I don't know where the appropriate place is to share this, but I feel that sharing about my experience might not only help others out there that are suffering with something similar, but it also might help me get some answers, because I'm still searching for a better cure. The holy grail would be for me to be put in contact with a leading specialist, because I swear what has been happening to me should be studied by science! Earlier this year a dermatologist diagnosed me with a rare skin disorder where my hair follicles go haywire and produce too much keratin. Keratin is the same stuff our hair and nails are made of. It's also the same thing deer antlers and rhinoceros horns are made of. This results in painful 'erruptive vellus hair cysts' all over my face and body. I suffer from some conditions called trichostasis spinulosa and multipili gemini. At least the dermatologist said those are the two closest terms she can find to describe what is going on with me. She did admit that my symptoms are atypical and I could tell she was sort of scratching her head trying to figure it out. The cysts grow these hard seed-like pods that, when broken open, contain tightly woven balls of fine hair... white puffballs of hair. Some are black. I have had dozens of hairs come from a single follicle at once. I've also had all kinds of hard, scary spiky-looking things come out of my skin. Weird bundles of hair that are fused together and resemble hay or wood splinters. Some of the stuff looks like plant matter with leaves, and some resembles black feathers. The largest, scariest ones resemble dark red slugs with spiky heads! All of this stuff burns and itches and hurts when it's under my skin until I get it out. The last 10 years have been hell for me. I've never been so scared and never felt so alone in my life. For a long time, I couldn't find a doctor who would believe me enough to give me a proper referral to a dermatologist. I was laughed at and told I was crazy. They treated me like I was on drugs. It was so embarrassing and awful. But I never gave up. Finally in April of this year, I found a wonderful doctor who was able to give me the referral to a dermatologist that I so desperately needed. She listened and she actually believed me! She also took my word that spironolactone is the only thing that seems to help my condition, and was happy to prescribe it for me right there on the spot. I was in disbelief. I cried and cried! I Back in 2023 I decided to try it after a couple years of my own online research on the topic. Luckily, my best friend is a trans woman who just so happened to be on the drug to stem hair growth and promote breast growth. It works by blocking male hormones (androgens) in the body, and in turn, slows down hair growth. Surprisingly, I learned that all females produce both male and female hormones. My gf was sweet and gave me 6 months worth of the medication. At first, I thought it wasn't working, but by the 3rd and 4th month, things got pretty scary. I mean absolutely horrifying. Things were bursting through my skin left and right, all over the place, all at once, and much bigger and scarier than I'd ever seen! Big black plaques formed on my stomach, neck and breasts. My face was a constant source of pain. Cysts would form, and no matter how many 'seeds' I could squeeze out, there were always more right behind those. Any time I would extract something, it would bleed like crazy. My face looked like raw hamburger. I had to wear face masks that would stick to my wounds, just to be able to face my family, forget leaving the house! And it left ugly scars everywhere that I'm still dealing with. I'm sure if you look hard enough in my videos, you can see them. I've had hairs come out of everywhere, even my knuckles and palms! Well, I checked online to see if this sudden erruption of material from my body was normal with people who are on spironalactone for acne, and it turns out, it is quite normal and to be expected. Women on Reddit referred to it as the 'purging phase', and they said it's rough, but if you can survive it, you'll come out the other side with miraculously clear, smooth skin. I want to be clear that my condition is NOT acne, but it acts and looks very similar. Unfortunately, my friend shared the bad news that she would not be able to send me any more of her prescription because she needed it for herself! Of course I understood, but DAMN! And my skin had finally cleared! I ran out and was forced to go off the spironalactone for a year and a half as I searched for a doctor, as I went through homelessness, with nowhere to hide when my face and neck would errupt. I faced judgement at the homeless camp I lived at and almost got kicked out (with my kids) twice because they pulled me aside and asked if I was on drugs. But somehow I never gave up hope. And by some miracle, I found a doctor who believed me and gave me a referral to a dermatologist. In April I saw them and they had to take some extractions in the office to examine themselves to make the diagnosis. It was painful and extremely uncomfortable to have them poke and gouge at my face to get what they needed. It bled like crazy. They also did an ultrasound and said they could see the fibers under my skin. What they showed me on the microscope was horrifying and oddly fascinating. I snapped pictures on my phone because I couldn't believe what I was looking at. They even let me bring in a few of the samples I had carefully saved and we put them under the microscope to have a look. I can't even describe what we saw. The doctor said I had the worst case of trichostasis spinulosa and multipili gemini that she's ever seen. You'd have to see it yourself to believe it. There isn't much research on the topic available because it often gets misdiagnosed as acne. The only insight she could share with me is that it's caused by a mutation in my 17th genome, the one responsible for keratin production. Doc said the only way to permanently fix the problem is to get laser hair removal, which will result in ablation of the hair follicle. I'm looking into some options locally and trying to figure out some sort of payment plan I can afford. My partner still has a hard time believing me. He almost left me over this disorder, convinced that I'm crazy. I don't know why he doesn't believe me now that I have actual doctors backing me up, and we still fight every time it is brought up. He has my kids thinking I'm crazy, too. I went through another awful, bloody disgusting purge phase again this past June, right on the 3rd month of starting spironolactone again. And it left more scars. All the hairs and hard 'keratin debris', as the doctor called it, grew back. I'm happy to report that my skin is relatively clear now, and I think I'm past the worst part again, as long as I never get off of this medication! And it was depressing, going through this ordeal for over 10 years now. So I gained some weight. I really thought my career of showing my body on umd was over, several times, but I recently have received treatment for my ADHD and it helped me to get out of my funk and say, 'fuck it!' I don't know if anyone will read this. I just wanted to share. If I am bold enough to share more of my body with you guys, just know that it's taking an incredible amount of bravery on my part to do so. But I love you guys, and obviously my fetish isn't going anywhere. It's still very strong. I'm just super happy that my skin is clear and I don't have any open sores any more. I had to avoid getting anything foreign on my skin for quite some time, so as not to cause irritation or infection. So, in conclusion, I'm just so glad that I was able to be treated for my condition and I'm really happy to be back and doing what I love. Never stop advocating for yourself.