It's been about 8 years since I've last posted here. It's interesting too almost all new usernames, and pretty much no one around from back in the day (except for jsl123 lol). This forum is also much more dead than it used to be, and very hard to follow with the new layout.
Anyway, I felt like I should provide an update as it's been almost a decade since my last post.
My EC started from excessive picking as a kid, and only became full-out AC when I was about 16 years old.
I tried every topical treatment out there, and back in the Daniel Miller days, I was inspired to try the "leave it alone" method and did that for 3 months.
To this day, I still stand firm that the only thing that ever helped my lips was leaving them completely alone. During that time, I couldn't eat properly, speak properly, or antyhing like that. I had to block water from touching them in the start so that the yellow crusts could stay attached long enough to turn into hard thic crusts that seemed to become less yellow over time. At the 2 month mark I was letting water hit them more, except I would cover my moth in the shower to the water didn't detach them.
long story short, I flew out to Maryland to meet with an oral pathologist whom has published literature on EC, he told me to stop letting them buildup excessively and actually removed them in the visit after soaking them peroxide and then numbed them right afterward to avoid any discomfort. After that, I begin using Aquafore and Epiceram together to manage my condition.
For the next 6 months my lips were amazing, the best they've ever been since pre-EC days. The buildup was soft and could easily be removed after a shower. Slowly over time the regular peeling cycle returned. but the skin underneath wasn't so raw and I would try to wait until the crusts were ready to come off almost on their own before removing them (3-5 day cycle).
Anyway, fast-forward to today, 8 years later. I wish I was coming here to provide a positive update on how things turned out, however, the opposite is true. My lips are worse than they've ever been. As I write this post my lips are burning, inflamed, the peeling cycle just ended and my lips are looking more raw then ever. My condition has worsened over the years. To make matters worse, the peeling has extended both lower down my outer lips, and inside my inner lips. I've developed more fordyce spots, even on my lower lips now too. I don't know where to turn. My lips no longer feel manageable as they had been for so many years. I can't afford to hide away for 3 months like I once good, I was hoping to get married this year and life has only become more busy, not like when I was 17 (I'm 25 now).
To make matters worse, I've noticed that in the past couple months the line in my inner lower lip where the EC started and the salutatory glands stopped producing saliva has moved further back in my mouth. So even when I moisturize I has to put it into my inner lip which comes off easily and goes into my mouth. My fear is that years of providing my lips with an aqaufore barrier has finally caused them stop producing any moisture on their own, similar to how this whole condition probably started in the first place.
I'm at the lowest point I've been in years, just as my condition is about to hit the 10 year mark. I don't know what to do. Any advice would be appreciated.