Diagnosed with LICHEN SCLEROSUS but have NO SYMPTOMS

Fortunate that it does not bother you. It is associated
with other autoimmune diseases that you have experienced.
Clobetasol can be used safely as directed by your gyne.
There is an association with the development of squamous carcinoma in rare instances so good to have
biopsy result, Discuss again with your doctor.
It may be easier to follow up and monitor if you use
the topical medication. Hope you hear about positive
outcomes with therapy here on connect.

@booville I am so sorry about your diagnosis. LS is definitely an autoimmune disease so anyone can get it with or without sexual intercourse. I’ve included Mayo Clinic’s information which also says that LS may not have symptoms, but symptoms may appear if left untreated. Please follow all of your doctor’s instructions carefully.
https://www.mayoclinic.org/diseases-conditions/lichen-sclerosus/symptoms-causes/syc-20374448
I’ve also posted links to 2 other discussions. They may have an old date but the information never gets old!
https://connect.mayoclinic.org/discussion/dietary-changes-for-lichen-sclerosis/
https://connect.mayoclinic.org/discussion/lichen-sclerosis-anyone/
Will you stay in touch and let us know about your gyno appointment?

I’d suggest considering treatment; as a retired nurse practitioner, I’ve seen LS progress to the point of almost obstructing the urethra in an asymptomatic woman. (She obviously was not someone who came in for care very often.)
Please consider that there could be clear advantages for you in treating this. I totally understand hesitancy to take medication, but perhaps in this case it’d be in your best interest.
Best wishes as you sort this out and make a decision.

@bwe @booville - Hi. Yes, please get thee to the gynecologic oncologist for further testing and possible treatment.

This past year, from February to the beginning of May, I went through 2 procedures to (hopefully) remove the lichen sclerosus (LS) that I've had for 40-some years, and that just this past 1/2 year, as far as I can tell, developed into VIN II-III (Vulvar Intraepithelial Neoplasia, at the highest levels), a precancerous condition.

I won't go into the details of the procedure/s for now, but absolutely follow and USE the preventative measures (including the Clobetasol propionate 0.05% that I've used as prescribed - off and on - over all these years. To my understanding and extensive (layperson) research, it is THE treatment to use at this time, again AS PRESCRIBED by your gynecologist (preferably a gynecologic oncologist, like I was referred to this past year).

Stay on top of it with your doctor's guidance, and chances are you will be able to manage it effectively. Glad you have not had any LS symptoms either.

The origins of LS are unclear to this day, though the automimmune response and genetics have been presented as possible origins for LS - but the "Why?" has yet to be answered...kind of amazing, even to this day! Also, there is no cure. I have not read any dispositive research that indicates diet contributes to or can control it.

There is an organization I have not explored in depth yet, but others seem to have been happy to have found it online: lssupportnetwork.org.

Also, BTW, there is "VAIN" - which is VAginal Intraepithelial Neoplasia - which can be problematic as well.

Let us know how you fare as your pursue your options. Best wishes!

I am a 72 year old widow, when I was maybe 69 I had an itch in the pubic hair and mentioned this to my Dr at my PAP appointment. She didn’t seem very concerned at that time and then I quit seeing her at age 70 and I was no itching. Last month I saw a new Dr after my daughter had a hysterectomy and I was impressed with her Dr. Before she even started my PAP she said I had white patches of LS, I said what? So she explained it could become cancer, it’s autoimmune and we should do a biopsy. Luckily it came back benign and I also use Clobetsol Propionate steroid cream once a week around the vulva not in the vagina. I was a little hesitant to use this as it’s not good for my liver as I have several other autoimmune diseases. Hypothyroidism was my first 20 years ago, sleep issues, osteopenia, and in 2021 PBC diagnosis after a liver biopsy of Cirrhosis. No I’ve never drank alcohol, and since I’m asymptomatic it was not discovered. I had always been the tall, big boned healthy girl who worked hard side by side my husband of 50 years, but evidently had all these hidden diseases.
I wish you good health and suggest you also use the cream per Dr order.