← Return to Lichen Sclerosus: Any other women dealing with this disease?

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@eileenb1022

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.

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Replies to "Hello. I am a 54, almost 55 year old woman. about two months ago i was..."

The treatment for lichen sclerosis is a cortisone cream or ointment; often clobetasol. It is not cancer.

Although should not leave lichen sclerosis untreated. Can lead to vulvar cancer and can progress and cause much discomfort.

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.

I was diagnosed with Lichen Sclerosus after visit to Gyn PA. Unfortunately, my PCP missed it. She was excellent. She did a biopsy to verify diagnosis. She did explain if left untreated, it could lead to cancer. But if treated it is low risk. I do recheck every year.

I take Clobetasol Propionate. Estrogen cream is not an option because I have a history of Breast Cancer that was estrogen receptor (ER) positive so do not want to take anything that introduces estrogen into by system.

Laurie

You are correct. Estrogen cream was wrong treatment. I was treated with cortisone cream and it went away. I never realized how serious this can get. But if treated correctly should not be a problem. It’s a very uncomfortable condition. I have a friend who went to a dr. who treated her incorrectly and she developed vulva cancer. I hope you get the correct treatment promptly. I’ll talk to you any time. Feel better soon

As you will read, many of us are dealing with this. Do not panic, ask your Doctor if they have others they have helped with this as finding a Doctor that is informed is important. It is auto immune but what causes it is a mystery I think because no seems to know why they have it, which includes me. I have had it for years before I even knew what it was. At least you are getting checked out as when I first was having issues, no one seemed to know what it was. My Dermatologist finally verified what I figured out on my own. I use Clobetasol and have for a couple of years now. My ARPN gave me estrogen years ago thinking that would help but I was post menopausal and it started periods so I got right off of it. l I hope they get it all figured out for you