My EC story

Disclaimer- i am not sure how to change my Reddit username or why it is what it is)

Just wanted to share my story here with EC to connect with others.

I have had EC since 2020. During the pandemic, I got Covid very early on, while there was a lot of panic and confusion in the world. I was scared, and was drinking A LOT of tea because I read somewhere that helped the illness. I believe this constant drinking caused my lips to become raw and sensitive from being wet, and they became peely. I peeled the skin off. I believe that is what initially triggered my EC.

It's hard to remember if the peeling was constant after that. But, all I know is I am still dealing with it today, 5 years later. For a while I kind of ignored this issue and would peel the skin off after it got wet in the shower. I felt insecure going to work with the flakes. I also didn't realize that the peeling was damaging. I think I just figured that my lips were dry or something, or maybe I just didn't want to address it. I also got into a new relationship 1.5 years ago. I was very insecure about the lip peeling as well, especially being with someone in a new relationship where you're already a bit nervous. I kind of just kept peeling the skin off and ignored the issue for a while. I saw a few different doctors over the years. Sometimes I went in when my lips were peeled- and they said my lips looked "great" or would just give me some moisturizer. One even assured me that it was okay to peel dead skin off the lips... Looking back at some of these doctors, I don't really feel like they did their do research and they definitely did not help. I was able to find doctors posting about EC on the Internet, and I am not even a doctor... why can't my doctors do their research if this is their job.

About four months ago, since november, I've decided to start trying to take matters into my own hands and try to get rid of this thing once and for all. From my research on YouTube and Reddit, it seems like the people who have been successful have put a lot of Aquaphor on, went in the sun, and stop peeling the flakes on their lips, as well as using some kind of cream like a steroid. I spoke to my boyfriend and told him that I need to let the skin stay on my lips. I tried going to the doctor again. I went to a dermatologist who gave me some steroid cream and told me not to pick at my lips. Then I went to a second dermatologist to see if anything else could be done. She gave me some higher strength steroid cream. I was frustrated with the second dermatologist because she was supposed to be great, but it didn't seem she had ever heard of EC. She told me that I must have some sort of allergy that's causing this inflammed reaction. I got tested for a few different allergens that came back negative. She told me I could do a more in-depth testing for many other allergens, but I have not gone to do that yet because my gut feeling tells me that, as I mentioned, this did not start from an allergy but from me picking. I also got laser done, which I had to suggest to her myself... This seemed to help and make the peeling very thin for a little while, but then the issue did come back.

I am desperate to try to speed this up and get rid of it as fast as I can. I've already dealt with it for so long. It takes such a big toll on my life and my relationship as well which is the hardest part for me. It sucks because some people would say that this is not really that big of an issue and that people have much worse health conditions. They are correct, but it really has been very frustrating for me. It's really really frustrating to deal with something for so long and not be able to get rid of it or understand it.

I am now in the fourth month of just trying to leave the skin on my lips alone as much as I can. I have also been applying Aquaphor a lot. I do think I am seeing a bit of improvement, but the issue is definitely still there. I just feel like the flakes are a little bit thinner now. I'm just going to continue with leaving the skin alone and applying constant aquafor or vasaline. I've also heard that in certain cases, going in the sun has helped. I just dropped $300 on and at home UVB light because I live in an area that is not sunny and is very cold and snowy right now. It's frustrating that the progress is so slow even though I'm trying so hard, but I guess the lips have really been damaged over many years. Sometimes I even wonder if I really am getting better, but I do think that the flakes have gotten a bit thinner.

In total- what I'm doing - hydrocortisone cream 2.5 - I'm not even really sure how long to apply this... some people say on and off and they take breaks - aquafor/vasaline - just ordered UVB light - stop picking

I posted some pictures of my lips as well. In the beginning ones you can see that they were a bit more inflamed when I was still peeling them and overtime. I think the skin underneath has gotten a bit less red and you can also see that the flake was thicker a couple of months ago and now I think it's a little bit thinner. That last pic was today. I don't know if u can see it but there's a flake all over the middle bottom lip. I'm still not cured. I hope this goes away soon.