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.

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alju | @alju | Jan 3 10:06am

In reply to @joybringer1 "@kimroepke, I agree about certain fibers in clothing causing flares. I never could wear wool next..." + (show)

I'll try the mens underwear; I have a drawer full of panties I can't wear, and keep trying to find some I can use. The most comfortable garment I have is a soft, cotton knit pair of lounge pants, very full in the legs and crotch . I am trying to find more of this style. The problem is newer ones, unlike this old pair, have big, lumpy seams, uncomforable because of the sharp, scratchy thread and are too tight. I can't wear tight fitting anything. Am trying to find skirts that aren't too short or youthful . Does the druggist determine the formula for the compounded lidocaine or the dermatologist? Can you use it daily, long term ? I looked at OTC 4% lidocaine product and the directions said not to use on irritated or swollen skin so I didn't get it. But I need to find something for this constant discomfort. I agree about need for research and more effective solutions. I refer to rxlist.com on the pros and cons of drugs; too often the negatives push me into a limbo stage of doing nothing, which is very not good.

mary47 | @mary47 | Jan 3 10:08am

In reply to @kimroepke "It definitely goes into remission at times, but unfortunately it comes back too often with me...." + (show)

Thanx for your reply. I have a lot of stress and have for awhile. I wonder if that is part of my problem.

alju | @alju | Jan 3 10:20am

In reply to @auburn2000 "I have not seen your earlier posts . Can you tell me what the laser accomplished..." + (show)

I am wondering about the laser treatments also. Have read several references and commens but no details ; what is the purpose of that approach and desired outcome? Is some tissue being removed or what? Would really like to know.

Thank you

joybringer1 | @joybringer1 | Jan 3 1:12pm

In reply to @alju "I'll try the mens underwear; I have a drawer full of panties I can't wear, and..." + (show)

@alju, My GYN prescribes the compounded cream. We have tried so many different variations of the cream, but thus far this one works the best. I use it all the time. I can apply every 3 hours. To me, it is better than taking pain pills so I continue with this. Yes, my skin is irritated, but I get some relief from the compounded RX. My medical insurance does not cover compounded drugs and I pay for this each time. It takes my pharmacy 3 days to prepare the compounded mixture so I have to watch the remaining supply and I am sure to get the RX when needed. I can find skirts that are long enough because I am short. It is great in summer when I can wear my men's underwear under a skirt and no one is the wiser. With all good wishes, @joybringer1

k3lliott | @k3lliott | Jan 4 8:22am

In reply to @k3lliott "Also wondering about potluck swimming pools..." + (show)

Meant to say PUBLIC swimming pools

gjs | @gjs | Jan 4 8:40am

I have has LS for several years. I have tried several products but I use Clobetasol twice a week and when I have a flair up I use it until it gets under control.
If I use certain toilet paper it will cause a flair up. I mentioned it to my Gynecologist and she said that some toilet paper has formaldehyde in it. I believe that to be true because if I am out during the day and I use the restroom I will have a flair up. So keep that in mind when you have a bad day.

alju | @alju | Jan 4 10:48am

In reply to @joybringer1 "@alju, My GYN prescribes the compounded cream. We have tried so many different variations of the..." + (show)

I will try to find a compounding pharmacy and look into getting this. I know if I can have any improvement in this nightmare condition , it will surely lift my spirits. Best wishes to you as well .

kittycalhoun | @kittycalhoun | Jan 4 10:57am

Eating plain yogurt every day seems to control the itch.

rashida | @rashida | Jan 4 4:52pm

In reply to @mary47 "I have been struggling with LS for two years. My OBGN prescribed clobetesol but it hasn't..." + (show)

@mary47 Yes, you can keep it under control with medication that works for you (every body responds different to medications) but being an autoimmune condition there is no permanent cure for it.

rashida | @rashida | Jan 4 4:57pm

In reply to @gjs "I have has LS for several years. I have tried several products but I use Clobetasol..." + (show)

@gjs I believe you are right, in that toilet paper can affect you. Which toilet paper in your experience has the formaldehyde, and which one are you using that doesn’t? I have been using Clobetasol ointment too, to keep LS in control but would like to avoid toilet paper that does contain chemicals like formaldehyde. At the moment I am using Charmin, and sometimes have used the Kirkland brand.