Lichen Sclerosus: Any other women dealing with this disease?

I looked on NIH library & says: “chronic inflammatory vulvovaginal disease. The etiology is unclear, but some newer evidence suggests possible genetic predisposition or induction by autoimmune processes.” (My Nurse Practitioner said it’s from low estrogen levels in menopause. I’ve read that previous injury in the area can contribute also. I did have an episiotomy w childbirth)
Thanks for your interest in this condition! I do want to find a laser treatment if biopsy is positive.

Thank you for this Dr Coyle info! I do have some shrinkage inner labia & don’t want progression. I do use estradiol vag cream twice weekly & now spread it to outer area. That might be similar to estrace & I have to ask at appt. And the Aquaphor, yes. Silver Sulfadine will mention too. I did ask for biological estrogen, but she said that’s for hot flashes, etc.
It’s a shock to learn all about LS. I’m sorry yours came back after 5 yrs! And the local laser didn’t work. I wish you good luck with your journey on this difficult road! 🍀

Hi @consekaus, the pain, itching and patchiness of lichen sclerosus may be similar to symptoms of a fungal skin infection. However, @2thfairy is correct that LS is not linked to a fungus, virus or bacteria.

"The exact cause of lichen sclerosus isn't known. It's likely a combination of factors, including an overactive immune system, your genetic makeup, and previous skin damage or irritation.

Lichen sclerosus isn't contagious and can't be spread through sexual contact. Read more from Mayo Clinic here:
https://www.mayoclinic.org/diseases-conditions/lichen-sclerosus/symptoms-causes/syc-20374448
You are correct that clobetasol is a steriod ointment commonly prescribed for lichen sclerosus. "At first you'll need to apply the ointment to the affected skin twice a day. After several weeks, your health care provider will likely suggest that you use it only twice a week to prevent symptoms from returning.

Your health care provider will monitor you for side effects associated with prolonged use of topical corticosteroids, such as further thinning of the skin."

Clotimazole is not typically prescribed for lichen sclerosus.

@kewp - I have had a recent "trip" through procedures that were necessary after having tracked m LS since it was diagnosed about 40 years ago.

PLEASE see a gynecologic oncologist for important oversight and care of this lifelong condition. My recent biopsy, at the end of 2023 raised concern, and identified I had developed precancerous VIN II/III (Vulvar Intraepithelial Neoplasia at the highest end of the I - III range). That necessitated a procedure called Laser ablation, done with a plasma jet approach. That took 7 weeks - for me - to heal from, and the biopsies taken just before that procedure on the day of the laser ablation raised another possible site of concern.

So after healing from the laser ablation (very important procedure for my case), a further biopsy was taken (POST procedure, 7 + weeks later), and fortunately, it was NOT precancerous.

I have used Clobetasol propionate 0.05% for years, to varying degrees, as directed by my gynecologist, and gynecologic oncologist recently. I am by far more concerned with finding myself diagnosed with a precancerous (VIN) condition again that can lead to cancer, than I am with thinning skin.

Given, in my case, how long I have had this condition, I have not had an issue with thinning skin.

Please consider reading more about this on academic/research sites like http://www.nih.gov (National Institutes of Health), for accurate information on this condition which still is not understood for its actual cause, and has no cure. BUT, it can be managed, thank goodness, with the Clobetasol. As these sites, and previous helpful posts have indicated, what is known is that it has possible genetic components/origins and is likely an autoimmune condition.

If you'd like links to more academic/research resources, just let me know.

DO stay on top of it with a reputable doctor or doctors.

Best wishes. You CAN manage it.

@brandysparks - Oh, 40 years of LS & now VIN II/III. What a nightmare but thankfully the laser plasma jet helped! Hopefully no more VIN. This condition can get frightening.
Thank you for your input on Clobetasol & seeing gyne oncologist. I was surprised to find a few in my city & will call to see who takes LS & do biopsy if needed. I do have autoimmune Hashimoto thyroiditis & another rare autoimmune condition in remission (🙏). Plus in 2017, the rare Trichoadenoma (not STD) which might be genetic, and I used Clobetasol then. I’m glad to hear it didn’t cause thinning in your case.
I’m thankful to see all the information on this site & I’m still trying to absorb it all! Thanks again for your valuable info from your actual experience. Much appreciated & good luck to you! 🍀

@kewp - You are most welcome!

Best wishes with your autoimmune conditions...

Glad to hear you've already taken action to locate a gyne oncologist - they should be familiar with LS, especially if they're at/affiliated with what's called a "teaching hospital" (I understand they tend to more current on R&D, etc.).

Also good to hear you've found this site to be helpful - it really is, in so many ways, and for so many subjects (as many of us seem to have multiple circumstances to contend with any more)!!

As always, if I can be of any further insight in terms of shared experience, let me know, and keep checking in on this site, and feel free to ask questions if you don't see them addressed on the MayoClinic site, too!

Warm wishes!

so sad that we have to wait for luck, insurance or the lottery to maintain our health

My inner labia are also gone due to my own personal ignorance & the ignorance of my women's health providers who had no clue what LS is. It sucks that this cannot be easily recognized & treated as any other autoimmune (or any other) disease. Screen, diagnose, treat, manage, educate, educate, & educate some more. For as dismal as education/information is for female LS patients, I cannot even begin to understand the male journey...fewer cases = even less recognition, study & progress...it must be even more daunting.

For all healthcare providers...if your care involves the urogenital/anal areas and your continuing education courses are not educating you on just the basics of LS, it is time they do. Please advocate for your patient demographic.

As a retired military provider, I know we did a lot of in house multi-disciplinary continuing education. Not seeing that so much in the general medical community. Maybe time for LS specialists to spend a little time educating less experienced practitioners how to manage patients & how to know when to refer for secondary/tertiary care.

@brandysparks

Quoting: "If you'd like links to more academic/research resources, just let me know."

As a retired medical provider, I already have access to NIH, MedLine, PubMed & others. If you could be so kind as to send share your compilation of resources, that would be great.

Happy to do so...I'm going to go back to collect them, though your access to those sources is beyond what I can access as a non-professional medical person.

I'll get back to you on this asap!

Have a good one!

@itchybits - My apologies for not getting back with resources I've found on Lichen sclerosus that are in addition to what you have access to. I'd "lost" my open tabs to these resources & am recreating them now.
https://lssupportnetwork.org/
https://www.lostlabia.com/ls-resources/
A group that I have not explored in any depth beyond their homepage and signing up for emails, reminders about upcoming video discussions.

You have access to this one:
https://www.uptodate.com/contents/vulvar-lichen-sclerosus-beyond-the-basics
https://clinicaltrials.gov/search?cond=lichen%20sclerosus
.
https://my.clevelandclinic.org/health/diseases/16564-lichen-sclerosus
And this is an interesting site:
https://rarediseases.org/rare-diseases/lichen-sclerosus/
I hope some of these may be insightful &/or useful.

Bottom line (for me): Clobetasol as directed by my gyne / gyne oncologist (with whom today I have a 3-month followup appt/exam - hope it's all clear for now!), and continued exams (lifelong, I think) every 3-4 months with my gyne, occasional biopsies as needed, and hope to not every have to go through the laser ablation procedure (or worse) again. I know, and read, much worse can develop, with lymph nodes involved, drains needed upon recovery, with the possibility of infection, and recurrence.

Best wishes...if you have any to add to this (that a nonprofessional can access), do feel free to share here!

Thank you, and well wishes.