Lichen Sclerosus: Any other women dealing with this disease?

I am not a doctor, but have LS. I don’t think it ever goes away completely but the autoimmune nature of the disease means that flare ups come and go. However armed with the right medication mine is definitely under control.

Clobetasol is the ointment that is recommended. If your doctor didn’t prescribe it, you might want to find a doctor who is more aware of this condition. I highly recommend the Lichen Sclerosus Support Network. They have a lot of information about treatments, recommendations, what this disease is and how it affects you. I moved recently and went to a gynecologist who hadn’t a clue. The exam was painful because she was so quick with the speculum as if she was unaware of what damage LS can do. Through LSSN, I found another doctor who specializes in LS. It has made all the difference.

As of today, after 15 months on a weekly dose of 20mg methotrexate, my dermatologist and rheumatologist and I agree that quieted down all extra-genital lichen schlerosus inflammation and new lesions! I’ll see my gyn in a couple months and see what she thinks from her point of view.

I have it, nothings been fused but I've had fissures and tears. I've only been on clobetasol, which helps. I was scared to use it but recently told by a specialist to use it more often because it builds the skin up.

I have lichen sclerosis too. Apparently it's an autoimmune disease. I sympathize with you as I've known the pain.
You should use the clobetasol cream, faithfully for one week every day, taper off to once every 3 days the next week and then once per week. It will work!! In the meantime, if you find the burning to be too much, apply a Vaseline type cream like Eucerin Aquafor. It's very helpful to relieve additional pain from rubbing (underwear, sitting etc). Hope this helps. I no longer have active symptoms. But it took a year and a half.

I was just diagnosed with it

Yes. I was diagnosed 11 years ago, but I’ve had it at least 16 years. I have had fusion and scarring. I’ve had two laser surgeries in Pensacola, Florida that worked wonderfully to get my anatomy looking more normal without disturbing clitoral sensation, and another in Phoenix, Arizona in April that was unsuccessful, as the LS was rearing it’s ugly head in full a month later. The first two surgeries lasted about 3 years each before I needed another to open my vulva again. LS just continues to have its autoimmune cycles. I use Clobetasol ointment, or Clobetasol Betamethasone Cream. I suppose I’ll need to travel to Florida again for a more successful treatment soon. I live in AZ. Sure wish Mayo Clinic had a permanent treatment for us.