WEIRD symptom????

[missy078]

This is very embarrassing:  About a year ago, before being officially dianosed with SJS, I developed sores on my vagina that the doctor thought was genital herpes.  I had a fever, aches, chills, and the sores developed.  I knew it couldn't be that!!  They did a culture and a blood test, both came back negative for herpes.  I had bloodwork done again (doctor said it might not have been high enough to show up in tests a year ago) and it's negative again!  She has no idea what it was.

I know you're not doctors, but.....my question is this:  since SJS causes dryness in the mouth, nose, and vagina, and it also can cause sores in the mouth and nose.....could what happened to me be related to the SJS? 

[Linda196]

Missy, it could be related to the dryness, but there is another syndrome along the same line...an autoimmune disease, that is difficult to diagnose, but could apply to you.

Look up Bechet's Disease, and if you feel it could apply, tell your doctor you want to be checked for it, if for no other reason than to rule it out.

[harrigan]

Behcets is a possibility, as is mucous membrane pemphigoid which causes raw sores and ulcers on the tissue membranes (eyes, mouth and genitals). My daughter was diagnosed after 4 long years where she was accused by doctors of pulling out her eyelashes and making herself sore down below.  It took a dentist with initiative and 2 biopsies before they came up with the diagnosis and eventually put her on CellCept which has controlled symptoms well, along with prednisolene.  Keep pushing for answers Missy and good luck, xx Ailsa

[djean87]

I also have problems with dark raised spots on vagina.have had since july 2008 when had first big flare after getting into tanning bed.doctor seems to think sjogrens and lupus can be causing discoloration spots as these something in compoarison to moles.also was checked doc says not gential warts or herpes either.they dont hurt,itch or change in size.but I try to keep a good track of any changes.between these spots on vagina and rash on face and arms is what made doctors start all the blood work for diagnosis of lupus,sjogrens and rheumatoid arthritis.my doctor seems to think stress related and possible viral infection related as usual not sure either.

[JannaLee]

Also Bartholan's Gland Cyst is a possibility that I think could be caused by Sjogren's Syndrome.

I also agree with djean, the fever and chills sound like a Lupus rash could be what you have.

[Patze]

Hi Janna,

You have a good point, I would not have thought about Lupus either.


Patze

[gsmraxe]

This is very embarrassing:  About a year ago, before being officially dianosed with SJS, I developed sores on my vagina that the doctor thought was genital herpes.  I had a fever, aches, chills, and the sores developed.  I knew it couldn't be that!!  They did a culture and a blood test, both came back negative for herpes.  I had bloodwork done again (doctor said it might not have been high enough to show up in tests a year ago) and it's negative again!  She has no idea what it was.

I know you're not doctors, but.....my question is this:  since SJS causes dryness in the mouth, nose, and vagina, and it also can cause sores in the mouth and nose.....could what happened to me be related to the SJS? 

If you had GH, then it should have been positive when they did the culture.  I got it when I was 22 (1991) and man did that hurt like I've never felt pain before. I also had a really high fever, almost 102, and had flu like symptoms, chills, achy...But the cultures tested positive.  I went in at like day 2-3 of getting the sores, the scraping hurt like nobody's business too, I almost jumped off the table.  An outbreak will go away in 7-10 days and come back when you're feeling run down or ultra-stressed out. 

Best wishes!

[missyb]

I thought Behcet's too, did you read about that?. But, I was also told that SJS can affect ANY moisture producing glad,