Discussions By Condition: I cannot get a diagnosis.

pubic area itching...

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: 12L34rn
  • September 11, 2008
  • 01:28 AM

5 years ago I was diagnosed with genital herpies. The diagnosis was based purely on site. My doctor who works at a clinic, a wonderful lady that I trust and really knows her stuff said to me "I really hate to say this but I am 98% sure you have herpies" I did get a blood test done but it was lost twice and I just assumed I had the disease. I dated for 3 years until I was dumped (I had told my partner before we ever started going out and he was okay with this).

I was recently tested for many many many different things (about 600 dollars worth with discount). I came up negative. So did my ex. I have not slept with anyone and I had those bumps since I was 17. I am now a 22 female and I am stumped. This itchyness/burning has been here for years and I have just suffered in silence too embarrased to seek help or even go get checked out every year as I should have.

Then I came across this image :

The image is a picture of Fox Fordyce Disease, different from Fordyce condition which is pretty much benign.

Note the inner bumps...I had always assumed this was apart of herpies...but this is EXACTLY what my skin looks like on my nipples, it clusters closely to the outer part mostly.

Also these small bumps appear on my inner labia... and THEY ITCH like crazy!!! I have always just lived with it--"walk it off" attitude, which is intensely uncomfortable and embarrassing. Only 200,000 people US have the disease so how could I have this?? Also I read something somewhere it mostly affected the African American population...which I am not. I am confused and not sure where to go to get it confirmed IF it is what I have. I have not been someone to sleep around and have practiced safe sex habits. Does anyone know where I can find more than a handful of words talking about this disease???

I am really lost here. Thanks.

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7 Replies:

  • There are many false negatives with the herpes test. You should know for sure. I could suggest the Western Blot test for you. The likelihood that it is a rare disease is not in your favor. You could also have the bumps scraped and analyzed, if you can schedule it while they are fresh. You can have sex without passing the disease, or you can pass it to someone and they can have the disease internally with no outward symptoms at all...other than the ability to pass it on to another person.
    Monsterlove 2921 Replies
    • September 14, 2008
    • 02:41 AM
    • 0
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  • I have heard of false positives for herpies, but i was told this was testing for antigens that would not retreat as would the virus itself. supposedly this is highly accurate, can anyone counter this?
    12L34rn 1 Replies
    • September 18, 2008
    • 05:06 AM
    • 0
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  • Mortality/MorbidityThis disease has no risk of loss of life or limb. Patients often experience severe pruritus. Therefore, the patient's quality of life may be adversely affected.RaceNo racial predilection is evident.SexA distinct predilection for women exists; the female-to-male ratio is 9:1.AgeFox-Fordyce disease is most common in women aged 13-35 years; it is rare before or after this age.This is just a copy and paste about fox fordyce disease from emedicine.comThere is a lot more on there if you really want to explore this disease in depth.I hope this reply does not include things saying the font size and colour. I apologise if it does.
    chrismia 159 Replies
    • September 18, 2008
    • 06:30 PM
    • 0
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  • I read a very interesting article about the 'itching' problem. You could have a combination of the Fordyce situation and perhaps an overkill on body sugars. When you eat too many sugars and especially yeasty items like bread, malt (think malted chocolate balls - yum). The excess yeast can pile up - not only causing bouts of yeast infections which are easily spotted by discharge and the itching, but it just raises the yeast bacteria naturally present causing that itch even when you aren't being diagnosed with yeast infection. I had this happen, and I just figured that my family was prone to yeast infection as my mother often had that problem too, but after going on a low carb diet, the signs all went away, and I've been happily itch free since. (not to mention 20 lbs lighter) Have you tried this?
    Anonymous 42789 Replies Flag this Response
  • Are you sure it's not just Thrush. If you haven't already tried it try Canesten cream.
    Painperson 12 Replies Flag this Response
  • Did the first doctor who you trust know that you had the Fox Fordyce Disease when she told you you had herpes? Can you call her office and see if those blood tests were ever found? or get your money back (ha)...what about scaping a bump on your labia and running that through the lab. I think that is the only way you will be able to determine what it is. You really can't determine if you are false negative or truly negative at this point.
    Monsterlove 2921 Replies Flag this Response
  • I agree with Monsterlove, you need to go back to your doctor and get samples taken, and have more bloodtests.
    riskyd 35 Replies Flag this Response
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