Patient Comments: Lichen Sclerosus - Symptoms

What were your symptoms associated with lichen sclerosus?

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: 65-74 Female (Patient) Published: February 05

I have lichen sclerosus. I had painful sex for over a year and always had pain in the genital area.

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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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Comment from: kat24k, 55-64 Female (Patient) Published: May 30

With lichen sclerosus I have itching, bleeding, and pain.

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Comment from: ThingsCanGetBetter, 35-44 Female (Patient) Published: September 10

Had severe problems from time I was a child, and it wasn't until I was in my 30s that I finally researched online and based on my symptoms found lichen sclerosus. After a few more years of pain and anguish I set my embarrassment aside and at an annual OB appointment (after she was all done and said you're good to go again this year....) I asked her specifically... "Do you think those patches (which were milk bottle white) down there could be lichen sclerosus?" She took another look and said, "Yes, I believe so." I was stupefied. She actually KNEW the ailment and never even brought it up to me prior to my asking. She prescribed a topical ointment - Clobetasol. I used it every day to start. Within 2 months things healed over and normal color returned. No more itching. No more tears or open sores. No pain. Normal - except for all the scarring that had already occurred over the years. Now 3 years later, I use it once a month and have had no additional problems. I am ecstatic to be feeling so good and thankful for her knowing what to prescribe .But also REALLY aggravated that NONE of my OBs over the years ever questioned or addressed the white and broken skin. I lived with this for years when a simple ointment could have brought me relief. Things CAN be better. Discard your embarrassment and get help. Even if you have to be persistent.

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Lichen Sclerosus - Diagnosis Question: Please describe the events and tests that led to a diagnosis of lichen sclerosus.
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