Acne.org Products
I have had very severe cystic acne on my face, neck and body since I was 11 years old. I am now nearly 28! I still see no sign of it slowing down and at this point I'm quite hopeless.
I have struggled to find decent employment through the years because of my severe acne, I have been socially and romantically rejected due to it and emotionally abused by other people all due to this skin condition.
I have been seeing dermatologists and getting creams and gels since I was 15 years old which all have failed. I was given birth control, antibiotics, spironolactone and accutane but had such severe side effects from all these treatments I could never properly complete the full course and just couldn't stick with it.
I have been following a strict diet since I was 21- 22 and have avoided all dairy and processed foods as well as gluten since then but this hasn't done anything honestly for my cystic acne.. sigh.
I just don't know what else to do? I just saw an Endocrinologist recently and was tested for hormonal imbalances/PCOS ect. hoping to find an answer and every test ended up coming back normal. He was stumped, I was told my acne was most likely genetic/idiopathic and there was nothing they could really do for me.
I just feel really worn down by all of this and am ready to entirely give up. I have spent years trying to treat this aggressive strain of acne to no avail. I have even gone as far as contemplating suicide. I'm desperate at this point.
What else am I supposed to do? I constantly feel as though I'm doing something wrong in regards to my skin and can't stop blaming myself as I have been blamed for having acne for so many years by other people.
Hopeless...
I have had very severe cystic acne on my face, neck and body since I was 11 years old. I am now nearly 28! I still see no sign of it slowing down and at this point I'm quite hopeless.
I have struggled to find decent employment through the years because of my severe acne, I have been socially and romantically rejected due to it and emotionally abused by other people all due to this skin condition.
I have been seeing dermatologists and getting creams and gels since I was 15 years old which all have failed. I was given birth control, antibiotics, spironolactone and accutane but had such severe side effects from all these treatments I could never properly complete the full course and just couldn't stick with it.
I have been following a strict diet since I was 21- 22 and have avoided all dairy and processed foods as well as gluten since then but this hasn't done anything honestly for my cystic acne.. sigh.
I just don't know what else to do? I just saw an Endocrinologist recently and was tested for hormonal imbalances/PCOS ect. hoping to find an answer and every test ended up coming back normal. He was stumped, I was told my acne was most likely genetic/idiopathic and there was nothing they could really do for me.
I just feel really worn down by all of this and am ready to entirely give up. I have spent years trying to treat this aggressive strain of acne to no avail. I have even gone as far as contemplating suicide. I'm desperate at this point.
What else am I supposed to do? I constantly feel as though I'm doing something wrong in regards to my skin and can't stop blaming myself as I have been blamed for having acne for so many years by other people.
Hopeless...
Sounds like your stress over your acne could be making it worse. Cut out all caffeine for the time being and try to do some activities that will release some of that stress. You have to stop looking at your skin so much, stop analyzing it. I don't know what you're currently using to treat your acne but start using something extremely gentle, try switching your laundry soap to fragrance/dye free as well. Despite not eating dairy/processed/gluten food you still could have some sort of food intolerance or even be sensitive to a chemical.
I have had very severe cystic acne on my face, neck and body since I was 11 years old. I am now nearly 28! I still see no sign of it slowing down and at this point I'm quite hopeless.
I have struggled to find decent employment through the years because of my severe acne, I have been socially and romantically rejected due to it and emotionally abused by other people all due to this skin condition.
I have been seeing dermatologists and getting creams and gels since I was 15 years old which all have failed. I was given birth control, antibiotics, spironolactone and accutane but had such severe side effects from all these treatments I could never properly complete the full course and just couldn't stick with it.
I have been following a strict diet since I was 21- 22 and have avoided all dairy and processed foods as well as gluten since then but this hasn't done anything honestly for my cystic acne.. sigh.
I just don't know what else to do? I just saw an Endocrinologist recently and was tested for hormonal imbalances/PCOS ect. hoping to find an answer and every test ended up coming back normal. He was stumped, I was told my acne was most likely genetic/idiopathic and there was nothing they could really do for me.
I just feel really worn down by all of this and am ready to entirely give up. I have spent years trying to treat this aggressive strain of acne to no avail. I have even gone as far as contemplating suicide. I'm desperate at this point.
What else am I supposed to do? I constantly feel as though I'm doing something wrong in regards to my skin and can't stop blaming myself as I have been blamed for having acne for so many years by other people.
Hopeless...
Sounds like your stress over your acne could be making it worse. Cut out all caffeine for the time being and try to do some activities that will release some of that stress. You have to stop looking at your skin so much, stop analyzing it. I don't know what you're currently using to treat your acne but start using something extremely gentle, try switching your laundry soap to fragrance/dye free as well. Despite not eating dairy/processed/gluten food you still could have some sort of food intolerance or even be sensitive to a chemical.
I had stopped drinking coffee/caffeine for a number of years but it didn't make a difference so now I'm back to it - I mean what the Hell. I actually don't look at my skin ever actually, I avoid the mirror all together except when I'm doing my skin routine and I barely just glance at myself. I don't stress about my skin nearly as much as a decade ago - stress really isn't that "Much" of a contributor to acne, the odd pimple yes, but not full blown cystic acne. I believe that's sort of an old wives tale.
I had started washing my clothes bed sheets with dye free/fragrance free detergent for a year or so but this made no difference so I'm back to regular detergent as the organic shit was getting too expensive.
In terms of skin care I use a gentle non-acne cleanser, a moisturizer (non-comeo) and benzoyl peroxide as my skin care routine
.
I eat very healthy. I have no food allergies and intolerances I have undergone testing in my early 20's for this by an allergist. I had done the process of elimination thing - you know where you eliminate every food one by one except for vegetables to see if "detracting" something from your diet makes a difference on the skin but this never did for me so I'm not overly OCD about food other than the fact that I avoid dairy (don't like it anyway) and eat healthy I don't take it to the extreme anymore with a vegan/paleo diet because truthfully if it's not yielding results on your skin after a year or two it's not worth continuing.
Are you doing the regimen? The regimen (from this site) has very specific instructions. I used benzoyl peroxide for years before doing the regimen and never got results because I wasn't using it correctly. So if you haven't tried the specific regimen outlined on this site, definitely give it a try.
Are you doing the regimen? The regimen (from this site) has very specific instructions. I used benzoyl peroxide for years before doing the regimen and never got results because I wasn't using it correctly. So if you haven't tried the specific regimen outlined on this site, definitely give it a try.
Yes! I follow the regimen, and I follow the steps correctly (if not exactly). I don't think people understand that truly cystic acne (Underneath the skin) doesn't respond to good skin care. The only thing "The Regimen" has gotten rid of for me is blackheads and whiteheads - the big cystic pimples still hang around to party on my face regardless lol.
Are you doing the regimen? The regimen (from this site) has very specific instructions. I used benzoyl peroxide for years before doing the regimen and never got results because I wasn't using it correctly. So if you haven't tried the specific regimen outlined on this site, definitely give it a try.
Yes! I follow the regimen, and I follow the steps correctly (if not exactly). I don't think people understand that truly cystic acne (Underneath the skin) doesn't respond to good skin care. The only thing "The Regimen" has gotten rid of for me is blackheads and whiteheads - the big cystic pimples still hang around to party on my face regardless lol.
I'm so sorry. Believe me, I understand your frustration, and I apologize for suggesting something you are already doing because I know just how annoying that can be. The regimen works to clear my cystic acne but only if everything else is perfect--no stress, perfect sleep, excellent diet, etc. Even when I was being healthy in all other aspects, I still had constant cystic acne. Even with the regimen, I still get pretty bad acne (although I'm only a few weeks in).
It's certainly possible that something in your diet or lifestyle is triggering it. I don't have any advice because I'm in the same position. I know sugar, too much caffeine, gluten, dairy and soy foods all trigger bad cysts. But as for what else could be triggering them, I have no idea. 
.
Are you doing the regimen? The regimen (from this site) has very specific instructions. I used benzoyl peroxide for years before doing the regimen and never got results because I wasn't using it correctly. So if you haven't tried the specific regimen outlined on this site, definitely give it a try.
Yes! I follow the regimen, and I follow the steps correctly (if not exactly). I don't think people understand that truly cystic acne (Underneath the skin) doesn't respond to good skin care. The only thing "The Regimen" has gotten rid of for me is blackheads and whiteheads - the big cystic pimples still hang around to party on my face regardless lol.
I'm so sorry. Believe me, I understand your frustration, and I apologize for suggesting something you are already doing because I know just how annoying that can be. The regimen works to clear my cystic acne but only if everything else is perfect--no stress, perfect sleep, excellent diet, etc. Even when I was being healthy in all other aspects, I still had constant cystic acne. Even with the regimen, I still get pretty bad acne (although I'm only a few weeks in).
It's certainly possible that something in your diet or lifestyle is triggering it. I don't have any advice because I'm in the same position. I know sugar, too much caffeine, gluten, dairy and soy foods all trigger bad cysts. But as for what else could be triggering them, I have no idea.
.
My diet has been refined over the years, trust me. I gave up dairy a while ago. I still drink coffee but that's only because I discovered it wasn't a "trigger" for me after I stopped drinking it for a year or two and had no results. I avoid gluten too (but for other reasons than acne). There's nothing really in my life style that would trigger acne. I truthfully think acne, especially longstanding acne is triggered only by genetics and can be worsened by diet in certain people.
You're probably right. I'm in the same boat. Sometimes I get scared I could be allergic to something uncommon, like broccoli or something. But I doubt it. I think there is just something wrong with our hormones.
lol I really doubt you're allergic to broccoli or that it could cause acne (don't worry, I had the same paronoid thoughts too at one point).
At this point I know nothing in my diet or lifestyle is bringing me acne like I used to believe. As I eliminated every possible factor through deductive reasoning, ya' know? like I thought maybe preservatives in food were my problem so I cut them out for a few years, didn't have any succcess so I stopped worrying about it as I figured out it wasn't a trigger.
I don't seem to have any "food acne triggers" - I still broke out just as much on the organic paleo diet I was on a few years back as I did when I was eating hardcore junkfood daily in my early teens. No connction there, though that doesn't stop me from eating a healthy diet regardless.
Dairy never "caused acne" but when I was consuming a lot of cheese/milk I ended up getting really heavy (up to 160 pounds at 5'6) and my menstrual cycles were very irregular. Since I cut out dairy over the last few years I lost weight dramatically and am now in the low 120's and my cycles are now totally regular. Though I still have bad acne, cutting out dairy and gluten have benefited me other ways. I feel like it's easier for me to digest food since I ousted the gluten from my diet and I feel my metabolism is able to "burn off" what I eat easier than before (it used to be so slow).
I understand the frustration completely- we are both about the same age, and have dealt with this for SO LONG. Like you say, I just feel worn down after a while. It's especially hard because I don't want to be isolated and hidden... but I often feel like I have no choice. This whole weekend, I tried not to be obsessive about it, but it was just so demoralizing to see existing cysts get worse, while new ones cropped up every day. Like today- I have two new ones! In addition to the three creating a hideous triangle on my left cheek, and the numerous scars and red marks I already had. Sigh. And diet doesn't do anything for my skin either, at least not long-term. When I first gave up wheat and dairy, things were great for about a week. Then it was like my body remembered, "Oh yeah, we're supposed to be destroying her life!" Back came the cystic acne. Raw food doesn't seem to help beyond a few days, either, nor does macro. Have been to so many doctors (who mostly disagree with each other and can offer me no real answer) that I have become extremely distrustful of the medical community. Today I am filling vials with my saliva (adrenal testing that I'm sure will cost me a ridiculous amount of money). Who knows if this will reveal anything, or if there is even real treatment for it.
Yeah, it is so hard to stop blaming yourself. Even if I stop blaming myself for actually having these painful ugly boils and cysts, I am still mad at myself for the way I react. It has taken me a long time to stop insulting myself with my thoughts. I mean, I would never talk to someone else like that, so why would I say those things to myself? And my constant shame and self-centeredness makes me cancel plans, avoid eye contact, and avoid intimate situations. I so want this to be over, so that it doesn't get in the way of my real life. I am taking this course in school about well-being, and I love it. It's reminding me of the importance of relationships, physical activity, stress reduction, and emotional balance. But these cysts are making all of those things so hard!
It's normal to feel depressed and ashamed and sad about our situation. Not to mention obsessed! The amount of time I lose because of this ridiculous condition... It makes me so mad sometimes. But I can offer a couple of tips to at least dealing with the emotional effects. 1) Remember that people improve and eliminate their acne all the time. It doesn't mean that what worked for them will work for you, but if they were able to find something, then you can too. Don't give up! 2) Focus on the people in your life who treat you nicely no matter what. Be there for these people! I look... not my best right now (putting it nicely), but I have friends who want to get together tomorrow, so I'm having them over. If I canceled, they'd be bummed, and friendship is more important than my current insecurities. Anyway, It's not like I'm going to feel great if I spend tomorrow night alone. They've seen my acne before, so it's nothing new to them. Just focus on having fun with the cool people in your life. 3) Be productive in some way. I think I would be a lot sadder if I was still dealing with acne, but also not pursuing my interests. I'm in school right now for environmental studies, and it's great- stressful at times, but I'm learning a lot, and thinking about things that are broader than things I was typically thinking about. Be productive in some way (not saying that you're not already doing this!). Don't let acne stop you from branching out or pursuing a goal.
Oh that was too big of a reply. It's my first post, so I need to learn to keep it brief. Hopefully, some of this helped in some way...? Well, your posts have helped me a bit- just reminding me that I'm not alone in this struggle. I do believe that it will get better for us!
I know that you are older than me (I'm only 22) but I have acne and you know what I said to myself?
I'm doing all I can, and if it's not going anywhere, then I'm going to accept it. I mean, why stress out something that can't be resolved, right?
I will admit, I don't have that same confidence that I do when I have clear skin, but I sure as hell am not about to let it take over my life and everything.
What I'm trying to say is, don't worry so much about it. If you're doing all you can and it's not working, just learn to accept you for who you are. Look at Sean Stephenson
I understand the frustration completely- we are both about the same age, and have dealt with this for SO LONG. Like you say, I just feel worn down after a while. It's especially hard because I don't want to be isolated and hidden... but I often feel like I have no choice. This whole weekend, I tried not to be obsessive about it, but it was just so demoralizing to see existing cysts get worse, while new ones cropped up every day. Like today- I have two new ones! In addition to the three creating a hideous triangle on my left cheek, and the numerous scars and red marks I already had. Sigh. And diet doesn't do anything for my skin either, at least not long-term. When I first gave up wheat and dairy, things were great for about a week. Then it was like my body remembered, "Oh yeah, we're supposed to be destroying her life!" Back came the cystic acne. Raw food doesn't seem to help beyond a few days, either, nor does macro. Have been to so many doctors (who mostly disagree with each other and can offer me no real answer) that I have become extremely distrustful of the medical community. Today I am filling vials with my saliva (adrenal testing that I'm sure will cost me a ridiculous amount of money). Who knows if this will reveal anything, or if there is even real treatment for it.
Yeah, it is so hard to stop blaming yourself. Even if I stop blaming myself for actually having these painful ugly boils and cysts, I am still mad at myself for the way I react. It has taken me a long time to stop insulting myself with my thoughts. I mean, I would never talk to someone else like that, so why would I say those things to myself? And my constant shame and self-centeredness makes me cancel plans, avoid eye contact, and avoid intimate situations. I so want this to be over, so that it doesn't get in the way of my real life. I am taking this course in school about well-being, and I love it. It's reminding me of the importance of relationships, physical activity, stress reduction, and emotional balance. But these cysts are making all of those things so hard!
It's normal to feel depressed and ashamed and sad about our situation. Not to mention obsessed! The amount of time I lose because of this ridiculous condition... It makes me so mad sometimes. But I can offer a couple of tips to at least dealing with the emotional effects. 1) Remember that people improve and eliminate their acne all the time. It doesn't mean that what worked for them will work for you, but if they were able to find something, then you can too. Don't give up! 2) Focus on the people in your life who treat you nicely no matter what. Be there for these people! I look... not my best right now (putting it nicely), but I have friends who want to get together tomorrow, so I'm having them over. If I canceled, they'd be bummed, and friendship is more important than my current insecurities. Anyway, It's not like I'm going to feel great if I spend tomorrow night alone. They've seen my acne before, so it's nothing new to them. Just focus on having fun with the cool people in your life. 3) Be productive in some way. I think I would be a lot sadder if I was still dealing with acne, but also not pursuing my interests. I'm in school right now for environmental studies, and it's great- stressful at times, but I'm learning a lot, and thinking about things that are broader than things I was typically thinking about. Be productive in some way (not saying that you're not already doing this!). Don't let acne stop you from branching out or pursuing a goal.
Oh that was too big of a reply. It's my first post, so I need to learn to keep it brief. Hopefully, some of this helped in some way...? Well, your posts have helped me a bit- just reminding me that I'm not alone in this struggle. I do believe that it will get better for us!
Thank you for the reply, it was very sincere and I agree with a lot of what you wrote.
I have considered geting the "salivary hormone analysis" done too - I heard it can "catch" imbalances that sometimes never show up in the blood test. I didn't know it was really expensive? I thought it would be totally cheap since you're just handing in a swab, holy sh*t.
I have had so much blood drawn over the years for hormonal testing (that never reveals anything) I'd like to try something new.
Thank you for the reply, it was very sincere and I agree with a lot of what you wrote.
I have considered geting the "salivary hormone analysis" done too - I heard it can "catch" imbalances that sometimes never show up in the blood test. I didn't know it was really expensive? I thought it would be totally cheap since you're just handing in a swab, holy sh*t.
I have had so much blood drawn over the years for hormonal testing (that never reveals anything) I'd like to try something new.
A salivary hormone analysis? This is news to me. How much does this cost and how long does it take to get the resutls? I notice eating things like pizza, nuts and sugar blow my skin up like they're is no tommorow. After changing my diet for years it seems like the slightest slip-up puts me right back at square one. I've been able to at least reduce my body acne on my chest and back but I still have very visible scars over every inch of skin on my entire upper body.
What's worse is my best friend asked me to go on a cruize with him. I promptly turned him down and was too ashamed to even give him a real explanation for why I couldn't go. I just say "im too busy" or "no passport" or some other BS answer. The truth is i'm afraid to get on the ship and then be caught in a situation where my friends want me to take my shirt off. I'm dying inside just thinking about this.
I'm 28 as well, have had this problem since about 19-20. It's exploded over the years and has left my skin looking like a battlezone. I feel like i look 45 because of the discoloration and how big my pores have gotten. Scared to think what another 10yrs will do.... Has anyone else noticed standing in the sunlight or looking in the rearview mirror in the car makes it 10x worse? 
At least I was clear in my early youth, I can't imagine having this issue at 11yrs old. What that must feel like to have basically NEVER been clear for all the years it really mattered. I can understand your pain.
Do you recall your Accutane dosage? Would low-dose Accutane be an option for you? I've heard of some people having results on even 10mg and although the course would be greatly extended you would be at lower risk for side effects. I'm sorry you are struggling but know that you're not alone. Hang in there.
Do you recall your Accutane dosage? Would low-dose Accutane be an option for you? I've heard of some people having results on even 10mg and although the course would be greatly extended you would be at lower risk for side effects. I'm sorry you are struggling but know that you're not alone. Hang in there.
I would never take accutane again, ever. You have no idea how my body reacted to that drug at the time and I'm terrified to ever take it a second time around in fear of experiencing the same nightmare.
Have you tried this? It's similar to accutane, only it's a natural vitamin, so you don't get the detrimental side effects associated with the tane. Accuatane works by shrinking the sebaceous glands at the root of the hair follicle, while pantothenic acid (vitamin B5) works by reducing oil production.
If you do go this route, which i'd say it's worth a shot for anyone...
You can supplement with L-cysteine as well, because this is an important factor in the creation of Co-A. And you can order pure forms of these vitamins online. As in, no added magnesium stearate and what not. Pure encapsulations sells a pure pantothenic acid. And there are various sellers of L-cysteine. It also seems like a good idea to take a pure B-complex with this as well. That way you are getting the whole array of B-vitamins. I'm actually currently experimenting with this treatment for large pores, which i've heard shrink up once the oil/sebum production dies down. I've only been on it for three days now, so can't report anything just yet
http://www.zimbio.com/Acne+vulgaris/articles/1691/Pantothenic+Acid+Vitamin+B5+Acne+Dr+Jeffrey
http://orthomolecular.org/library/jom/1997/pdf/1997-v12n02-p099.pdf
I think there is just something wrong with our hormones.
Actually I haven't. My brother did it years ago and it didn't work for him. I can't remember exactly what happened now, but he had some sort of bad side effects or something. Whatever it was, it scared me off of it. I am however thinking of trying fermented cod liver oil which is supposed to have a lot of vitamin A and help control oil the way accutane does.
The thing is, I don't have oily skin! I never have! It's always been on the dry side, never gets shiny, etc. It's difficult for me to believe the acne is caused by oil since I've always been so dry and have these massive cysts. Unless all my oil is deep beneath the surface? I don't get it.
I don't think you're that far off by saying that. In regards to the oil being deep beneath the surface. I think when it happens near the surface you get a smaller pimple, simply because it shows up on the surface sooner and would be far less inflamed than something that's been brewing for weeks deep below the surface. So i think it does boil down to oil production getting blocked deep within. At least for a large portion of cystic acne sufferers. Granted, this is my personal speculation
The biggest side effect with pantothenic acid that i've heard of is hair loss. And that seems to be countered by supplementing with L-cysteine. I think it's absolutely worth a shot, if you do it right, and with a pure source of pantothenic acid. And if worse comes to worse, and you notice some extremely undesirable side effect, you stop.
Also it's a water soluble vitamin, so whatever you don't use gets excreted. Let me know if you try it
Alternativista found out she was sensitive to citrus and that made her cystic acne go away. Maybe you should consider a blood test for food sensitivities and allergies, the whole thing. There's clearly something wrong. You just have to find it (easier said than done, I know, I know)
Alternativista found out she was sensitive to citrus and that made her cystic acne go away. Maybe you should consider a blood test for food sensitivities and allergies, the whole thing. There's clearly something wrong. You just have to find it (easier said than done, I know, I know)
I have had OODLES of testing done for food allergies sensitivities conducted. Nothing is wrong. There was a time I had cut everything out of my diet but carrots and spinach and guess what? I still had very very very bad acne regardless.
There's nothing wrong with me or my hormones. It's just me genes; my father, three of my half brothers all had severe cystic acne and I inherited his strain.
Hmmm ok, can you describe your acne more in depth? You said it was on your face and described it as full body acne. Where else on the body do you get it? Does the cystic acne ever come to a head? What are the contents of the lesions? And do they itch occasionally?
Back and front of the neck, shoulders, upper and lower arms, upper back, lower back, breasts, trunk, butt, thighs, stomach, inner things, hips and slightly down my legs. Very aggressive strain.
They are very large red pimples with heads for the most part. Some of them are cystic and others are papules. No they definitely do not itch - I have Acne not demodicosis.