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Severe vaginal itching, swelling, symmetrical rash, stinging, genital cramping, fatigue, weakness

Hey everyone —hoping someone on here has been through something similar and can weigh in

Dated a guy - serious monogamous relationship that ended 18 months ago.

— I’ve ALWAYS had some slight vaginal itching that just never went away

About 8 months ago (10 months after any sexual contact) the itching got really severe.  When I would wipe or touch it it would get worse leading to swelling.  Over the summer (convinced this was heat related) I developed a rash down there. Symmetrical - I can only describe it as my skin looking like bright red textured leather,  it itched it stung — hurt if fabric touched it,   Did a phone call with my dr (covid - no in person apts) who thought yeast or bv and prescribed fluconazole, flagyl and said to buy canestan.   The meds had no effect.   Tried canestan —- the cream only burned my skin further.   Tried a “tab” and biggest regret ever.   Intense cramping and what lead to the most intense pressure in my rectum that left me in agony.    3 days later I’m at work and I go for my walking break with my friends.   I’m 5 minutes into the walk and this sensation comes over me that nearly drops me to the ground.    The most INTENSE itching/stinging feeling in both my vagina and rectum.     The more I walk the worse it gets — I was too embarrassed to tell my friends or stop a 5 min walk (esp cause now I have to get back to work).   As I’m walking I can literally feel myself swelling up and a hemmorhoud being formed.   Went to the bathroom and there was a tiny drop of blood from my rectum.

Went back to the doctor - got STD tested —swabbed, examined — everything came back negative. She thought an allergic reaction told me to switch laundry detergents.

Next month mid cycle (when I’m supposed to ovulate) I get flu like symptoms — fatigue, weak gross feeling.   My lymph nodes are swollen itch that nearly drops me returns. The itch is unbearable.  This time I notice a cut below my vagina opening and below my clitoris.  Tried to lay down and rest as I felt awful — when laying down I lost sensation in my lower legs / feet felt numb.   I freak out and go back to my doctor.  With covid by the time I see her — it has healed.   Now I’m starting to get other symptoms like a rash on my elbow and foot, diarrhea/gas,urgency.  — urethral pain that feels like a UTI but actually is relieved when I urinate / no burning when I pee.  Rectal itch / pain is still there to this day and looks like an internal thromboses hemmorhoid with fissures beside it — won’t heal.  
She examined me again.   Did another set of swabs and urine tests — everything negative

Next attack (mid cycle again the following month) — same thing.   Paper cuts and intense itching.   This time swollen stabbing pain in my lymph, right hand numbness, my muscles feel fatigued and just weak/HURT (esp glutes and piriformis).  I start having severe muscle twitches.  Full body every 1 minute.

I go back — I get examined.  I’m told I prob have LIchen Sclerosis.  I’m not on-board with this diagnosis.   I push hard for HSV blood work.     I’m terrified.    No lesions other than the cuts which have reappeared but given the other symptoms I’m now absolutely convinced it’s herpes.    My tests for HSV come back negative —both HSV 1 & 2 are NEGATIVE.    
However — my wcb count and neutrophil count both doubled since the prior months blood work.   My dr again dismissed me and sent me home as I’m negative and “nothing wrong with me”

Following month — during my next attack I’m waiting for it to hit my vagina hard only this time it lands in my NOSE.    The inside of my nose goes bright red.  Itches. Hurts / irritated.   Again swollen lymph with stabbing pain, muscle weakness and flu symptoms — I’m bed ridden for 3 days.  I wait for the cuts but this time my lips start cracking and I get 5 cracks on my Lower lip.  I have full body itching and the rash is back on my elbows and foot.

My eyes are currently itchy and water and I have an ear ache

I went back to my doctor one more time — after it hitting my nose I’m now convinced it’s HSV

She refuses to re-test me as I look fine, my sexual timeline (3+ months since contact) and she swears my blood work is extremely accurate given the gap between my last sexual contact

I argued something is clearly wrong and point out one more time my WCB count.  I’m now finally being referred to an internal medical specialist - as she thinks I have an autoimmune issue —— and suggested LUPUS?!?!?

Anybody have anything similar — based on my google search this doesn’t seem at all like lupus ?!??  I match all the herpes symptoms as per other blogs. I’m majorly stressed and miserable !!!
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207091 tn?1337709493
No, your blood tests aren't wrong, but what about Behcet's Disease?


It's rare, so your doctors may not be that familiar with it - we are in the herpes forums because it can cause genital sores - but since yours is systemic (affecting your entire body), it seems like it may be something like this.

Herpes wouldn't affect your WCB, either, and I'm not sure Behcet's would, but I found this - https://pubmed.ncbi.nlm.nih.gov/25527038/ I'm not sure how helpful it is, but it may be a starting point.

It could be lupus, obviously, or something else, but I don't think it's herpes. I almost wish it was, because herpes would probably be easier to manage.

The herpes tests are really reliable with not giving false negatives. You could always test again if you want to, but herpes also wouldn't give you systemic symptoms like this. It wouldn't give you symptoms on your arm, for example. Herpes infects nerve groups, so you'd only get symptoms in your genital area or your facial area. You might get nerve pain in your legs, but it doesn't ever affect the elbow, for example.

I'm so sorry you are so miserable, and I kind of wish I could tell you it's herpes and give you an actual answer as to what's causing your pain so you could figure out a way to stop it. I can see why you would think it is herpes, but your tests and body rashes say otherwise.

Oh one thing - Are you in Canada? (You said you took canesten, and I know that's what they call clotrimazole in Canada.) If you are, you're very lucky that you even got blood work in Canada.  Can you check to make sure it was IgG blood work, and not IgM?

Helpful - 0
Thank you so much for reaching out — I appreciate it more than words can even begin to express.    I think the stress of not knowing what this is, is equally as bad as the symptoms.  
I’ve been praying it’s not HSV.  — but clearly something is taking me down.

Yes I’m CANADIAN.   It was IgG testing. The thing that bothered me was I could tell from the lab paperwork it was IgG but my doctor wasn’t provided any figures from CDC - just “negative” .      She assured me that it’s accurate but I want to do another one beginning of Feb to be sure.  

I am now in a relationship with the most incredible man — I know he’s the one and I’m going to marry him.  — but I’m terrified to do anything with him.   He’s aware of the situation (sort of— obv it’s humiliating to be like hey I have no STDs as per all my test results but I’m in agony down there), I’m assured I’m negative and fine by my doctor BUT I would never forgive myself if I passed this to someone else.   I just need answers and fast.    I have an apt with an internal medical specialist on Wed so I’m crossing my fingers for an answer !!!!

Thank you for putting my mind at ease this isn’t HSV!!!  Cheers !!!
It doesn't matter what the numbers are for negatives. We are more concerned about numbers when it's equivocal or positive, because of false positives, or perhaps rising numbers indicating a new infection, but that wouldn't apply to you.

You didn't ask, but a piece of unsolicited advice - if your man is the one, let him in and let him help you. You say he's "sort of" aware of the situation. Make him fully aware. If he's your one, he won't scare easily, right? And I understand that you are still afraid of this being herpes - it isn't, but I understand the fear - so start small. Use hands as you're able, and obviously when you aren't in agony. (Hands never transmit STDs.)

And I should have thought about it before - the allergic reaction theory. It might not be laundry detergent, though that's often the cause. What about a soap or body wash or underwear or something else that touches your body? The toilet paper? Think of everything that comes into contact with your skin.

Let me know how this all turns out. I hope you get some answers. :)

Thank you so much !! I did allergy testing twice — negative!! The at home send away kit indicated I reacted to cheese but the one I did through my doctor was negative for dairy/lactose.

I have a phone consult tomorrow I’ll keep you posted. :)
Good luck, and I'll be interested to see how it goes. :)

Update — the specialist doesn’t think this is auto-immune and doesn’t really know what’s going on.   I’m doing a full round of blood work so hopefully something shows up (fingers crossed)
Oh I hope it shows something. Good luck, and keep us posted. :)
Update.   My internal medical specialist turned out to be a bariatric specialist (WTF?!?)—- who was majorly disappointed to find out that I’m 5’8 and 120 lbs.   and I exercise regularly / eat healthy.   Long story short all my blood work came back NORMAL and apparently this is “just my body coping with the pandemic” —- NO , I’m in agony!!!!!

I’m tempted to not wait for my bariatric specialist (who got both my birthdate and my drs name wrong on the requisition which was a lot of extra fun at the lab) to call me back and go find a brand new doctor but at this point I’m worried it’s going to look like I’m dr shopping as nobody believes me.      Sigh !!! Never thought I would ever be in this situation.  

I hate needles and if I have to do one more blood test / wait in the lab lineup ..... only to get no answers..... UGH!!!!!
Oh my god. What a mess. Bariatrics? How did that even happen? I mean, even if you were in need of that kind of care, that's NOT why you were at the doctor's.

And “just my body coping with the pandemic”? No, you'd be like the rest of us and would have just gained a few pounds and become a little lethargic. You don't develop sores everywhere and live in agonizing pain. The entire world is living through the pandemic, and the most anxious people I know aren't dealing with that.

"Doctor shopping" is a term used when people are looking for drugs. You are looking for a diagnosis. I'm a big believer in advocating for yourself in the healthcare system, but I also understand that you have to work within it.

Every time you get a sore, take a pic of it. Have a record of it for whatever doc you end up seeing. Take pics of them as they progress and heal. If you get one and it looks like it could be cultured, take yourself to an urgent care or walk in clinic and ask them to culture it for everything possible. If there is something that could be biopsied, ask for that. (You may get over your fear of needles by the end of this lol.)

Write down dates and track every single symptom. At least while you work through this, you'll have something documented.

I'm so sorry this is happening. :(
Oh and if you get a sore cultured - get seen within 24-48 hrs of it appearing, if possible.
Problem is I’m not getting “sores”
I’m getting rashes.    The cuts I’m getting only last a few hours.  They happen so often it can’t possibly be HSV?!? Diff location every time.  I’m convinced it’s a skin condition from an infection .  Combo of canestan followed an hour later by coconut oil (to moisturizer) has actually cleared up one rash —- I am convinced this is a systemic fungal infection that doesn’t ping as yeast.

I have hundreds of photos and shown the rash but they don’t know what it is.  Otyyyy

I guess I try to find a new doc while continuing with probiotics — and keep battling the daily irritation.    Sigh!!!!

I’ll let you know if I get some results
Ok update.      I think I’m now on the right path.  I just got a notification that my Vitamin D levels are super low

Low vitamin D coupled with my last results (during one of my attacks) with high wbc and neutrophils ..... hopefully this gives them some clarity ?!?
Okay, well now you're getting somewhere.

Has anyone tested the rash? Even if they can't culture it like a sore, they can scrape it or biopsy it. It might not answer everything, but might help.

Good luck and keep us posted!
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