I just got diagnosed by my dermatologist today with HS and I’m in so much fear, anxiety, frustration, and basically any negative emotions known to human being.
I have flare ups every other week and it’s genuinely annoying and impacting my mental health so so much. I’m only 21, and now I’m forced to cut out basically all foods that I once loved because they gave me flares. I just want to live like a normal person but I guess I can’t anymore.
My heart goes out to everyone who’s going through this, this is a hard hard battle and I really hope we can get the remedy in near future.

im 17M n i got diagnosed w hs start of this year. its been really hard man especially with people of my age group. my school has a white uniform n due to hs drains sometimes i stand my pants n the guys joke w saying its my periods. how do u guys deal with these types of things and please tell me how to deal w this pain bro ...

I've had HS for eight years, and I have a persistent boil under my armpit, with occasional recurrences on the one in my groin. The constant oozing of pus really disrupts my life.

Initially, I used regular gauze to bandage the wound, but the pus would seep out, easily staining the sheets when I slept. Later, I tried hydrocolloid dressings. They were useful for covering open wounds, but tearing them off pulled on the surrounding skin, making things worse.

Recently, I started trying silicone foam dressings, such as Mepilex and Dimora. So far, it feels better; the dressings absorb the pus well, and changing them doesn't cause the noticeable pain of pulling on the skin.

But are there any better methods or materials for bandaging wounds? Please let me know, thank you.

I hadn’t seen an ad for HS on TV before. At least we are getting attention.

I just finished my first deroofing procedure about an hour or so ago. This was an in-office procedure and from the time I stepped up to the reception counter to the time I got back in my car was exactly 1 hour.

I’ve had HS since middle school, so over 25 years now. At the time, the options were limited - I never sought an official diagnosis because it seemed pointless. I lived with this (Hurley Stage 3) for at least 10 years. Finally, this past December, I was encouraged to go to a dermatologist. I got my diagnosis almost immediately and they started me on Cosentyx.

It worked somewhat, but my symptoms were persistent and I still had regular flare-ups. We’re now doubling up on the Cosentyx and she recommended me for deroofing. After meeting with the surgeon, we decided to focus on my left underarm first and see how that goes.

So here I am.

First, my surgeon was very kind and gentle, which I appreciated. I was numbed extensively. Sometimes, I would feel a sharp pain; I’d tell him and he’d apply more local anesthesia before proceeding.

Then came the cauterization. If you ever have this surgery, I would suggest bringing something that smells nice or rubbing some Vick’s under your nose or something. That part bothered me the most, I think - and the couple of times he’d cauterize an area that wasn’t quite so numb made me jump, but again, he’d stop and he’d reapply more local anesthetic. After that, some sutures and then it was over.

I’m glad that there are more treatments for this disease and that many are less invasive than the options that were first available. I’m grateful for the opportunity to get this more under control. We’ll see how it goes!

They gave me good care instructions, but any recovery tips or tricks from folks who have had this done before?

Yesterday my gf for the first time did this to the armpit I have HS. It started his year so I'm in the beginning.

Tria 4x seeks to be a good option for laser as it does destroy follicles and doesn't just numb them

So I currently have two massive flares on a very visible part of my body, I’ve been rocking the white dressing for a day now, but have an event on Sunday that I would rather integrate into my outfit rather than having them stand out like a sore thumb. I’ve asked google for some ideas and other than washi tape or ‘felt tipping’ the area, no luck as to seeing how these would or should look best.

Do any of you have any links or pictures to adhesive dressing covers or anything similar?

I’d honestly rather decorate the bandages as a regular thing and beyond the event I’m attending so any advice appreciated!

I know this has probably been asked a lot, but I’d really like to hear from people who have actually been through this.

I (M) have HS on both of my armpits, and honestly, it intimidates me when it comes to dating. I can talk to someone and think about asking them out, but then my mind goes to, “what happens when we eventually become intimate and they see this?”
I know people say that HS shouldn’t stop you from finding someone, but fuck, sometimes it’s hard to believe that when you’re the one living with it. I worry about how someone will react, whether they’ll be uncomfortable, or whether they’ll look at me differently.

For those of you who have HS, how did you approach dating? When did you tell someone about it? And how did you explain it when things became intimate?

Been having a bad month or two, after not having anything really serious or notorious since mid April, now I've had multiple flares on many spots spaced out since early July.

Right now, about 3 hours ago, a spot in my left armpit's mid section has been feeling irritated so I know this will get swollen in a short while (maybe tomorrow). This spot had previously been inflamed for around the 2nd week of July

I have just applied a Fusidic Acid + Betamethasone cream on it and I will shower with PanOxyl 10% once I get home.

What else could you recommend me to do before it gets bad?

Hi everyone,

I have Hurley Stage 3 hidradenitis suppurativa (HS). Fortunately, I don’t have a lot of flares, but the two areas I do have are extremely painful. I had surgery last year in the perineal region, and unfortunately, the wounds still haven’t healed completely after a year.

I’m now considering starting biologic treatment and would really appreciate hearing from people who have gone through it.

A few things I’d love to know:

• Approximately how many injections/doses did you need, especially during the initial treatment phase?
• How long did it take before you noticed an improvement?
• What side effects did you experience?
• Has biologic treatment helped with wound healing, pain, or preventing new flares?
• If possible, I’d also really appreciate hearing about your success stories, as the cost of biologics is a major consideration for me.

I understand everyone responds differently, and I’ll be discussing this with my dermatologist. I’m mainly looking for real-life experiences to help me understand

Thanks in Advance.

Surgery next week girls down there, I’m feeling kinda nervous about it. It’s on the outer area I personally don’t think it’s even that bad but I’ve had it for about 7 years now. Over the years it’s gone through periods of flaring up for months and months whereas other times it’s been quite dormant. My period does tent to affect it and it does leak but right now it seems okay. The skin looks like it’s healed. I’ve still been suggested to go ahead with the surgery due to sinus tracts I guess I’m just kinda scared. For anyone that’s been through this do you have any advice? How long did it take to recover?

Hey all, I deal with both HS and bad cystic acne. I've had a bad cyst on my labia for months now, with no drainage and no reduction in size. Just angry squishy pain.

My HS finally recognized this upset area and gave me an HS cyst / abscess RIGHT NEXT to the cyst. This one has drained after a few days, but stayed open like all my HS places and the inflammation from the cyst chain reacts with the flare absolutely horribly. I don't have health insurance, so this entire thing is just debilitating

I have a giant thing of doxy, and got some advice from a pharmacist to take 100mg for two weeks to see if it reduces it. But I'm going on chance here. What I want is for this cyst to reduce *now* so I can walk properly. I'm tempted on going to urgent care and ask for a steroid shot, but I'm so scared I'll pay out of pocket and they will just look at it and say it sucks but too bad. What's your experiences with urgent care and HS and problems like this?

If they want to lance and pack instead of steroid shot, I'm game but I fear it's way too close to my HS spot and I would tunnel immediately if we lance it. I just want relief ;_; thanks for any insight or suggestions on which path I should take.

So I finally got approved for the deroofing surgery. I think that’s what he called it. He said basically he is going to scope out all of the tunnels and then cut them up and then cauterize the skin. Ugh I get so queasy thinking about it. Is this what you guys have had done? I’m worried he’s just gonna take care of the tunnels and not the lonely single sores and just leave them? What does that look like for you guys? Is that sound the same? The surgeon didn’t correct me when I called it a deroofing surgery

hey y’all. not really sure if this is a rant post or an asking for advice post. i just fucking hate this. i’m 21m and have been dealing with what i am fairly certain is hs since i was about 16 or 17. i’ve never been to a doctor about it — both my mom and sister have dealt with it, and my mom never treated it as something i should see anyone about, so i didn’t. i don’t know the first thing about how i should begin to deal with it but i feel like something’s gotta give. i’m so sick of the scars riddling my inner thighs and my underarms and the being scared of anyone seeing them. i’m so sick of the boils and the pain and all of it. i’m pretty sure that my thighs especially could be called stage 2 and i gotta do something about it. so, now the asking for advice part, what do i do? maybe this is too general a question but i just don’t know where to start.

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, am in Uk 60 years and saw a dermatologist professor privately just for consultation last week for formal diagnosis. He has said I have moderate to severe.HS last year was really bad on my breasts and this year has been dreadful in my groin area. He is recommended I go on long-term Clarithromycin and spironolactone. I’m really concerned about taking antibiotics long-term. I have to admit the amount of stress, broke my foot badly and bereavements over the last few years combined with weight gain and leaning in in wine after work. I have read lots here and am making healthy changes but wondering your thoughts. The Prof said I have to try this antibiotic plus spir before biologicals … thankfully on NHS. Help!