Patient Comments: Lichen Sclerosus - Symptoms

What were your symptoms associated with lichen sclerosus?

Comment from: magicmike77, 75 or over Female (Patient) Published: October 12

I was diagnosed with lichen sclerosus about 5 months ago. I don't have pain or itching just an irritation I have never felt before. I went to my doctor and he sent me to a gynecologist. She had me use clotrimazole, and Estrace. It seems to help but this is something that never goes away. What a pain. I hate it. It just happens for no reason. I am 77 years old. Even little girls can get it but it goes away for them. I have read up on it.

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Comment from: Frustrated, 55-64 Female (Patient) Published: December 10

It began after trauma to the vulva. It was biopsied and diagnosed as lichen sclerosus, treatment was clobetasol cream. The pain was excruciating; open sores and bleeding. Wiping was very painful. Doctor suggested dabbing instead. This resulted in labia scarring together over clitoris. Most of the labia was eaten away. I no longer have any sensation in the clitoris. Sex is painful. This disease has caused me great grief. It flares up and settles down. Cream keeps it from getting as bad as the 1st time. Cream thins skin. Use a tiny bit at a time. I have other autoimmune conditions as well. It took 3 gynecologists before correctly diagnosed. Read everything possible to educate yourself.

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Comment from: Judy, 55-64 Female (Patient) Published: November 04

At this moment my entire perineal, vaginal, rectal area is swollen, painful, red, blistered, and itchy. I was diagnosed with lichens sclerosus by a gynecologist. He did a tissue biopsy about 6 years ago. When I had insurance I was able to keep it under control with clobetasol topical. I have no health insurance at this time and have had this mad outbreak for about a week and a half and am still working putting in 60 hours per week. It is so bad and painful I have a hard time sitting down. I feel as if I am being tortured. Wish I knew something I could do to relieve the symptoms without it costing me so much.

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Comment from: KJ, 55-64 Female (Patient) Published: August 14

I went to 2 different doctors and was treated for yeast infections because of the severe itching. I went through several medications. Changed soaps and everything else I could think of that would cause infections, just took showers, no soaks in the tub. I had painful and constant itching for over 1 year. Finally sought out a female gynecologist who specializes in perimenopause women. She took one look at me and knew exactly what it was, she did a biopsy to confirm lichen sclerosus. The itching stopped immediately with the topical ointment she gave me. Unfortunately a lot of scarring has already happened.

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Comment from: Dorothy, 45-54 Female (Patient) Published: December 30

Several years ago I thought I had an STD! Went to gynecologist and he thought it was lichen sclerosis and biopsy confirmed it. I had surgery to remove the spots. Now it's back and burns like fire when I urinate. I don't want surgery again so I'm looking for a better treatment. I think it's interesting they think it may be caused by overactive immune system because I have other issues related to that.

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Comment from: fiery, 75 or over Female (Patient) Published: October 03

Fifteen years ago a small lump appeared on my vulva. I was told it was VIN (vulval intraepithelial neoplasia) 3 and it was removed. No cancer. Then another biopsy said severe lichen psoriasis and I was being treated with clobetasol propionate and Premarin vaginal cream, how bad can this get! Also due to first biopsy cannot not get supplemental insurance. Actually I don't know if it is VIN 3 or lichen sclerosus.

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Comment from: Gma, Female (Patient) Published: December 09

I use mineral oil to keep the area lubricated. I found when it's dry the lichen sclerosus is worse. Soaps or other items are no good either. Neither is bladder control pads. Men's boxers are the best, 100 percent cotton.

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Lichen Sclerosus - Diagnosis Question: Please describe the events and tests that led to a diagnosis of lichen sclerosus.
Lichen Sclerosus - Treatment Question: What types of treatment, surgery, or medication did you receive for lichen sclerosus?
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