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Lichen Sclerosus: Any other women dealing with this disease?
Autoimmune Diseases | Last Active: Nov 12 9:01am | Replies (323)Comment receiving replies
The area of my body that is affected is my female genitalia. I had what I thought was recurring yeast infections three years ago, but as it turns out it was lichen sclerosus. I battled what I didn't know was an autoimmune disease for a year or more before my diagnosis. My gynecologist referred me to an oncologist who specializes in this disease. Since I've been seeing this oncologist, I have gone through two compound meds along with amitriptyline for pain. I continually have micro fractures in the skin so I have multiple scars. The compound I use now worked wonders for itching, burning and discomfort somewhat. I still have thinning, white skin and there is now no separation in my genital area. My labia has all but disappeared and I'm scared to death. I reached out to a doctor in Abilene, Texas who treats this disease with laser technology but while I'm definitely up for a trial, she doesn't accept my insurance so visits along with treatments are going to be brutally expensive. I'm not sure what I'm going to do. *I'm hoping for Publishers Clearing House to come knock at my door!
Replies to "The area of my body that is affected is my female genitalia. I had what I..."
so sad that we have to wait for luck, insurance or the lottery to maintain our health
My inner labia are also gone due to my own personal ignorance & the ignorance of my women's health providers who had no clue what LS is. It sucks that this cannot be easily recognized & treated as any other autoimmune (or any other) disease. Screen, diagnose, treat, manage, educate, educate, & educate some more. For as dismal as education/information is for female LS patients, I cannot even begin to understand the male journey...fewer cases = even less recognition, study & progress...it must be even more daunting.
For all healthcare providers...if your care involves the urogenital/anal areas and your continuing education courses are not educating you on just the basics of LS, it is time they do. Please advocate for your patient demographic.
As a retired military provider, I know we did a lot of in house multi-disciplinary continuing education. Not seeing that so much in the general medical community. Maybe time for LS specialists to spend a little time educating less experienced practitioners how to manage patients & how to know when to refer for secondary/tertiary care.
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I am so sorry you are going through this. I too have the results you have. Very sad to say. I have been dealing with this for years but didn't get an actual diagnosis until a few years ago. So I have damage . I use Clobetasol whenever mine gets bad which is often. Since it is autoimmune, it makes you wonder if laser will help ? Not sure what the laser does , have they told you ?
Take care, thank you for your post.