I know this is really LONG. If you don't want to hear the back story, skip the next four paragraphs (to the bold text).
I have tried to figure out what could be causing it for years now. It has been so frustrating. Just a little info about me: First of all, I'm a female, I'm 25 years old, and I'm a healthy weight (on the low end of average for body fat percentage). I have dry skin (even water dries me out). I never had acne as a teen, maybe one small normal zit that went away in a few days once every few months. It seemed like the cystic acne very gradually came on after I got into college when I was 19. Since I turned 20 though, it's seemed like I've had at least one major/huge cyst on my chin at all times, sometimes five or more, all located around my mouth and chin, which take months and months to go away and leave dark scars when they're finally gone.
In the past few years I've come on this site, read the message boards, used the regimen that's recommended here, etc. I've tried to make a bunch of changes to my external environment (changing my pillow case every other day, using different laundry detergent/fabric softener, changing my shampoo/conditioner, washing my hands a lot more in case I touch my face on accident, using clean towels every time I dry my face, etc.). I've tried lots of different topical treatments like clindamycin, salicylic acid, benzoyl peroxide, and natural stuff like honey masks, turmeric, lemon, etc. Tried different cleansers/moisturizers from the typical brand names to more expensive ones that other prominent bloggers have said good things about. Didn't seem to make much of a difference. (The regimen on this site helped a little bit, but I didn't like the bleaching of my pillow cases and the fact that the cleanser was too harsh for my skin, the benzoyl peroxide really dried me out, and the moisturizer didn't moisturize enough... no matter how much I used my skin was still dry and tight.) Oh! I even went almost a full year without wearing makeup (which was horrible)! No change.
I've also tried to make significant changes to my diet. In 2009 I cut out dairy from my diet for over three months (probably 95%) because I used to have so much of it (sour cream, butter, yogurt, milk, cheese...) and for me that was difficult. I noticed a small, somewhat significant difference in my acne, but not enough to make me believe for sure it was THE cause, since I have had dairy all my life - I mean, why now? why would it start affecting me all of a sudden in my 20s? Anyway, I also tried to cut out table sugar and start using agave nectar for a while since it's supposed have a lower glycemic index (some websites mentioned that foods with a high GI could cause acne). I tried having less "inflammatory foods" and more foods that help with inflammation. I tried increasing my water intake, drinking lemon water every day... Didn't notice a difference with any of it. (I have always had a pretty healthy diet - lots of home-cooked meals, with meat and veggies. I rarely have fast food, and "dessert" was a small glass of orange juice most of the time.)
So I pretty much gave up the fight because I wasn't okay with going on Accutane - I did want kids eventually, and I don't trust something that screws with your system so badly that you have to go on birth control just to use it. It just wasn't worth it to me. So I was resigned to believe that my cystic acne was hormonal - that I just had some sort of hormone imbalance that I couldn't really do anything about.
Come October 2010, I become pregnant. Over the next four months I saw my acne slowly disappear, no new cysts. I automatically assumed it was because of all the hormonal changes my body was going through from being pregnant and didn't think twice about it.
At this time, I also cut out coffee, soda, and black/green tea from my diet, because well, you're supposed to when you're pregnant. (Previously I only drank coffee about once or twice a week, and usually it was some blended thing or a caramel macchiato. I had a soda maybe once every two weeks, and I had an arnold palmer (lemonade + black tea) about three times a week.) During the next four months I had NO coffee and NO black or green tea.) Also, I had severe aversions to anything sugary or sweet for almost three months, so I stopped drinking orange juice and had mostly bland or salty foods. Another things that changed was I started drinking a LOT more milk (2%), eating a lot more ice cream, and having a little milk and dark chocolate just about every day (so a little bit of caffeine).
*Side note: During this time I would wash my face only at night (but not every night), with Philosophy cleanser. About half the time I'd go to sleep with my makeup on (makeup: American Beauty liquid foundation and Bare Minerals powder). The times I would wash my face I'd use some basic Lubriderm lotion as moisturizer, the times I didn't, I didn't use any moisturizer or anything. (I would go some days without bothering to take the makeup off because I was at home all day with morning sickness.)
So, four months into my pregnancy I decide I really want some coffee ice cream, and I start having a few spoonfuls every other day for about a week. What happens? I get my first zit (actually two of them) since being pregnant - not major cysts, but fairly normal sized zits. Around this time I was also finally getting over my morning sickness, so I thought, this has got to be my hormones starting to go back to their normal selves. A few days later (still having the coffee ice cream) it dawns on me that it could be the coffee, so I stop having the ice cream and continue to cut out all coffee. NO new zits after that.
Two and a half months later, here I am, craving a blended mocha. So I get one to share with my husband and end up drinking half of it (this particular mocha tasted like it had some kind of concentrated coffee in it). THE NEXT DAY, I notice I've developed a MAJOR cyst underneath my skin on the corner of my chin, and the rest of the skin around my mouth and chin feels tingly like I'm about to get more. Ugh.
It being the coffee makes sense since I started gradually getting cystic acne in my 20s when I was in college and started drinking a lot more coffee at that time in order to handle the workload. I rarely had any coffee in high school, which was why I rarely had any issues with acne.
So this is why I believe it's the coffee - for me (and potentially for many other people). Somehow my system does not function properly when I have coffee and it expresses this by giving me horrible cystic acne. But there are like >250 different chemical compounds in coffee so it's not terribly surprising.
Ultimately I just wanted to share my experience because I know how horrible it is to have cystic acne and not know why! All I can say is that even though I LOVE coffee drinks, I am going to cut coffee out of my diet from now on. If you've had a similar experience to me (you're a girl, you're having cysts with dry skin, not being able to find any relief) at least just TRY cutting out coffee. I found one website during all my many hours researching possible causes in the past five years where a woman had mentioned she discovered her cystic acne on her chin was for sure because of coffee and I didn't want to try cutting it out because she provided no other details, it was just one testimony, and I enjoyed coffee too much. But I should have just tried it. I figured I didn't drink enough of it to make a difference. Also, when I cut out dairy for three months and noticed a slight difference in my acne, it was probably because I was also having less coffee (doesn't taste as good with soymilk to me).
I hope this helps someone else. If I find out for some odd reason that it's not the coffee and it's something else (what, I don't know. Maybe too much sugar, but I sincerely doubt it) I will come back and edit this post.
Good luck everyone. Cystic acne is a B.
edit: I have also tried taking large doses of essential fatty acids every day (Omega 3/6/9 - in the appropriate proportion), and I tried using Apple Cider Vinegar as a topical treatment for the cysts as well as putting it in water with honey and drinking it. (Neither worked.)
edit #2: Other things I've tried that didn't work: Coconut oil (in home made smoothies, in place of olive oil when cooking, and for "pulling" - swishing some in your mouth every morning for 30 seconds or so, which is supposed to draw out toxins). Jojoba oil on my face as a moisturizer and mixing with my cleanser to help my dry skin. Essential oils (eucalyptus, lavender, peppermint, tea tree...) directly on cysts. Baking soda as an exfoliator once in a while in my cleanser. I actually tried going without shampoo and conditioner for a while, using baking soda + water as shampoo and just honey water as conditioner... I could only handle that for so long. I've tried using only water to wash my face and no cleanser. Tried getting more zinc in my diet. Tried a Bare Minerals "acne fighting" powder that has sulfur in it.
If I can remember anything else I'll edit this again. Sorry, after 5+ years of trying to figure this out, I've tried more things than I can remember it seems.
***LAST EDIT (01-13-2012): I discovered that it is in fact, the CAFFEINE in the coffee that causes my cystic acne. Since coffee was the only real caffeinated beverage that I used to drink often and it has SO much caffeine in it, it appeared that it was just coffee. I ended up doing some more trial and error after posting this and found I could still have decaf coffee without having a cystic acne breakout. I am continuing to limit my intake though to a few times per week because of the small amount of caffeine that remains in even decaf.
I hope this helps someone else, who like me, has struggled for YEARS (almost 7 now?) trying to figure out what was causing these painful cysts on my face. I'm just happy that now all I have to deal with is all the scars, that will hopefully fade with time.
Edited by Cates, 13 January 2012 - 03:05 PM.