Lichen Sclerosus: Any other women dealing with this disease?

The area of my body that is affected is my female genitalia. I had what I thought was recurring yeast infections three years ago, but as it turns out it was lichen sclerosus. I battled what I didn't know was an autoimmune disease for a year or more before my diagnosis. My gynecologist referred me to an oncologist who specializes in this disease. Since I've been seeing this oncologist, I have gone through two compound meds along with amitriptyline for pain. I continually have micro fractures in the skin so I have multiple scars. The compound I use now worked wonders for itching, burning and discomfort somewhat. I still have thinning, white skin and there is now no separation in my genital area. My labia has all but disappeared and I'm scared to death. I reached out to a doctor in Abilene, Texas who treats this disease with laser technology but while I'm definitely up for a trial, she doesn't accept my insurance so visits along with treatments are going to be brutally expensive. I'm not sure what I'm going to do. *I'm hoping for Publishers Clearing House to come knock at my door!

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.

<p>I have now had two laser treatment for Lichen Sclerosis. The second treatment went well; in fact, so well, I'm REALLY looking forward to my next treatment. Things are looking better and feeling somewhat better and I have a great 'VIBE' about the final outcome!! *ON THE MEND AND FEELING HOPEFUL/THANKFUL</p>

Clobetasol is the ointment that is recommended. If your doctor didn’t prescribe it, you might want to find a doctor who is more aware of this condition. I highly recommend the Lichen Sclerosus Support Network. They have a lot of information about treatments, recommendations, what this disease is and how it affects you. I moved recently and went to a gynecologist who hadn’t a clue. The exam was painful because she was so quick with the speculum as if she was unaware of what damage LS can do. Through LSSN, I found another doctor who specializes in LS. It has made all the difference.

Hi nekcarolyn
LS
It is not curable but treatable. I am using an ointment received from my gynaecologist and it has given me so much relief I feel normal. At first daily for one month and now twice a week with followups with doctor.
The ointment is Taro-Clobetasol 17 propionate. It is a steroid but works wonders. I hope you find a suitable treatment. It is treatable as long as you follow Dr directions. This is not a disease for a dermatologist.
Good luck and please try not to worry. (Easier said than done).

I had a mild case, used clobetisol which helped, but now my doctor suggested Estrace cream, every day, just a bit. and this seems to have really cleared things up.

Hello Everyone,

This is my first time posting. I have had Lichen Sclerosis of the genitals for 16 yrs. I tried all the creams and ointments prescribed to me, but it seemed hopeless. My Aunt uses herbal medicines and suggested I try Neem Oil mixed with Green Tree Extract, after a week of using this It’s went away! I was very surprised, so the net time I had a flare, I used this same treatment and after a few days it was gone again. Over the years this has worked for me. This is my experience, please consult your doctor before trying this. I also have Morphia with Lichen Sclerosis and this treatment has slowed down the skin changes I have experienced. Don’t lose faith.
I hope this helps someone!

I have not seen your earlier posts . Can you tell me what the laser accomplished ?
Thank you

I have been struggling with LS for two years. My OBGN prescribed clobetesol but it hasn't helped that much. When I saw my demalogist she tried clobetsol for one week and the next week Tacrolimus ointment but Tacrolimus stung. So now I am doing one week of clobetesol and the next week with Pimecrolimus cream. I'm hoping this will work (fingers crossed).
My understanding is that this will never go away. Is that correct? Can it go into remission?

My Dermatologist verified what I thought was LS and I was correct. I have had it for quite a number of years and complained to my ARPN that I had issues and she gave me things for yeast infections but nothing really helped. So I self diagnosed after reading up on what my symptoms were. I felt good to have my Dermatologist say , yes that's what you have and it had destroyed the area pretty bad, I won't go into detail. I use Clobetasol and have for quite a while. Nothing else seems to help . I have used Bag Balm which my Doctor said to try off and on as well. I wish I could say this was not life long but I do not believe there is a cure and managing it early may stop it from progressing as mine has. I read up on Pimecrolimus cream and it is used for people with Eczema so that is interesting. I will check my my Dermatologist in a few months when I have my next appt. and see if there is anything new. Take care, thanks for your post