Alright so I've been debating whether to write this post or not but seeing as I've always been a fan of origin stories I reckon I'll give it a shot.
Exfoliative Cheilitis hit me after I left for University late last year. My lip skin was literally completely fine before then except for a raw patch that I had on the middle of my top lip which was considerably small. I understand now that this may have been a sign of cheilitis but I'd had it for a couple years. Often the skin would grow back but, as I have black skin, it would look out of place so I'd peel it off with my teeth (bad mistake).
I'm not 100% sure what kicked this all off. Like many of you, I used to bite the skin off as a kid because my lips were often dry and I didn't like having shiny lips from using lip balms. However, I'd since stopped doing it as I used vaseline more as I grew older.
My first sign that my lips were not quite okay were that after a night out my lips didn't look nice -- very dry and I think their may have been white stuff but I don't remember too well. Eventually it came to the point when I could see during the day that the skin was somewhat splintering and felt very dry -- even after using vaseline. I tried peeling but it always came back. When I got back home for holidays I decided I was going to try to end it and this is where it got worse.
So I googled 'dry lips' blah blah looking for ways, other than popular balms, to make the lips smooth. Unfortunately, I stumbled across WikiHow; now that site is some bullsh*t but I won't get too much into it. I ended up listening to some of their instructions on how to cure Exfoliative Cheilitis (I didn't know what it was at the time but saw I had similar symptoms) and 'exfoliated' my lip skin off with a wet towel.
I'm sure many of you have tried this and know why I regret it so much. I remember feeling relieved and the feeling of tingly lips and having lips more reddish than they should be didn't bother me as much as the alternative did. But eventually the skin grew back after a couple days and would then get hard and dry no matter how much I moisturised it. I bought Burt's Bees honey lip balm thanks to more bullsh*t instructions I found online and used it religiously. It didn't help at all and I'd just end up peeling the whole lip off again.
Exfoliative Cheilitis is a crazy infliction in the way that you can feel like its gone but it comes back and torments you endlessly. It's the kind of horror movie villain you marvel at, at the tv in the safety of your home but the thought of ever having to combat such a monstrosity is frightening to say the least. EC is that villain and I really didn't, at least for a month or so, want to admit that this was going to be more difficult than I had originally thought.
In my desperation I came to a point where I believed exfoliating the skin regularly would be a good idea. So I did it every 2 days or so to the point where I must have rubbed off all layers of skin. I'm going into detail about this because this was the worst possible thing I could have ever done.
Since then I've basically been growing my layers of skin back (I've had this for about 6 months or so). The way it happened was I stopped exfoliating because my lip had become way too sore and red. I let the skin grow back again but this time it was different. The last times it had grown back it had grown back as my natural skin, but now I had pale skin growing back. It turned white and mushy when in contact with water, when I showered I'd have to wait 30 minutes or so for it to dry and look like a lip but before that it was just strands of mush.
I read Daniel's posts and bought aquaphor after about 3 months of taking vitamins, drinking lemon & honey tea and still using vaseline as a moisturiser. Be careful if you do use Aquaphor because, for me, It made my lips worse. Much of my normal skin ended up also peeling because I had gotten some Aquaphor on it. I also did some stupid things like using my eczema cream on my lips because, during nights of frustration, I thought maybe eczema might have spread to my lips. The cream made my normal skin very dry and peeled overnight; so my EC affected area grew substantially.
During all of this I read this forum religiously, meaning that I inevitably tried many many different things; constantly switching. I tried the leave it alone method where I put nothing on my lips at all, but that was very uncomfortable, disgusting and I didn't see any improvement. I did it for a week before thinking 'wtf am I doing?' I know some of you vouch for it, but for me; it didn't work.
I also tried using coconut oil for a while. At first I thought it was a God-send as when I used it after a shower, it helped dry my lip faster so I could go out and not feel too anxious. However, coconut oil stained my lips and, like I said, made them dry. Anything that keeps your lips in the 'cornflake' formation where the tips seem to rest freely on the upper base of the lip are not worth using.
I got home 2 months ago, got no shower at home so when I decided I wasn't going to get water on my lips - period- it was a bit easier. I found that my lips grew back stronger than when I let water splash on them but the 'cornflake' skin was still growing . At this point I was using non-petroleum jelly to moisturise my skin, aloe vera gel and fucidin to help with the inflammation and still taking multivitamins along with Acidophilus probiotics. My lips were at this time 'better' but not good. The skin had grown back in a way that I could look in a mirror and be like 'ahh I see what you're trying to do there, some creases and natural skin colour returning. Not too bad' but still; I couldn't keep the skin on for more than a week because it would crack in several places despite the fact I moisturised it and the cornflake tips would begin to show.
Like so many times before, I'd had enough and decided to peel it off. This was a big decision seeing as just the day before I had travelled for up to 12 hours carrying out errands in another city. I looked many people in the face and caught their looks of disgust. That day was definitely a contender for the worst day of my life. My first coach ended up driving past me so I had to take public train to get to the next coach which I also ended up missing so I had to buy a ticket for a new coach which ended up being delayed several hours and all the while I had to talk to people with flailing flaps of skin. The only thing that kept me going that day was thinking that if I just leave it, eventually it will even out and I'll be normal again.
But the next day I looked in the mirror and thought 'F*ck that man this sh*t is going'. But this time, I was a lot more careful and honestly, I want you to take this with a grain of salt because I don't know if this will work for you. Reason being is that I am sure I've done this several times before but never had the same results. So basically, I peeled the skin but this time I took hold from the tip of the flaps and peeled VERY LIGHTLY so as to leave any new skin underneath completely intact. This was incredibly hard to say the least but when I was done I put nothing on the lip and went to sleep.
When i woke up my bottom lip looked more normal than it ever had before. It was still a little swollen but the new skin had 'hardened'. I could get water on it and it wouldn't turn to flaps or mush. But I was so scared to moisturise it that I reverted to the Leave It Alone method which, again, was not a good idea. The skin ended up getting way too dry to the point where it cracked again in several places. I considered leaving it on but the cracks ended up being so big that I decided I'd start again. So I peeled it all off again.
There wasn't as much new skin as before which meant that I was back to reddish, tingly lips. The skin grew back the way I was familiar with, cornflake flaps and mush; but this time I was invigorated because I knew eventually I could peel it and experiment with the hard skin again. It's worth noting that this may be where most people claim they are cured after their skin peels off on its own and they see a healthy layer. Only difference is I've been judging when it's appropriate myself. After peeling off the flaps again the same thing happened, the healthy skin hardened after exposed to air but this time I put only one thing on it: honey.
I've used a lot of the moisturisers people plug on here, even some of the sponsored ones that I was obviously too stupid to notice. In the end, they've always either not been successful in preventing the flaps, or have stained my lips, or both. Usually both. The colour of honey is ideal for a black man so my lip looks relatively normal. It's also the best moisturiser I've used because it can actually stay on for a whole day but its advisable to reapply every 5 4 hours or so or after eating and drinking (as I've found drinking water actually dries out my lips momentarily).
I know this is a long post but my story is long and I don't want to miss out anything for those who are also going through this. Basically, the honey has helped keep my new skin waterproof, intact, and the right colour. One thing I have to mention though is that I'm by no means 'healed' yet, my lips are looking 10x better but a small portion is still not waterproof. However, I used to struggle with eating because the saliva would make the skin loose. I had the same issue while using the honey at first but recently I've had no issue with it, there are no flaps to make loose and the skin is too tough to whiten up again. Although the skin is tough, I need it to be smooth. I'm not sure if this is going to happen after a while or if I need to reintroduce my lips to water again. For the last month or so I've only used a wet towel to clean my face after rubbing soap on with my hands. I 'sky' all my water, in fact I can't remember the last time I actually put my lips on the surface of anything LOL.
I can tell you for a fact, if I hadn't been using honey my lips would still be loose and cracked up right now. But I believe it's all part of the same process, the honey has just helped normalise my lips again. If you're allowing your lips to look like cornflakes, yours are probably just as damaged as mine with honey on but the healing process is the same. I've been using it for a week now and i still look the same as day one, whereas glycerin, non-petroleum jelly, vaseline, aquaphor - all of those things gave me the cornflakes. So if you're struggling with the aesthetic side please use honey. If you've peeled your lips or had a peel, honey on them before bed, in the morning and after meals. There's no need to use anything else; see how it helps you.
Also look out for your oral health. I noticed I had a bout of oral thrush which I'm still treating which may have contributed to my EC, I'm also taking anti-candida pills and still taking my vitamins. I can't say for sure what started it but I'm finally at a point where I can manage it more easily and not feel like an absolute freak. For months I refused to go out, even my own family gave me that look of 'what the f*ck is that on your damn lips?!' and I can't blame them.
But let me also exaggerate this. I've had this for 6 months. If you've had it for a day or a week you're just gonna have to come to terms with the fact you have months ahead of you. But still try the honey, see if ti works. But I believe people who have had it for longer will have enough new skin to form a hardened layer that can stay moist and normal-looking after having honey applied to it.
I'll upload images soon, it's 3am and I wrote this as a spur as a moment thing and my laptop is almost dead. Think that's a sign.
Just to summarise
- coconut oil, aquaphor, Antibiotics , etc. did nothing for me
- Honey has helped prevent the 'Cornflakes' and lips turning to mush
- use it if you decide to peel, I'd never advise you to peel though. But if the lips peel on their own you can also use it then.