1. < Autoimmune Diseases

Newly diagnosed and confused over treatment for lichen sclerosus

Posted by ronag @ronag, Jan 24, 2023

I've been diagnosed with lichen sclerosus. I have questions as to what is the best treatment: which steroid and at what dosage. My gynecologist initially prescribed mometasone cream 0.1% twice a week. This didn't really control the itching. My dermatologist is recommending clobetasol ointment 0.05% once a day for 2 months, followed by twice weekly forever. Itching, while not completely gone, is certainly more controlled after a week's treatment with the clobetasol. However, I'm a bit concerned over using it daily for 2 months. Can you please share what's worked for you? Can I expect to be using a steroid for life? To throw into the mix--I have long covid. Thank you for any help in navigating this.

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Nov 29, 2023
In reply to @ma31302 "On this note, I'm newly diagnosed myself and completely lost. I have 0.1 steroid ointment once..." + (show)
@ma31302

On this note, I'm newly diagnosed myself and completely lost. I have 0.1 steroid ointment once a day for 2 weeks and then drop it down to twice a week. The architecture changes to my vulva already happened. I am devastated and don't know what specialist to help with my condition.

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@ma31302 I found this yesterday and I thought you might find it helpful. One of my sisters sent it to me (they both have autoimmune conditions). It’s a very long article so I singled out the sections on lichen sclerosis. Tap on the photo to enlarge it.
Do you think it might help?
REPLY
alju | @alju | Nov 30, 2023
In reply to @marcief "Hi! I’m totally new here and this post caught my eye. I was diagnosed with LS..." + (show)
@marcief

Hi! I’m totally new here and this post caught my eye. I was diagnosed with LS about 8 years ago. The only treatment I’ve been prescribed is clobetasol 0.5% ointment. When I have a flare (non-stop burning), I do a Yoni steam using a blend of cooling herbs I purchased from an Etsy store after consulting with my bestie, who’s a Midwife/Herbalist/Yoni specialist. It’s very soothing and doesn’t involve having to use a steroid cream or add another pill to my already overloaded regimen. HTH!

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Would you expand on what a Yoni steam is. I am not familiar with that.
I was just wishing that I could find someone like your friend who had a more
naturopathic approach to this condition. I am concerned about the long term use of these steroids; my skin was already thin and overly sensitive before I started using any. alju

REPLY
1 reply
marcief | @marcief | Nov 30, 2023

Hi! Yoni steam is also known as vaginal steaming (although technically it should be called vulvar steaming). Proper steaming conditions will not burn nor scald you. My bestie instructed me to boil a stock pot halfway full of water and put it on the stove to boil. As it comes to a boil, add your herbs, put a lid on the pot, and steep for 5 minutes. Place the pot in your steaming chair, and sit on your chair for 20 minutes.

REPLY
1 reply
alju | @alju | Dec 1, 2023
In reply to @marcief "Hi! Yoni steam is also known as vaginal steaming (although technically it should be called vulvar..." + (show)
@marcief

Hi! Yoni steam is also known as vaginal steaming (although technically it should be called vulvar steaming). Proper steaming conditions will not burn nor scald you. My bestie instructed me to boil a stock pot halfway full of water and put it on the stove to boil. As it comes to a boil, add your herbs, put a lid on the pot, and steep for 5 minutes. Place the pot in your steaming chair, and sit on your chair for 20 minutes.

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Thank you ; an interesting concept, never heard of this.

REPLY
acb32 | @acb32 | Dec 1, 2023
In reply to @alju "Would you expand on what a Yoni steam is. I am not familiar with that. I..." + (show)
@alju

Would you expand on what a Yoni steam is. I am not familiar with that.
I was just wishing that I could find someone like your friend who had a more
naturopathic approach to this condition. I am concerned about the long term use of these steroids; my skin was already thin and overly sensitive before I started using any. alju

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My derm. put me on clobetasol. Worked like a charm......very quickly. I was not given a time......I now just use it when itchy. Good luck!!!

REPLY
1 reply
alju | @alju | Dec 2, 2023
In reply to @acb32 "My derm. put me on clobetasol. Worked like a charm......very quickly. I was not given a..." + (show)
@acb32

My derm. put me on clobetasol. Worked like a charm......very quickly. I was not given a time......I now just use it when itchy. Good luck!!!

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The majority of posts refer to "itching" which I don't have , so I am beginning to wonder if I have something else. I do have burning and constant pain when I'm seated simply from body weight pressure I assume. I have not had a biopsy so far but it looks like that is the next step, which I really dread. The Clobetasol does not seem to be helping and I've used two other steroids as well. This problem is more upsetting than anything I've ever had to deal with and I have other medical issues.

REPLY
1 reply
acb32 | @acb32 | Dec 2, 2023
In reply to @alju "The majority of posts refer to "itching" which I don't have , so I am beginning..." + (show)
@alju

The majority of posts refer to "itching" which I don't have , so I am beginning to wonder if I have something else. I do have burning and constant pain when I'm seated simply from body weight pressure I assume. I have not had a biopsy so far but it looks like that is the next step, which I really dread. The Clobetasol does not seem to be helping and I've used two other steroids as well. This problem is more upsetting than anything I've ever had to deal with and I have other medical issues.

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A biopsy is a simple procedure. Nothing to fear. Good luck.

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