edit: I made a group chat on telegram for any girls interested! pm me with your telegram username and I can add you, I can’t share the link through messages
hi, like the title states I’d love to make friends with other girls who have HS. it’s difficult not to have anyone to talk to who understands. feel free to comment or pm me
gross question sorry
but what do you do when you have a flare thats too close and you touch it when you wipe? do you cover it? how often do you change the covering? or do you use like hyphocholorous spray?
does anyone else have a folder with hundreds of pictures of your groin to track progression or am i insane
hi everyone, this has been on my mind and I’m wondering how you all feel about it. whenever I go to the dermatologist, I get the feeling that they are kind of disengaged when it comes to treating me because HS is unpredictable, varies by person, and it is chronic. at my last visit, the PA opened the door to the next patient and I heard her say “the results came back, it’s pre-cancerous.” it just made me think of how they have other patients with conditions they perceive as more critical, but probably better treatment options. I know that the best thing we can do for ourselves are identify our own triggers and work to reduce them, but what should we expect from our doctors? do we expect them to be following new HS research? I try my best, but I don’t understand it. should they be regularly referring us for ultrasounds to track disease progression? referring to clinical trials? how often should we consider deroofing, steroid injections, cryoinsufflation? when should they offer it? it makes me really sad to see stories here of people living with such awful pain and disease progression, and I can’t help but ask myself, how does it get to that point? I understand many people have anxiety around getting treated, and others may not have sufficient healthcare. but for those of us who do have dermatologists, what do you expect from them? I feel like I am carrying most of this load on my own, and they kind of throw whatever at me hoping it will keep me happy for long enough until I need something else. I am trying to figure out how to prevent progression as best as I can, and I don’t know that my dermatologist has the same goal. I’m considering advocating for a referral to an HS specialist in my area. just wondering what everyone’s experience has been with dermatologists and if we should be advocating for changes in care, and what those changes should be to help prevent progression of HS
just need somewhere to vent because none of my friends know i have HS, and i don’t want to talk to my mom about this. i was diagnosed in october 2025 but have been having boils in my groin for maybe 13 years now. at my last derm appointment the dr said he would send authorization to my insurance so i could get injections at my next appointment if needed. had a very painful flare last week, the next available appointment was today with the PA so i took it. they let me know they never sent the authorization but they would today. i had scheduled an appointment tomorrow with the dr just in case as well, so i’ll come back tomorrow to hopefully get the injections. i have 3 nodules right now (usually only have one, and in the last two months haven’t really had anything) and these are all recurring, so i am really upset. none of my previous ones had been recurring. i requested an ultrasound referral to check if the lesions have tracts or are tunneling so i can get deroofing done if they do. i was on a 2 week dose of doxycycline when first diagnosed, and they just prescribed me a month dose just to try. it didn’t work the first time, but i mean sure i guess. maybe a longer dose will help. i’m open to it. when i was first diagnosed deroofing, wide excision surgery, and biologics were my worst fear. i wanted to find a way to manage before ever resorting to any of that. i thought i had more time. i’m afraid that these recurring areas mean that i’m progressing faster than i had hoped. i’m worried. i’m trying to remain hopeful. i feel like i’ve accepted that this is my life and i just need to find a way to manage it so that it doesn’t progress. i just feel sad. i felt like the PA barely wanted to look at/touch my skin. i don’t think my HS is bad but that made me feel gross. i’m sure it wasn’t personal, but the way medical appointments go always make me feel foreign in my own body. i feel like my derms are kind of just trying whatever, and i dont feel like they have any investment in preventing progression since it is so unpredictable. tomorrow is my birthday and i was hoping to get the injections today so i wouldn’t have to have this reminder on my actual birthday, but it is what it is. i’m not even sure i should get the injection since it’s not painful and it’s a recurring spot so it may not even do much. it just really sucks how everything is so variable in this condition.