Patient Comments: Lichen Sclerosus - Symptoms


What were your symptoms associated with lichen sclerosus? Submit Your Comment

Comment from: Mary Pat, 25-34 Female (Patient) Published: August 07

I have extreme itching a lot of the time, I wonder if this could be due to having lichen sclerosus and diabetes. I am going out of my mind with this severe itching on scalp, hands, legs, arms and feet.

Comment from: linnie, 55-64 Female (Patient) Published: May 22

I have had this nightmare condition for about 3 years. The itching from lichen sclerosus is horrendous but far worse are the inch-long ulcers which happen occasionally. Trying to urinate when that's flared up is worse than labor. I am frightened to put steroid cream on the ulcer even if I could bear to touch it.

Comment from: Lindy, 55-64 Female (Patient) Published: May 22

I started itching with white patches, then cracking of skin, tears and bleeding. I went back and forth to the doctors who kept treating me for thrush even though I told him I didn't think it was thrush. I googled my symptoms and found lichen sclerosus. I told the doctor, he laughed and told me it wouldn't be that. I asked for a referral, and as soon as I was examined the specialist asked me how long I had had lichen sclerosus! I had suffered for 18 months!

Comment from: Cele2001, 55-64 Female (Patient) Published: December 13

I went to 3 different doctors and was treated for yeast infections because of the severe itching. I've never had a yeast infection in my life. I had painful and constant itching for over 1 year. I finally saw a gynecologist from whom I had to wait 4 months to get an appointment. She took one look at me and knew exactly what it was, explaining the keyhole look. The itching stopped immediately with the topical ointment she gave me for lichen sclerosus. I used it for a few weeks, then went weekly. But now the itch is back and I am afraid to use it more frequently. I have another appointment. The worst is the skin between the vulva and the anus is very tight and makes it difficult when I have a bowel movement.

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.

Comment from: elkybear13, 65-74 Female (Patient) Published: September 04

First I got fat and had severe arthritis of the hips. I was not able to see my gynecologist, I had to use washrag folded tight to wipe my buttock when I had bowel movements, and take it sideways on the right inner thigh to miss my labia and vulvar area. I did that a few times daily and little wart like sores appeared close to outer labia lips but was not on the vulvar area. When able to receive gynecological services and a review I was diagnosed with lichen sclerosus but no lab work supported since. Biopsy too deep, pain starts.

Comment from: Connie, 65-74 Female (Patient) Published: February 21

Lichen sclerosus is a terrible disease. I tried all the steroid creams and Premarin. Then heard of the MonaLisa Touch laser treatment. We paid 2500.00 to have it done. What a mistake! Now I have developed vulvar cancer. I had surgery but everything is worse. I do not know what to do!

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.

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.

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.

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.

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.

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.

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

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

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.

Comment from: betty, 55-64 Female (Patient) Published: July 26

I had incredible itching, then noticed a lesion/raw spot and went to ob/gyn. Tested for yeast infection and herpes, both negative. I was told to soak in tub several times a day, use soaps, detergents, etc. with no perfumes. Finally went to a gyn specialist who knew exactly what it was, biopsy confirmed. Treated w/steroid ointments and cream. That was eight years ago and it is still an ongoing issue.

Comment from: cricketinaz, 45-54 Female (Patient) Published: July 11

I noticed white roundish patches on my back around the shoulder area. They were a little itchy.


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