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I have been diagnosed a while back. I have Googled it to try to understand more about it. It is very unpleasant. The doctor indicated it isn't transferable from one person to another. All ages can develop it, from young children to older folks.
I am dealing with a bout of it past couple of days and is making life miserable.
I have been diagnosed a while back. I have Googled it to try to understand more about it. It is very unpleasant. The doctor indicated it isn't transferable from one person to another. All ages can develop it, from young children to older folks.
I am dealing with a bout of it past couple of days and is making life miserable.
Thank you for any info you can share.
Do you mean lichen sclerosus? Caused by an overactive immune system?
I guess your doctor prescribed an ointment or something?
Many people manage autoimmune conditions very well by making diet and lifestyle changes. It mentions the autoimmune protocol diet as well, if those food recommendations don't help.
You need a doctor (gynecologist or dermatologist) who understands this condition. It’s an autoimmune disorder that requires very strong topical steroid medicine. Clobetasol is the gold standard. LS should be controlled as a small percentage of women can get vulvar cancer from this condition.
There are a few Facebook groups that might be helpful for you. I suggest checking those groups out than trying to find answers here. The groups have listing of doctors around the US who understand this condition. If your doctor doesn’t bring up clobetasol that would be a red flag to run.
Thank you for responding with information that I am sure will be helpful.
One of the side effects is fatigue and I have slept a lot over past few days. I have urge to lay down again, but trying to stay awake.
I am thinking of going back to my original Dermatologist. My current one and their office staff are not very helpful.
I've been wondering if I should see a different kind of doctor, but don't know.
The skin problem does not stay in one place. It's always "there" but does move around. This time on right eye lid and surrounding eye, on both sides of my nose.
Thank you for responding with information that I am sure will be helpful.
One of the side effects is fatigue and I have slept a lot over past few days. I have urge to lay down again, but trying to stay awake.
I am thinking of going back to my original Dermatologist. My current one and their office staff are not very helpful.
I've been wondering if I should see a different kind of doctor, but don't know.
The skin problem does not stay in one place. It's always "there" but does move around. This time on right eye lid and surrounding eye, on both sides of my nose.
If it’s on your face, it sounds like lichen planus (or something else) not LS. LS affects the outer genital and anus areas. If a doctor told you it’s lichen sclerosis on your face, that’s a red flag - run! Find a dermatologist who understands these skin conditions
Thank you for responding with information that I am sure will be helpful.
One of the side effects is fatigue and I have slept a lot over past few days. I have urge to lay down again, but trying to stay awake.
I am thinking of going back to my original Dermatologist. My current one and their office staff are not very helpful.
I've been wondering if I should see a different kind of doctor, but don't know.
The skin problem does not stay in one place. It's always "there" but does move around. This time on right eye lid and surrounding eye, on both sides of my nose.
I know nothing about this particular disease; but I do know a lot about auto-immune illnesses.
Serious, chronic autoimmune diseases should include a rheumatologist in the treatment team.
Second opinions are very, very, very valuable - and IMO and experience, absolutley necessary for any condition that is interfering with one's life and daily activities.
If it’s on your face, it sounds like lichen planus (or something else) not LS. LS affects the outer genital and anus areas. If a doctor told you it’s lichen sclerosis on your face, that’s a red flag - run! Find a dermatologist who understands these skin conditions
I concur! I have it, just affects a small spot on my vulva. And while it is an autoimmune condition, it does not impact anything but that small spot--certainly not my energy level.
I had a flu shot a few days ago. I mentioned to the pharmacist that I had the LS and wondered if it was autoimmune. He looked it up before giving me the shot and he said he could not find anything that would connect the LS to autoimmune.
I'm not real happy with the dermatologist.
Will start looking for another one soon.
Maybe a different primary, too. Though I'm starting to think they don't take us older patients very seriously.
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