- Lichen Sclerosus
- Interviews
Cyndi's interview
How did all start?
Chronic itching and soreness in the vulvar area
Do you already have a diagnosis? How long did it take you to get it?
Finally saw an obgyn after months of discomfort and she knew immediately, just by sight, that I had LS. She took a biopsy during that first visit and the results were positive. I think I probably had it for one or more years before this discovery as I had architectural changes but didn't really realize it.
For what medical specialties have you been treated? What has been the most useful specialty for your?
None yet except for the obgyn who recognized the condition right away. But I was sent to an oncologist gynecologist who treated me like an object, not a person, and didn't tell me much about the condition. I have also seen a dermatologist but there's not much use to continued visits because my only treatment option is Clobetasol steroid ointment. The dermatologist can't do anything for me.
What has been the most useful thing for you so far?
For the LS, using Clobetasol ointment helps irritation. Finding online support groups on Facebook has helped me learn more about the disease.
What have been your biggest difficulties?
I need treatment for the architectural changes but all of the treatments that could help me are very expensive and insurance doesn't cover them!
How has your social and family environment reacted? Have your social or family relationships changed?
Only my immediate family knows and they are concerned but don't have a way to help me. It's too private to talk about socially.
What things have you stopped doing?
Don't feel I can date as I'm not physically able to have sex due to this disease. I feel devastated, alone, isolated.
What do you think about the future?
I don't have a positive outlook at all. This disease has a huge impact physically, mentally, and emotionally.
So far, which years have been the best years in your life? What have you done during them?
My best years were my 20's - 30's. Married, had a child, and after divorcing, dated. Had a good sexual life.
What would you like to do if you didn’t have your condition?
Be able to date and possibly find someone to spend the rest of my life with.
If you had to describe your life in a sentence, what would it be?
Disappointing
Finally, what advice would you give to a person in a similar situation?
Right now I have no idea.
