I have been sent to the Best of the best apparently. The best thing I ever did was to finally take pictures to show the gyn, derm, or what ever doctor they send me to, since many said "oh it doesn't look bad" because by the time I finally got an appointment sometimes it took 8 months to see a specialist....it might not be in a big flare, so I took pictures to prove what it looks like...... I am complex apparently........ It turns out I was and still am very sick. I have Addisons disease, which was not diagnosised and not medicated properly. The guess is that I was so sick with Addison's disease "something" happened down there and they can not explain it. I have been to vulvar clinics, only to be told...we don't know what it is. I have spent thousands of dollars on creams pills...u name it. I am better than I was..but I still can not do much nor wear pants...it is hell. That plus the hormonal issues that no one would test me for..."I was too young for hormone issues" I came close to death after these posts...had I not written a expert here in Canada regarding adrenal problems I would be dead. However 5 yrs of this and ice packs is too much.
I now just use Emu oil....it seems to help with the rubbing..just use water to cleanse....no chemicals.....and I am pissed about it.....If a man had his testicles turn bright red and the skin peel off..for years....he would damn well get better attention than I did. I basically have given up. My health is so poor...I don't know what to do....haven't seen friends in years...my friend has lichen sclerosus, I have been told I have this by one dermatologist...she has found some help with a compounded numbing cream....but can not sit at all like me....I wish I could have more answers for u...and it is NOT from the steroids I take now. I have to take them to stay alive....and to replace the amount my adrenal glands would make...and I had this before my addisons disease...so no doc can say it is yeast from steroids.....a biopsy would be nice, but no one did it. I basically figure if I eat right, try and heal what I can...and emu oil is the only thing that does not cause any more problems...good luck to you. please let me know if u have any help...I wish I could give you more advice...good luck :)