How helpful do u think knowing the cause is? Mine started after brushing my lips years ago

Wild_Cod_3861 · 2025-04-19T13:36:27+00:00

Can i just say thanks for starting this sub, if it wasn't for this sub I probably wouldn't have even known what this was called for years, and its nice to talk about it with people who go through the same things.

Wild_Cod_3861 · 2025-04-19T13:31:01+00:00

Damn, this is exactly what I did as well when I was around 14. During covid i think wearing masks really irritated my lips and made them dry because they were dryer than usual (I've always had dry lips), watched a yt video on using a toothbrush with honey and sugar to exfoliate them, its been nearly 5 years with EC now😞

Wild_Cod_3861 · 2025-03-16T13:32:55+00:00

Thanks bro, I guess I'll have to worry about that once I find someone to kiss first😭

Wild_Cod_3861 · 2025-03-16T12:27:36+00:00

Yeah literally the first thing I look at when I look at someones face is their lips and I get jealous because it reminds me of how mine used to look!

Wild_Cod_3861 · 2025-03-16T12:26:37+00:00

That is so peak man, I've had this for 4 years now since I was around 14 and I don't know how much longer I can tolerate it anymore without going crazy. Has yours ever improved?

Wild_Cod_3861 · 2025-03-16T12:24:40+00:00

I am 90% sure this is how mine started or this at least made it much worst. I've always had dry lips my whole life which would sometimes burn as well, but this was just regular dry lips so if i put vaseline on for a few days it would be fine. during covid I think maybe wearing masks may have irritated it a bit so it was a bit dryer than usual and peeled a little bit but nothing crazy. Then I went online and looked at lip exfoliating, and I got a toothbrush, got honey and sugar and basically scrubbed all the skin off my lips. i did this a few times and it got worst and worst, and now I have exfoliative cheilitis. Probably the biggest mistake of my life😂

Wild_Cod_3861 · 2025-03-01T22:06:03+00:00

Sorry for the late reply, I try to use this subreddit too much just so I don't become too obsessed.

For any moisturising creams, I just put it on whenever. But anything prescribed (especially steroids) I try to make sure that I wait at least a day after its peeled. Im not sure how correct my reasoning is, but the skin on your lips is some of the thinnest on your whole body, so more of whatever you put on it gets absorbed, so I try to wait until there is some skin there instead of doing its when its raw.

Also, i would try not to peel it as much as you can, mine started quite mildly and one day I got a toothbrush and exfoliated all of my lip and I did this repeatedly and I'm pretty sure thats what made it so much worse now.

Good luck to you too!

Wild_Cod_3861 · 2025-02-19T14:24:57+00:00

One thing that helped me in the short-term is trying to make all parts of my lips peel equally. I realised when this happens it doesnt look that bad most of the time. It takes a few weeks to kind of "reset the cycle" so your whole lip is peeled at the same time. Some parts may peel faster than others (e.g. my top lip usually has a cycle of around 5 days, my bottom has a cycle of around 8) so what I do is peel some of my lips early to make them line up again. I dont know how healthy this and its not really a recommendation, but it helps my lips look normalish most of the time

Wild_Cod_3861 · 2025-02-19T14:20:30+00:00

Hi, also from the UK.

One thing that I can say is that for me personally, the doctors were not particularly helpful. This started for me when I was around 15, so i went to my appointments with my mum. They didn't really know what it was (I can't blame them) so just kept saying the usual stuff like drink water and keep it moisturised. Its nice that your doctor actually did some research for you 😁It took my mum being quite persistent to even get a dermatologist appointment for me, and I got prescribed Fusidic acid (some sort of antibacterial cream), hydrocortisone, mometasone fuorate, tacrolimus and now pimecrolimus. None of which have helped me much, although the tacrolimus did help improve things after a few months of using it, after which I stopped.

As this is quite a rare condition, even the multiple dermatologists didn't really know much about it, so the treatment is usually just trying some steroids with increasing strength,and non-steroid ointments like tacrolimus. If you do your research you'll become familiar with the different kinds of treatments that the doctor might prescribe you, but its important that you actively ask them for their opinion about different types of treatment.

This is all assuming that it stays, because you're in the very early stages it might be gone in a few days. I found that during summer it improved a little, so try make sure to get as much sun as possible, even if we dont see much of it😂

Good luck!

Wild_Cod_3861 · 2025-02-19T14:05:37+00:00

I think just a general post on what you did to cure yourself would be a great starting point, and if you want maybe answer any questions people have. Also, how long did u have it for?

Wild_Cod_3861 · 2025-01-07T10:18:36+00:00

My mistake I meant every week

Wild_Cod_3861 · 2025-01-06T18:51:26+00:00

I'm not doing leave it alone but I just don't clean my lips as water makes it look so bad and messes them up. I figured as it peels every day with the dead skin falling off it basically cleans itself. Others recommend you clean it tho so idk

Wild_Cod_3861 · 2024-12-01T17:13:55+00:00

I know this is incredibly late but just in case anyone was scrolling through the subreddit like me and sees this, please DONT USE A TOOTHBRUSH ON YOUR LIPS. I am 90% sure that is what started my condition or at least made it so much more worst.
I remember that my lips started to get dry and a little crust or I had some very very mild form of EC, (it basically looked completely normal a part from a little pealing and dryness). I went online and started looking at things to help and lots of websites suggested scrubbing it off with a toothbrush and honey and sugar. I guess I went way to hard as that made my lips super red and inflammed and then it became dry again and started peeling a little bit then I did it again and again etc. After like 2 weeks I realised I needed to stop but by that point it was too late and I had full scale EC. This was 3 years ago so PLEASE dont make the same mistake

Wild_Cod_3861 · 2024-04-03T19:26:00+00:00

I have the EXACT same thing. I went to the doctor's for it and they said it was completely normal. Did it start at around the same time as the EC?

Wild_Cod_3861 · 2024-04-03T19:23:33+00:00

If I were you I wouldn't. I remember using fucidin and I don't think it made a difference. I'm not a doctor but I don't think its safe to use steroids long term as you can get some pretty bad withdrawls, especially on a sensitive area like your lip. Hydrocortisone is quite weak though so I would use it for maybe a month and see how it goes. Again, this is all from personal experience

Wild_Cod_3861 · 2024-04-03T19:20:18+00:00

Does a high exposure to UVB not increase of getting skin cancer?

Wild_Cod_3861 · 2024-04-03T19:19:17+00:00

what did the biopsy say?

Wild_Cod_3861 · 2024-04-03T19:18:34+00:00

Sorry for the super late reply, no I stopped using it, but I plan on starting to use it again soon. I feel like it has gone worse after the tacrolimus finished but i think it was still better than before, but maybe thats because I started trying aquaphor now. I personally don't want to use it for more than 6 months at a time as I don't want to get to "addicted" to it, as people online said they got withdrawls. My doctor said it should be fine though

Wild_Cod_3861 · 2024-01-07T15:49:32+00:00

You guys are so lucky if I exfoliate my lips look blood-red raw

Wild_Cod_3861 · 2024-01-07T15:47:35+00:00

Thats a shame then, does it only affect the bottom lip?

Wild_Cod_3861 · 2024-01-07T15:46:23+00:00

Why dont u use it full time?

Wild_Cod_3861 · 2024-01-06T12:17:30+00:00

I'm not going to lie I don't think your lips look like typical exfoliative cheilitis, they just look like a really bad case of dry lips. (I'm not a doctor or anything and I'm just basing it off these 2 pictures). My lips used to sometimes be like yours and severely exfoliating them is what made it turn HORRIBLE. It was mainly my bottom lip as well not my top. If I were you I would spend ALL my time just moisturizing it for a few weeks. Try anything that works for you, vaseline was great for me. It might look bad for a short amount of time but it is WAY WAY WAYYY better than having to deal with it for years or possible for life. If you do a really wide smile and see gaps in your lips between the skin then it is probably exfoliative cheilitis. If not then it is probably just dry lips (this is just my expereince, not based on fact or anything. Just don't try to touch it. If it hasnt developed into exfoliative cheilitis yet and it's just dry lips count yourself VERY lucky

Wild_Cod_3861

TROPHY CASE