Treatments for Lichen sclerosis besides steroids

Posted by ret18 @ret18, Jan 31, 2018

Anything out there that works other than steriods

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@sonya_nc

I’m sorry you are dealing with this. It’s life altering. I am finally in a better place... my current regimen: -using liquid organic coconut oil externally each night after showering, -using a compounded formulation of estrogen twice a week and -clobetasol ointment as needed which is now, rarely! When my issues started, I was told to use clobetisol every day- I had so much irritation and dryness- honestly, the coconut oil and the compounded estrogen has made a world of difference for me. I keep the clobetisol ointment handy, but mercifully have not needed it in almost two months!

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@joybringer1 how do you obtain liquid organic coconut oil? I used the coconut oil we use for cooking so that is what might have caused my pain from coconut oil. Thanks so much if you are able to respond.

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@bustrbrwn22

@joybringer1 how do you obtain liquid organic coconut oil? I used the coconut oil we use for cooking so that is what might have caused my pain from coconut oil. Thanks so much if you are able to respond.

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Hi- this is the one I use. I find it at my local grocery store and also at Walmart.

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@sonya_nc

Hi- this is the one I use. I find it at my local grocery store and also at Walmart.

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@sonya_nc. Thanks so much!

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@bustrbrwn22

@sue225 I use clobetasol but as sparingly as possible. Are you worried about your skin thinning in your private areas?

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Ask your doctor about using premarin cream on the days you dont apply the clobetasol. If you dont use the clobetasol, labia gets thinned out anyway from the l.s. so, no I dont worry. Its the least of my worries:)

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@bustrbrwn22

@joybringer1 how do you obtain liquid organic coconut oil? I used the coconut oil we use for cooking so that is what might have caused my pain from coconut oil. Thanks so much if you are able to respond.

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@bustrbrwn22 Hi Buster Brown. You can also easily find 100% pure organic liquid coconut oil at your local whole foods store or health food store. I find it very soothing as a mouth rinse or on my dry lips. (Be sure not to spit it down your drain. It will plug your pipes! I dispose of it into a paper towel, or into my garbage.) I also using Desert Essence coconut oil mouth rinse and/or their coconut oil pulling mouth rinse on a daily basis.

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@artist01

@bustrbrwn22 Hi Buster Brown. You can also easily find 100% pure organic liquid coconut oil at your local whole foods store or health food store. I find it very soothing as a mouth rinse or on my dry lips. (Be sure not to spit it down your drain. It will plug your pipes! I dispose of it into a paper towel, or into my garbage.) I also using Desert Essence coconut oil mouth rinse and/or their coconut oil pulling mouth rinse on a daily basis.

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@artist01 Thanks again for your very useful information! Does using the coconut oil in your mouth help with Oral LP outbreak for you? I understand this is not a medical advice column but I'd like to hear if it helps you prevent outbreaks. I am swishing prednisone almost daily because if I eat raw vegetables it will definitely scrape the sides of my mouth even if I don't feel it an cause an outbreak.

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@bustrbrwn22

@artist01 Thanks again for your very useful information! Does using the coconut oil in your mouth help with Oral LP outbreak for you? I understand this is not a medical advice column but I'd like to hear if it helps you prevent outbreaks. I am swishing prednisone almost daily because if I eat raw vegetables it will definitely scrape the sides of my mouth even if I don't feel it an cause an outbreak.

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@bustrbrwn22 Hello again. I can't say that swishing coconut oil prevents outbreaks but I definitely feel that it eases the discomfort or pain. I've cut out raw vegetables and raw fruits except for canned peaches or pears because my dermatologist says th e raw ones are triggers. Cooked veggies are okay!

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@sue225

Ask your doctor about using premarin cream on the days you dont apply the clobetasol. If you dont use the clobetasol, labia gets thinned out anyway from the l.s. so, no I dont worry. Its the least of my worries:)

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@sue225 I know, this should be the least of my worries, losing my eyesight and hearing should be. I didn't realize the lichen does that, too. Is there no end to the lichen destruction of anyone's body?

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@bustrbrwn22

@sue225 I know, this should be the least of my worries, losing my eyesight and hearing should be. I didn't realize the lichen does that, too. Is there no end to the lichen destruction of anyone's body?

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I dont think there is a cure for lichen sclerosis. The chlobetasol ointment stops this autoimmune condition from progressing. There are gynecologists and dermatologists who know a lot about this condition. Do not think there is any other treatment for it.

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@bustrbrwn22

@sue225 I know, this should be the least of my worries, losing my eyesight and hearing should be. I didn't realize the lichen does that, too. Is there no end to the lichen destruction of anyone's body?

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So sorry to hear about loss of eyesight and hearing.

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