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Desperately seeking advice about my symptoms

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I have been jumping around from forum to forum looking for answers, so if you recognize me-- I apologize about the repeat posts but I am so stumped and it seems there are a handful of people on here with atypical symptoms that might be able to provide some insight.


I'm 23 and female. At the end of Sep 2017 I had my first ever sexual encounter and drunkenly allowed someone to perform oral sex on me unprotected-- it lasted all of about 2 minutes. We didn't see each other much afterward but I did learn he's had around 50 partners. I've always chosen to be abstinent and my first time giving in... this unfortunate thing happened. I just finally got him to take a blood test and it came back positive for hsv 1 although he says he's never had a cold sore.

1.5 - 2 months after I got this itchy red patch on my inner thigh that stayed there for about 1.5 months. It was a little bit raised, flaked and scabbed a bit, and expanded. I think the scabbing happened because I scratched it until it potentially bled but I'm not sure.

https://imgur.com/IcMLamK   (was like this for about 2+ weeks before turning into the next picture)

https://imgur.com/SkRvJWU (only looked like this for a few days I believe)

https://imgur.com/NcT0FY6 (slowly faded and was like this for several weeks)

A month or so into having this rash, the feeling of my pubic hair became unbearable and itchy. To this day it still needs to be shaved all the time. My skin also started inflaming from waist down, with burning red patches appearing whenever I add pressure. At the start of this I would lay in bed and feel burning neuralgia from my waist down. My skin gets indented by clothes, chairs etc so easily now. This is the side of my hip after laying down for a few minutes https://imgur.com/y0syXzs This has been chronic

In Jan I got the flu with congestion, back ache, headache, fever. It was going around my office though. I got super watery discharge at this point. I would stand up and it would just gush out. This discharge lasted for a few months but then my body started to balance out again. I had weird brown spotting at times too and my cycle has been off, it used to be very regular. Recently the discharge happened again for a little while. I would have on and off lower back pain and headaches too, especially during Jan and Feb. I've experienced some discomfort in my groin area too that comes and goes, a bit of an achy feeling but I'm not sure I'd say it's exactly swollen lymph nodes. It's like there is swelling in my pelvic area but it's more just like a feeling of unwell. Coincidentally I had an ultrasound scheduled while these symptoms were going on and I asked them to check my lymph nodes as well, so they did. My doctor reviewed the images and said they were not swollen.

It seems there's always some random bump or another cropping up. Recently i've had this (see below), which I realized looks just like and is in the same spot as something that showed up in April (there were more little ones that have since gone away within a day). Each time these goes away so quickly

Recent: https://imgur.com/t4RSV6T (it's still a tiny tiny spot 13 days later and peeled a bit at one point)

April: https://imgur.com/ulygKJb

I can hardly wear any even sightly tighter pants because my thighs itch and feel like they're burning. Sometimes I get random all over itching everywhere on my body. I've also had rashes on my ribs.


Other random concerning images over time:

Further away from my vagina, closer to my bum. I believe I picked at this https://imgur.com/HKAjk5c Recently this same area has been bothering me and feeling tender but with no redness or bumps at all.The irritation is still slightly there today, it's been about 5-6 days and I think I've had this feeling once before months ago. Could this have been an outbreak and now this feeling is prodrome that just hasn't manifested into sores?

Occasional red spots https://imgur.com/DVPp6HQ

On my hip (I had something similar to this PCR swabbed and was negative) https://imgur.com/a/pp8V3bY


I got tested via IGG 5 times varying from 9 weeks - 10 months post exposure, always negative for both types. Knowing the possibility of a false negative HSV 1, I did a Western Blot at 21 weeks that came back negative. I want to believe my blood tests but I can't figure out what on earth else could be wrong with me. All the doctors are stumped. I've read a handful of cases about people who continuously test negative (especially for hsv1) and I can't help but think that I'm one of those people.

I never got the original rash swabbed, doctor's told me it was a bug bite, eczema, fungal, you name it. I had some PCR swabs done at a free clinic of some bumps that ended up being ingrown hairs, an anal fissure, and a random blister/bump on my bum. They didn't offer internal swabs so I went to another clinic when I noticed a red abrasion inside my vagina and slight discomfort urinating. They did PCR swabs on two occasions of this that were negative internally. On my own expense, I sought out another PCR internally for the redness when I was having many symptoms, she also reluctantly swabbed my hair follicle that had some redness. Negative a well.

I had 2 punch biopsies of my pubic hair area done, and my derm said if herpes was causing it the test would have picked it up. It simply came back as "inflammation" and she said I likely have hyper dermagraphism or pressure urticaria although odd that it would be pretty localized. Antihistamines don't help except possibly relieving some of the thigh itching. I've read online about a connection between viral infections and chronic hives although they don't really seem to be chronic.

I'm currently in a long distance relationship with someone who I really care about, and the thought of giving him this accidentally once we're hopefully ready to be intimate scares me. I'm living back home in Canada for a few months (most of this unfolded in California) where PCR swabs aren't offered. I honestly don't know what to do anymore. Spinal tap? Nerve biopsy? I just feel like I've already gone above and beyond. I'm hesitant to try taking antivirals because I'm a very anxious person and worry that if I'm having a few better days I might just associate it with the medication even if it's not actually helping and make my anxiety worse, plus I won't be able to get them since I haven't tested positive.

Any idea what on earth is going on? Chronic pressure urticaria from my belly button and down--mostly stopping at my knees, nerve issues, itching, watery discharge, bumps, rashes, swelling... it sounds like herpes to me.

I've been thinking I might have lyme disease and that rash on my thigh was a bug bite. I tested positive for lyme via Igenex, but it seems odd to have so many vaginal symptoms associated with it (there are also many other symptoms not mentioned here-- the list is quite long)


Thanks for any insight and sorry for the novel.

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I did post on the forum there and speak with Terri a bit, she didn’t seem to think this was herpes related and I’m sure after she learns of my negative western blot she will say that I need to move on with the thought that this is herpes.

Just thought I could get some insight here if anyone can relate to parts of my story etc? Or knows something else that this could be?

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5 minutes ago, SeeingClearly said:

I have GHSV1 and have had all the exact same burning symptoms from about my belly button down to my knees. Especially burning on my thighs and the same hair itchiness and irritation. I know that doesn't help much considering you keep testing negative.

That makes me really nervous... how were you diagnosed? Did you have a primary outbreak and sores and stuff? Is the irritation constant and does your skin get red like an allergic reaction? Do you constantly have to shave?

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I was diagnosed by a swab of 1 single lesion. I didn't have a typical "flu like" first outbreak but mostly had that kind of nerve pain. The burning I believe is your nerves trying to sort the virus out when in relation to hsv (correct me if I'm wrong). My primary out break was in July of 2018 so it's still fairly new in my body, I believe I contracted it in early June but I can't be sure. The irritation isn't constant it it's almost like my pubic region will feel inflamed and itchy, for me not shaving is better or shaving downward to keep the hair short but not cause further skin irritation. The burning for me comes and goes and I have found there seem to be things that set it off, like alcohol and citrus. But over time it is getting better. Are you constantly experiencing symptoms?

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I see... did the lesion open and have fluid and what area was it in if you don’t mind sharing? I’ve never had like a real blister per say. For me I would have been infected at the end of September 2017 if I do have HSV. This has been constant since December. 

Some days the burning is better or worse for me but it’s pretty constant. And my skin inflaming like an allergic reaction and getting red when pressure is added is pretty constant. Nothing really changes it or sets it off for me. The burning is worse when I’m wearing tight pants, a lot of the time I’ll get like an icy hot feeling from my belly button to me ankles when I’m wearing tight pants. I’m not sure if we’re experiencing the same things?? I’m so confused 😞

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I was having symptoms like I had a UTI for about 3 weeks but the doctor was telling me I was negative. They still gave me antibiotics so I thought the antibiotics caused me to have a yeast infection because I was super itchy. There was 1 very itchy spot on my outer labia. I scratched it until it bled and took a picture of it and it was a perfect circle. That's when I kinda knew what it was. But it was never a blister and it never had fluid in it. It just slowly faded and healed.

i thought all the burning etc was prodrome but my doctor said my body probably just needed some extra help fighting the virus and put me on suppressive antivirals.

I get the icy hot feeling too but on my tail bone. It sounds like a lot of nerve related issues like mine. I couldn't wear tight pants for a long time and honestly when it's burning I'm most comfortable naked. I understand how frustrating this must be, when I have symptoms and they last it just reminds me that there is infact something wrong with me, but at least I have a diagnosis. I can't imagine how hard it is not having answers. I also deal with anxiety and depression and know that when I'm having a harder time mentally the physical symptoms become a lot more apparent. Hopefully we can find ways to calm our minds and inturn calm our bodies.

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Oh man, I’m so confused now. I thought I might finally be coming to terms with this not being HSV1 but now I feel like I’m right back into it. 

So you’re taking daily suppressive antivirals now? Maybe that’s why your symptoms have started to get better? I’m assuming you had a PCR swab done of that spot and not a viral culture then given the nature of the spot on your labia?

I’m curious about about these UTI symptoms because I had a doctor try and tell me that’s what I was experiencing too... did those symptoms start before the sore? How soon after exposure? 

I’m sorry for all the questions I’m just really lost and confused and have been dealing with this for almost a year now. All those nerve sensations and stuff, those were before the antivirals and then they started to go away once you were on them? 

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I totally understand I was very nervous and scared but once I accepted that this is what it is I felt much better. I know that's hard for you to do without any solid answers.

yes I take 1000 split in half of valtrex every 12 hours. I started the suppressive dose shortly after finishing my initial 10 days for the first outbreak. My doctor wants to cut back to 500 mgs a day eventually but I'm scared the symptoms will come back worse if I cut it back. I haven't had any sort of other outbreak since the first. The burning and irritation was really severe for the first 6 weeks. And now it's more bearable so I think either my body is sorting it out or the valtrex needed some time to kick in. It's really hard to know.

I'm not sure what type of swab it was, I'm in Canada too and just went to the sexual health clinic where they swabbed it and called me with results. In hindsight I'm very glad they were able to tell me hsv1, I had just assumed it was hsv2.

The encounter I believe was June 2, UTI symptoms (felt like I had to pee but had nothing left to come out, that's the only typical bladder infection symptom I have) on June 26 and they were persistent until July 12. I had my first outbreak on the 17th.

We are the number 1 advocates for our health and I'm sure everyone here can agree that we let ourselves down in some way to contract hsv and put a small portion of our health in jeopardy. I would just say every time you have anything weird and bump lump etc go get it swabbed if you can. I really hope it gets better for you, the nerve pain can be terrible. 

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I agree with Terri Warren.  Your symptoms are not caused by herpes and while this forum is great for support, it does a disservice to individuals not diagnosed with herpes.  A negative Western Blot test essentially excludes herpes ( a rare false negative test does occur, but you have had no classic symptoms to suggest this is a false negative).  You have likely picked up a skin infection unrelated to herpes.

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Yeah if it's been since last year and you're still testing negative for both hsv's and uv tested for it numerous times then u should at least rest easier about the thought of it being herpes. U did blood test at least 3 months after wen u think u were exposed right?  And u said u did test positive for Lyme disease? 

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I didn't see or read anything suggestive of herpes, and I'd say you've dealt with it thoroughly enough to deserve a rest mentally. The single pimples, ingrown hairs or little rashes are so common.. and I know from personal experience that once you start examining your own body daily, you will find a lot of things that usually go under the radar. Lymph nodes were an obsession of mine, an album stuffed with photos of dots or scratches.. I realised that probably half of my symptoms were caused by the stress I was causing myself. Having said that, there's a chance you could have picked up a random insignificant virus that triggered allergic reactions. If you can live with it, and accept that it's not the dreaded herpes, I would hope that your body (or mind) will adjust and overcome them in time like it has for me.

Btw, I'm not being dismissive by mentioning anxiety, just have a read of what people post on here:

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  • 1 year later...

Hi Exhausted Girl, did you ever figure out what was causing the symptoms? Or did they get better? I also keep testing negative but acyclovir seems to help somewhat and I think I have given this to someone else now. So frustrating as I only started seeing them since I kept testing negative. I had been 2 years for me now. 

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