I can't tell you how liberating it is for me to see this forum, where people have the same lip problem I do. I've been suffering with this for over 30 years; and I'd given up hope of ever knowing what the problem was. I've never been officially diagnosed with EC, but from the descriptions and photographs, this is most likely what I have.
I'm 47 and first started having issues with EC when I was 12. I used to lick my lips a lot as a nervous habit, and they (upper middle section and lower lip transitional areas) began manifesting the growth/peeling cycle that's so common to all of us. My parents took me to a number of dermatologists; I used the hydrocortisone and anti-fungal treatments, had a biopsy done, had many pictures taken, but alas, was not cured. I suffered not only with the shame of having to go out in public with this condition, but also with guilt, feeling I had done this to myself. It was difficult to be a young girl, then a young woman (heck, then a not-so-young-woman), dealing with this condition--especially having no answers or success with treatments. Finally I had to resign myself to just living with the condition, armed with my handy cuticle scissors and the discreet shade of lipstick.
It hasn't stopped me from having normal social or romantic interactions with others. I'm simply vigilant about gently trimming the lips to make them look their best and disguising the condition as best I can. I no longer lick ny lips, but I do absentmindedly fidget with them occasionally when the skin gets crusty.
I have noticed that the peeling seems to have thinned out intermittently the last few years. Honestly I have no idea why this is. My nutrition was pretty good as a child, but I was very, very stressed out, and still am. Dealing with stress is a goal and a challenge for me. I have stressed my body further to a certain degree by smoking for years (which I just quit--again), and not sleeping as much as I ought to. However, I've been aware of nutrition and been in good shape at times as well.
I'm thinking of going back to a dermatologist armed with the new information I'm getting from this site. But I also realize I need to take even better care of myself physically: practice better nutrition than I already am, deal with stress, etc.
Anyway, thanks so much for this forum and for allowing me to read all your experiences. It means a lot to me.
Does anyone know the underlying cause of this condition? I mean, what happens to the skin on a cellular level to make it behave this way? Sometimes I have a hard time believing that a lip-licking habit alone could cause so much of an issue years and years afterward. If what's causing this condition is the skin replacing itself too quickly (presumably because it's been damaged), is there not any way to slow the skin production down in those areas so that a real healing can occur, rather than a hyperactive, false healing? Just a few questions I have.