HI Susan- I finally saw the vulvar specialist here in HOUSTON, Tx. She was very knowledgable. She said my LS was a 3/10. I am asymptomatic- no pain, no itch, rt labia 1/2 size of left, some clitoral desensitization/ phismosis ( fusing). I have two small white patches on inner labia, using CLOB 2x / day until I go back in DEC. She is not concerned about skin tjinning since I am not menopausal and hv plenty of Estrogen. She indicated that I would not be in remission until white patches were completely gone. I avoid sugar, use an emuaid bar in the shower for cleansing, moisturize with emuaid, coconut oil or v- magic, lower my stress, and take about 16 supplements per day. Things are pretty much back to normal.
GOOD LUCK TO YOU!
Susan, that sounds severe-ish! I had it and didn’t even know it, so my symptoms pale in comparison to others. But if you were a gyn with a tremendously strong light and knew what to look for, my LS was apparently diagnosable. I just thought what I had was advancing atrophy along with a fleeting vag infection. Very glad I finally saw a gyn and that she was very experienced re LS. Not sure why the steroid isn’t working for you. (You are using a steroid, right?) What does the doc say?
karen, do you mean rated a 3 out of 10?
The clobestol has been a life saver, but can’t bring back what I have lost and I still get white patches and lesions. Also the clob thins the skin so I use it sparingly.
Have a hard time remembering who is who as so many conversations are started. Have you tried any dietary changes or the borax which is supposed to at least soothe? Sorry you are having so hard a time.
There is an oral immunosuppressant drug, but I think it may be used for extreme cases only.
You said you’ve had this for years? Pre-menopause or since?
yes, with 1 being the mildest and 10 being the worst- she said I am a 3.
Hi Beverly, I never heard of an oral immunosuppressant drug. Would love to know what it is. I think I have had this for 13 years. I am now 73.
sent you a PM. I know nothing about the drug. Just have read articles .
thank you for is … just diagnosed a week ago
using CLOB now
feeling helpless want a good doctor
i had some hives come up didn’t know if that was a reaction to CLOB ?!
THANK YOU