SAMHAIN

358d

Very scared about a particular issue, so I'm including great detail because this has become the focus of my life to diagnose this, now. I'm also incl. a story about the last dermatologist experience I had (typical here in NE) in comments before anyone asks in response. It might be informative for some and validating for others.

I have discovered something worrying in my skin. I have always had issues with what i thought was "just" cystic acne since around 11. But I have always had issues with my eyelashes and even saw an apathetic dermatologist at 6 when they used to burn when they grew and I would absent-mindedly pull at them (i have since been dx ADHD-ASD at 33, so💁 Sensory sensitivities, hello)
The eyelash problem being: WAY TOO MANY, some grow kinked or backwards or into my skin or even grow out from the root and the tips bury into my skin somewhere else somehow... and the rows go all the way up my lid. They cross and grow over each other and get tangled and it drives me nuts.

I wasn't treated for acne (total neglect of health concerns through youth) and only recently have I discovered that the "stubborn whiteheads that never go away" seem to be either:

1) A keratin issue where, as I'm going to beat describe: the keratosis pilaris which normally just causes "regular ingrowns" all over my body actually forms deeper in the pore, usually somehow around or connected to the root bulb and filament, and is hard as glass or sand and 2-30x bigger than the root bulb. Face, neck, shoulders, thighs, rear, knees, knuckles, this happens everywhere these little sebaceous cysts.

Yes, I said 30x. Some of these have been as big as actual sesame seeds and sound like glass when my tweezers touch them. Some aren't near as hard, but squishy like gummy bears and elastic as the freakin day is long and weave through my skin like a blind hypodermic needle on a drunken stroll. Some of these have measured up to 1.5cm long after extraction. These must be extracted.

And no amount of BHA+SA/BP or "oil cleanses" is breaking this down nor preventing... much less slowing the cystic reaction that follows as my body attempts to fill with lymph and pus and strange keratinous scabby flakes to abcise this terrible growth with a sharp, coarse hair in in which grows every which way; often with a kink and sometimes in a corkscrew, right through my dermal layers and across veins and all other tissue such that when i remove them and the whole hair comes out, (yes i have extracted many,many of them over the years and validate with a 60x and photos) it's always surrounded by years-old translucent clear tissue (sometimes with what looks like a small vascular structure inside them?!) that looks exactly like a sebaceous plug that was given steroids and taken to its happy place, which does not stay tightly bound to anything except the hair shaft and the very depths of the pore from which the godforsaken hair grew. 🥵 That is to say, once firmly gripped in the right direction or once the overlying skin is freed, the things come right out with the only resistance being the "uncorking" from their respective pathogenetic pore with a momentary flush of blood.

These are *especially* prevalent in the corners of my eyes and over my actual eyelids, as well as in the skin of my eye hood beneath my brow. All this peach fuzz hair here alongside the inner of the bridge of my nose just grows sideways, ingrown, sometimes bobbing and weaving above and back below the surface of my skin, mostly horizontally but also randomly "spiderwebby" across my eyelid and into my temples, and my eyelashes do the same. Sometimes grow up my lid instead of out of my body into the air, and I won't notice for however long until it's itching or causing tension or torsion issues in my skin and i notice, or something scratches my paper EDS skin atop wherever it's weaving and kindof uncovers it. Then I tweeze them and fear for my vision as my skin cheese-grates while this keratin garrote peels backwards toward the stupid root pore it came from and I'm left looking like I got in a wreck for weeks after each removal.

~

2) A sebaceous filament which surrounds the hair follicle and bulb entirely (including the tip) and looks to have encased it in clear gelatin under scope, but then the (extremelyyyyy thick sebum??) continues to grow and worm any which random way through the nearby tissue under the top layer of skin for years until forcibly extracted in entireity. No peels or fsce washes seem to help.

~

3) Sebaceous hyperplasia

is this.... maybe not an EDS thing? Do i have both a collagen AND a keratin disease?

Contact Dermatitis & Other Eczema

Liquid Paraffin

Ehlers-Danlos Syndrome (EDS)

View all
  • SAMHAIN

    358d

    ★ Anecdotal story time: ★ I live in NE and it's a bunch of backwoods idiots out here. I went to a specialist clinic out of pocket (”Dermatology Specialists of Omaha") after a lengthy description over the phone which i asked to be noted and wasn't—with multiple 6-month-old scars in my face which were openly weeping across my cheekbone, cheek, and left sinus tissue, some up to 4mm deep, some currently showing lymph. The wounds were developing uncontrollable sebaceous plugs in all the pores surrounding the wound from the abcess inflammation building an immune response and sending white cells in moisture, because moisture and oils make my skin build comedones for some reason, so I was stuck in this 6 month feedback loop of finally tweezing what seemed to be the kerstin causing the cyst—and then one night during healing I'd sweat or something and wake to all my healing tissues and scabbing having turned yellowish or green and would have to debride and extract the sebaceous plugs ad infinitum until the swelling finally subsided and it stopped weeping and I could clean with alcohol and dress it again and pray it stayed clean long enough to scab and close. But I get contact dermatitis and comedones from bandage adhesives, so keeping them dressed caused reactions in the surrounding tissues and I ended up with more badly ingrown hairs which took attempts over the next 3 months to finally extract last night. Though others have struggled and in-grown in/near the tissues I damaged to get the original ones, since the skin was irritated and all this causes scarring that my hairs + just cannot get through. And so the cycle continues. They didn't literally even examine my skin or ask me to remove my mask the entire 10 minute visit of me describing my symptoms until I asked them if they were actually going to examine me, or what? This PA then grabbed a 30X scope and looked at my cheek and said "Yeah it looks like scarring, put Vaseline on it." After which I had to explain again that I stated a petroleum allergy (contact dermatitis, ooze, and cystic comedones), and that my skin reacts negatively to occlusives since I am an "extremely oily" skintype. She tried to give me a tub of CeraVe from the cabinet that evidently exists only to push this product from their office, and I had to break down for her what an "occlusive" is, and the fact that ”petroleum" isn't just "jelly" on the label of Vaseline brand skin goop, but it's a freaking CATEGORY of additives which are labelled under various different names like petrolatum, mineral oil, paraffin, etc. Her response to this utterly novel-to-her information was: "Wow! Well it sure seems like you know a lot more than I do, look at you with all these... terms. You're gonna make my job hard! That stuff is in everything." I was like "Uhhhh story of my life lady. I don't exist to make your life hard, my condition makes my life hard look at my face I'm a bleeping leper, are you even qualified to be doing the job you're filling? How can you not pronounce 'Salicylic Acid' but you're pushing palettes of CeraVe at people, ignoring their medical history? Can I get a second opinion if you literally don't know what you're doing? I'm not paying out of pocket to be belittled and condescended, I have an acute issue causing me open wounds and I need medical care from an educated specialist and a diagnosis." Her response was "Well, all doctors are trained the same so any dermatologist is going to recommend Vaseline, I'm not getting paid to push anything." So I called them out on writing "Specialists" on their placard without even offering specialised treatment (just a cabinet of Vaseline and CeraVe and "have a nice day, Thanks for the $500."). She then said she "could" ask their chemist if they could mix me something for my acid/moisture barrier that doesn't include "all your allergies" and then sat in silence. I asked if she was going to actually do anything else for me and she rubbed her neck nervously. Couldn't even muster something about "I dont know that I have the training you need to properly assess your issue, but I can have the desk book you a follow-up with one of our M.D.s," just nothing whatsoever. Then left to go talk to the chemist, came back and said they can't do anything for me and I should go somewhere else, sent me to the desk to pay $500 to be abused via neglect by the American Medical System, and then later received two letters, one Certified, telling me I'm not allowed to ever return and to seek treatment elsewhere. My mother demanded to me to come with, after I've had a lifetime of experiences with doctors go like this one and nobody literally believes my experiences. Autist life, we're "always lying" or getting "unreasonably frustrated," right? 🙄 At 33 my mother came with to bear witness and sat silent in disbelief the whole time. ★ Thanks for coming to my Ted talk. ★

  • SAMHAIN

    358d

    ★ Anecdotal story time: ★ I live in NE and it's a bunch of backwoods idiots out here. I went to a specialist clinic out of pocket (”Dermatology Specialists of Omaha") after a lengthy description over the phone which i asked to be noted and wasn't—with multiple 6-month-old scars in my face which were openly weeping across my cheekbone, cheek, and left sinus tissue, some up to 4mm deep, some currently showing lymph. The wounds were developing uncontrollable sebaceous plugs in all the pores surrounding the wound from the abcess inflammation building an immune response and sending white cells in moisture, because moisture and oils make my skin build comedones for some reason, so I was stuck in this 6 month feedback loop of finally tweezing what seemed to be the kerstin causing the cyst—and then one night during healing I'd sweat or something and wake to all my healing tissues and scabbing having turned yellowish or green and would have to debride and extract the sebaceous plugs ad infinitum until the swelling finally subsided and it stopped weeping and I could clean with alcohol and dress it again and pray it stayed clean long enough to scab and close. But I get contact dermatitis and comedones from bandage adhesives, so keeping them dressed caused reactions in the surrounding tissues and I ended up with more badly ingrown hairs which took attempts over the next 3 months to finally extract last night. Though others have struggled and in-grown in/near the tissues I damaged to get the original ones, since the skin was irritated and all this causes scarring that my hairs + just cannot get through. And so the cycle continues. They didn't literally even examine my skin or ask me to remove my mask the entire 10 minute visit of me describing my symptoms until I asked them if they were actually going to examine me, or what? This PA then grabbed a 30X scope and looked at my cheek and said "Yeah it looks like scarring, put Vaseline on it." After which I had to explain again that I stated a petroleum allergy (contact dermatitis, ooze, and cystic comedones), and that my skin reacts negatively to occlusives since I am an "extremely oily" skintype. She tried to give me a tub of CeraVe from the cabinet that evidently exists only to push this product from their office, and I had to break down for her what an "occlusive" is, and the fact that ”petroleum" isn't just "jelly" on the label of Vaseline brand skin goop, but it's a freaking CATEGORY of additives which are labelled under various different names like petrolatum, mineral oil, paraffin, etc. Her response to this utterly novel-to-her information was: "Wow! Well it sure seems like you know a lot more than I do, look at you with all these... terms. You're gonna make my job hard! That stuff is in everything." I was like "Uhhhh story of my life lady. I don't exist to make your life hard, my condition makes my life hard look at my face I'm a bleeping leper, are you even qualified to be doing the job you're filling? How can you not pronounce 'Salicylic Acid' but you're pushing palettes of CeraVe at people, ignoring their medical history? Can I get a second opinion if you literally don't know what you're doing? I'm not paying out of pocket to be belittled and condescended, I have an acute issue causing me open wounds and I need medical care from an educated specialist and a diagnosis." Her response was "Well, all doctors are trained the same so any dermatologist is going to recommend Vaseline, I'm not getting paid to push anything." So I called them out on writing "Specialists" on their placard without even offering specialised treatment (just a cabinet of Vaseline and CeraVe and "have a nice day, Thanks for the $500."). She then said she "could" ask their chemist if they could mix me something for my acid/moisture barrier that doesn't include "all your allergies" and then sat in silence. I asked if she was going to actually do anything else for me and she rubbed her neck nervously. Couldn't even muster something about "I dont know that I have the training you need to properly assess your issue, but I can have the desk book you a follow-up with one of our M.D.s," just nothing whatsoever. Then left to go talk to the chemist, came back and said they can't do anything for me and I should go somewhere else, sent me to the desk to pay $500 to be abused via neglect by the American Medical System, and then later received two letters, one Certified, telling me I'm not allowed to ever return and to seek treatment elsewhere. My mother demanded to me to come with, after I've had a lifetime of experiences with doctors go like this one and nobody literally believes my experiences. Autist life, we're "always lying" or getting "unreasonably frustrated," right? 🙄 At 33 my mother came with to bear witness and sat silent in disbelief the whole time. ★ Thanks for coming to my Ted talk. ★

  • SAMHAIN

    358d

    ★ Anecdotal storytime: ★ I live in NE and it's a bunch of backwoods idiots out here. I went to a specialist clinic out of pocket (”Dermatology Specialists of Omaha") after a lengthy description over the phone which i asked to be noted and wasn't—with multiple 6-month-old scars in my face which were openly weeping across my cheekbone, cheek, and left sinus tissue, some up to 4mm deep, some currently showing lymph. The wounds were developing uncontrollable sebaceous plugs in all the pores surrounding the wound from the abcess inflammation building an immune response and sending white cells in moisture, because moisture and oils make my skin build comedones for some reason, so I was stuck in this 6 month feedback loop of finally tweezing what seemed to be the kerstin causing the cyst—and then one night during healing I'd sweat or something and wake to all my healing tissues and scabbing having turned yellowish or green and would have to debride and extract the sebaceous plugs ad infinitum until the swelling finally subsided and it stopped weeping and I could clean with alcohol and dress it again and pray it stayed clean long enough to scab and close. But I get contact dermatitis and comedones from bandage adhesives, so keeping them dressed caused reactions in the surrounding tissues and I ended up with more badly ingrown hairs which took attempts over the next 3 months to finally extract last night. Though others have struggled and in-grown in/near the tissues I damaged to get the original ones, since the skin was irritated and all this causes scarring that my hairs + just cannot get through. And so the cycle continues. They didn't literally even examine my skin or ask me to remove my mask the entire 10 minute visit of me describing my symptoms until I asked them if they were actually going to examine me, or what? This PA then grabbed a 30X scope and looked at my cheek and said "Yeah it looks like scarring, put Vaseline on it." After which I had to explain again that I stated a petroleum allergy (contact dermatitis, ooze, and cystic comedones), and that my skin reacts negatively to occlusives since I am an "extremely oily" skintype.

  • SAMHAIN

    358d

    ...(cont.) She tried to give me a tub of CeraVe from the cabinet that evidently exists only to push this product from their office, and I had to break down for her what an "occlusive" is, and the fact that ”petroleum" isn't just "jelly" on the label of Vaseline brand skin goop, but it's a freaking CATEGORY of additives which are labelled under various different names like petrolatum, mineral oil, paraffin, etc. Her response to this utterly novel-to-her information was: "Wow! Well it sure seems like you know a lot more than I do, look at you with all these... terms. You're gonna make my job hard! That stuff is in everything." I was like "Uhhhh story of my life lady. I don't exist to make your life hard, my condition makes my life hard look at my face I'm a bleeping leper, are you even qualified to be doing the job you're filling? How can you not pronounce 'Salicylic Acid' but you're pushing palettes of CeraVe at people, ignoring their medical history? Can I get a second opinion if you literally don't know what you're doing? I'm not paying out of pocket to be belittled and condescended, I have an acute issue causing me open wounds and I need medical care from an educated specialist and a diagnosis." Her response was "Well, all doctors are trained the same so any dermatologist is going to recommend Vaseline, I'm not getting paid to push anything." So I called them out on writing "Specialists" on their placard without even offering specialised treatment (just a cabinet of Vaseline and CeraVe and "have a nice day, Thanks for the $500."). She then said she "could" ask their chemist if they could mix me something for my acid/moisture barrier that doesn't include "all your allergies" and then sat in silence. I asked if she was going to actually do anything else for me and she rubbed her neck nervously. Couldn't even muster something about "I dont know that I have the training you need to properly assess your issue, but I can have the desk book you a follow-up with one of our M.D.s," just nothing whatsoever. Then left to go talk to the chemist, came back and said they can't do anything for me and I should go somewhere else, sent me to the desk to pay $500 to be abused via neglect by the American Medical System, and then later received two letters, one Certified, telling me I'm not allowed to ever return and to seek treatment elsewhere. My mother demanded to me to come with, after I've had a lifetime of experiences with doctors go like this one and nobody literally believes my experiences. Autist life, we're "always lying" or getting "unreasonably frustrated," right? 🙄 At 33 my mother came with to bear witness and sat silent in disbelief the whole time. ★ Thanks for coming to my Ted talk. ★

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

Thank you! Your submission has been received!
Oops! Something went wrong while submitting the form.