Issues with Lichen Sclerosus Vulva

Posted by aratner @aratner, 4 days ago

I have had this condition for six years and the directions i have gotten kept changing.
Most of the time i suffer from a burning sensation, sometimes inching and pain during intercourse.
Lately I am applying Clobetasol twice a week and Vaseline daily.
Could you please share what your treatment plan if it helps you to control the symptoms. Thanks!

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

marquis113 | @marquis113 | 4 days ago

Clobetasol every other evening

aratner | @aratner | 4 days ago

In reply to @marquis113 "Clobetasol every other evening" + (show)

How long have you been doing it?

ronag | @ronag | 4 days ago

Clobetasol twice a week, Estragyn cream twice a week (on different days), and vaseline, or aquaphor, or emu oil multiple times a day (ie after shower or going to the toilet). Vaseline and aquaphor serve as barriers and so keep the area dry from my occasional urine leakage and the emu oil supposedly penetrates deep into the dermis to keep the vulva area well hydrated. The estragyn cream is placed internally, but the doctor suggested smearing a bit on the vulva too.

aratner | @aratner | 3 days ago

In reply to @ronag "Clobetasol twice a week, Estragyn cream twice a week (on different days), and vaseline, or aquaphor,..." + (show)

Thank you so much! Makes a lot of sense. I will definitely try it!

aratner | @aratner | 3 days ago

In reply to @ronag "Clobetasol twice a week, Estragyn cream twice a week (on different days), and vaseline, or aquaphor,..." + (show)

BTW, What do you use for washing the area? Thanks!

gmabecky1955 | @gmabecky1955 | 3 days ago

My journey began with the fact it took 10 years to be diagnosed which means I have quite a bit of scar tissue. My dermatologist made the diagnosis. Needless to say I changed my gynecologist. I currently see both my dermatologist and my gynecologist yearly. I've had this condition for about 26 years. I had to spots biopsied for cancer and thankfully they were negative.

I use Aquaphor 1 % anti-itch cream in the vaginal/vulva area once or twice daily. I also use regular Aquaphor in the anal area at least once daily. I am very comfortable now. Note I also use Estrace cream on the vaginal opening once or twice a week.

Other recommendations: use Dreft laundry soap for babies or similar, don't use dryer sheets (I use dryer balls), use mild soap such as Dove or Norwex wash rags that don't require soap, pat - don't wipe, use Charmin toilet paper with Aloe Vera or similar, limit any bike riding or at least "grease" up when you do and use padding.

I also have found that Jockey Worry Free underwear is really nice. It is slightly padded but mostly is important as with all the lotions I don't have to worry about anything showing through my clothes.

Everyone is so different but I hope some of these ideas might help you out and give you hope!

aratner | @aratner | 3 days ago

In reply to @gmabecky1955 "My journey began with the fact it took 10 years to be diagnosed which means I..." + (show)

Thank you a bunch! It seems like I need to see a dermatologist. Did you see a genital dermatologist?

gmabecky1955 | @gmabecky1955 | 3 days ago

No, just my regular one.

Becky, Volunteer Mentor | @becsbuddy | 3 days ago

@aratner Welcome to Mayo Clinic Connect! I think you can see that members are very helpful.

ronag | @ronag | 2 days ago

In reply to @aratner "BTW, What do you use for washing the area? Thanks!" + (show)

aratner: My washing routine is simple. In the shower I use a mild soap (Ivory or Neutragena) around the area, but just water on and between the labia. When necessary I'll use a wet washcloth to clean the labia between showers, always gently patting, never rubbing and drying well.
I also found Charmin to be the softest toilet paper.