Hi!
I was diagnosed less than two years ago with LP, OLP & LP on my skin. It's caused two of my fingernails to come off!
I hear you about the medications!! I told my doctor, I will not take oral steroids unless my symptoms are severe! I do take medication to prevent any heartburn and reflux. This is extremely important for my esophagus. The stomach acids cause irritation and swelling in the esophagus.
The medication doesn't cause any side effects.

ELP is extremely rare! There are less than fifty patient's in the country diagnosed with it!
Like you, there's not a physician around me that have seen a patient with ELP. Recently, my gastroenterologist went to a big convention. He said, there was not a physician at the convention that has ever had a patient with ELP.
At this point, I don't have Lichen Sclerosis as you do!! I can't begin to imagine what that's like!!😫
I have learned that some types of LP can go into a remission. I've been in remission with the LP lesions on my skin, the lesions were awful! Right now it's a lot better! How long a remission can last is unknown. ( ELP causes permanent damage and a high risk for Esophageal Cancer.) I have had Esophageal biopsies and stretching twice, in the past 15 months. At times my esophagus has some paralysis causing some difficulties swallowing.
This comes and goes. Also, I have days when I feel like something is stuck in my esophagus. If it lasts a more than a day, I have to call my specialist. It's a problem swallowing and can become severe.
ELP is an autoimmune disease. It causes your immune system to attack the mucus membranes in the body. FYI...the tissue in your esophagus, mouth, and vulva are a part of the mucus membranes in the body. There is no cure for this. Only the symptoms are treated if necessary.
I have a Lidocaine mouth rinse that helps numb my mouth. It doesn't last very long. I can use it as frequently as needed. I also have a Dexamethasone oral rinse.
Dexamethasone is a steroidal medication. I swish it around and don't swallow it. This can be used occasionally for ten days at a time. Only a minute amount is absorbed into the blood.
(Steroids can cause some uncomfortable and unpleasant side effects.)
This rinse helps me after a few days of usage.

I hope this information helps you!❤️