- Lichen Sclerosus
- Interviews
Sarah's interview
How did all start?
7 years ago with spot on my breast
Do you already have a diagnosis? How long did it take you to get it?
Yes - didn't take too long to get diagnosis but I didn't have genital symptoms at that time so the dr ignored my diagnosis until a major genital flare.
What has been the most useful thing for you so far?
Online forums - there seems to be little to no information available and my drs are clueless
What have been your biggest difficulties?
Difficulty getting help from drs - treatment options and long term plan. Doctors ranged from clueless but told me there was no hope, to feigned knowledge resulting in permanent fusing. In addition, this has had a serious blow to my marriage as my sex life has been permanently damaged due to clitoral fusing and tearing during intercourse.
How has your social and family environment reacted? Have your social or family relationships changed?
Marriage is having challenges. This disease is not one you tend to talk about with others.
What things have you stopped doing?
Most sexual activity. Using soap. Wearing anything organ than cotton underwear.
What do you think about the future?
I fear a completely sexless marriage.
Finally, what advice would you give to a person in a similar situation?
Be really proactive. Join a group on FB and push your doctors for answers. Do not be dismissed.
