Lichen Sclerosus: Any other women dealing with this disease?

Lichen sclerosis ant women dealing with this ?

Hello @mzleah,

Welcome to Connect. Lichen Sclerosus can be so irritating to the skin; here is some detailed information from Mayo Clinic:
http://mayocl.in/1P0u1JG
@rabbit10, @jmgm, @tropicallady1276, @julievansickle, @katzee, @fernanddia, @kam2005, @jp711, @momij have discussed it in the past, and I hope they return with more information. You can also see their discussion by clicking on this link: http://mayocl.in/2ku2E3z

@mzleah, could you tell us a bit more about your symptoms? Has your doctor prescribed any medication?

@mzleah, @kanaazpereira, I too have this in my girly region. What a pain and im told there's nothing they can do for it but watch it from afar..haha. Doctor gave me Clobetisol (sp) salve and im done with my visit. Im supposed to be a good girl and go in e ery 6 months for a check up but i have so many specialists im supposed to be seeing that i cant afford everything im supposed to be doing. I use the salve when i have a flare up and it takes away the pain and itching. (but not the scars) However, that crap stinks so much to me that i cant stand using it for very long. If you have heard anything new can you let me know?
Aint life grand?
Thanks, Judy

@julievansickle. Hi. I also have this. Did you ever get blisters? I do and i hate the clobetisol so much bc to me it stinks to high heaven. I dont use it every day like i used to and now i have scars. Toward the end of my marriage i couldn't even have sex. Im 65 and i know i will never again know the closeness that being in love can bring. It makes me so sad. I try to tell myself if that man is the right one it might happen. But you have to tell that man at some point in the beginning of your relationship about your condition right? How would someone find the courage to do that?
Sorry for bending your ear.
Best of luck, Judy

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.

@tropicallady1276. Thank you, thank you, so much. I will tell my gyno dr.next time i see her.
Again, thank you. Judy

I've been dealing with lichen sclerosis for around 3 years now. I had a lot of white patches, thickening of the skin on my perineum, atrophy (inner labia basically gone), itching, dryness, a lot of pain with intercourse. I started out using clobetasol ointment twice daily for around 6 weeks if I'm remembering correctly, and then slowly tapering down from there. I also use estrace cream vaginally which helps a lot with the dryness and to plump up the skin of my labia. I'm now only using the clobetasol once or twice a week for maintenance. I also use testosterone cream as I had almost no testosterone, and it really affected my sex drive and responsiveness. I'm now able to have intercourse without pain, and the other symptoms are under control quite well but it was a long road, and hard to get our sex life going again after such a long time. We also saw a sex therapist at the women's clinic at Mayo (Jordan Rullo) which was very helpful. Good luck and hang in there - it can get better.

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!

@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.

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.