lichenhater's interview
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How did all start?
Oral lichen planus showed up in my mouth about 11 years ago. I ground my teeth down chewing at the,inside of my cheeks and lips. Few were aware of the disease except those who had it. There was little to no info. I found enough info that I told my doctor I believed I had it. He confirmed. Only treaten he could find was an ointment with granules you rubbed in your mouth to get rid of the webbing and heal it. It didn't work. Because I was dealing g with chronic kidneystones, I upped my water intske. My mouth cleared up and only flared again with dehydration. The one day in 2015 I got burning in my vagina. It came and went until Dec 26. Then I got a burning in my ear that went through my ear canal, down my throat, then gave me a horrible burning in my chest and stomach..and ended in my vagina. Once it hit there, the other areas stopped burning. Doctors couldn't answer me, so I found the answer myself and it was confirmed I had vaginal and vulval lichens. I also have it on my scalp, arms and legs. Being tested for ear and throat soon.
Do you already have a diagnosis? How long did it take you to get it?
I did the research all myself. Took 3 months and one doctor for confirmation on my mouth. It took 16 months to find a doctor to confirm my vulvavaginal lichens, after I had researched. Doctors are not familiar with the lichen diseases and so they misdiagnose
For what medical specialties have you been treated? What has been the most useful specialty for your?
Gyn, Vulva, Dermatologist. Vulva Specialist made the greatest difference to my life.
What has been the most useful thing for you so far?
The internet!! Plus Facebook groups to talk with other with these diseases.
What have been your biggest difficulties?
Finding doctors (besides my primary care doctor)who listen and didn't brush me off as being hypochondriac.
How has your social and family environment reacted? Have your social or family relationships changed?
Social friends have been great. Family, other than my husband who has been awesome, well, they're all tired of my being sick all the time, so yes, that's chsnged. I've had to miss birthday parties for grandkids, and even skipped Christmas.
What things have you stopped doing?
Hiking, socializing as often, keeping my house spicy and span. Will soon be eating completely different than what I do now.
What do you think about the future?
I wonder if this will get worse and how it will further change my life. I worry about vulval cancer. I wonder if I'll even want a long life if it worsens. It all worries me, so I have to do what I can to get as healthy as possible.
So far, which years have been the best years in your life? What have you done during them?
The years I was able to trabel, hike, create.
What would you like to do if you didn’t have your condition?
All the things it has kept me from doing!
If you had to describe your life in a sentence, what would it be?
Struggling to find a way through it all.
Finally, what advice would you give to a person in a similar situation?
Never give up hope, never stop your research and never stick with a doctor who doesn't listen and do his best to find your answers.
