Patient Comments: Lichen Sclerosus - Doctors


What type of doctor did you see for your lichen sclerosus? Were you referred to a specialist? Submit Your Comment

Comment from: klp, 65-74 Female (Patient) Published: March 28

I have been to 12 plus doctors of various kinds and not one of them ever diagnosed my lichen sclerosus. I have had it for over a decade. It seems not many doctors either know about it or know how to treat it. Most write it off as 'candida' and prescribe Monistat or something. I did my own research and have now come to the conclusion myself. Hoping that my newest doctor (dermatologist) will diagnose correctly and prescribe appropriately.

Comment from: Twizzler, 55-64 Female (Patient) Published: June 05

I saw my gynecologist and was diagnosed with lichen sclerosus. I also use clobetasol cream. It does help the itch but as soon as I stop it starts again. I wonder if going to a different doctor may help to get rid of this! I am not able to have sex without some pain. It's really frustrating. It also made my area smaller! Very weird.

Comment from: sanoble, 65-74 Female (Patient) Published: October 25

My lichen sclerosus started several months ago. Very painful. Mine is not in the vaginal area. Mine is on the inside of my thighs, back of my leg, and armpit area. There are a few patches on the front of my leg but they do not bother me as much as my inner thighs. I saw a dermatologist and really got no help from him. I was very discouraged. I am heavy and I believe he dismissed me thinking it was chafing. I decided to go back to my family doctor. She is the one who diagnosed this by taking a biopsy. She has prescribed a steroid cream. It is helping some but definitely not like I would want.

Comment from: loh, 55-64 Female (Patient) Published: July 17

I have self-diagnosed my lichen sclerosus and started treatment whilst I wait for an appointment with the gynecological consultant. As the general practitioner would not start treatment until seen by specialist and I had to wait for 2 or 3 months to be seen. It started with sore red areas around urethra and labia minora for over a year, then an episode of acute inflammation with swelling and bruised looking tissue. Now the tissue is going white. It has responded to strong steroids as it feels better but the white areas increase as the inflammation subsides. I have not had it confirmed as yet.

Comment from: Telma, 35-44 Female (Patient) Published: April 16

I went to see a gynecologic oncologist, as I wanted a second opinion regarding cervix abnormal cells, nevertheless he just took one look and knew it was lichen sclerosus. As he was asking me questions he described the symptoms, and my answers were yes. As he already knew what it was, he prescribed clobetasol cream 0.05%... great doctor.

Comment from: debbie R, 55-64 Female (Patient) Published: May 21

I have been dealing with this lichen sclerosus thing for over 2 years now. They give me creams which don't really do much. I heard about a radiation thing to get rid of it altogether, also a stem cell thing that may help as well.

Comment from: Helpless, 65-74 Female (Patient) Published: November 01

I was diagnosed with lichen sclerosus approximately 13 years ago. I have seen 3 gynecologists and 2 dermatologists. Every one of them has prescribed clobetasol 0.05 percent ointment. I was started on the cream till later another doctor said the ointment was much better. It doesn't matter; all they do is keep renewing the prescription. I am at the point where I can't walk, sit, drive, dress, get in/out of bed or even just change positions. Sitting on a bed pillow doesn't help; nothing helps. Urinating is awful. I grab something to squeeze tight and cover my mouth with my other hand so neighbors don't hear my screams. The only time I am painless is when I finally get into bed, find a position and don't move! I made an appointment with a specialist a while back, but the first appointment they had for a new patient is still another 5 weeks away. I fear I won't even be able to get there from the pain. This is a terrible disease. Until about 2 months ago I was able to wander out for a couple hours a couple times a week. It has suddenly gotten much worse; which I didn't think was even possible.

Comment from: Jean, 55-64 Female (Patient) Published: February 16

I was diagnosed with lichen sclerosis about 10 years ago. The pain is ridiculous. In 2008 I was diagnosed with breast cancer stage 4. I was put on a clinical trial and received the real thing so I made it through that but that makes this worse. My husband and I have not had a real sex life in about 2 years. He is understanding but it is just not the same. I want sex but the pain is too much.

Comment from: Puffin, 65-74 (Patient) Published: December 02

I have had lichen sclerosus since in my twenties and I am now 72. I did not get an answer until I was fifty. I went without treatment a very long time. I use 5 percent clobetasol. My gynecologist said the next time she sees me she might want to another biopsy. I feel she thinks mine might turn into cancer. I think people are getting treatment sooner.


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Comment from: 2 dumb doctors, 45-54 Female (Caregiver) Published: May 09

I"ve seen 2 doctors for my lichen sclerosus, no help, they write you off.


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