Mayo Clinic Connect
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.
Welcome to Connect. 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 @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
@kitten92, would you share which area of your body it has affected, and what symptoms led to the diagnosis?
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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!
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@kitten92. Following is what I posted March of last year– I hope thIs helps. I forgot to put in my original post that I also used a compound RX which contained hyloronic acid (not sure of spelling). I am happy that this condition is now under control.
Lichen Sclerosus is now under control after years of doctoring but finally finding Dr. Nyirjesy from Drexel University College of Medicine in Philadelphia, PA who I’ve been with about four years.
My symptoms were extreme itching and burning constantly everyday. I would come home from work and get in a hot bath hoping it would take away the burning and itching. These symptoms were very bad. I went to many doctors over the years and took many medications– to no avail. Nothing seemed to work.
I am now using Betamethasone (gel to apply externally), Vagifem (insert vaginally)– both twice a week. Amitriptyline (10mg daily) which is for depression but it was learned that it helps with Lichen Sclerosus but now I will be weaned off of it since my symptoms are under control.
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Glad you were able to find the right specialists and treatments. My condition is not so much the burning and itching, but just yeast growth. Even a small glass of natural apple cider will create a “branching effect” that migrates up the fallopian tubes. So I have a condition ripe for candida growth in my body. I’ve been fighting this for a year on strict diets, natural foods, no to low sugar substitutes like stevia, etc., apple cider vinegar, fermented foods, etc. and managed to get it down somewhat. However, I cannot live without antifungals and probiotics and use them daily. Eventually I’ll have to contact a candida specialist to find out what exactly will kill this growth. I appreciated your comments regarding Lichen Sclerosus and will definitely research that a little more.
After my research and finding a specialist in Abilene, TX. I am scheduled for my first, of three, laser treatments. There is no down time and it’s said to be virtually painless. My insurance isn’t accepted at this facility but it’s worth it, in my opinion to at least give this a try. I’m hoping for a reversal in the damage that’s been caused and most of all, NO MORE PAIN. I can’t imagine what it’s going to feel like to be my old self! *Thank you Lord!!
I wish you well and please let us know how you make out.
Thank you so much, and WILL DO!!
Good luck Did not know about this option . Im going to research with my provider . please keep me informed Hope you get great results
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The laser procedure I’m having is called Mona Lisa Touch. I’m not sure where you’re located but there is an office in both Abilene, Texas and Dallas, Texas (I believe). Thank you and I will keep you informed on how things go.
@kitten92, Hi kitten, sorry to barge in. I too have this. I use clobetosol salve. Seeing an oncologist for me is new. Ive just seen my gynecologist. Yeah im ok til it starts itching or hurting. Can you let me know how things with you too?.
Hi I havw found helpful in the moment ..looking for longer and healthier relief liking forward to see how the labor t's works
I sure will. Keep your head up. Good things come to those who wait. 🙂
@kitten92, Hi there. Just thought i would check in on you and see how you are doing. Did you get your surgery and i hope all is going well for you..
I’m well, thanks. Hope all is well with you!! My laser therapy, first session, is not until the 28th of this month.
My first laser treatment happened this morning. It was a good start to getting me back to normal. 🙂 I’m a little swollen, have a little spotting and have some mild pain. Lidocaine was prescribed and IT HELPS!! I go back for treatment #2 on Aug. 9th. All and all I am feeling well and I am actually looking forward to getting back to the ole’ routine tomorrow. *I am full of hope with a sprinkling of anxiety 🙂
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