Lichen Sclerosus: Any other women dealing with this disease?

I have had it done 3 times with good results. The 4 th time I had a different doctor who didn’t do a good job. It is often used for women taking hormones after breast cancer and taking hormone suppressing drugs. It started off cosmetic. My doctor said it should absolutely be paid for by insurance it is so helpful for women.

@julievansickle This is a very helpful video about Lichen Sclerosis from the vulvovaginal clinic at Mayo Clinic.

Perfect timing. This video posted just a few hours before my annual appointment with gynecologist who deals with l.s. Already on clobetasol but will rediscuss topical estrogen. Helpful video. Thankyou.

@julievansickle @sue225 and others…
For what it’s worth this is what I have been doing successfully for Lichen Sclerosis. Has taken years, but this is the perfect cocktail for me. Everyone is different, so your regimen may vary. Confer with your doctor(s). I am focused here on the vulvovaginal region, but may pertain to other areas.

Lichen Sclerosis: Betamethasone did not work for me. Successfully using Clobetasol (Temovate). Per Mayo Clinic, every day initially (or if outbreak) until under control (1-2 weeks?), then 3x/week ongoing. That’s what works for me. Topical steroid ointment.

Cracks/fissures/tears/bleeding: For me, a tear or fissure triggers the lichen sclerosis and results in fusing/scarring. Per my dermatologist, I am successfully using Mupiricin (Bactroban). Daily until fissure(s) under control, then just as needed and often after sex. Couldn’t be having sex without it. Heals a fissure quickly before the lichen sclerosis kicks in. Antibiotic ointment.

Yeast: Per my doctor Mayo Clinic, #1 cause of fissures is yeast. Mayo prescribed one Diflucan (Fluconazole) tablet the first of every month to keep the yeast at bay. Seems to help.

Daily Moisturizer: Various, but I use a thin application of Aquaphor or Vaseline daily.

Lubricant for sex: Coconut oil externally. ‘Luvena Vaginal Moisturizer & Lubricant’ internally, if needed. Can get Luvena over the counter or online. Mayo Clinic advised some studies show Luvena (or similar product) internally 3x/week can keep inner tissues healthier as we age. (Ensure product is natural… does not contain sulfates, parabens, etc)

Estrogen: If needed for post menopause. Not directly related to Lichen sclerosis, but does complicate the issue. I was previously using the eString, which I absolutely loved. Insert vaginally and change every three months. However, I’ve discontinued due to breast cancer. Now cancer-free, may resume since cancer was triple negative for hormones. So far, I’ve been doing OK without it. However, It’s not uncommon to need a little of some form of estrogen. Confer with your doctor.

Realize this is a lot to consider and sometimes it can be a downer. However, relief from discomfort and being able to be intimate with my life partner is paramount. We pamper our faces, our hair, our nails, shave our legs, etc… I simply integrate it into my routine and move on. Sometimes I slip up, but then I just get back to it.

Hang in there! Hope this helps someone. Blessings to all. Grateful to be alive.

At f/u appt, accdg to gynecologist, there has been improvement! Pleasantly surprised. Guess the clobetasol works (for me). Suggested using Vaseline or coconut oil externally for dryness. Interesting info about "Luvena".
Thinking of trying a natural compounded estrogen cream as I seem to react to prescription estrogen.
As for sex, well as Joan Rivers (of blessed memory) once said, " the shop is closed."

@becsbuddy, Thank you so much for your kind reply. Your suggestion of a counselor sounds good. I have an appointment with the oncologist on February 21st and will inquire about that possibility. With all good wishes, @joybringer1

Congrats on your persistence… it’s paying off. 🙂

My dermatologist and rheumatologist agreed on a course of treatment to treat LS which pretty much covers my trunk. I took my first dosage of methotrexate (MTX) (2.5mil x 6) last night. To be taken once a week. Folic acid daily. Wish me luck.
I’ve also found a dermatologist in my area who does have UVb light therapy but is currently not taking Medicare patients. Her office told me to check back in April. I will. Maybe by then I’ll know if MTX is working.
Also, I did a self-referral to Mayo and was called by dermatology department within three days. They didn’t have appointment for me but did give me the contact of Mayo affiliate in Atlanta (five hour drive).

@gingerbear22 - Methotrexate is the only drug that worked for my psoriasis - but it took six months to clear my skin completely. Unfortunately I had to go off it after about three years because my dermatologist said I cannot stay on it long term because I have fatty liver disease. Biologics have not been as effective on me so far.

I’ve had this for several months. I was diagnosed my gynecologist. I started using intravaginal estradiol cream to help with atrophy and vaginitis. Still having issues but the itching has improved.