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Help - no idea what’s going on with my body

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 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 rested —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, 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 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 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, 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 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 ?!??
1 Responses
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134578 tn?1693250592
Frankly, it doesn't sound much like herpes to me. It sounds more like an allergy or autoimmune type of reaction, maybe not lupus if you insist it isn't, but something like it. My aunt got lupus flare-ups if she was in the sun a lot, and it took a whole lot of detective work to diagnose her in the first place because the lupus wasn't typical.

Your ob/gyn looked right at the redness and swelling and didn't think you had a problem? Going to a different doctor is smart, there is nothing more frustrating than having a problem and having the doctor shrug it off.

Helpful - 0
Thanks for the feedback.   I appreciate your response.  I definitely have a rash that stings and burns — it’s daily though.   And doesn’t look like HSV!!!  

I have my fingers crossed for better results with the internal specialist!!!

Cheers !!
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