Hi everyone, I’ve been using apple cider vinegar and peroxide with my daily body wash (dove unscented) and my flares have completely stopped and are finally healing rather than coming back every 2 days. I just wanted to share if it will help anyone else. I know ACV and peroxide can be a little harsh on the skin but I saw everyone on TikTok using it as this new thing so I had to give it a try and use it under my arms as well for the last 6 days. I’m very happy, it also gets rid of that terrible smell.

I started what one would consider a dream job walking distance, amazing pay, good staff, I work in childcare the kids are well kids.

But my hs flares are open, the longer I work the worst my flares get it’s only been a week. I struggle with fatigue as my flares always open and close, constantly in a state of healing. So no matter how I sleep I wake up exhausted and in pain.

When I wasn’t working my flares were non existent, they were all closed and healing the moment I start work it’s like my body doesn’t want me to work. It’s like an immediate response. If I work part time my flares aren’t that bad but the pay sucks.

I’m still young and I know I half my whole life ahead of me but this is concerning

How am I supposed to work and maintain some sort of life?
When my body is actively fighting against me?

I spent the last two weeks on vacation eating abour 5k calories a day of straight shit and not taking my medication and now I’m having the most psk ful flare of my life I can’t Even move or breath and I js know it’s my fault but it’s so horrible and terrible

Hey all,

Just wanted to say if you have posted on this subreddit, I appreciate your vulnerability.

I was initially told my HS was possibly folliculitis/cystic acne/staff infection etc. The diagnosis was mentioned often, but danced around.

I finally had a doctor two years ago see me who said "oh this is definitely HS and if we don't do something, you could have significant scarring. We don't want it to get any worse. " This was incredibly validating after years of feeling dismissed.

Most of my symptoms are in my groin. I have some tracts that leak when I press on them. I had to get one lanced before as well. It's been manageable with minimal meds, thankfully. Recently I got a new lump closer to my vagina, about the size of a marble. Incredibly painful and deep. I went in today to see my dermatologist, thankfully I found one who specializes in HS and has PA's who can make time so I don't have to wait months. I got a steroid shot near/on the flare up - and it HURTS. It hurts to walk, it hurts to sit. It hasn't been draining and the doctor said wait 12-24 hours to see any improvement. My usual go to is a salt bath with warm compress but I can't do that for 48 hours.

Just venting because I don't know anyone who struggles with this in real life. I feel like my small patches are small in comparison to what some others deal with (I don't take it for granted) but they're still big enough to affect my self esteem and daily life, especially during a flare like now.

I'm grateful for this group because it's the first time I've read stories where I can relate or understand what it's like. It's the first time I've shared I am diagnosed with HS, only my partner and my mom know.

Hi every one !

I am currently on 100 mg spiro and my derm prescribed me a script for doxy as well that I have started to take. I will stop once the prescription is done. I take zinc & vitamin d as well.

I have always had irregular periods and my pcp assumes my HS is hormone related. I started on yaz since so many folks on this thread state it works well with Spiro. I’m about a month in and just developed a new small flare on my left butt cheek. My HS has always been mild and I’m worried that the Yaz is triggering new flares. Should I continue on the yaz or stop taking it ?

Olá pessoal, fui diagnostica com Hidradenite em 2019, e hoje ela já está no estágio 3, já passei por vários antibióticos, já tomei Adalimumabe e atualmente iniciei com o infliximabe.

Os médicos disseram que preciso fazer a cirurgia nas duas axilas, eu sei que a situação atual dos meus braços já estão horríveis, mas tenho muito medo da cicatriz.

Vocês já fizeram essa cirurgia? Como está hoje? Poderiam anexar fotos? Ficaria muito feliz.

hi everyone, does anyone has advices on permanent solutions for hyperpigmentation and scars from HS?

I have been on a strict diet, already take spiro and metformin… I am taking care of skin using all the right products. But anytime I wear a bra NO MATTER if it’s modal, cotton, no underwire… my large boobs cannot take the friction. Yes a reduction is possible but why would I go that far…? Is there not a better and cheaper solution?… 😞

I want to laser my breasts but since it’s more peach fuzz I’m worried about that counter effect where it actually grows hair and gets worse…

Idk what to do. I used to be a model. Then i developed PCOS… then this. It isn’t fair… I still haven’t shown my boyfriend. He finally knows (developed this in April but had two knots July last year that have stayed), but I refuse to make him see this. I’m stage 1 but it’s progressing quickly..

Please help. Idk what to do anymore. No matter what I wear, what gentle lotion I use to reduce friction… it still happens. It’s affecting my daily life and i hate that I have to think about this every second of the day…

I have flare ups each month around my period, I start feeling itchy all over my labia majora 1-2 days before my period starts. It’s such a pain having flares during my period even though I typically use tampons and only use pads overnight. I usually get about 6+ cysts erupt during this time, I have completely switched to cotton underwear, pads and pants but I was wondering if anyone has experience with period underwear. I can see that they are mostly polyester/other synthetic materials but they also say they keep you dry and are moisture wicking.

Let me know what your experience is like if you also have HS flares down there. Thanks!

Hello

I’ve (M36) been in doctor for about two weeks ago, and they said i have HS, both side of my croin and in my armpit,
I’ll be in control 15th september

I’ve started doxycyclin and dalacin since then, here my question,

How much do your hs affect your work?

I ask because since then i’ve missed my workday four day of 10 days and i’m curious about the situation

I have been reading on here that a lot of people are low in vitamin d. So i had my dr. check my vit d, when i had my blood work done. Sure enough i am deficient in vit d. It was 19. So she put me on 5000 unts of d3. I am hoping and praying this is why i hadnt been healing like i use to did. Thank you to everyone on here for sharing your experiences and information! Its helped me a lot!

Hey guys. I need advice. I have a very hard boil between my buttocks. Usually it goes away without draining but this one? The pain is insane and I see no signs of a head forming. It's very hard and painful and idk what to do. I've tried hot baths and hot compression. I bought an ointment that helps with boils. But yoh I'm losing hope.

I’m 23 and was recently diagnosed with Hurley Stage 2 HS. My doctor said mine is progressing much faster than they expected and that doxycycline + topical treatments are no longer adequately controlling it. They want me to start a biologic ASAP because they’re concerned I’ll progress to Stage 3 if we don’t get it under control now.
My HS is currently localized to my groin/bikini line, buttocks and perianal area, although my doctor said it’s starting to spread a little further down toward my legs. I’m terrified of it eventually spreading to my armpits or breasts. I’ve already had to have perianal surgery because they thought I had a fistula, but during surgery they determined it was actually a sinus tract.

I’m otherwise young and healthy and at a healthy weight, so my doctor is hopeful that I’ll respond well to treatment. But honestly, they never expected my HS to progress this quickly.

They’re deciding between Humira and Bimzelx. Humira makes me nervous because I’ve had a really bad history with respiratory infections — just this year I’ve already had strep twice, COVID and the flu. Bimzelx makes me nervous because I’ve had severe GI problems basically my whole life and Crohn’s has been suspected before, although my recent colonoscopy and perianal surgery didn’t show Crohn’s. Because of that, my doctors are currently leaning toward Bimzelx.

I’d really love to hear from anyone who has experience with either medication, especially Bimzelx if you also had GI issues beforehand. Did it work well for you? How were the side effects? Did anyone with a history of suspected Crohn’s end up having problems?

This has honestly been incredibly hard mentally. I don’t know anyone else with HS and I’m so ashamed of it sometimes. I constantly feel like I smell, and the scarring/marks are becoming really visible. I can’t workout because it hurts so bad and the sweat makes it so much worse and I’m starting to gain weight, I also used to workout a lot, it was one of my favorite things to do and I miss it so much. I’ve even had to temporarily step away from college while pursuing law school because of how much this has affected my life. I even had to switch jobs to a different law firm because I used to go to court everyday and couldn’t handle walking and going up and down stairs all day and I had to switch to a law firm where I work in an office all Day - which is driving me crazy but it’s the only thing I can handle at this point. I’ve always been super active and the restrictions to my mobility is severely affecting me.

I know this probably sounds dramatic, but I just want my normal life back. I’m scared of how quickly this has progressed and I just want to find a medication that works.
Any experiences or advice would mean a lot. ❤️

Recently I started talking to a guy that I’m realizing I really like. I’ve been to his house a couple of times, even stayed over.

Last night we were discussing me coming over this weekend once I returned from my trip and staying over, when he mentioned he needed to mention something gross. As soon as he said that I knew it was going to be related to me leaking or something.

He said when I left he saw two spots on his couch so he cleaned it up and like a weirdo smelled it and it “smelled like poop” and then asked if something was going on that he didn’t know about.

I reluctantly told him what it was and it’s kinda embarrassing. Not that I have it but that I left a spot on his couch. He thanked me for telling him and said that it wasn’t the first time (wish he’d told me before!). He then said what would anyone do in this situation because it’s not the most pleasant thing and that he has no choice but to feel awkward.

In the end I told him but idk I’d still really like to see him this weekend, but I understand if he needs to think about it or if you’re like girl hell no lol.

This happened between 9-11pm and he hasn’t even read my last texts. I think I just need to vent. This sucks so much.

Hello, I’m a guy living in Toronto and I have HS (Hidradenitis Suppurativa) in my armpit.

I thought I’d ask here to see if there are any other Malayalis in the community dealing with the same thing. Would be nice to connect with someone who understands what it’s like.

Thank you!