Hello, I have had EC for around 3 years now. I am 21 years old, and I have been lurking this forum during these years. I decided I might as well create an account at this point since this plague isn't going away anytime soon. I have hundreds of pictures saved, I won't post them now, but if there is interest maybe I will round them up and upload to imgur or something.

I have been to numerous doctors of different specializations, but none of them have helped. Most of them just get tired of me and say "just use Vaseline" as if that wasn't the first thing I attempted. This ordeal has completely changed how I view doctors, as they all give up when presented with something they are unfamiliar with. To be specific, I have visited: allergy doctors, my dentist, an orthodontist, an oral surgeon, dermatologists, and my primary care physician .

The allergy doctors and dermatologists were the least helpful out of them all, and most of the reluctance to help came from them. Some of these doctors were at Mayo clinic. I had high hopes for them, but they did nothing except bring me in over and over for "checkups" while naively claiming that my lips "look better" and saying to use Vaseline. They were no help at all and I will never visit that organization again, especially since they charged thousands of dollars. They had me go through allergy patch testing and a biopsy, which was the one benefit of going there, since I was able to learn more about this condition (not much more).

To fix my lips I have tried all kinds of things. Various medications/creams/jelly/balms that the doctors prescribed, and others that I found suggested online, like on this forum.

These medications include:
Vaseline
Cortizone10
Mupirocin 2% ointment
Aquafor
Ketoconazole 2% cream
Carmex
Apexicon Cream
Triamcinolone Acetonide Ointment USP .1%
Lanisoh HPA lanolin
Burts Bees chapstick
ProTopic

Pills:
Motrin 25mg 2x a day for a month
Deoxycycline Hyclate 100 mg 2 a day for 2 weeks
Prednisone 10mg 3 a day for 4 days, then 2 a day for 4 days, then 1 a day for 4 days

None of these medications fixed my lips, though some of them did make it easier to deal with. Aquafor, Carmex, lanolin, and Motrin were suggestions I got from the internet, the rest are from the doctors.
The Vaseline does make this condition more bearable in ways, as it acts as a light lubricant, which makes the crusty dry feeling go away.
Cortizone may have made my lips even worse, which is bad because I used it right as I got this condition and didn't know anything. Maybe I could have healed my lips if the cortizone didn't worsen it. I say worsen because I believe the cortizone may have inflamed my lips more than they already were.
The Aquafor is the same as the vaseline.
The lanolin made my lips too gooey, so I stopped taking it.
Ketoconazole is for destroying yeast, I believe. There was a time when I was at Mayo and the doctor did a swab on my lips and the results said there was yeast present, then he had me use ketoconazole for a bit and when I returned, they again swabbed me and this time the results said the yeast was gone. I will be going to another doctor soon to get more swabs because it has been a while since I tested for yeast.
Triamcinolone was prescribed to me by the same Mayo doctor that gave me the ketoconazole, he told me to take both at the same time, apply one then wait 5 minutes and apply the other. This didn't do anything except make my lips a gooey mess and tears the skin.
Apexicon Cream I am unfamiliar with, but it was prescribed by the allergist I saw, and it did absolutely nothing.
Mupirocin ointment, prescribed by the allergist, I can not recall the effects of this ointment, but it didn't help either. One of the Mayo nurses later told me that I shouldn't use ointments because they can cause yeast easily (she mentioned neosporin by name).
Burts bees chapstick did nothing, of course.
ProTopic was the last thing that Mayo prescribed me before I stopped going. They told me that there is a cancer warning for it, which is unlikely, but still present. Due to this, I got scared of using it and convinced myself that If my luck is bad enough to get this lip condition, then my luck is also bad enough to get cancer from a skin cream. I didn't ever use the ProTopic.

For the pills, the Motrin dosage was recommended by my primary care physician (and mother) who I believe were just hoping for a miracle. The motrin did nothing except make me a bit tired.
The Deoxycycline and Prednisone were prescribed by a local dermatologist that I had previously seen for Acne problems when I was younger. These dosages were taken at the same time, I would take the Deoxycycline and then wait a bit and take the Prednisone. Again, this did nothing except make me tired.

So, how did I get this condition to begin with? In 2014 I got braces to fix my teeth alignment with the end goal of jaw surgery to fix my bite. Everything was fine until my orthodontist told me to find an oral surgeon to plan the jaw surgery with. I didn't go to the one my orthodontist recommended because of insurance issues. I found a local oral surgeon with a seemingly good record that accepted my insurance, instead. He told me that I need to get my wisdom teeth removed as soon as possible, I had all 4 in. They weren't causing me problems, but he said it was necessary for the jaw surgery anyway, so I should do it as soon as I can. I said OK, and had the procedure done. It went well, I was sedated with and IV. Once I woke, my entire face was sore and numb, as expected. To recover, I laid in bed for days, with my mouth slightly open since I couldn't close it. I was also taking strong steroids for the pain. I am not sure because it was years ago and I was heavily medicated at the time, but I believe when I got out of the surgery that my lips were entirely raw, somehow. My lips worsened in the week following and started to peel. I tried vaseline and cortizone, but they were too far gone. We later had them send us the specific details of what was used in the surgery and what they prescribed:

3.0 Chromic Gut Sutures
Fentanyl
Decadron
Versed
2% Lidocaine
Epinephrine

Prescriptions given:
Hydrocodone 5/ APAP 325mg
Oxycodone 5mg/ APAP 325mg

The week after the surgery I went back to the surgeon for a checkup, confused at what was happening to my lips, and he told me "use Vaseline." Following my checkup visit to the surgeon I went to doctors in this order: primary care physician -> allergist -> dermatologist -> mayo (for 2 years)
Mayo had allergists and dermatologists, but none helped. Then I stopped going to Mayo, and these days, me and my primary care physician just chat about this condition whenever I go in for unrelated visits.

So did the surgery cause this condition? Did the surgeon screw something up during the surgery and make my lips go raw (scrape off skin)? Was it the medication afterwards? Leaving my mouth open, which in turn caused my lips to dry and make me lick them? Was it something else entirely? Or maybe I just have bad luck? Who knows, at this point I don't really care what caused this, I just want it fixed. Sadly, looks like that isn't happening soon. After I stopped visiting mayo, I pretty much just gave up trying to fix this mess. I submitted to just letting my lips be scabby, flakey, disgusting messes. When the skin hardens and hangs off the side, I just peel it, which I know is bad, but I would rather have raw dry lips than disgusting ones. This is also the reason I decided to make this post. Maybe all this info can help others figure out what works and what doesn't, and hopefully lead to a real solution for everyone. I'll answer any questions, or post the images if you want.