Lichen Sclerosus: Any other women dealing with this disease?

Agree with Sue. I have lichen sclerosis and have had it for 35 years or so. No cancer. The treatment is clobetasol ointment (not cream as ointment stays on longer considering we must urinate and wipe ). I was perscribed hormone vaginal tablets but refused them. The ointment twice a week for three weeks on one week off helped me a lot. I also take pregabalin max. dose and amitriptyline for pain. Works wonders for me.

Hello. I am a 54, almost 55 year old woman. about two months ago i was referred to a gyn office from my pcp for what was suspected to be recurring UTI's. i had a really bad one last thanksgiving in the ER. i was fine for about a month and a half then i was still having symptoms and it was confirms and no antibiotic worked not even bactrim. When i went to the Gyn's office i would have chosen to see a gyn. i saw a nurse practioner but she was nice and i felt she was knowledgeable and very thourough. she did a exam then said i had Vulver Lichen SClerosus. i had her repeat it as i had never heard of it before. she handed me handouts on it basicly decribing what it was and how to treat it. i read most of it but i guess not all of it. i was told it was a skin condition, autoimmune and it happens to women who have hypothyroidism like myself. she gave me a prescription for a estrogen cream, i think it was called estrogial and a ointment but said only use it twice a week. but the following morning after using it i would only itch more. the other night it was not so much itchy but just felt uncomfortable kinda painful. i did what i normally do i post on on of my facebook groups. i had one person say be careful cause she had a friend who thought she had psorias and she found out she had vulver cancer! what? i never even heard of vulver cancer. then i did a search and i saw there is a percentage although small that this can turn into vulver cancer. my anxiety was in overdrive. other people said did you have a biopsy and when i said no i message the nurse practioner all freaked out. she messaged me back saying she was sorry i was so worried and said somone would be calling me about giving me a appointment with one of the actual doctors. the did call me yesterday morning and offered me a appointment for monday morning fairly early. i was greatful to get in so quick. but im so stressed. im worried what their gonna say, if they will give me a biopsy or what they will put me on to treat. i read most people are given steroid cream the estrogen cream i think was the wrong thing and only made me worse. does anyone here have it? should i be worried? lately i have been using cereve there which helps a little with the itching. some discharge (brownish- redish discharge small sometimes) id really like to talk to someone. i also have other health problems and im just scared. i have hyperplasia with most likely autoimmune gastritis as well as having my gallbladder out so i cant eat much either an other health issues. so i have two things that have a small things that have a small chance of turning into cancer so yeah my anxiety is in overdrive. anyone who can talk to me would mean s much. thank you.

Some people who can't tolerate the cream, possibly because of the products used to produce it, rather than the active ingredient, can avoid that problem with the ointment. I say that because I have personally had greater succes in reducing pain and itch with the ointment. But its good that there is choice.

There are natural estrogens that are mixed at a compounding pharmacy. No fragrances and fewer non-medicinal ingredients.

Some people who can't tolerate the cream, possibly because of the products used to produce it, rather than the active ingredient, can avoid that problem with the ointment. I say that because I have personally had greater succes in reducing pain and itch with the ointment. But its good that there is choice.

Clobetasol cream is definitely okay to use. I can attest to that. It was prescribed by the gynecologist who heads up the "Vulvar Diseases Clinic". I have had improvement. It gets absorbed into the skin.

Agree with Sue. I have lichen sclerosis and have had it for 35 years or so. No cancer. The treatment is clobetasol ointment (not cream as ointment stays on longer considering we must urinate and wipe ). I was perscribed hormone vaginal tablets but refused them. The ointment twice a week for three weeks on one week off helped me a lot. I also take pregabalin max. dose and amitriptyline for pain. Works wonders for me.

Hello. I am a 54, almost 55 year old woman. about two months ago i was referred to a gyn office from my pcp for what was suspected to be recurring UTI's. i had a really bad one last thanksgiving in the ER. i was fine for about a month and a half then i was still having symptoms and it was confirms and no antibiotic worked not even bactrim. When i went to the Gyn's office i would have chosen to see a gyn. i saw a nurse practioner but she was nice and i felt she was knowledgeable and very thourough. she did a exam then said i had Vulver Lichen SClerosus. i had her repeat it as i had never heard of it before. she handed me handouts on it basicly decribing what it was and how to treat it. i read most of it but i guess not all of it. i was told it was a skin condition, autoimmune and it happens to women who have hypothyroidism like myself. she gave me a prescription for a estrogen cream, i think it was called estrogial and a ointment but said only use it twice a week. but the following morning after using it i would only itch more. the other night it was not so much itchy but just felt uncomfortable kinda painful. i did what i normally do i post on on of my facebook groups. i had one person say be careful cause she had a friend who thought she had psorias and she found out she had vulver cancer! what? i never even heard of vulver cancer. then i did a search and i saw there is a percentage although small that this can turn into vulver cancer. my anxiety was in overdrive. other people said did you have a biopsy and when i said no i message the nurse practioner all freaked out. she messaged me back saying she was sorry i was so worried and said somone would be calling me about giving me a appointment with one of the actual doctors. the did call me yesterday morning and offered me a appointment for monday morning fairly early. i was greatful to get in so quick. but im so stressed. im worried what their gonna say, if they will give me a biopsy or what they will put me on to treat. i read most people are given steroid cream the estrogen cream i think was the wrong thing and only made me worse. does anyone here have it? should i be worried? lately i have been using cereve there which helps a little with the itching. some discharge (brownish- redish discharge small sometimes) id really like to talk to someone. i also have other health problems and im just scared. i have hyperplasia with most likely autoimmune gastritis as well as having my gallbladder out so i cant eat much either an other health issues. so i have two things that have a small things that have a small chance of turning into cancer so yeah my anxiety is in overdrive. anyone who can talk to me would mean s much. thank you.

Hello, I want to connect with other patients that have this conditions to exchange notes, also with like to know what is currently in the research and studies. Thanks!