Hi Jancey,

I am also a sufferer of Lichen Sclerosis. I have also been mis-diagnosed for
months. My bright Gyn finaly diagnosed it at my last check up. I would like to know what you're treatment is and I agree that it is a debilitating disease. My Gyn also said that
apparently it is an "unknown" disease and that no cure has been documented.
I would love to know whether DR Oz has ever heard or seen it?

Thanks, Mel

I too have Lichen Sclerosus. I was diagnosed a few years back and mine too was not an easy diagnosis. I was given a steroid cream, LSA cream, but don't use that anymore because of the side effects. I now try to keep the yeast infections in check, which can be a real battle sometimes and I have used vitamin E capsules, flaxseed oil and aloe vera externally. Probiotics work best for the yeast infections and I try to keep the stress level down because stress makes it worse. I was also told that beta glucans can help, but have not tried that yet.

Please Dr. Oz. can you give us some more information.

Hi! I, too, have been diagnosed with "Lichen Sclerosus" and would so like to have input from Dr. Oz! This disease is literally driving me crazy! The doctor gave me the

really strong steroid cream, plus something to wash with. I have used the products for over 2 wks., and I am actually doing worse! I can't sleep at night for the horrible itching,

and then when I scratch, I get raw and sore, and then I have tears in my eyes. I also have a terrible sensation like something is "crawling" all around!

The doctor called in another steroid cream that is much stronger and I am picking it up today. But, if it doesn't work in a week's time to give me some relief, she is going

to do a biopsy. I also have Fibromyalgia, Osteoarthritis and "Sjogren's Syndrome". For those of you who aren't familiar with it, "Sjogren's" is a disease where your eyes, nose,

mouth and vagina dry out to the point that you are miserably uncomfortable. On a daily basis, I take Toprol XL for high blood pressure, "Prozac" for stress, "Aciphex" for reflux,

eye drops, and nose gel, and drink tons of water and chew gum, for the "Sjogren's", and now the special creams for the "Lichen Sclerosus"...All in all, I can't remember the last

time I felt good!!!! But, I pray a lot and I am trusting that God will bring me through this...I am 54, and my husband and I have custody of our 10 yr.old granddaughter.

He also has arthritis, so we both stay in pain and are tired all the time. Any suggestions for how to deal better with all this would be so appreciated!

God bless! Tina Blackwell, Columbia, S.C.

P.S. None of the meds. the docs have given me has helped with the pain I am having. I am extremely "medicine-sensitive", so there is not a whole lot they can give me anyway!

Our doc has told us that we need to take some time to rest and relax and for me and my husband to get away and have some "us" time, but we can't afford to do that.

dito. please talk about it. i diagnosed myself over the internet. then drs agreed. all drs offer is steroid creme. i use castor oil. more info would be greatly welcomed.

I also, have Fibromyalgia, Osteoporosis,Osteoarthritis and "Sjogren's Syndrome" besides Stroke, MS, Lupus, Depression, Anxiety, High Blood Pressure.

My neurologist recomend me to see a chiropractor, accupucture,physical therapy,and massage. I did see a chiropractor, and Idid get some relive. Unfortunately, my insurance doesn't cover acupuncture and massage. Give it a try!

To the woman who was on Prozac and also had dry eyes and vagina. Prozac can cause this dryness. Many antidepressants do this. I recommend tapering off this drug and trying other things to treat your depression. You might be depressed because of your other symptoms and this is making it worse!

I too, suffer from lichen sclerosus. I am only 19 years old. I have been suffering from it for a year, without a diagnoses until about 2 months ago. This past year has been one of the most painful, deppressing years for me when it should have been the most joyous. I started having severe signs during the third trimester of my pregnancy, and right after I had my first child in May 2007. My gynecologist couldn't figure out what was going on so she sent me to a cancer clinic. They told me I was going through early menopause and sent me home with an estrogen cream. Then a couple months ago I saw my dermatologist for a psoriasis breakout I was having on my scalp. I decided to tell him about my problem, inwhich he decided to take a look since it was a type of skin problem, and knew right away what I had. He did two biopsys to 100% determine my diagnosis. I am getting married in October, and due to my problem being so severe, I am unable to have sexual intercourse. This problem is for some people very embarrassing to discuss. It was for me too, until I realized there is no reason to be embarrassed. We can not control having it. More people everyday are suffering from it. It is a very serious condtion, because it not only affects your physical life, but your emotional and mental state as well. I, along with everyone else who has lichen sclerosus, will have to deal with it for the rest of our lives, unless someone finds a cure. I pray everyday for myself, and everyone suffering from it, that one day we might live a pain free life.

My mother has this condition in the genital area, then my sister and now I have this as well. I have read just about everything there is to read about this on the internet and it appears there is little that can be done and little research being done to find any cure or relief. How sad it is that so much research and development of drugs thereis to enhance sexual pleasures and we women, who have this, feel forgotten and disgarded. This is a very real, embarassing, painful and debilitating condition. It is even embarassing to go to the doctor because he tells you that you need to stop itching but how can you, everytime you use the toilet and go to wipe yourself an extreme itching urge happens and there is no relief except to itch. I have an incontenance problem as well which many others are faced with too. This compounds the symptoms. I have tried everything from baby oil to neosporin OTC remedies. I'd sure appreciate Dr. Oz imput on this condition and any news or remedies he would have. There are multitudes of women who live in shame and embarassment with this condition...

I was just diagnosed with lichen sclerosis today. Fortunately, we were able to catch it at an early stage. I had been dealing with painful fissures in the labia area for months. Anything would cause them, from using the bathroom to showering to just sitting. It was like my skin had turned into tissue paper. I have a wonderful gynecologist, but was hesitant to see her about this. Silly, I know. I finally went to the dr after I tore myself horribly just wiping after using the bathroom. My doctor knew immediately what to check for when I explained my symptoms, and sure enough, it was lichen sclerosis. I had done some reading online, and thought that might be what it was. I was prescribed clobetasol ointment to use for a few weeks and then to manage the symptoms. I had also been using A&D Ointment several times a day prior to keep the skin from tearing so easily. It seemed to be working, so I will continue to use the A&D on the days I don't medicate. I am only 31, and have been married for 13 years, and have two kids. I am very, very healthy and active. I don't want this to ruin my sex life with my husband. It is a great worry that this will get worse instead of better. And that there is very little out there about this condition and its treatment options is disheartening. Not to mention the fear that because this is an autoimmune disorder, I might have future problems with my thyroid as well or skin issues such as scleroderma.

I was so happy to stumble across these comments about Lichen Sclerosis. I have not been diagnosed with this disease, but it may very well be what I have been suffering with "down there" for the past 12 years. My irritation started at the top of my buttocks (between the cheecks) with itching and what felt like a paper cut. Very painful and itchy. However, when I had my husband look, he said there was nothing there. Now it has spread all the way to the front of the vulva area. I have seen numerous doctors over the years for this condition but when the "yeast infection" didn't turn out to be a yeast infection that was that. I did have a dermatologist prescribe some cortisone cream, which worked at first but now is ineffective. So, when I go see my new gyno this fall I can explain what I have and see what she says. All of you have been a tremendous help just by writing in. Thank you for doing so.

Does anyone have a thyroid disease? I read that they suspect this could be a result of an autoimmune disease, which totally makes sense to me since I have Graves Disease (now I am hypo). About a year after I had my thyroid radiated, my symptoms started.

What is this problem and it's symptoms, if I may ask? Have any of you received a response? And, have any of you ever heard of your vagina wall 'caving in", from non-use ? I am 50, and in the final stages of menopause, and have been having alot of problems in this area. I would apreeciate any input.

yaya50

Well, I too have Lichens Sclerosis. I was 1st itchy and was treated for a yeast infection, helped alittle bit. Then itchy all the way to the back end. Did I have hemroids??? Went to see my gynecologist had a biopsy(ouch) yes I have it. How come I asked? I am 56 I have gone through menapause and I take no hormones. So I start using Clobetasol, 2 weeks 2x a day(cortsone cream) it helped. 2x a week I used REPHRESH(balances the PH in your vagina). That helped. The doctor said use premarin or estrace down below on the inside almost inside. This has helped me tremendously. It has made my skin healthier. I actually only use clobetasol 1 week a month to keep it checked. LS. I was going insane. I feel fortunate the hormone cream and clobetasol helped. Now I have it all over my body. The clobetasol does not help. I do not itch on my body. My skin is rough in these places and white and shinny. I use PROTOPIC ointment. This keeps my skin softer. It actually felt like it was going to split. At first the dermatologist thought it was t-cell lymphoma(not sure of spelling) i new that was cancer. He did 2 biopsies and it was LS, I was greatful it wasnt cancer.

All I can say is I know how you feel, If I can help more let me know!

I have said for some time now that I am just waiting for Dr. Oz to address this. I, too, have been diagnosed with Lichen Sclerosis within the last year. I truly believe I have had it since childhood, but that it has been misdiagnosed for years. I am currently taking Betamethasone Dipropionate after having what was probably a terrible allergic reaction to Clobestol. My problems increased significantly while taking that. My ob-gyn also prescribed Lidocaine to numb the area and to just give me some relief. I can truly empathize with each person responding and I believe there are thousands upon thousands of women who are also suffering from this disorder and no attention is being called to it. Most of us suffer silently because we allow the disorder to embarrass us. I don't know what the procedure is to plead our case, but if there were ever a disorder to be addressed by Dr. Oz this would be one that so many women would want to hear about--if there are any other answers, if Dr. Oz believes it can be controlled through diet or any other type of life style changes, etc. We ( the lichen sclerosis sufferers) are here and we are waiting for help. When given this diagnosis you are left with such a sense of hopelessness, as if there is no answer, a life sentence so to speak. There has got to be an answer. We are women who want more. We desire a sex life without pain. We desire a day without the pain. Please give us the answers we need so that there might be some hope of taking control of this disorder. I appreciate each woman's bravery and candor in responding about Lichen Sclerosus. We need your help, Dr. Oz!!!!

I was just diagnosed with this same disease. I do hope Dr. Oz talks about it soon. I also find it very embarrassing to talk about since many of us were born of a generation where you don't speak about your private parts much to anyone. I also have auto immune thyroid disease (Hoshimotos) and am very hypothyroid. I too would like to know if there is an alternative treatment such as diet or lifestyle change that could help. I am very frightened now about what is down the road for me. Thanks again for having the courage to post this. May God be with you. Please get Dr Oz to talk on this soon!

I was diagnosed with this when I was a child, it went into remission for many years then came back about 11 or 12 years ago, I am now 50. I have Rhumatoid Arthritis and Hypothrodism. After years of going to Dr's and being handed a prescription for a cream and told put it on twice a day and never getting any relief. I found a Dr that finally said did you know this can turn into cancer. Mine had been real bad for years, very visable with the naked eye. My ob-gyn's had just been pushing me through. This new Dr did a biopsy and found that I was in VIN III already. Pre cancer, I went through extensive surgery, a skin gragh and a couple months re hab. Final pathology, Carcinoma-in-situ, Cancer, but contained, not invasive. the best one if you have to have it. This will be 4 years next January, I still have to keep a constant watch on this problem. Bottom line, If the cream isn't helping or is making it worse or burns like fire, find a Dr who will listen or yell a little louder. Demand a biopsy, don't let it get away from you. Those cells turn to VIN I, then VIN II, then VIN III then Cancer. They are abnormalities in the cells, I didn't ignore my health, I went to a ob-gyn every year, they just ignored the Lichen Sclerosis, maybe because they didn't know what to do for it. I even tried talking to Dermatologists about it, they wouldn't help either. If it is down there, they said see your ob- gyn. I really thought I was alone too, until I found this web site. Please take charge of your health and don't suffer in silence as many years as I did. Dr Oz, we are desperately in need of your help, more women are going to develop Vulva cancer if this problem isn't addressed and help isn't found. Right now it is about 4%, I was in that small percentage and it was one of the hardest things I have ever had to deal with.