Re: Do I even have exfoliative cheilitis?

Hi Cottonmouth, can I ask you a question ? I have those gigantic yellow crusts as well.

When my EC was milder (like the the OP's), I could control it with Aquaphor and Vaseline (applying about 10-15 times daily), So I definitley agree that the skin needs a barrier from the air. However, at this point (prior to six months ago) I didn't actually even realise I had EC (I knew my lips would chap and peel constantly if I left them without Vaseline but it I thought I just had naturally dry lips, made worse as a result of accutane I took when I was younger).
However, since my lips were basically fine and normal looking if I applied Vaseline 15 times daily, I did 't really think I had a serious problem. So basically I went and did a stupid thing - I got a lip filler. Then all hell broke loose. My skin started peeling off like mad and ulcerated within two weeks. During this time I kept a thick layer of Aquaphor on my lips constantly. However, the desqueamation didn't stop at all. It basically looked like I had Stephen Johnson's syndrome on my lips. Horrendous. FML seriously.

I was misdiagnosed with a bunch of things because nobody had seen the reaction I had before. Eventually a doctor diagnosed desqueamation of the lip. I came to the conclusion that I had EC on my own and realised I had a milder version of it for about 10 years retrospectively.

However. I since had the lip filler product take out with an enzyme and the size of my lips almost went back to normal. However, I still have those gigantic yellow crusts (so my lips look basically exactly like Daniel Miller's did when they were at their most sevre). Every time I try to put aquaphor on now, it just seems to make everything worse. The crusts get soft and fall off, exposing raw skin. I also tried to put aquaphor on immediately after the crusts fall off but it doesn't stop the build up at all (white dead skin accumulates on my lips) and my lips generally look rawer and more inflamed.

So my question is, did you notice aquaphor making your lips worse before it got better? If so, how much worse did it get? How long did you persevere before it got better. Thanks in advance