Lichen Sclerosus: Any other women dealing with this disease?

My first laser treatment happened this morning. It was a good start to getting me back to normal. 🙂 I'm a little swollen, have a little spotting and have some mild pain. Lidocaine was prescribed and IT HELPS!! I go back for treatment #2 on Aug. 9th. All and all I am feeling well and I am actually looking forward to getting back to the ole' routine tomorrow. *I am full of hope with a sprinkling of anxiety 🙂

<p>I have now had two laser treatment for Lichen Sclerosis. The second treatment went well; in fact, so well, I'm REALLY looking forward to my next treatment. Things are looking better and feeling somewhat better and I have a great 'VIBE' about the final outcome!! *ON THE MEND AND FEELING HOPEFUL/THANKFUL</p>

@kitten92 , Hi there, Judy here, I think I may have spoken to you before. I too have lichen, and my gynecology Dr. has told me that all I can do is use clobetesol. May I ask what the laser accomplished for you? I'm so glad you're feeling better. Judy

I’ve recently been diagnosed with lichen schlerosus by a gynecologist. Only symptom was itching, but visually you could see a figure 8 of white skin. External labia are fused. Six months ago I got a big oval patch (2 ½”) centered just below my breasts. This was biopsied by a dermatologist and is being treated with clobestasol. It appears to make the skin more like leathery tissue paper. A third spot may be developing on my lower torso. Watching and waiting to see if more develop.

Update. The discoloration has spread to both sides of my torso and, though I cannot see it, I believe my back is affected. Seeing dermatologist in a few weeks. Isn’t there a systematic treatment. Difficult to out chlobetasol everywhere.

@gingerbear22 Here an article that might help:
- Lichen Simplex Chronicus Treatment & Management: Medical Care, Consultations, Prevention https://emedicine.medscape.com/article/1123423-treatment

Be sure you keep a journal and write down dates when it all started, any changes in skin creams, ointments, feminine hygiene products, laundry soaps, etc. also mention your family history of autoimmune diseases

@gingerbear22 have you read the postings in this group? There is a close relationship between lichen sclerosis and lichen planus and autoimmune disease.
https://jamanetwork.com/journals/jamadermatology/fullarticle/420123
Here is a link to the autoimmune discussion:
https://connect.mayoclinic.org/discussion/oral-lichen-planus-3/

https://connect.mayoclinic.org/discussion/tips-for-getting-a-proper-diagnosis-of-an-autoimmune-disease/
Another good discussion

@gingerbear22 you had asked about finding a doctor who knows about autoimmune diseases. Here are some resources
https://mayoclinic.org/about-mayo-clinic/care-network/members. This site lists the hospitals that work closely with Mayo Clinic. Called Mayo Clinic Care Network
Also try ‘medical centers of excellence’ and look for one nearby
Another member said she called the Mayo Clinic and asked for Mayo educated doctors in her area.
Let me know what you learn!

Update. I had an appointment with my dermatologist. Unfortunately the appointment was only for annual full body visual scan for moles. She was not prepared to discuss the lichen. When I disrobed you could see on her face her surprise at the extent of my discoloration. She let me know she’d be researching, talking to my rheumatologist, and perhaps my GYN and get back to me. Another term she introduced is morphea (localized scleroderma). I Googled and found images that resemble the look of my torso. Stay tuned. Oh, I asked about photo therapy and she says she knows of no equipment in this town . . . but was not resistant to researching further.

Kate, has a follow up appointment been scheduled to talk specifically about morphea (localized scleroderma)?