Patient Comments: Lichen Sclerosus - Diagnosis

Question:

Please describe the events and tests that led to a diagnosis of lichen sclerosus. Submit Your Comment

Comment from: Witch Weaver, 45-54 Female (Patient) Published: April 09

I am from Arizona who came all the way to the Bronx, New York City to get bitten by a brown recluse spider! It was the worst experience in my life and I hope every day that the pain would go away, and 6 months later it finally did. It was a very long healing process probably because I didn't take it seriously and I didn't pack or clean it the way I was supposed to. It left a huge crater in my leg. I don't wish this on anyone.

Comment from: A Doc Too, 55-64 Female (Patient) Published: February 12

Irritation forced me to look at the tissues that were white and patchy. I had no itch, but soreness. I went to the obstetrician/gynecologist as soon as possible, she looked but did not do biopsy. Said she was sure it was lichen sclerosus. It does look like the pictures you see online. She prescribed clobetasol. After one month, white patches were less but redness is worse. Sitting and exercising are painful. I am losing my job because I cannot sit to do my work. I tried Preparation H (helped some), Cortizone 10 with aloe (helped some), and pure aloe which did not help.

Comment from: Tamiko , 45-54 Female (Patient) Published: September 12

My problems with lichen sclerosus started after my 2nd child. I never saw the white patches as I grayed in my early twenties. I went to the gynecologist for over 15 years with complaints about excessive itching especially at night. It was always the same diagnosis; a bacterial infection, vaginitis or we didn't find anything. In 2016, I did an internet search and lichen sclerosus came back. I told my doctor what it was. He said I was too young for that. Two medications later, he did the biopsy and I was right.

Comment from: K, 65-74 Female (Patient) Published: June 19

Over the years I went to many doctors thinking it was a urinary tract infection, and almost never was. I probably kept the yeast medicine people in business because of the itching. When I started bleeding the doctors said it was from thin post-menopausal skin. Finally, biopsy a year ago said lichen sclerosus. I use clobetasol and Crisco, the kind we cook with, the solid type to keep moist. No soaps and such. I have a sore throat often, ears bother me, and I think allergy, seems to affect one another. Maybe autoimmune. Sleep helps. I wear skirts and no underwear if I'm home. Intercourse is impossible, way too painful. I've had trouble ever since I had a bad yeast infection at age 18. I know that was yeast, it cleared up in three days with yeast medicine. But, after that, I've had trouble in the genital area, it kept coming back. The clobetasol takes the edge off the problem but doesn't solve it. It's worse now. Age 71.

Comment from: Cheryl, 55-64 Female (Patient) Published: June 11

I was experiencing the same symptoms as some others here. I am a healthy 60 year old active female, married. I waited too long myself to get a diagnosis, sadly I hate going to the doctor as I am experiencing other health issues. I waited a year too long to visit my gynecologist, to whom I had not gone in years. I have a primary doctor. So when I really started to be in pain I called my gynecologist. I was told to come in as soon as possible. That day I had two biopsies that came back with the diagnosis of lichen sclerosus. I had no idea what lichen was; my husband of 17 years has also suffered from my pain. I am one of the fortunate married couples where my husband understands and is very supportive. I am so very sorry, nothing is helping me get better.

Comment from: nan, 45-54 Female (Patient) Published: August 01

I was just recently diagnosed with lichen sclerosus and was given steroid cream as treatment. Wonder if you can still enjoy sex with this condition.

Comment from: Wkeeton, 65-74 Female (Patient) Published: October 16

Like every other unusual condition that didn't gallop in on a Clydesdale and hop up on the exam table wearing a sign, I diagnosed myself with the help of Dr. Google. I diagnosed my own polycystic ovary syndrome, hidradenitis suppurativa, and now this lichen sclerosus with its constant itching and burning which, no, was not a yeast infection or atrophic vaginitis. It's not what the doctors don't know that scares me, it's all of the things they claim to 'know' that are just flat out wrong.

Comment from: marycat, 65-74 Female (Patient) Published: February 02

I am a 67 year old married woman. I was experiencing severe itching around the vulva and rectum and painful intercourse. This went on for several months. One morning I ventured to take a look at the area with a mirror. I was horrified to discover that the skin surrounding the area was white. I was alarmed and visited Urgent Care. I was seen by a nurse practitioner who was not familiar with the symptoms and referred me to a gynecologist for a diagnosis. The gynecologist immediately diagnosed the lichen sclerosus. I was told that the condition is not contagious nor is it curable. They don't even know what causes it, but if left untreated can lead to cancer. I was given prescriptions for two ointments that have been helpful in alleviating the symptoms. I am applying estradiol ointment every other night and betamethasone dipropionate ointment twice a day.

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Comment from: Geli, 55-64 Female (Patient) Published: October 20

I have had problems with severe itching and soreness around the genitals since I was a small child. Nobody could find out the cause until I paid for a private diagnosis in my 30s. I was immediately diagnosed with lichen sclerosus and this was confirmed by a biopsy. I have lost most of my clitoris and have not been able to have sex for over 20 years. I have used clobetasol, which has been effective in reducing the itching, but then if I use it too frequently it causes soreness to follow. I now use it around once per week. I get very depressed and lonely with this disease and I am very annoyed that it wasn't diagnosed much earlier before so much damage was already done. The hardest thing is not being able to form intimate relationships. The men I have met in recent years are no longer interested when they find out about my disability. I wish there was more emotional support available.

Comment from: gkMary, 25-34 Female (Patient) Published: April 15

I developed itching in my genitalia which later left me with white patches. Years later I developed another patch on my back, and with time it was growing bigger, it wasn't itching or painful so I ignored it until one day it became a blister. I freaked out and I went to see a skin specialist who told me that it was lichen sclerosis. I am now on treatment with clobetasol, prednisolone and dapsone. I am seeing improvement in three weeks now.

Comment from: sarah, 55-64 Female (Patient) Published: October 15

I came down with an incredibly painful itch on my labia. I changed my soap, washed with a mild oatmeal soap, washed with no soap, did everything, but the itch and the pain simply got worse. Finally I went to my general physician who referred me to a Gynecologist. She immediately scheduled me for a "patch" biopsy, a procedure which takes out a tiny piece of skin from the infected area for testing. It was diagnosed that I have Lichen Sclerosus!

Comment from: Pumpernickel, 45-54 Female (Patient) Published: November 18

I had a Brazilian waxing that was done incorrectly. It left some tears in my skin at the very top of my labia. As it healed it started to itch and that led to a chronic lichen sclerosus condition. It took a few years to get a diagnosis and then treat with clobetasol successfully.

Comment from: Kathymac, 55-64 Female (Patient) Published: June 28

I was diagnosed with lichen sclerosus about 3 most ago, and now we're talking about dermatologist which seems a little strange since it's in a very personal area.

Comment from: KD, 19-24 Female (Patient) Published: June 11

I'm a rare one. I was diagnosed by an obstetrician/gynecologist at 19 with this lichen sclerosus. Man, I had no idea what was going on, and the itching was just awful. I'd itch until I bleed. Now, a few years later I get just little flare ups and the cream they prescribed helps out a ton.

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