1. < Autoimmune Diseases

Lichen Sclerosus: Any other women dealing with this disease?

Posted by Kitten92 @kitten92, May 22, 2017

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.

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nekcarolyn | @nekcarolyn | Dec 13, 2023

I am adding... can this ever be cured? can we get over it? I just need to know so I can deal with it. I have neuropathy with no cure so I was hoping LS might be cured somehow. wishful thinking. thanks

REPLY
2 replies
alju | @alju | Dec 14, 2023
In reply to @nekcarolyn "I had a mild case, used clobetisol which helped, but now my doctor suggested Estrace cream,..." + (show)
@nekcarolyn

I had a mild case, used clobetisol which helped, but now my doctor suggested Estrace cream, every day, just a bit. and this seems to have really cleared things up.

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You are very lucky that the Clobetasol helped you. It didn't make any difference at all for me. The steroids seem to have helped the majority of contributors on this subject, so I'm wondering why it didn't for me. I'm going to continue my search for the "right" dermatologist or specialist . Since this is manifested in the skin those doctors should be the better detectives on what to do . The gynacologists insist Clobetasol is the solution. Well, not always unfortunately.

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2 replies
nekcarolyn | @nekcarolyn | Dec 14, 2023
In reply to @alju "You are very lucky that the Clobetasol helped you. It didn't make any difference at all..." + (show)
@alju

You are very lucky that the Clobetasol helped you. It didn't make any difference at all for me. The steroids seem to have helped the majority of contributors on this subject, so I'm wondering why it didn't for me. I'm going to continue my search for the "right" dermatologist or specialist . Since this is manifested in the skin those doctors should be the better detectives on what to do . The gynacologists insist Clobetasol is the solution. Well, not always unfortunately.

Jump to this post

Interesting.
My doctor is convinced that daily estrace is the answer , and so far it is. She also feels that it will strengthen/correct my annoying occasional incontinence by making the urethra more healthy. That is yet to be shown. Some improvement there with pelvic floor PT… She is not a gynecologist, just my general GP but quite knowledgeable.

REPLY
1 reply
rashida | @rashida | Dec 15, 2023
In reply to @nekcarolyn "I am adding... can this ever be cured? can we get over it? I just need..." + (show)
@nekcarolyn

I am adding... can this ever be cured? can we get over it? I just need to know so I can deal with it. I have neuropathy with no cure so I was hoping LS might be cured somehow. wishful thinking. thanks

Jump to this post

@nekcarolyn unfortunately lichen planus and lichen sclerosis are autoimmune conditions so not curable but just need to be kept under control with various medications. I have both. Taking Lyderm gel for oral lichen planus, and Clobetasol for lichen sclerosis.

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rashida | @rashida | Dec 15, 2023
In reply to @nekcarolyn "Interesting. My doctor is convinced that daily estrace is the answer , and so far it..." + (show)
@nekcarolyn

Interesting.
My doctor is convinced that daily estrace is the answer , and so far it is. She also feels that it will strengthen/correct my annoying occasional incontinence by making the urethra more healthy. That is yet to be shown. Some improvement there with pelvic floor PT… She is not a gynecologist, just my general GP but quite knowledgeable.

Jump to this post

@nekcarolyn glad Estrace works for you - unfortunately it is not suitable for my system.
https://www.drugs.com/estrace.html

REPLY
joybringer1 | @joybringer1 | Dec 22, 2023
In reply to @alju "You are very lucky that the Clobetasol helped you. It didn't make any difference at all..." + (show)
@alju

You are very lucky that the Clobetasol helped you. It didn't make any difference at all for me. The steroids seem to have helped the majority of contributors on this subject, so I'm wondering why it didn't for me. I'm going to continue my search for the "right" dermatologist or specialist . Since this is manifested in the skin those doctors should be the better detectives on what to do . The gynacologists insist Clobetasol is the solution. Well, not always unfortunately.

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@alju, Have your tried Halobetasol? My GYN recommends this and said it lasts longer than Clobetasol. I trust her and maybe that would work for you. With all good wishes, @joybringer1

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1 reply
alju | @alju | Dec 22, 2023
In reply to @joybringer1 "@alju, Have your tried Halobetasol? My GYN recommends this and said it lasts longer than Clobetasol...." + (show)
@joybringer1

@alju, Have your tried Halobetasol? My GYN recommends this and said it lasts longer than Clobetasol. I trust her and maybe that would work for you. With all good wishes, @joybringer1

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No, I have not had that prescribed or ever heard of this one. Have you used it yourself? I am going back to my current dermatologist in a couple of weeks so will discuss

Thank you.

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2 replies
joybringer1 | @joybringer1 | Dec 23, 2023
In reply to @alju "No, I have not had that prescribed or ever heard of this one. Have you used..." + (show)
@alju

No, I have not had that prescribed or ever heard of this one. Have you used it yourself? I am going back to my current dermatologist in a couple of weeks so will discuss

Thank you.

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@alju, Yes I use Halobetasol. My dermatologist thought I should use Clobetasol, but I have been with my GYN for many years and I trust her and will continue to use the Halobetasol twice per week. In the past, I saw my GYN at least every 3 months. Now I see her every 6 months. Of course, with flares (which I have not had for a while) I would use more of the Halobetasol, beginning with twice a day and tapering every couple of weeks. With all good wishes, @joybringer1

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ddn | @ddn | Dec 24, 2023

I have it too. I use clobetasol. What's the difference between the two?

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mary47 | @mary47 | Dec 24, 2023

I have been using clobetasol for a year. How long did it take you to get this terrible condition to settle down?

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