Lichen Sclerosus: Any other women dealing with this disease?

@kewp yes, that’s a normal dosage of Clobetasol. My Phoenix urogynocologist also Rx Estrace 3xwk to be used on inner labia and figure 8 perianal region to help keep skin from thinning. You can always use Aquaphor in between times just to keep moist, and prevent injury to the tissue. Another cream I was Rx is Silver Sulfadiazine 1%, after a vulvar laser treatment. I use it on lesions that just don’t want to heal.

As far as seeing Dr Coyle, if you aren’t too far from him, I’d see him sooner than later. I first saw him when I felt completely hopeless and was amazed by his Tulip Procedure treatment and that he brought back my anatomy again, stopping the LS for a long while. I’ve had more than one treatment by him. It’s been 5 years since the last and I need to go back soon. (Last year my highly rated urogynocologist in Phx did two costly laser procedures with big promises and zero results. The LS was back in full force within 4 weeks. I won’t be making that mistake again.

I’m sorry you have this diagnosis. Just know LS IS manageable, and look to this forum for helpful ideas.

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! 🍀

@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! 🍀

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!

@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

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.