Lichen Sclerosus: Any other women dealing with this disease?

Just sharing that I checked out the Lichen Sclerosus Support Network as suggested by one of the posters (thank you!). They are offering a 3-day Mini Summit for Vulvovaginal Conditions starting this Friday, 9/29. A “basic” lecture about LS will be delivered from 10am-11:30am EDT that day.

I am only just beginning to learn about this having been told at a recent oncology appointment that I might have this condition. I don’t know if there will be information that is valuable for those of you far down this road, but wanted to share what I know so far. The cost for me was $25. People wanting access to the recorded sessions indefinitely can pay a higher price ~$125.

My very best wishes for pain relief for those suffering. It does make sense to me that THC (with some CBD) could bring effective relief. I will keep this in mind for myself for the future.

I’m dealing with it, but I use a maintenance dose of Triamcinolone 0.1% ointment M W F nights, may increase for I week with flares, then return to maintenance. breakouts at the recommendation of my physician at Mayo Clinic. It’s still miserable during flares, but this at least helps decrease flares. Best of luck to her.

My doctors told me the same thing. I even saw a Vulva specialist who confirmed diagnosis. I’m very curious about this treatment.

I use Clobetasol during flare-ups. Never an odor. No blisters. Happy to have been prescribed it years ago.

I will now google clobetasol because I was told it thins the skin!!! Who to believe!!!

Hi Everyone,
I read all your comments with interests - thank you so much for posting them.
I have just been diagnosed with vulva lichen sclerosus. The recommended medication was steroid ointment. I haven't started it because I have osteoporosis and I am anxious about the possibility of some bone resorption. I have another chronic inflammatory disease - MGUS. It can't be treated with any medications and has led to bone resportion. I am not on any medication for osteoporosis either. I am about to enrol in a special exercise program for osteoporosis which I hope will keep it stable. My reading is just a little bit over the range.
(1) I would be so grateful if anyone can tell me if they are using a non- steroid ointment which is working or any
other treatment apart from steroid ointment.
(2) Does anyone have another chronic inflammatory disease co-exisiting with Lichen Schlerosus.
Essie
PS I was told that a cold bath with Epsom Salts would help the itching. You need to stay in the bath for at least 10
minutes.

My best friend divorced after 42 years of marriage and she's suffered with this for decades now.

She met someone on Match.com and soon told him. As with most men of "a certain age", he was unable to perform sexually.

They had a beautiful beach wedding and have been married 5 years now, currently 73.

Don't give up hope. Put it right in your dating profile that you are not seeking a sexual partner for yourself but a demonstrative loving partner relationship in every other way. There are so many men, again, in our age range that cannot achieve erections because of the aging prostrate.

Good luck!!!

Clobetasol does thin the skin. Use it sparingly. It relieves for a while.

Hello Everyone,

This is my first time posting. I have had Lichen Sclerosis of the genitals for 16 yrs. I tried all the creams and ointments prescribed to me, but it seemed hopeless. My Aunt uses herbal medicines and suggested I try Neem Oil mixed with Green Tree Extract, after a week of using this It’s went away! I was very surprised, so the net time I had a flare, I used this same treatment and after a few days it was gone again. Over the years this has worked for me. This is my experience, please consult your doctor before trying this. I also have Morphia with Lichen Sclerosis and this treatment has slowed down the skin changes I have experienced. Don’t lose faith.
I hope this helps someone!

How wonderful that Neem Oil and Green Tree Extract has worked for you. I will consult my doctor and try it. Thank you.