lichen sclerosis any one?

vieja_gwApril 21, 2013

I have had an auto immune condition called lichen sclerosis for years & nothing seems to help much & now have it in the GI tract. GI doctors won't handle it & wonder who I should go to now as it has gotten worse. Dermatologists don't see much of it so not sure if they would be the specialists to see. This disease can become malignant so it worries me! Would appreciate any ideas from anyone who may also have this condition!

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emma

I have it but it is a surface problem not inside my body. I thought it was just atrophy so did the doctors including gyns. Since it is on the surface I can use Cloebetsol ointment. It relieves the discomfort. My gyn didn't mention cancer, if she had, I wouldn't worry about it. I won't waste a minute worrying about something I have no control over and I am also old as dirt. If I were younger I might feel differently.

How in the world did they diagnose it in the body. My urologist had never heard of it and I don't think he really believed me. I told him to do a scope he would have to cut his way in. He had to do a pelvic to prove to the insurance company I needed to be put to sleep for my scope.

    Bookmark   April 21, 2013 at 9:31PM
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yayagal

You need to see a gastroenterologist and let that person give you the correct treatment.

    Bookmark   April 22, 2013 at 12:13AM
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vieja_gw

Just had my 5 yr. colonoscopy... GI doctor won't treat it. Was unaware either that GI doctors can remove any GI polyps during procedure but won't do any surgery if required... have to go to a surgeon if needed.This auto immune disorder can become malignant I am told but so far with the clobetasol it helps somewhat as 'emma R' mentioned. Husband has lichen planus (different autoimmune disorder) on the inside of his mouth & also uses clobetasol & has yearly check by ENT doctor as well as oral surgeon .Wonder if there is anything newer now than the clobetasol which has been used for years?

    Bookmark   April 22, 2013 at 12:29AM
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emma

I researched this again and again and found nothing that said it can ever be malignant or that it can be inside the body. It is a disease of the genitalia on men and women. They also said it was believed to be "related" to auto immune diseases. It is more common than people believe because most is never reported or is mistaken for atrophy in women.

Here is a link that might be useful: information

    Bookmark   April 23, 2013 at 5:33PM
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vieja_gw

EmmaR: I read the information you noted & though it is rare, it did say it could become malignant(cancer). Also rare, but could invade the rectum & other skin areas. A biopsy showed mine had invaded other areas also. I have had this condition for over 55 years & am checked frequently as the dermatologist recommends as they say yes, it can become malignant!. There is a drug now besides clobetosol which may be of help... I must try & find the article I read about it! I had no idea how rather common this is either.

    Bookmark   April 23, 2013 at 6:32PM
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cookie8

I have a few autoimmune conditions myself and since modifying my diet they are clear and I have been off medications for two years now. There is a huge connection between gluten and AI conditions. I also have to omit dairy, soy, peanuts and tomatoes but it is worth it to not have pain or be on medications. Even if you go through Celiac.com you will find many more individuals in situations like yourself. This is where I get my support from as my doctors don't believe diet has benefits to my conditions. You can even google lichen sclerosis and gluten free and you will get many peoples journeys.

    Bookmark   April 23, 2013 at 9:43PM
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emma

Vieja if you really have this disease you are lucky to have it inside instead of in the genitalia area. I would get a second opinion. Have you had the scope to look inside. Mine can be diagnosed visually. Yours would be more difficult, unless they did a biopsy.

A diet change will not help this condition it is incurable. A surgeon can rebuild the tissue but it will just happen again. The gyn that diagnosed this on me said she had five year old girls that have the condition. I feel so sorry for them, the will never have an intimate relationship with a man without severe pain.

    Bookmark   April 23, 2013 at 10:30PM
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vieja_gw

The drugs tacrolimus (Protopic) & Elidel as well as UV light I read can be used as well as the clobetesol ointment .. all for autoimmune diseases I guess. I shall try a doctor here who is an MD who treats either Western medicine or alternative medicine depending on a patient's preference. My daughter-in-law goes to this doctor (who is also on the staff of a university medical school) & she uses the alternative way for the most part. With my medical background it is more difficult to understand the alternative way, much as I'd like to! Oh, BTW: my German Shepherd dog is on tacrolimus ointment twice a day put in her 'dry eyes' & pilocarpine drops orally.. also an autoimmune problem (a family affair!!!)

    Bookmark   April 24, 2013 at 2:19AM
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kathyg_in_mi

I was diagnosed with Lichen Sclerosis 3 years ago. So very painful. My doc prescribed Halobetasol Propionate Ointment 0.05% (by Perrigo). It has definitely helped. Not a cure, but when it flares up just 2 or 3 days of treatment really helps.

    Bookmark   April 25, 2013 at 7:27PM
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vieja_gw

kathyg : Yes, that ointment I think must be similar to the clobetasol ointment I use for lichen sclerosis & the same used by my husband for lichen planus (another autoimune disorder) in his mouth. I also read this disorder seems to be more prevalent in people of northern european background. These autoimune disorders are difficult to treat it seems! I must ask the doctor about the tecrolimus ointment my dog has to have n her eyes ,,, for autoimmune disorders! My daughter-in-law has Hashimoto's disease.. an autoimune condition of the thyroid. She has had results with diet changes & eating three (& only three!) Brazil nuts a day in her diet.... strange but it has worked!

    Bookmark   April 25, 2013 at 8:16PM
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emma

Clobetasol is a steroid. It takes very little, a dab the size of an English pea. I use the Clobetasol ointment 2 times a week for sure. My doctor said it cannot be cured, all you can do is treat the symptoms to be more comfortable. There are side effects to it, but I am so old it doesn't matter. I only use the lotion once or twice a week , but it's not for LS it just for a itching scalp.

    Bookmark   April 25, 2013 at 9:09PM
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kathyg_in_mi

veuja,
lI have Hashimoto's along with 2 of my kids. DD was diagnosed at 10 years old.

    Bookmark   April 26, 2013 at 3:16PM
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vieja_gw

Is the Hashimotos under control now? These awful autoimmune disorders .... there is no real treatment or cure, is there? And most doctors don't think to chec for them either. I was diagnosed many years ago with the lichen & told many children also have been diagnosed ... & then a lifetime of agony for them! Had you heard about eating the Brazil nuts for the autoimmunes like Hashimotos?! Think I will try it also... sure can't hurt!

    Bookmark   April 26, 2013 at 8:08PM
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kathyg_in_mi

My Hashimoto's is pretty well under control. Definitely not the end of the world for me. I have more trouble with my Type II Diabetes. Then was just diagosed with neck, shoulder and lower back problems, big time. Take lots of pain meds, traction, PT and Pain Clinic visits.
So everyone has their aches, pains and other issues, but life is still good. Just got to remember that!
No, have not heard about the nuts, but Brazil nuts not my favorite. Can I try cashews instead? LOL.

    Bookmark   April 26, 2013 at 10:46PM
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vieja_gw

kathyg: LOL !!... actually the article my daughter-in law showed me said specifically ONLY three Brazil nuts ... no more at a time!! She is a believer & uses alternative medicine as well as western medicine & it surely seems to work for her. I, however as a retired medical tech, am more critical/sceptical of those things I guess & I really think that interferes with things like that helping me. So much is genetics too!

    Bookmark   April 27, 2013 at 11:39AM
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