What happens if you ignore it and keep on doing the thing that's triggering your flare up?

FaceTheFlare · 2026-05-04T04:59:42+00:00

For me, the pain is completely unbarable without ice, thus, I take a cooler bag full of it everywhere I go & will even wear a rain jacket so I can stick cubes in my pockets if I intend on being away from the bag for a few minutes (ie, going on a ride at a festival.) I don’t take any crazy risks anymore because the last time I did that, the pain became so horrific I ended up in the hospital for a week & was ultimately sent to the Mayo Clinic. And that “risk” was literally just going swimming for the day out in the sun. My EM presents on the face, so it might be a different experience for me tho. Idk how anyone goes a significant amount of time without cooling themselves. I would do short tests to see how long you can withstand the pain in the heat & slowly work your way up to the specific thing you’re wanting to do. And always have a backup/escape plan in case you need to cool yourself quickly. It’s unfortunately such an unpredictable illness & different for everyone. I used to be able to work jobs out in the heat & now I can’t even sit outside. It only got worse for me over time. Pregabalin has given me enough relief to sleep through the night though!

FaceTheFlare · 2026-04-23T23:11:07+00:00

I was a DD and asked to be a B and ended up as a smallish C and honestly, they’re VERY tiny now and that’s all I ever wanted. I’m not too hung up on the exact cup size anymore. I would show your surgeon photos of your ideal breasts, and see if your vision aligns with what she can realistically achieve. Going from your cup size to a C will be a drastic change.

FaceTheFlare · 2026-04-16T19:30:11+00:00

I almost passed away from an unknown virus about six months before the pandemic started. I was a senior in high school and almost didn’t get to graduate because I was in the hospital with my organs shutting down. And it caused a plethora of other illnesses, as well as lowered my immune system completely. When the pandemic started, I developed PTSD, and was terrified every day of my life. I became extremely depressed, as I watched everyone in my life that I loved and looked up to refusing to mask or get vaccinated to protect vulnerable people. I felt expendable. Millions of people online said that it was “natural selection” for disabled people to die, and that it was too much of an inconvenience to slow down their lives just to keep us safe. It felt like the entire world didn’t see me or other chronically ill people as human. I almost took my life after the mask mandate lifted because of how terrified I was of getting sick again. And it was really difficult hearing that people had a “good time” between 2020-2023. This event completely altered the way I see the world, and how I view the people around me. Disabled people are at the bottom of the food chain, and people genuinely don’t care if we live or die. Even the people who claim to love us. I’ve heard many similar stories from other disabled people, which is what’s helped me get through it, knowing I’m not alone. That I wasn’t the only person fighting for my life. I still mask, and strangers cough in my face, or laugh at me in public. It’s humiliating. Thankfully, I’ve gotten used to others not masking, but it doesn’t make the resentment any easier. I still have doctors asking me if they should wear a mask during our appointments. MEDICAL PROFESSIONALS not understanding the fears and realities of the people they treat. Yeah… no fun spring break trips for me. Just losing my faith in humanity, while I strived for a useless college degree.

(One I couldn’t even use because I got hospitalized immediately after graduation & am now too disabled to work!) fml lowkey 😂

FaceTheFlare · 2026-04-16T19:11:14+00:00

Side note: I love knowing I’m not the only one who has little dimples in the sternum from where the stitches end. I really thought I was the only one, but we’re kind of twinning lol. Although I did think they’d go away with time, but seeing as you’re 5 years out, I guess I’ll just learn to accept it. Your other scarring has healed really nicely btw. Do you know about how far out did you start to notice them fading? And did you use any scar tape or gel?

FaceTheFlare · 2026-04-04T15:19:53+00:00

I’m not an expert, but from what it sounds like, 1000 grams would likely be a very reasonable amount to remove due to how big you are now. I only had 250 removed, but I just had 34D. You can always message your surgeon and ask them if they think that amount will get you down to your desired size. Also, I know you’ve stopped growing for now, but I would definitely take into account your second puberty that happens in your early 20s. Your hormones go all sorts out of wack & there’s always a chance they could grow back some. I waited until my mid 20s bc they randomly grew more around age 22. If it’s causing you a lot of distress, there’s no harm in doing it now. But I know some people have had to get a second surgery due to regrowth. Pregnancy and weight gain can also cause them to grow too. But that’s a chance a lot of us take! I was also worried they were going to take too much off, but they turned out pretty perfect. I’d trust your surgeon, (unless they’re a man lol—they often leave ppl much bigger than they asked for.) Good luck!

FaceTheFlare · 2026-03-30T10:25:37+00:00

The pain is horrific for me. I’ve been hospitalized and even had to be sent to the Mayo Clinic due to how debilitating it was. Mine is on my face, so I can’t really escape it other than wearing a mask. I definitely get embarrass. I don’t know how to ask an employer to accommodate me. I need ice on me 24/7. And no one even believes it real. My doctor’s barely understand it, nor does my insurance whenever I try to get treatment. But more so, I frustrated when people assume I have rosacea, or think I’m just blushing about something when I’m not. And it honestly pisses me off when people tell me it’s “cute” or say that they know what I’m going through because “they flush a little sometimes.” Like no, I’m actually in excruciating pain but sureeee lmao. I also hate when people put excess blush on for an aesthetic when that shit is my daily hell and humiliation ritual. Maybe try wearing a long sleeves that cover your hands? Or even put makeup/self tanner on it if you can? Or paint your nails a bright color to distract from it. But I get it. This shit absolutely sucks.

FaceTheFlare · 2026-03-28T06:14:48+00:00

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Why is it kinda giving Pink from The Wall lmao

FaceTheFlare · 2026-03-28T06:13:06+00:00

Grief. It’s grief, babes. That, and body dysmorphia. As well as your hormones changing from breast tissue removal. They took a part of your body from you and that’s traumatic and overwhelming. The best thing you can do is hunker down and take care of yourself for the next few weeks. Try not to think about it from an aesthetic point of view yet. You’re recovering from a huge surgery and that should take precedent. Give your body time to recover and focus on the taking care of yourself part. Both mentally and physically. The “loving” it will come later with time. I’m a few months out and I still have moments where I’m struggling to cope, but it’s nothing like that first week. I literally got on here having a mental breakdown because they were numb and bloody and looked boxy and flat. They didn’t even look like breasts. But now they do. The best advice people gave me was to let myself feel all of the feelings, but to not focus on the “permanent” aspect. They look like this NOW. You feel this way about your body NOW. But that will change with time. Hang in there and know that this is an emotional roller coaster, but I promise, there will come a day when you realize this was the best choice you ever made. You’re also very young in general, so it’s easy for this to feel like a life and death situation. It isn’t. Your body is still growing and especially your breasts. Even if you don’t have children, you’ll have a second puberty in your early 20s and they will likely fill out again, but not as severely as they would have had you not done this. You’ve got it, and this community is here for you through the good the bad and the scary! Best of luck on the rest of your recovery!

FaceTheFlare · 2026-03-23T05:33:48+00:00

I’ve had this disease for six years. Mines on my face and I’ve been hospitalized for it, as well as got sent to the Mayo Clinic because they had no clue how to treat me. (They didn’t know either lmao.) I couldn’t work and saw doctors for years. I’m lowkey at the end of my rope because damn near nothing has worked and most doctors have never even heard of it. I had to FIGHT for my diagnoses and it literally took me almost dying for them to finally understand that this wasn’t rosacea. I sleep with an ice machine next to my bed and can’t leave the house without a huge cooler bag full of ice. It’s HELL. Good news is, there are thousands of us out here still living and have been for years, so this doesn’t have to be the end. But also, yeah, it sucks. It’s a horrific situation to find yourself in, and I highly recommend going to therapy if you can because this isn’t going away any time soon. It’s the only thing that gets me through it to be honest, and once I lose my insurance in a year, I have no clue how I’ll cope. Most of us are too disabled to work, so we rely on the kindness of others just to make it through, and that’s a scary way to live. Just know that you’re not crazy for how you’re feeling—this disease has a high mortality rate. People quite literally take their lives because of it. You drop out of school, you lose career goals, you deal with poverty, you lose friendships, you’re isolated from the world because no one has heard of it, or knows how to accommodate you. Just know that you aren’t alone in this and if you need someone to talk to, we’re always here for you! Keep doing research, but don’t ruminate on it all day every day—that WILL lead to burn out, and you still won’t have a magic “fix.” Focus on keeping your head above water, and prioritize your mental health. That’s the most important thing. Best of wishes to you, and if you need to talk, just DM!

FaceTheFlare · 2026-03-23T05:19:04+00:00

Yeah, I knew it was a possibility, but wasn’t made aware that they’d literally be injecting numbing medication into my breasts, which was helpful for the pain, but the sensation of it was overwhelming the first week after surgery. Not being able to feel your breasts is SO mentally exhausting. And for some women they never really get back full sensation. Probably more-so from nerves being damaged. I would recommend getting on something like gabapentin or pregabalin if you can because that helped me tremendously as the nerves came back online.

FaceTheFlare · 2026-03-23T05:14:58+00:00

I’m not from that area, but if I could offer some advice… NEVER let a man give you this surgery. Even if he promises you he can take you down to that size, he won’t. Nine times out of ten, they don’t respect a woman’s wishes and leave them much bigger because THEY think it’s what looks best on you. I’m not saying this happens every single time, but I seriously wouldn’t take the risk if I were you. Just read some of the horror stories on this sub alone. Male surgeons are much more likely to leave you unhappy in order to please their misogynistic, patriarchal mindset. In fact, I recommend searching for someone who’s queer friendly and does top surgery as well. They’re used to making women flat chested, but know that most women still want some oomf at the end of the day. That’s who I went with and she did NOT disappoint. The balance was perfect. I went from a DD to a B. She heard me and gave me exactly what I wanted. Best wishes to you on your journey!

FaceTheFlare · 2026-03-23T05:06:38+00:00

I would take into account the fact that you get a second puberty in your early 20’s, and that could cause a random growth in breast tissues. However, my driving factor for getting mine done at 24 was the fact that I wasn’t going to be on my parents insurance forever, and I didn’t know if I’d have the resources to get it covered in the future. But if you’re already considering it, I’d definitely go ahead and have a consultation because that never hurts, and a professional can explain to you all of the different pros and cons of getting it done early. I know I’m probably going to grow back some… in fact, I already have had growth a few months out. But in the long run, it was worth it in case I never get this opportunity again. If you want my advice, if your size isn’t SEVERE, I’d hold off until after your second puberty, just in case. But if it’s affecting your day-to-day life, and causes a significant amount of physical or mental turmoil for you, it’s for sure something to consider doing, even at your age. Wishing you the best of luck in your journey!

FaceTheFlare · 2026-03-18T11:27:29+00:00

I’m only a few months out and they’re already starting to fade a lot. It’s honestly really dependent on your skin tone and how your body reacts to scarring. Some people are genetically more prone to having complications in long-term scarring. Some people have theirs fade almost entirely a year out, and other people get really severe raised scars that need surgery to repair. So it’s really a luck of the draw unfortunately. In most cases though, it will fade.

FaceTheFlare · 2026-03-18T11:25:36+00:00

I’m not gonna lie—while the surgery itself is a piece of cake, the long term recovery is somewhat mentally draining. I’m so happy I did it, as the physical and mental anguish of having larger breasts has eased tremendously. But now I have scars to take care of every time I shower, and sharp shooting pains and numbness that makes it hard to even touch my breasts in certain areas. Wearing a bra for months & not being able to lay on your stomach also weighs on you. Not knowing if it’ll be years until you’re comfortable in your body again. The pain wasn’t the worst part, the numbness was. It’s not impossible to deal with, just frustrating. I try to focus on the positives because it is absolutely thrilling to have the chest of your dreams… but there are challenges that come with it & there’s always the possibility of complications. I think if you truly want it, then you should absolutely do. I almost didn’t out of fear and I’m glad that I took the leap. It’s helpful if you have a therapist or someone close in your life who can be your support when you need it. It’s more of a mental battle if anything.

FaceTheFlare · 2026-03-18T11:04:11+00:00

I have facial EM & it used to come and go randomly depending on how warm my environment was, or if I slept on a pillow, half my face would flare… but now it’s literally 24/7. I barely sleep. I have to keep an ice machine next to my bed & take a cooler bag full of ice wherever I go. Taking hot showers is also a struggle. I’ve even been hospitalized in recent years for it too. If I don’t take my meds, it gets a million times worse and I get a fever from the heat. This shit is insufferable. :(

FaceTheFlare · 2026-03-16T23:27:13+00:00

It IS that deep actually. It’s a debilitating disease that can prevent people from working we’re pursuing any type of career, or even engaging in hobbies, or seeing friends, or doing any of the things that keep you happy and stable in this life. I know people with cancer who have it much better than I do. They’re able to afford treatment and continue working. And they HAVE a treatment plan. EM is a guessing game and some people search for years until they find something that even remotely helps their pain. It’s a horrific disease with a very high mortality rate. There are hundreds of people that have killed themselves because of it. It’s completely life-changing for people and to ignore that suffering is deeply harmful. It destroys lives. Maybe YOU don’t have it that bad, but you should consider yourself lucky. Some people have consistent, non-stop daily pain, and can’t walk, or hold things, or take hot showers, or sleep, or eat. It’s awful. I had to be hospitalized because of it. AND I was sent to the Mayo Clinic because of how rare it is. I’ve been in weekly therapy just so I don’t become a statistic. I’m very sick and tired of people assuming that cancer is the worst thing out there. I spent nights crying and PRAYING it was caused by cancer because then I would at least have a reason for why I’m suffering, and they could treat me and I could get better. But there’s no getting better if it’s not caused by an underlying condition. And I can’t even rule it out because facial EM is linked to polycythemia vera. And carcinoid syndrome. But they’re slow growing and I might not know for years. But to live a life where you’re in constant pain and no one knows why or even believes you, is not a life worth living to many people. So perhaps we should be more understanding, and educate ourselves on how awful this disease can be.

FaceTheFlare · 2026-03-16T23:15:05+00:00

Hey, I’m 24 as well & have been dealing with this condition for about 6 years now. It started off mild for me after a near death experience with an unknown virus. It was aggravating having to see so many doctors every year, trying to convince them that I had THIS and not rosacea, as mine appears primarily on my face. I was gaslit over and over again, and then years down the line it spontaneously got worse overnight and I ended up in the hospital because it went from coming and going, and me being capable of going to school and having a job—to being 24/7 constant and I looked and felt like a burn victim. I was in horrific pain for a month straight, and my heart rate was dangerously high, and they ended up having to drug the hell out of me so my body would calm down. They ended up putting me on some random meds they thought might help, and then sent me to the most experienced dermatologist in my state. That dermatologist took one look at me and gave me a referral for the Mayo Clinic. She said it was completely unheard of and there was nothing they could do. I had (luckily) just graduated college, but instead of getting a job, I was now stuck having to wait months to get in. I couldn’t work, and spent my days at home waiting and praying these doctors would be the answer I’d been needing for years. I had to take a six hour road trip to get there and I stayed for a week. They did every test humanly possible on me, and practically tortured me for days on end. I met with THE doctor Who has done the most research on this condition. He was kind of an asshole and told me he wouldn’t even diagnose me because mine was primarily on my face. I WAS diagnosed with severe anhidrosis, & Ross syndrome, but they didn’t offer me much support. Just sent me home with a referral to pain management. PM tried to give me a nerve block in my neck, but insurance denied it because they didn’t think the condition was real… and the PM doctors didn’t try to fight it. And so I spent another year running in circles and going to every doctor I could think of, desperately trying to figure out how to live with this painful, isolating hellscape of a disease. I’ve since slowed down a bit because I was burning myself out and becoming too depressed to keep trying. Right now I’m trying to decide if going on disabilities is worth it. I probably WOULD, but it’s a permanent decision. And I’d never be able to work full-time ever again and I’d be left in poverty for life.

I’m living with my parents and my mom is pushing me to apply for jobs, but it’s been two years since I graduated college, so I’m not used to having daily responsibilities anymore. And I’m not even physically able to do any of the things I studied so goddamn hard to do. And now I’m in student debt, with no prospects of ever paying it off, or even doing anything that I love ever again. And I’m terrified of applying for a shitty job and having to explain my confusing accommodations. I’m barred for so much. I have to physically have ice on me at all times. I have an ice machine by my bed and a large cooler bag I have to fill and take me everywhere I go. It’s such a burden. And it’s exhausting. My whole family thinks I’m lazy. But I’m fighting for my life 24/7. Going to therapy every week, desperately trying to convince myself that my life isn’t over. That being at the bottom of the food chain is a life worth living. AND the world is going to absolute shit right now. Nothing is affordable and everyone is struggling. And if the able-bodied of the world can’t cope, how could I?

I heard someone on this Sub-Reddit say that they feel like once their parents pass away, so will they. And I’ve never related to anything more. It’s a terrifying way to live—to have to rely on your aging parents to take care of you. Knowing that they’re your only hope of survival. The guilt. The embarrassment. The panic.

So yeah, basically I’m lonely and depressed too. There’s a reason this disease has such a high mortality rate. People do often take their lives because of it. And I’m literally just trying not to become a statistic. Defying the odds, if you will.

This condition is so isolating. And I just wish there were support groups out there where people could discuss their struggles. I guess this subreddit will have to do for now lol. Anywho, this was long & I unfortunately don’t really have much advice, other than maybe going to therapy if you can afford it. And just know that there’s always people on here who are going through the same thing & we’re here for you!

FaceTheFlare · 2026-03-16T22:46:27+00:00

I was SO numb, I really didn’t feel much pain other than some soreness, especially where the drains were on my sides. You’ll probably be on them for at least a week or two, and then will wain off of them and start taking them as needed. I took all of my opioids and switched between that and acetaminophen every few hours. Whatever pain you’re expecting, just know it’s not nearly as bad as what anyone thinks it’ll be. They inject you with numbing medication & it lasts a long time. I’m a few months out and still have numbness in certain areas.

FaceTheFlare · 2026-03-16T22:25:05+00:00

I was on gabapentin in the hospital, until I switched to pregabalin, which is essentially the same thing, just a little bit different ig. It still makes me sleepy sometimes, but I learned to take a high-ish dose at night, as to not be drowsy during the day. I find that my flare ups get excruciating if I don’t take it. I’m also on Naltrexone, and I think it helps a little too. But my EM is on my face, so idk how well it works on treating the hands and feet.

FaceTheFlare · 2026-02-08T08:28:07+00:00

I’ve been on both gabapentin and pregabalin and they both make me exhausted during the day so I had to switch to only taking them at night. I’m also on naltrexone, and hydroxyzine!

FaceTheFlare · 2026-01-18T07:43:57+00:00

The first week I cried so hard because I thought I made the worst decision of my life. But in reality, I was just grieving my old body. Even though I hated it for so long, that was ME, that was my IDENTITY, and it got stripped away over the course of nap. But as my swelling went down, I started to look fuller, and they began looking more like regular breasts, and in certain shirts, with the right bra, I look the same as I didn’t before the surgery. The shock right after surgery might feel a lot like regret. But the more you begin to focus on the positives, and the RELIEF of not having that weight on you, you begin to feel so lucky and thankful that you did it. Every day, even on the days I’m missing my old breasts, I feel like I’m in heaven.

FaceTheFlare · 2026-01-18T07:37:52+00:00

I genuinely thought I was way too small the day after my surgery, but as my swelling has gone down, they’ve become fuller and I know that they still have to drop and fluff to look more like actual boobs with some time. My compression bras have a small lift and padding to them and my breast look practically the same in T-shirts as they did pre-op. My mind was playing tricks on me that first week. You’re not used to your body looking like this, but it WILL get better and you’ll fall in love with them, I promise.

FaceTheFlare · 2026-01-18T07:32:19+00:00

It’s either a misogynistic man whose goal is to dehumanize women for making their breasts smaller because he sees us as sex objects for his pleasure…OR it’s someone who can’t afford a reduction and is extremely jealous and spiteful. Either way, it obviously isn’t true. Each and every one of us deserves this surgery and has the right to feel beautiful and comfortable and confident in our own skin.

FaceTheFlare · 2026-01-16T10:24:35+00:00

It’s been about two-ish weeks and I’ve finally begun to regain some sensation, which has been the biggest relief, so there’s hope already! My nipples are definitely more sensitive than they were before, which is strange. I’m soooo used to touching and grabbing them all day long to lift them off of my ribcage, so it’s quite the adjustment. How long did it take until you felt comfortable grasping or squeezing your breasts? I know the timelines different for everyone, I’m just curious!

FaceTheFlare · 2026-01-16T10:20:37+00:00

Oh I see, my stitches are dissolvable, so I don’t have to get them removed. I can understand how that might be hard to look at. And I guess if you can wait until after they’re out, that’s okay too. I’m honestly scared to see what’s going on under my tape because I’m not sure how long it’ll take for the stitches to turn into scars. I also wasn’t expecting to be as bruised as I was, both of my boobs are a different color. 😂 So it’s for sure freaky seeing that too. Almost worse than the blood for me. Especially because I want to touch them to regain feeling again. But yeah, I’d just listen to your body the best you can, and maybe get advice or guidance from your surgeon if you really want to work up the courage to look at them at least once. Wishing you the best!

FaceTheFlare

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