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.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

ronag | @ronag | Nov 27, 2023
In reply to @alju "This is my first posting. I am suffering from this horrible lichen sclerosus and have tried..." + (show)
@alju

This is my first posting. I am suffering from this horrible lichen sclerosus and have tried clobetasol and two other corticosteriods over the past four months +- but have not seen any improvement. In fact, things seem to be getting worse. Because of that, along with the added drying, irritating side effects of these ointments, I've stopped using anything. I am at my wits end with this problem.

How long did it take to see improvement for those who used these standard steriods?

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I remember my confusion when first diagnosed. My dermatologist and my gynecologist were offering different treatment plans. I didn't know what to do. I searched online and found the website for the lichen sclerosis support group. They've offered plenty of information and support. I highly recommend them. Kathy and Jocelyne have been lifesavers!

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2 replies
alju | @alju | Nov 27, 2023
In reply to @ronag "I remember my confusion when first diagnosed. My dermatologist and my gynecologist were offering different treatment..." + (show)
@ronag

I remember my confusion when first diagnosed. My dermatologist and my gynecologist were offering different treatment plans. I didn't know what to do. I searched online and found the website for the lichen sclerosis support group. They've offered plenty of information and support. I highly recommend them. Kathy and Jocelyne have been lifesavers!

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Thank you; I am so glad I found this group. I know it will help me.

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alju | @alju | Nov 27, 2023

She was fairly silent about it but prescribed Amitrityline for pain. I actually wanted her to do a biopsy ( which she refused to do) since she is composed, self assured , and consertative unlike the obgyn who is an unpleasantly aggressive investigator, if you take my meaning. I'm seeing my GP tomorrow to give her an update and see if she has any thoughts on the next step. So onward
I march. I hope sometime very soon progress toward some solution is in sight.

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1 reply
ma31302 | @ma31302 | Nov 28, 2023
In reply to @kanaazpereira "Hello @mzleah, Welcome to Connect. Lichen Sclerosus can be so irritating to the skin; here is..." + (show)
@kanaazpereira

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?

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That discussion link is no longer active

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fdixon63 | @fdixon63 | Nov 28, 2023
In reply to @alju "She was fairly silent about it but prescribed Amitrityline for pain. I actually wanted her to..." + (show)
@alju

She was fairly silent about it but prescribed Amitrityline for pain. I actually wanted her to do a biopsy ( which she refused to do) since she is composed, self assured , and consertative unlike the obgyn who is an unpleasantly aggressive investigator, if you take my meaning. I'm seeing my GP tomorrow to give her an update and see if she has any thoughts on the next step. So onward
I march. I hope sometime very soon progress toward some solution is in sight.

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@alju. Hi. After seeing multiple MD's, dentists, etc. over many years it is amazing how few have ever heard of LP. I've had two biopsies over the last 8-10 years but none actually elaborated as to lichen sclerosis, only lichen planus. Two years ago my derm suggested a vulva dermatologist a distance from my home but I was happy to go. She too recommended Amitriptyline. Not sure if it helps the pain but the sleep benefit is wonderful. I have a lump in the vaginal area that I believe the derm called "?milia." I've got scaring there as well and I go back every 4 months or so to, I assume, to make sure no cancers develop.
Also, I've had multiple squamous cancers on my legs and arms (many requiring surgeries) that I'm sure are related to lichen planus.
The sharing this forum provides is amazing. Thanks to all. Faye

REPLY
1 reply
fdixon63 | @fdixon63 | Nov 28, 2023
In reply to @ronag "I remember my confusion when first diagnosed. My dermatologist and my gynecologist were offering different treatment..." + (show)
@ronag

I remember my confusion when first diagnosed. My dermatologist and my gynecologist were offering different treatment plans. I didn't know what to do. I searched online and found the website for the lichen sclerosis support group. They've offered plenty of information and support. I highly recommend them. Kathy and Jocelyne have been lifesavers!

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Hi ronag. Wondering which group (i.e. facebook, Mayo connect...) you like for lichen sclerosis. Thanks much.

REPLY
1 reply
alju | @alju | Nov 28, 2023
In reply to @fdixon63 "@alju. Hi. After seeing multiple MD's, dentists, etc. over many years it is amazing how few..." + (show)
@fdixon63

@alju. Hi. After seeing multiple MD's, dentists, etc. over many years it is amazing how few have ever heard of LP. I've had two biopsies over the last 8-10 years but none actually elaborated as to lichen sclerosis, only lichen planus. Two years ago my derm suggested a vulva dermatologist a distance from my home but I was happy to go. She too recommended Amitriptyline. Not sure if it helps the pain but the sleep benefit is wonderful. I have a lump in the vaginal area that I believe the derm called "?milia." I've got scaring there as well and I go back every 4 months or so to, I assume, to make sure no cancers develop.
Also, I've had multiple squamous cancers on my legs and arms (many requiring surgeries) that I'm sure are related to lichen planus.
The sharing this forum provides is amazing. Thanks to all. Faye

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It's surprising how much contradicting info is out there on these two problems , LP vs LS which is the less common and locations on the body that are or can be affected, etc. Very confusing. I never heard of a vulva dermatologist before. I will try to find one near me. I agree about this support group. I am so relieved to be able to actually talk to others about this problem . It's been a terrible emotional stressor for me.

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haimfruchter | @haimfruchter | Nov 28, 2023
In reply to @fdixon63 "Hi ronag. Wondering which group (i.e. facebook, Mayo connect...) you like for lichen sclerosis. Thanks much." + (show)
@fdixon63

Hi ronag. Wondering which group (i.e. facebook, Mayo connect...) you like for lichen sclerosis. Thanks much.

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I don't do facebook. I do follow this link at Mayo connect. But most of my knowledge about my disease, if not all of it, comes from the LSSN, lichen sclerosis support network. I don't work for them. I'm just sharing what's helped me.

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haimfruchter | @haimfruchter | Nov 28, 2023

I'm using someone else's computer, but I'm ronag who just shared my thoughts on LSSN. Sorry for the confusion with the name.

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nekcarolyn | @nekcarolyn | Dec 13, 2023
In reply to @mzleah "Lichen sclerosis ant women dealing with this ?" + (show)
@mzleah

Lichen sclerosis ant women dealing with this ?

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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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