- Lichen Sclerosus
- Interviews
Cindy's interview
How did all start?
Raised itchy area on labia majora. Went to gynecologist, who did a punch biopsy, and Lichen Sclerosus was diagnosed in about 2011 at the age of 47. Post menopausal for almost 10 years.
Do you already have a diagnosis? How long did it take you to get it?
Only a few months to get confirmed diagnosis.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Gynecologist for LS. Gastoenterolist for my Crohn’s Disease.
What has been the most useful thing for you so far?
Topical ointment - Clobetasol. Moisturize with coconut oil.
What have been your biggest difficulties?
Burning pain. Painful intercourse. Fusing of genital tissue.
How has your social and family environment reacted? Have your social or family relationships changed?
Reduced intimacy in my marriage. That’s all.
What things have you stopped doing?
Much less sex.
What do you think about the future?
I worry about the advancement of the disease and more fusing and pain.
If you had to describe your life in a sentence, what would it be?
I struggle daily with symptoms of Crohn’s Disease, Lichen Sclerosus, degenerative disc Disease, and Charcot-Marie-Tooth Disease.
Finally, what advice would you give to a person in a similar situation?
Make sure to find a doctor who has knowledge of Lichen Sclerosus. One who listens and is willing to work with you to treat the disease in a way that works for you. I’m in a support group for LS and have found there is a significant difference in symptoms for sufferers and each responds to treatments differently. So find a doctor who will work with you to tailor a treatment plan that works best for you. Steroid ointment is most effective at reducing the inflammation and preventing the fusing of genital tissue.
