Mayo Clinic Connect
Anything out there that works other than steriods
Liked by kellyj2b
Welcome to Connect. We are glad you found us. It’s a great place to learn what other members with similar health problems are doing for treatments. We have a few discussion on Lichen sclerosis that you may wish to view:
Lichen sclerosis: http://mayocl.in/2qfR0YN
Lichen Sclerosus: http://mayocl.in/2qR0zBk
In the meantime, I’d also like to introduce you to @kitten92 @mzleah @danybegood1 @tropicallady1276 @momij who have all discussed this condition, and I’m hoping they will share their insights with you.
Here is some information from Mayo Clinic: http://mayocl.in/1P0u1JG
@ret18, can you share which area of your body it has affected, and what symptoms led to the diagnosis?
Liked by Kanaaz Pereira, Connect Moderator
Good morning @ret18. Several things I can tell you about this disease begin with getting rid of any soaps, laundry soap included that contain dyes and perfumes. These, for me, were true irritants. Keep the area clean and most importantly dry. Also, keep in mind that steroids could thin the skin over time so ask your gynecologist to either give you a mix of topical ointments or find a doctor that specializes in this disease. I started, luckily, with an oncologist who helped me TREMENDOUSLY. Because I carried my disease around, untreated, for so long my skin became paper thin and I had constant fractures of the skin that were very painful and caused scarring. Most recently, I found that CO2 laser therapy can help and it certainly has for me. Please don’t hesitate to message me. I’d be happy to help in any way I can. Perhaps I can at least point you in the right direction. Keep in mind, everyone is different and just because something works for one, doesn’t necessarily mean it will work for all. ***Keep your head up and I promise you there is help out there!!***
Liked by John, Volunteer Mentor, Kanaaz Pereira, Connect Moderator
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Hello @kitten92, Thank you for sharing what has helped you. This is valuable information and I’m sure will help @ret18. To protect your privacy, I’ve asked a moderator to remove your personal email address. It’s much safer to send a private message to another member by clicking on their Connect name @name and clicking the Send Private Message link at the bottom of their profile description. Then you can share the personal email address in the private message if you want.
Thank you!!! Appreciate you looking to keep me safe. 🙂
Hi @kitten92, you’ll notice that I removed your personal email address from your message above. Connect is a public website, so we recommend members use the private message to exchange personal contact info. Thanks.
Liked by John, Volunteer Mentor
Yes ma’am. Thank you!!!
this is a different topic but i think worthy of mentioning. Upon my first visit to Dr. so and so i was told that if i do not take the prescribed medication for my RA and PA he will discharge me as his patient. The medication was one of the new ones being advertised on TV. with horrible side effects. So now i am still looking fo a Rheumatologist.
Thank you so much for any information that you have. Ret18
Also, supplements such as Vitamin C and Marine Collagen Peptides are very good for keeping your skin healthy, among other great benefits they both provide. Loose clothing to prevent friction which will cause itching to worsen will be of help to you. *Keep your chin up. Things DO get better. Try, as hard as it is, to be patient. 🙂
What I use after every bathroom visit is a bidet bottle filled with warm water to flush away what is left on my private area. I feel cleaner doing this. My LS is now under control and I want to keep it that way.
I need to know more about lichen sclerosis and the best ointments to use. Also, if it's related to any other skin conditions you know of.
You probably need to go to a doctor for medication and direction. LS is a pain but the itching can be controlled.
I have vaginal Lichen Scelrosis. I went to many doctors through the years who did not help me. I finally found Dr.Nyirjesy in Drexel University College of Medicine in Philadelphia PA who got my Lichen Sclerosis under control after a few months. It can be on other parts of the body but not in my case. There were no over the counter creams, etc but none worked for me.
I have been using a prescription, Clobetasol, from a gynecologist for at least 4 years,. This keeps the itching under control. I'm not sure if using this for many more years is safe. Has anyone been using this ointment for a long period of time and what are your thoughts on this? It seems there is not a lot of info about this condition out there. I never could find out what kind of disease it is. Is it autoimmune?
Lichen Sclerosis is an autoimmune condition. I once used Clobetasol for a week or so but did not work for me. I now use Betamethasone DP AUG 0.05% and Vagifem 10 MCG– twice a week. It took a few months to get it to where it came under control. Also, Amitripline 10mg every day. Amitripline is used for depression but it was learned that it helped with LS.
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