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

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

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 !!!
3 Responses
1081992 tn?1389903637
COMMUNITY LEADER
“nothing wrong with me”
That's often heard by patients with an unusual immune system condition. They might even get sent to a psych.

What you have sounds like overactive mast cells. VERY overactive. So when your yeast or bacteria infection acts up, your immune system goes into hyper overdrive, especially in places where the mast cells are most numerous: the skin and the mucosa.

MCs excrete histamine, which causes itching and redness. MCs also produce over a hundred other bioactive chemicals. MCs can react to to a huge variety of things, from chemicals to heat and cold, dust, pressure, etc. Symptoms can vary tremendously, person to person.

Have you ever taken Benadryl (which is an antihistamine)? Tried topical antihistamine or cortisone for symptom relief?

How's your stomach?

Do you avoid sugar?

You know what the piriformis is, so I don't think you are sedentary. It's not unusual for very fit and lean women to come down with an immune condition - but not talking necessarily about autoimmmunity. There is such a thing as auto inflammatory.




Avatar universal
I’ve tried Benadryl a lot and doesn’t help — I’m at a loss

Part of me questions hormone imbalance or a deficiency in something ?
1081992 tn?1389903637
COMMUNITY LEADER
"hormone imbalance"
Do you have amenhorhea? If you are super lean, that's not healthy and could be an aggravating factor.

Deficiency? A nutritional deficiency might be an aggravating factor but I'm not personally aware of how that could be the primary cause.

Unless you mean an immunodeficiency, which could explain uncontrolled episodes of infection. But that would be rare enough to not be looked at unless other causes are ruled out. I wouldn't accept at this point that an infectious etiology has been ruled out.

I'd want to get the gut straightened out first.

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