Tests say Negative, Anxiety and Depression Won't Let This Go :( I don't know what to do next...

First, I want to say that I’m tremendously grateful to have stumbled upon this forum. I admit that I found it through endless web searching after fearing I’d contracted herpes. Before I get into my story, I should say that the reason I’m so glad this community exists is because for the first time in months where I was making myself sick with worry over a possible positive diagnosis, reading the posts from many of you made me realize that while I certainly don’t want herpes, I need to stop thinking that the world would be over even if I did contract it! That may sound like a simple thought to many people, but it honestly didn’t seem like an option to me that life could go on until I read many of the posts here. So thank you again! I apologize if my post is disrespectful as I know you should have confirmed herpes to be here, but... I hope it's OK that I'm here.

My story: I have actually repeatedly tested negative for HSV1 and HSV2, but I am curious how likely it is that I’m receiving false negative results? I’ve read the stats endlessly, but my symptoms don’t align with anything else and I am hoping that talking to people who actually live with and experience the symptoms of HSV, you would be willing to share your thoughts.

My exposure is a single, protected vaginal encounter (I am a female and there was no oral sex). About a week and a half after having sex, I developed a UTI. I went on antibiotics, and while the frequent urination that alerted me to the UTI subsided, I developed a constant burning in my urethra; the burning was more a nerve-like pain, not a burning sensation on the surface of the skin, and there were no ulcers or breaks in the skin (no pain at all while urinating). This lasted for two months, non stop. The pain then began to move, and is now focused in my perineum/anal area and persists, 4 months later. While the pain occasionally moves from left to right, it is primarily only felt on one side. I’ve also had a general tingling/burning in my vaginal area. I have been examined by my primary care physician, a gynecologist, as well as a urologist. I took IGG tests at 2 weeks, 10 weeks, and 16.5 weeks after exposure. I am showing negative (<.9) every time. After my 10 week test, I had diarrhea for about two weeks (sorry, TMI). I then had what I otherwise probably would have thought was a fissure/tear from constant wiping, but in combination with all of my other symptoms, I assumed it was a herpes ulcer, and that my tests just weren’t positive yet. I couldn’t get a swab done, because the cuts simply heal in one day, like a paper cut! It was never particularly painful, just stung a little bit when I wiped. I spent the next weeks convinced I had herpes and was really trying to accept it. Then I had my 16 week IGG test and couldn’t believe it was negative!

At this point, my doctor thinks I am a hypochondriac and is quite unsupportive of me and any further testing. I should mention that I suffer from depression and anxiety, so this isn’t particularly helpful. I am on fine terms with the person who I slept with, though we are no longer pursuing anything romantic, and especially after showing him my negative IGG results, he says that he had no reason to suspect HSV before, and has no reason to test now knowing I've tested negative. It sounds sketchy, in one light, perhaps that he may think I "escaped" his infection, or if he truly sleeps with so few people that *I* was his only worry and I shared test results, he might be concluding there's zero reason he should pursue testing himself if my tests say I'm negative!

I guess what I’m asking is, do you know people who have seroconverted after 16 weeks, being negative for HSV1, and never taking any antivirals? How likely is it that my blood tests are showing a FALSE negative ELISA at 16 weeks?? And if not herpes, what in the world is causing mostly single-sided (left) nerve pain, quick healing cuts/fissures, all of which began shortly after a new sex partner?

Just to repeat, I get a paper cut like lesion, it develops only after constantly spreading the skin to check what's going on throughout the day and it begins to heal within hours after I stop touching it. No blisters. No ulcers. No extreme pain. But again, none of this existed prior to the new sex parter, or prior to the UTI.

Any help before I drive myself crazy? I don't know what kind of doctor to see next. Sorry, one more relevant detail: I have been checked for yeast and fungal infections, all negative. I currently have 3 doctors stumped :(

So herpes testing is quite shady. There's a chance it could be a false result, but after running 3 tests and being negative it's about time you hung up the gloves. You've acted overly responsibly, and now you should give yourself a break. What are you getting out of worrying about it anymore? I've been in a similar spot after I was positively diagnosed. I thought I'd developed some neuro disability or cancer and was about to die any moment, wasted a fair amount of professionals time. What a waste of time amd energy that whole thing was.

Tingling/burning is one of the most common effects of health anxiety. And I imagine youre stretching that skin 100 times a day which could cause the tiny tears.

This thread was handy for me:

http://www.nomorepanic.co.uk/showthread.php?s=dde3f5dcdd13e008ab5f0e1caf38c41a&t=42556

I suspect your anxiety is contributing to what seems to OCD over contracting herpes (yes, I have OCD too and was devastated when I was first diagnosed)

Due to false positive and negative results, to be sure, they say to wait 6 months to be tested.

I recommend going to an std clinic and do that, just to ease your mind.

Hang it up after that and move on.

Cut yourself a break, chalk it up to a lesson, and live your life while taking precautions ;)

Thanks for sharing that link, @Sil88. It has helped me to better understand what my mother is going through. The mind is indeed a powerful thing.

Hey, good news for you. There is basically 0 chance you have herpes.

Hav2 almost always comes up by 16 weeks. Very rare that's not the case. You've also repeatedly tested negative.

Hsv1 has many more false negatives, upwards of 30%. Someone who has a false negative is more likely than another random person to get another false negative, but still, your repeated negatives are good. Additionally, it is super super rare to get genital 1 without oral sex. Especially with a condom. It's all but impossible.

So you can chill out assured you are negative. Be grateful and feel confident you can forget the issue.

Lastly, for what it's worth, your symptoms don't really match a "classic" outbreak.

You don't have herpes now, but if you have sex with more than three people in your life, then you will come in contact with it. If you kiss pretty much anyone, you will come into contact with it. If you let anyone give you oral sex, you almost certainly going to come in contact with it. The good news is that it's not a big deal. You can keep feeding the stigma by making a bigger deal than it needs to be, but it sounds to me that the issues are dealing with have nothing to do with herpes (anxiety and depression) and were there before you ever thought you had herpes.

I have a theory that there are at least as many pharmaceutical company shills posting on herpes forums as there are real people. The goal is to maximize profit by keeping the stigma alive and well via fear mongering. And then throw in the possibility that the small majority of people who get extreme symptoms are more likely to post in a herpes forum, and you get a picture of herpes as a terrible nightmare. The reality is that the vast majority of people who have herpes don't even know they have it because they get zero symptoms, so it makes sense they wouldn't post anything at all on herpes forums. Then most people who donget symptoms don't have such a hard time. We have to keep the whole picture of what herpes is in mind and not just focus on the tiny corner of the frame that is dominated by horror stories and likely fake accounts from corporate bots.

@Sil88 Thank you so much for providing that link, there were a lot of helpful insight there. As for what I'm getting out of constantly worrying about it, nothing. However, I think what I failed to articulate is that a pain had persisted, non-stop, for months on end. If there was no pain, I suspect I'd be "over it". That said, the link you provided has really made me take a closer look at what degree of my pain is legitimate, and how much is exacerbated by my anxiety.

@Bambina3 I suspect there's a lot of truth to what you said! I knew anxiety was an issue for me, but I actually hadn't displayed many characteristics of OCD until this ordeal surfaced, and it is definitely something I am exploring in therapy. I will likely test at the 6 month mark, however I don't want to fuel the behavior by compulsively testing when I've already received 3 negatives, albeit only one in the first 'true definitive' timeline. I appreciate your comment and find so much value and comfort in the wise words and supportive nature of this forum :)

@JeffH Haha, thank you, the definitive tone of your comment made me smile, which isn't something I've done a whole lot of while trying to wrap my head around this pain and these symptoms! What's funny is, everything you've said, I've read a hundred times over the months. However, having those words specifically directed at me actually really helped ease my mind quite a bit. Now, if not herpes, the question is just trying to figure out what actually IS going on. Thanks again for taking the time to write.

@hippyherpy Thank you for the detailed reply and your thoughts on the larger picture. I'd hoped I'd indicated as much in my initial post, but I want to say again how much this forum helped me come to realize how much I agree with all you've said. I get that the stigma is the problem for the most part, and not the infection. However, the reason it feels like a huge deal, is because IF what I have been experiencing is due to herpes, it means my symptoms are quite atypical in that they've caused nearly 5 months of non-stop pain. I agree a short lived skin irritation every so often probably isn't a big deal, but that hasn't been my personal experience (granted, I understand it's unlikely - if not impossible - that herpes is causing my symptoms). I just wanted to clarify that my anxiety isn't entirely driven by the stigma, but rather this unexplained, persistent, 3 doctors and 3 tests later, pain :( The great thing that came out of this is undoubtedly finding my way here, and knowing that as common as herpes is, it isn't worth fearing and missing out on connecting with great people. Thanks again!

I always say that you cant go straight to herpes if something is wrong with your vagina. After a bad UTI you can get what is called interstitial Cycstis basically your bladder becomes inflamed and it feels like you have a constant uti even though you have no bacteria. It can also cause pain around the opning of your urethra. There are also a million and one other things that can be wrong. If you are really curious you can go on Valtrex and see if the symptoms clear up. But i would focus on working with my doctor to figure out what is going on. See if there is a vulvar pain clinic in your area and stop worrying ! I know it is hard but it can trigger all kinds of vulva issues.

I second the above! As someone who has dealt with vulvar pain issues, in which the main symptoms were itching/irritation/burning, I can attest that not all symptoms are related to herpes. Which is good news :) try googling vulvar pain disorders and vulvar skin disorders. These are conditions that the vast majority of the population knows nothing about, until it happens to them. I was in that population when it happened to me 8 years ago

@ash2018 Thank you for responding, and I'd also just like to say that as I've browsed this site, your optimism and willingness to chime in to help people brings such a smile to my face! It's people like you (and many others on this forum) that keep me feeling so hopeful despite the scare and uncertainty surrounding my status.

I actually had an appointment with my gyno yesterday and was able to ask about other vulvar pain issues, and now have a referral to a specialist, which will hopefully help me get to the bottom of this one way or another. Thanks again, and keep being awesome! :)

@Neewbiehsv1g That is awesome advice. Our vaginas are so complex, but I guess it's just easy to go down an STI spiral, especially when something changes after a new partner. I've read quite a bit on interstitial cystitis and consulted with a urologist some months ago, so that has been ruled out. That was a relief, but of course not having an answer for ongoing pain is still frustrating. I am heading to a specialist soon and am looking forward to hearing their take. Thank you for replying!

@endlessworrier that's great news! I'm glad that you're going to get the help that you need :) also, if you don't like this doc or what they have to say, don't give up. I drove 3 hours or so to see the first specialist I saw. I saw him twice and did not care for him at all. I actually left his office in tears the second time and vowed never to go back. I found out about one an hour away from me via a support group for vulvar pain disorders (which I can refer you to if you're diagnosed with a condition and would like more support for that) and I absolutely love her. I see her at least annually to this day. I'm seeing her August 9th and can't wait.

And thank you, that really means a lot to me! I've been trying to be helpful to others, even when my mental state is at its darkest, as it has been on random days. It can be discouraging to post and not get any input yet see that your post is being viewed. So if I have something to offer, even just support and to tell them they're not alone, I try to comment