First of all, I'm shocked I was able to find someone on the first try to drain it. It must have been that bad.

I've been suffering for days, knowing I wouldn't get help if I needed it, because I've been turned away so many times.

And then I found someone to help. And oh my god, the panic. I had a pilonidal cyst drained 6 years ago and I still remember it as the worst pain I've ever experienced. Turns out the hype lives up - the flare on my thigh was just as painful. Bawled like a baby and was shaking like crazy.

I'm so tired. I'm drained (pun intended). I'm defeated. You won today, HS.

I do want to take a moment to thank the nurse who held my hand the entire time, reminded me to breathe, and tried to distract me from what was happening. Best nurse I've ever met, you the real MVP.

Am I rambling? Is there a point to this post? I don't know, I'm too tired 🙃

I’m so sorry this is gonna sound gross, but I just had a massive cyst between my breasts burst 💥 (I was in remission for a while) and the smell was awful 😣 it smelled like rotting cabbage 🥬. I don’t even eat cabbage! Also, it was so heavy that the smell lingered in my room for a bit until I sprayed febreeze 😅. I will admit the color was kinda pretty 😅😅 I almost took a picture but then remembered what it was and didn’t do it.

I currently disinfected it and used some Manuka honey 🍯 ointment 🧴. It’ll take a few days to drain but I’m so happy it opened up because the pain was unbearable 😭.

Thank you for reading. Apologies if I grossed you out.

I never thought HS would land me in the hospital.

It started as a pretty normal draining flare on the side of my breast. But it kept opening more and more each day until it was completely out of control. Within just 3 days of starting to drain, it was a 5x5 cm wound (about 2x2 inches, somewhere between a golf ball and a tennis ball).

It was bad enough that I was referred to the breast cancer team for a biopsy to rule out malignancy. I'm still waiting on the results but the team feels pretty confident it’s “just HS”.

My derm says it's time for a biologic, and I start Cosentyx this week. Reading the side effects list has me nervous.

For those who've been on it:
- How long before you noticed a difference?
- What side effects did you actually get, and did they fade?
- Anything you wish you'd known before your first dose?

This community has helped me feel a lot less alone with HS, and I really need that right now. Thank you :,)

Ive had HS since I was 10-11, got diagnosed when I was about 13, and now I’m currently 19.

No one in my entire state takes my insurance and I’m currently on the edge of homelessness, so paying out of pocket or much at all on my skin really isn’t an option. But recently due to stress my HS has flared up worse than it’s ever been. It hurts so much and the scarring is so fucking embarrassing I want to bash my head into a wall.

I’ve obviously been through the obligatory “shame yourself for “poor” hygiene and shower multiple times a day cause that’s gotta be it then shamefully drown yourself in Neosporin for a week when that clearly doesn’t work” but even that hasn’t given me much pain relief or anything. I know the one dermatologist I have seen in my life says it’s not good for the HS, but honestly neosporin has been the only ever thing that helped that wasn’t prescribed by my dermatologist.

Idk, fuck HS it’s got me really like, I can’t dat, I can’t put effort into my health or body when it’s like well I’m always going to have tunnels bigger than the ones under fucking Paris or whatever. And like fuck Medicare this shit sucks.

Hi everyone
For those who have had HS wide excision and reconstruction in the perianal area, how long did it take after surgery that you started walking normally

So I have the following items that i use randomly rn, can you guys please tell me which do you use when?

- Desitin rash cream
- Hydrocolloid tape
- Hibiclens
- Witch hazel
- Epsum salt
- Sitz bath
- Head n shoulder shampoo

I have severe HS since a few years. Some wounds are dried and some actively weep and hurt all fkn day.

People often blame their hair or look for random cleanses, but usually, it comes down to harsh product runoff, cross-contamination, and mechanical friction from how we shower and dry ourselves

A dermatologist gave me this foundation years ago, and over time, I perfected a routine to keep bacterial buildup and irritation at zero

Here is my step-by-step protocol:

1. The Arsenal

Specific intimate hygiene cleansers (pH balanced/foam).

Pervinox/Antiseptic body wash (for active flares)

White laundry soap (Jabón blanco)

Soft exfoliator (like a green Korean towel, used strictly on non-flare days/areas)

Gentle dermatological shampoo (remember: your scalp is skin too, and God forbid a flare pops up up there! A dermatologist warned me that HS can show up there as well)

1. Hair First (Head Down!)

Step in, wet everything, and take a second to relax

Flip your hair forward so products never run down your back, chest, or buttocks

Apply shampoo strictly to the roots, wash, and rinse forward

Apply conditioner/treatment to the ends, then tie your hair into a top knot right at the crown of your head while it works. Keep it off your skin!

1. Body Hygiene (No reusable sponges!)

Ditch regular bath sponges—they are bacterial breeding grounds. Use your clean hands

Intimate area: Gentle foam cleanser, quick wash, and rinse

Active flares: Apply antiseptic wash (Pervinox) and let it sit for 60 seconds before rinsing

Rest of the body: Gentle cream or gel cleanser

Pro-tip: While your body and hair are "marinating," use white laundry soap to hand-wash your underwear right there in the shower!

1. The Strategic Rinse

Rinse your body first

Rinse your hair last (still leaning forward)

1. Towel Rules & The Dabbing Rule

Hair: Any hair towel is fine and can be reused a few times

Body: 100% clean body towel every single time. NEVER leave it in the humid bathroom. Dry it in direct sunlight or wash it immediately (adding white vinegar to the laundry helps kill lingering bacteria)

DRYING TECHNIQUE: NEVER RUB OR SCRUB. Gently pat/press the towel against your skin to absorb moisture.

Air dry: Whenever possible, let your skin fully air-dry before putting on any clothes. You can hang out in your towel or a loose bathrobe for a few minutes, but strictly avoid putting on fitted or tight clothes over damp skin

It sounds intense to anyone outside the community, but we simply cannot wash or dry ourselves like people without HS. Hope this helps anyone struggling with mystery flares caused by daily habits!

What about you? What hygiene habits or tricks have made a real difference for your skin, or how would you improve this routine? Let's share tips below!

I am so frustrated.

I know that laser was never a fix-all and magic cure, but I am so frustrated and worried after my first new flare site popped up this past week after about a year and a half since my last new site. I tried to convince myself it was a bad ingrown, but theres no denying it at this point. I know the whole HS shtick is that its incurable but I'm scared and frustrated. I'm 25, don't smoke, exercise, eat pretty healthy, and don't know what else I can do to help things at this point. I'm like an early stage 2 - I previously only had 2 tract sites in the groin and one in my armpit that THANKFULLY is dormant 90% of the time and has never come to a head. I've been to the dermatologist, bought the Hibicleanse, bought the sterilizing wipes, paid $1600 for six laser sessions - I'm just bitter and worried about possible progression. Has anyone else undergone laser and still proceeded to get new sites?

Hi everyone! I’m in Italy, around 30 weeks pregnant, and I’d love to hear how others managed their HS during pregnancy, particularly if you weren’t taking a biologic.

My HS is actually much better now than it was before pregnancy. It initially calmed down, then worsened after I was prescribed progesterone. It has since improved again, although unfortunately it’s still not fully controlled.

I’ve been taking prednisone, initially 50 mg daily and now down to 25 mg. Since reducing it, some existing tunnels have become inflamed again, and I’ve noticed what seems to be a new tunnel in one armpit. The symptoms are manageable, but I understand that new tunnels could mean progression even when the pain isn’t severe.

My dermatology team is recommending Humira to help me come off prednisone. I don’t want to stay on prednisone long term, but I’d really prefer to explore all reasonable alternatives before starting a biologic.

My biggest concern is starting it during the third trimester. The Italian prescribing information says that adalimumab may affect the newborn’s normal immune response and should only be used during pregnancy if clearly needed. I understand this doesn’t mean harm is inevitable, but the placental transfer and potential implications for my baby’s early vaccinations make me hesitant.

I’m also worried about infections, side effects, and the possibility of reduced effectiveness if I eventually stop and restart it. And I’d like to understand how the transition would work if I’m tapering prednisone before Humira has had enough time to help.

After pregnancy, I’m interested in discussing tirzepatide/Mounjaro because I also have insulin resistance and gestational diabetes. I know the evidence for HS is still preliminary, so I’m not assuming it would replace HS treatment.

For those who have been pregnant with HS:

How did your HS change throughout pregnancy and after delivery?

What treatments helped, particularly if you weren’t on a biologic?

Did anyone successfully taper off prednisone using another treatment?

Were local injections or procedures for individual tunnels an option?

If you started Humira during pregnancy, what helped you decide, and how were your baby’s vaccinations managed?

I’m not against biologics, but I don’t feel ready to start one at 30 weeks, putting my baby at risk is not an option.

I’m looking for experiences and questions to bring to my doctors, rather than instructions to change medication myself.

title and also has it gotten worse for anyone?

i noticed when the water from my hair gets on me i sometimes flare so now i cut my hair super short and it’s better for me.

and i wash my hair like 4-6 times a week so its not that

Hello, I just wanted to share the things that seem to be working best for me. Background - dealt with this since I was a preteen, officially diagnosed about 2 years ago. Tried anti inflammatory diet with mild results. Main flareups are under arms, upper thighs, and mound.
Now what works: magic molecule antimicrobial spray, panoxyl 10%, micro dosing Reta.

- I’ve been using Reta at 1-2 mg per week because I read that it can help with inflammation. I’ve lost about 10 lbs over 8 months (but that’s only about 10% of what I could lose as I’m overweight) but I’m not on it for weight loss - focusing on my HS. I saw a significant reduction in flareups around month 3.

- I’ve used Panoxyl since my diagnosis to wash but I’ve started applying it and letting it sit for about 5 minutes in problem areas twice per shower for the past 6 months or so.

- I’m also using Magic Molecules hypochlorous acid spray on all problem areas and I feel this is helping a lot. I’m using it in place of deodorant as I’m very sensitive to it and not putting deodorant on my under arms I believe is also helping me. I spray it before getting dressed and while getting ready for bed.
I would say this combination has my HS symptoms reduced by about 90-95%.

Obviously everyone is different, but I just wanted to share incase it might help anybody else.
Summary:
1-2 mg Reta per week, Panoxyl 10% applied as a “mask” in the shower 2x, Magic Molecules hypochlorous acid spray 2x a day.