Been lurking for a while....here's my story.

Hello everyone -

I've been getting on this site for the last 6 months and the advice and camaraderie is comforting - as you truly suffer through this alone. A lot of what I describe, you guys have heard many times before, as my symptoms are almost identical to what many of you experience. Nevertheless, if there is anything that helps somebody, that would be great.

1. I noticed the condition at the very earliest stages about 2 years ago, when the center of my upper lip started mysteriously peeling and would never fully heal.

2. Very progressively and slowly, this spread from there to a spot on my lower lip, then pretty much all of my lower lip, then the rest of my top lip.

3. The scaling, peeling, etc. is directly adjacent to the wet-dry junction of my upper and lower lips. The last millimeter or so of my lips near where my upper and lower lip meet my regular skin, are perfectly normal. This shiny scaling presents almost as a small air bubble in spots and the skin is almost separated from the tissue underneath (you can push it down and it indents). Sometimes these lesions are almost circular or odd-shaped. In addition, the center of my upper lip is always pretty white and swollen and my lower lip has become swollen and everted. My lips constantly stick together and it has become almost unbearably uncomfortable. This is somewhat similar to orofacial granulamatosa (sp???) which is a somewhat rare manifestation of Crohn's Disease.

4. I have very bad and SWOLLEN fordyce spots on my top lip that really aren't even "spots" - it is one giant, white swollen sac that, when you spread it out, you can make out individual spots. This and the cheilitis, I'm convinced, are directly related. I have also suffered from recurrent Seborrhea for the last 8 years (I've noticed other people have too). I'm not sure if this is related, but again, the Seborrhea started WAY before any lip issues.

5. I've been put on Protopic, Desonide, and hydrocortisone, - nothing works. I've also been on Amoxicillin and Minocycline (anti-bacterials) for unrelated conditions and also no dice. I have now been on fluconazole for the last 8 days with what seems to be no improvement. I've been to 3 dermatologists, 2 allergists, and my family doctor. Nobody has a clue on what to do and I probably know 5x more about this condition than any of them do (not a shot at them - it's just rare and nobody really knows what to do about it).

6. I just called the Mayo Clinic today and there is a doctor by the name of Roy S. Rogers III who specializes in Oral Dermatology but unfortunately does not see patients. Johns Hopkins has an Oral Dermatology clinic - has anybody had any experience with any of these specialty clinics?

I am truly at my wits end with this. It is so incredibly humiliating to even go out in public. I have retreated from the vast majority of social activity, but I still have to earn a paycheck so I have to visit clients. It's terrible to see everyone constantly licking their lips and applying chapstick around me because I know they see my lips and start paying attention to their own. My love life is completely non-existent - how in the hell could you even go on a date with your lips looking like this? I know somebody who has had cancer or HIV or something would shake their head, but this truly is a very debilitating condition which affects almost every aspect of your life. You do everything with your lips - talk, eat, laugh, kiss, smile. I am running very low on hope. Thanks for reading. Tweet