected by modern medicine. It just isn't happening. But if you don't stop believing that, you will never continue seeking treatment to relieve your pain. I finally decided to believe my 4 blood tests, 2 swabs and multiple specialists. It was the best choice I've made in terms of solving my pain. 

    At the end of the day, it took the RIGHT medication and physical therapy to improve my symptoms. But what was amazing, is that once I received the correct diagnosis, the pain disappeared as quickly as it came. I am still continuing that physical therapy and taking the medicine, and I anticipate I'll keep that up for a while longer.  

    That is my story. It may not be yours. But it could be, and I really hope that every last person who is experiencing ongoing pain without a diagnosis just tries to step back and objectively look at their situation. You can stay here taking part in threads full of people believing they have genital herpes without the evidence, or you can make your next appointment and try to figure out what is actually wrong. My doctor believes my nerve pain was due to a bladder infection that went untreated for too many days. I say this because often people conclude HSV because the pain came so soon after sex. While that's not a crazy assumption,  just because your pain follows sex, does not suddenly mean you've acquired a sexually transmitted infection. It might mean you got a random bladder infection that damaged your nerves, like me. 

    Just to say it one last time, your issue COULD be HSV... but if you are testing negative, it is probably not. Please keep seeking help. It took me nearly a year of *actively* seeking a diagnosis, but once I got the correct one, it made all of the difference in the world. I hope you can get there too, no matter your diagnosis. 

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    @looking_4answers thanks for long reply. So you were diagnosed with vulvodynia, pelvic floor dysfunction, and NERVE DAMAGE. What is your medication and treatment? What did caused the nerve demage? What treatment is for nerve demage? Thanks.

    Also, when your symptoms started exactly?

    Edited by MoniqueLow

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    @MoniqueLow I did answer some of this in my reply, but I know it is long so I will post again in summary :) The medication that worked was amitriptyline. Before that I tried gabapentin (nerve blocker), lyrica (antidepressant used for nerve pain), myrbetriqe and oxybutynin (prescribed by a urologist since I had 24/7 urethra burning), ativan (used as a muscle relaxer) and one other that I can't recall the name for. As you can see, I had to be willing to work through a lot of different approaches before I landed on a medication that helped. That's at least 6 different treatments that did not help, but as I said, people have to just keep trying. 

    I now take amitriptyline once per night. About a month back I moved to a higher dosage, which helped the last of the nerve pain that was left over. I will need to be on it for about 6 months in order to sustain relief, according to my doctor. 

    The nerve damage is believed to have been caused by a bladder infection that went untreated for too many days. I had frequent urination with no pain, so I opted to self-treat with cranberry pills and over the counter medication. After about a week with no improvement, I finally went to the doctor. The bladder symptoms improved, but not before the burning pain in my urethra settled in. Paired with the medication, I am also doing pelvic floor therapy at a women's clinic, as recommended by a gynecologist. 

    My symptoms began nearly a year ago. I had constant pain that did not improve for almost an entire year. It wasn't until I started physical therapy and amitriptyline that I experienced relief. 

    Edited by looking_4answers

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    @looking_4answers Thanks. No, you didn't mention anything what I asked about in previous posts.

    Anyway, thank you, Wilso, for nice story.

     

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    18 minutes ago, looking_4answers said:

    @MoniqueLow Yes, I did, it's still posted above, feel free to take another look if you'd like.

    And just to be clear... you think I'm @WilsoInAus?

    Yes, 100% sure ;-)

    Edited by MoniqueLow

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    Wow, OK. For anyone else who comes to this thread, herein lies the problem. Paranoia and distrust just based on random beliefs, means you'll never be able to get to the bottom of the problem. 

    This picture takes away a little bit of my anonymity (barely), but that's OK. @WilsoInAus, I guess you flew to California, visited a bunch of doctors, and were able to get prescriptions filled in a US pharmacy (note the area code and zip code), of multiple medications that I mention in the thread, under a girls name, just to make a point to @MoniqueLow.  

    For anyone else that has any real questions, please let me know. Monique, I'm sorry my post wasn't of help to you. 

    Screen Shot 2017-11-14 at 9.11.07 PM.png

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    @looking_4answers, because you write like him. Also your other post is about reinfection topic (you don't mention anything about your struggles you described here) which is Wilso's favorite.

     People who test negative are for sure searching for answers with their doctors and trying to find relief for their health issues. Even those who are diagnosed are trying to find out if their symptoms are or are not hsv related. Nobody wants to have genital herpes, so everyone is trying to find other cause. This discussion is to help answers, but it doesn't.

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    @MoniqueLow Oh, and I forgot my unfinished gabapentin, Rx only topical cream, and hydrocodone from the days when the nerve pain was so bad it was the only thing that offered (very temporary) relief. So, if I am Wilso, I must have gone to such extremes that you ought to at least hear "me" out. 

    If I write like @WilsoInAus, I take that as a compliment. He is only introducing logic into the conversation in an attempt to help people. He helped me! If he hadn't been sticking himself into half of the conversations on this forum, I never would have stopped thinking I had HSV, and I never would have gotten help. I would have just gone along with everyone else thinking I was just one of the "many" undiagnosed cases. I know you may not like Wilso, and I know it's frustrating when someone disagrees with you, but posts like his and (hopefully) mine are there to offer a glimmer of hope. That's important to people. I was in so much pain for so long, and I didn't believe it was ever going to end. People come to forums to ask questions, and then they rarely come back when they find an answer. I found my answer, and I wanted to encourage people to keep seeking theirs. 

    On my other post, I will share the backstory quickly. My friend that I reference in that post has had cold sores since they were a small child. When I thought I had HSV, I spent more time than I can describe reading articles, website, forums and literature on the topic. I felt like I'd read EVERYTHING, and as I knew they had the virus, I confided in them through my struggles. One day the topic of reinfection came up, I said that was not a necessary worry, and they were skeptical, so I said I would post and see what people had to say. I wasn't ready to share my story then. But some of the discussions I've seen lately, with so many people giving up hope, and just trading stories of suspected undiagnosed herpes, I hoped that I could share my experience and it could help some people, and if nothing else, just give them a little bit of hope that they won't be in pain forever. 

    Anyway, I'm not here to argue and prove myself, I truly just want to help. I know I wish I'd seen more posts like mine as I was struggling over the last year, so I'm just trying to pay it forward... 

     

    btls3.jpg

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    Thanks for sharing, I have genital herpes and the urologist has prescribed me ametriptyline also for my consistent burning and irritaiton of meatus urethra.  Hopefully it will heal my sensitive penis now so that I can be a normal herpes sufferer and get outbreaks every once in awhile.  

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    @looking_4answers well, you can continue, but your post is fake. To write like Wilso is not compliment. He disrespect many people here and is known for his long nonsense posts regarding atypical symptoms, reinfection and neuropathy. 

    Edited by MoniqueLow

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    @MoniqueLow I agree with you wilso likes to give diagnosis and dismisses a lot of people's symptoms. But this girl may be on to something. Some people receive false positives and think they have it and others freak themselves out into believing they have it. It's good to make sure and test multiple times if you fall in false positive range.

    While nerve pain is a real symptom of hsv it is uncommon. It does those people no good to have people without hsv to think they have nerve pain from hsv. It makes their cases not taken seriously. 

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    We'll have to agree to disagree. What's ironic is that your skepticism is the very thing this post addresses, so your responses actually help the cause... oddly enough.

    I won't engage any further because I'm not here to force your hand, I simply want to help people that were in the position I was. 

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    @MoniqueLow Its difficult. I know of people who tested negative for years until getting a swab and testEd positive. The tests are unreliable

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    I don't mean the people's health issues in genital area are always related to herpes, of course not. As of my various experience with doctors, if there are atypical symptoms, herpes is the last to be considered as a cause. No doctor would believe it's herpes unless lesions are presented, they don't believe in herpes caused constipation, UTI symptoms, nerve pain...So I think it's generally the other way: herpes is more often diagnosed like something else - pelvic floor disfunction, prostatitis, UTI, vulvodynia... So if people test negative and search for the answer with doctors help, they usually get some diagnosis after all which may be right or may not. It's easier if ppl recall exposure event, but sometimes herpes can wake up after years and years of sex abstinence. Then it is very easy to misdiagnose.

    Unfortunately, tests are very unreliable, especially in case of hsv 1. As in this article:

    https://www.thehairpin.com/2013/11/how-i-found-out-i-didnt-have-the-herpes-id-been-living-with-for-four-years/

    “Sometimes the antibodies for herpes just go away, and blood tests can no longer detect them,” she told me as she closed my file.

    Edited by MoniqueLow

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    Except that article explicity states the IGM test was done on that woman which is meant only for infants and is not meant for adults, even though Drs will still order it. The next Dr she saw did a IgG test on her that was what came back negative. I read that particular authors articles when I first became concerned I had contracted HSV2.

    The fact you come into a thread that does not even mention you and insult someone who realized they had a completely different problem (that is very prevalent in the female population and is incredibly debilitating, Pelvic Floor Dysfunction) is really disgusting.  There are people on this forum who may have both issues going on, or may actually have only PFD and information like this is very important to have, since there are not many people who talk about PFD and how painful it can be due to everything it can affect.

    I also turned out to be suffering from PFD and physical therapy is what finally made my horrifying pain stop.

     

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    I originally got my swab and bloodwork done. Somehow they managed to lose BOTH. So I retake the blood exam and then yesterday I get a call back saying my results were negative...but to come back when I get another outbreak so they can swab it again! So annoyed :l

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    I want to thank @looking_4answers for this post. I hate to see this infighting among the people on this board and think she presented enough evidence that she isn’t @WilsoInAus but that is neither here nor there in my book. I haven’t posted here in a long time. I came here with an issue that presented itself shortly after protected sex with a casual partner. These issues continue to this day. Burning, irritation, uncomfortable sensations...you name it, I had it. What I didn’t have was sores or leisions to swab (though I did have a pcr swab of irritated areas). I know that isn’t the stand alone symptom, many people never experience a “classic” outbreak but this was the first place I came where I felt hopeful. No matter what, I felt like I was offered good advice and the fear, while still present, was replaced with knowledge. I applaud anyone who can open up about their experience and offer insight. Too many times I will read a thread, full of fear and anxiety from the poster, and they never return. I think @WilsoInAus does a huge SERVICE for a lot of people. Testing isn’t foolproof, for HSV it’s not a perfect science but his continued encouragement for people to delve deeper into their results, or seek alternate tests, is sometimes just what someone needs. You may not agree with him and his POV might be more black and white, but I trust his knowledge of the tests. 

    It’s hard to trust results when your body is beating the hell out of you and sensations and symptoms keeping pulling you back in to an unstoppable train of anxiety but there comes a time when we have done all we can and need to try to move forward. I myself have had 2 IgG tests. Both negative. I didn’t believe them. I decided to do the Western Blot, 6 months post exposure. Negative for both types. Why am I still here? Because my brain hasn’t caught up with my results. This has consumed 6 months of my life. It will take more than a week or two to be able to press forward, especially when I am still dealing with lingering issues. Hopefully the specialist I will be seeing will be able to, like @looking_4answers, give me some direction and a new perspective. Until then, I will quietly lurk (less and less, I hope) and continue to be amazed how a group of strangers can come together and provide such amazing knowledge and compassion to those scared of the unknown. Someone like me. 

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