Lichen Sclerosus, i've never used clobetastol
Posted , 5 users are following.
Hi, Hope everyone is doing well!
So where do I start
I guess some background, I am a guy in my mid 20's, and I the signs and symptoms of lichen sclerosus since about 18. My main symptoms are the white scarring, itching, burning. So after reading tons of stuff online about this condition over the years, I knew I had this problem. After building up the courage to see a dermatologist through the nhs. I was told I have eczema (no biopsy), and was prescribed a mid strength steroid cream which basically did help with some of the inflammation, but that was about it.
I know in my heart that I need to get a biopsy and get on a better medication, but my follow up appointments always seem to get cancelled last minute. And obviously with what the world is going through right now, this seems unlikely for quite sometime. So I am stuck with no appointment and no medication, and honestly I feel like I am losing myself physically and mentally day by day, so i thought id jump back onto this site which has given my so much hope in the past.
I have cut out sugar and dairy a long time ago, but I still flare up from time to time, recently I have cut out gluten to see if this helps but its early days, although it feels like a lifetime.
I have some questions about the steroid cream that is usually prescribed for lichen sclerosus.
Does it really get rid of the white patches/scarring on the skin? (this is honestly my biggest worry)
Has anyone successfully kept there ls scarring at bay with the clob continually or does the cream just stop working after a while?
Honestly thank you for everyone who takes the time to help me at this time, feeling so low right now, and wish everyone who is having to go through this all the best on there journey.
0 likes, 3 replies
do21103 TheSpaceDust
Posted
I don't know how it works with penises (i have a vagina 😃 ) but you should definitely try to use coconut oil about 3 times a day. It helps me a lot. I've used steroids for about 8 years and stopped about a year and a half ago. Since then I've been only using coconut oil and a special natural compound that my doctor prescribed me.
vickie00010 TheSpaceDust
Posted
hi...I have been using the "steroid" cream (like the size of a pea) for about 3 years now with great success...I also use a hormone cream (Estrace) and have had a very good result with that also...I use the steroid 2 times a week and was told by my doctor (I am here in the US and see a doctor that specializes in LS at Jefferson University in Philadelphia)....he told me I would be using BOTH creams for the rest of my life (I am 68 years old)...they work VERY well for me and I hope work well for u..
pamela70431 TheSpaceDust
Posted
firstly i will say that i am a staff nurse to trade and i also suffer from LS and have done for many years.
scarring is scarring , it will not go away. there may be surgery available via a urologist. personally if i were you i would
be seeking a urology referral to a clinic that specialises in genital urinary skin problems as dermatologists in my personal experience actually don't know much about or successfully treat LS.
i am exceptionally fortunate to have a gynaecologist who specialises in genital skin care. i am one of the unlucky few who
have no relief from any LS "flare ups". i have this all the time with no end. i am so sorry to hear that you are suffering.
i have no clue as to the male progression of LS but if it is anything like the changes women can suffer then you should be keeping a check on your glans penis and foreskin. with ladies their labia's and clitoris literally are reabsorbed by the body. i have no idea what can happen with males. take care of yourself and keep pushing for help. x