Hello everybody. I have been reading this forum for some time now and I decided finally to sign up and share my story.
My problem with EC started 3 years ago, although I think I had Exfoliative Cheilitis my whole life. Yeah, as I can remember I always used to bite and pick my lips even to the point of bleeding. And I started when I was 5 years old I think. I always had beautiful lips despite the condition, heh, of course after the peeling process... yeah, they were gorgeous and they were the thing I liked the most about myself. I was even a very good kisser, but I also suffer from chronic Depression since I was 11 years old. It got really bad when I turned 17. Five years later it was dramatic, and I went to a psychiatrist and took some antidepressants for 3 months. After these months I have met a girl. I started to peel my lips even more of course to get them ready when I was meeting her, for kissing - you know. And by her influance I stopped going to the psychiatrist and stopped taking drugs. She also bought me a chapstick... and it only went worse from there. The reliashonship didn't work. We broke up and 5 months later I got a terrible Fordyce Spots all over my lips. I know they came after I terribly bit them at work. It was also a very sunny period of the year, a beginning of Spring. I don't know what totally caused them but I remember I got a first dot after getting a cold sore back when I was still with my girlfriend. It didn't bother me almost at all, but at the Spring time when I bite them, they appeared all over my upper lip, month later they spread all over the lips, totally, leaving a small red part at the center of my bottom lip. I became totally depressed and started searching for help from different dermatologists. As I recall I went to 9 different dermatologits. First one in the Public Hospital, next to a specialist with a scientific degree. She told me she would proceed with electrocoagulation but she changed her mind. I lost 3 month because she told me that because of the sun - it was Summer - she couldn't do it. After 3 months she told me she wasn't talking about electrocoagulation - that thing she could done anytime. That really pissed me off totally. Next I went to a different doctor. He suggested CO2 procedure. I did it twice and it didn't do anything. I ADVISE YOU AGAINST CO2 on the lips EVER!!! Don't ever thake CO2 on the lips. It won't do anything. It will only harm the tissue and you will get scaring on the vermillion border. Then I went to a plastic surgeon and he told me he can't do anything, if would screw up everything. He told me about isotretinoin (ACCUTANE) and told me to go to a doctor who will prescribe me that drug. I took that s**t for 9 months!!! ...with almost no results :/ Don't ever take that crap, it won't work!!! Fordcye Spots will re-apear. And after taking isotretinoin my Exfoliative Cheilitis came back for GOOD. The thing is... Fordyce Spots apear after a big damage done to a lips. They are a defense against dryness of the lips... Unfortunately they look horrible! Other things I tried for Fordyce Spots with other doctors:
- tretinoin liquid
FINALLY... I went to another dermatologist - a dermatologic surgeon - the best in my town or even my region. He looked at my lips and told me that my problem are not only Fordyce Spots but the terrible inflamation of the lips. He told me they were swelling and that the fordyce spots and the inflamation (EC) might be linked to each other. He suggested several treatments - mostly light treatments. I told him that Fordyce Spots really bother me the most. So he decided that Photodynamic Therapy would be the best for both and we will se what will happen. I had a gel on my upper lip - because we did it only on that one - and I had to stay with it for 3,5 hours. Then they covered my whole face with a material with a hole to leave my lips uncovered. My lips were under a red light for ... I don't know... 20 minutes? They burned like HELL. But I was really determined to get rid of FS and EC so I didn't say anything, just stayed under the light for the whole procedure- I could take a break but I didn't. Sorry for my Englush btw. It's late and I'm almost sleeping. I just needed to wrote this down finally. I am after a week after the procedure. My lips are covered with crusts - not the tipical ones, just crusts after the procedure. I'm trying not to use any creams, gels, nothing. I want the whole stuff to heal naturaly. I am going tomorrow to my doctor so he can examine them. I need one more week off work (sick leave or whatever it's called) because they are healing very slowly and I can't go to work with such a thing. The lips are peeling all the time, even after some crusts fell off but the skin isn't turing to a hard shell as I have on my bottom lip at the moment. The ont posivite thing I have noticed is that the fordyce spots have gone - AT LEAST for now. I'm trying not to eat fat food. I only eat vegetables, fruits, rice and lots of fish... really a lot of fish. I don't drink milk or eat any dairy because it always gets worse after drinking milk. It sucks cause I love that taste of cheese and I've been drinking milk - boxed, bottled, cold, warm, hot - directly from cow. And I always ended with dried lips after drinking milk - A L W A Y S.
Milk has been the worse thing for me regards Exfoliative Cheilitis. It always dried my lips, caused them to peel. Every single time. I know I will be lacking iron, because I'm not eating any cow or pork meat, so I'm eating raw beets. Eating raw beets fills me up with iron like NOTHING else I know. That's it. I know my post might be chaotic and it's not the best English grammar you've read in your life. But I'm not English native so that's all I can do. I'll keep posting until I'm done with the procedure of PDT and till I'm healed totally. I will keep you informed and I hope my knowledge will be helpful to others. God... I'm so sleepy, I don't know what I'm writing. Ask me about anything. I might not be the best writer but I fully understand English as much as my native language. So yeah, feel free to ask anything.
P.S. And it wasn't that expensive as some people say. Converting the money I've paid to US dollars and EUro it would cost you guys...
-> for upper lip ONLY
...of course at the clinic I had the procedure done.