Lichen Sclerosus: Any other women dealing with this disease?

Posted by Kitten92 @kitten92, May 22, 2017

Is anyone out there dealing with this disease? I am currently using a compound ointment that my oncologist prescribed but I'm looking for possible lazer treatments or anything else that might now be available.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Profile picture for kitkat1958 @kitkat1958

Yes, I have had LS for over a year now, using various creams, little relief.
I found a place in Pensacola FL that does a 3 day treatment involving laser treatment. I plan on contacting them when I return to FL in the fall.
I have read that laser treatment is not good for you, but at this point I am willing to pay the price to be symptom free. It has also affected my relationship with my spouse

Jump to this post

I have had LS for over 10 years and currently in remission. Last flare up 1 1/2 years. Only med that worked Clobetasol.

REPLY
Profile picture for allthesingleladies12 @allthesingleladies12

Yes I'm post menopause 10 yrs and thought it was just vaginal dryness soreness crazy itchy .. till my dr informed me it's lichen sclerosis
It's horrendous 😫

Jump to this post

I received the StrataMGT. It brought me so much relief. I ordered from Amazon. I saw my dermatologist today and she gave me a better report than usual. She has me using Opzelura daily, clobatezol 3x week and the StrataMGT. The LS is best it’s been in a long time. Now if I can find a soap for shower. I flare every shower.

REPLY

My post seems to have gotten lost so I'll repost. I use estradiol cream 3 times a week 1/2 tube and I'm about to get progesterone to go with that. Also, Clobetesol oitmemt and pyridium as needed. I have real urological issues and this seems to keep them mostly at bay. It's tough though. A constant battle.

REPLY
Profile picture for gaggy @gaggy

I received the StrataMGT. It brought me so much relief. I ordered from Amazon. I saw my dermatologist today and she gave me a better report than usual. She has me using Opzelura daily, clobatezol 3x week and the StrataMGT. The LS is best it’s been in a long time. Now if I can find a soap for shower. I flare every shower.

Jump to this post

@gaggy I use Ivory bar soap. I can’t use any other soap - not even Ivory in other forms, e.g., liquid. Just the bar soap.

REPLY
Profile picture for allthesingleladies12 @allthesingleladies12

Yes I agree toilet paper is uncomfortable to use .. I use toilet wet wipes mostly then pat dry

Jump to this post

Have you tried Cottonelle toilet paper?
It helps me

REPLY

Thanks il try that 👍

REPLY
Profile picture for gaggy @gaggy

I received the StrataMGT. It brought me so much relief. I ordered from Amazon. I saw my dermatologist today and she gave me a better report than usual. She has me using Opzelura daily, clobatezol 3x week and the StrataMGT. The LS is best it’s been in a long time. Now if I can find a soap for shower. I flare every shower.

Jump to this post

My Dr has me using dermovate ... opzelura might be best for me especially it's not a steriod cream thank you for replying I'm new to this site

REPLY
Profile picture for minnesota10 @minnesota10

Have you tried Cottonelle toilet paper?
It helps me

Jump to this post

@minnesota10 and @allthesingleladies12 I used Cottonelle years ago and found it clogged up the toilet. I use Charmin Extra Strong which does not disintegrate with the slightest wetness, and does not clog the toilet either. The only thing I don’t like about Charmin is that the sheets are so small - at least, that’s the case with the Charmin bought in Canada.

(@minnesota10 you and I should be paid for promoting both these brands, eh? 😉)

REPLY

Hi sorry for my delay in responding.
I have been prescribed Estradiol Vaginal Cream USP , 0.01 and Clobetasol Propionate Cream.
I do not feel I have gone into a remission maybe a couple of days in the past year. Seems I am more uncomfortable, inflamed with friction irritation sometimes burning like UTI. ( I have had several UTI tests in last year all negative).
Only had the itching and white patches in the beginning when I diagnosed myself. My gyno and primary seemed to have no knowledge, my dermatologist a little more knowledgeable and my kidney MD said I was probably using too much cream and his PA had no idea what LS is.
Sorry for rambling but getting very discouraged.
I am 67 and have multiple autoimmune issues and my mom at 93 had LS a couple of flares only, cleared right up.
Any suggestions you may have would be good.

REPLY

I am looking for specific brand name products to use in addition to the steriod cream? Lubricants, soaps and other helpful products.

REPLY
Please sign in or register to post a reply.