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Anyone have success with treatment for vaginal Lichen Sclerosus?

Posted by bethdoraine @bethdoraine, Jul 16 7:04pm

I have had vaginal Lichen Sclerosus for many years with several flareups. I am interested in learning of any successful treatments or recommendations.

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gmabecky1955 | @gmabecky1955 | Jul 8 12:12pm
In reply to @aratner "I have had this condition for six years and the directions i have gotten kept changing...." + (show)
Profile picture for aratner @aratner

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!

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No, just my regular one.

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Jul 8 10:13pm
In reply to @aratner "I have had this condition for six years and the directions i have gotten kept changing...." + (show)
Profile picture for aratner @aratner

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!

Jump to this post

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

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ronag | @ronag | Jul 9 8:02am
In reply to @aratner "BTW, What do you use for washing the area? Thanks!" + (show)
Profile picture for aratner @aratner

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

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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.

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bluesmoke | @bluesmoke | Jul 9 9:28am
In reply to @ronag "Clobetasol twice a week, Estragyn cream twice a week (on different days), and vaseline, or aquaphor,..." + (show)
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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.

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This is same treatment plan my dr has me on except for the emu oil. I feel like I have finally got the right treatment after 14 years of trying this and that.

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laine48 | @laine48 | Jul 9 2:19pm
In reply to @aratner "I have had this condition for six years and the directions i have gotten kept changing...." + (show)
Profile picture for aratner @aratner

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!

Jump to this post

Clobetasol three times a week and vaseline as needed between dosing days. Clean when needed after toileting with Water Wipes (Amazon). Shower with Vanicream for sensitive skin, but only use water on treated regions. Wear cotton underwear, white fabric in the crotch, wash in lingerie bags with Arm and Hammer free and clear sensitive skin detergent, extra rinse. Dry in bags too. No wool balls in dryer. Do not wear underwear to bed. For intimate use, individual packets of coconut oil is the most lubricating.

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marquis113 | @marquis113 | Jul 10 8:44am
In reply to @aratner "How long have you been doing it?" + (show)
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How long have you been doing it?

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Over a year

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 19 6:57am

@bethdoraine, I moved your question to the Autoimmune Diseases support group, where you will find these and other active discussions about lichen sclerosus.

- Issues with Lichen Sclerosus Vulva https://connect.mayoclinic.org/discussion/issues-with-lichen-sclerosus-vulva/
- Lichen Sclerosus: Any other women dealing with this disease? https://connect.mayoclinic.org/discussion/lichen-schlerosus/
- Can anyone provide their care plan for lichen sclerosus? https://connect.mayoclinic.org/discussion/can-anyone-provide-their-care-plan-for-lichen-sclerosus/

See all: https://connect.mayoclinic.org/search/discussions/

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bethdoraine | @bethdoraine | Jul 22 11:52am

Pure Emu Oil has been the best help whenever I have had flare ups

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ronag | @ronag | Jul 23 6:45am

I use the emu oil daily.

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