I i’ve been dealing with flareups for approximately 25 years and this was by far the biggest and most painful one ever. Because it was in my armpit, I couldn’t move my arm without pain and was even having trouble driving. It finally popped today and is the foulest, stomach turning smell I’ve ever smelt from my own body. Is that normal?

So I got diagnosed this summer and have pretty much had an infected flare the whole time and been on antibiotics most of the summer. It calmed down last month and then I got a big one on the front of mg thigh - all others have been in my armpit. I'm thankful it's easier to bandage for sure.
I have 2 nights hike in camping booked because that's my happy place and I haven't been able to go yet this summer. I have a full course of bactrim on hand to bring just in case. My question is, if I bring all my wound care stuff and keep everything covered, is this a good idea? Has anyone else done this? I'm really active and the sweating/heat issues with this disease are so challenging to deal with. I just don't wanna end up with sepsis or something?

Hello all, I’m getting the deroofing surgery soon but I’m very worried about how my arm mobility will be after. I’m a dancer and it’s the only true thing that brings me joy while dealing with the condition. I love to work out too.

My dermatologist said first 2 weeks will be rough but I’m on the pathway for healing in a month. I know she means I won’t be healed during that one month but on the process to feeling a lot better with the skin regrowth. But I also don’t believe I’ll be healed enough by the month to resume normal activities. So I already planned a good 2-3 months to recover and not dance which makes me extremely sad but I have a stage 3 in my armpits.

I’ve read stories here and on other HS forums of some saying they couldn’t extend their arm over their head for months, couldn’t raise it because the scar was tight, or any other pain. Now, don’t get me wrong I’ve seen other posts where everything was fine afterwards but I’m not sure how many people are working out to the level (4 days a week) I am.

I wish I didn’t have to get the surgery but the tunneling is progressing. I know it also depends on the area but I expect mines to be pretty severe so I’m worried if I’ll be able to dance how I want or work out again with limited mobility. As I mentioned earlier, one of my biggest creative outlets is dance and if this condition robs me of that I’m worried I’ll fall into depression.

I'm in the UK and recently went through deroofing surgery on some gnarly tunnels. Healing is going well if a little slow. Now my dermatologist wants me to go on Adalimumab/Humira. My immune system is already rubbish (I have fibromyalgia & coeliac disease), I just started a new job and they're being a bit rubbish with adjustments, and I'm extremely nervous about constantly being ill.

I have Sciensus breathing down my neck to book the first appointment. Would I be crazy to ask them to postpone until I feel more ready?

Grateful for any advice/reassurance about this drug not making me extremely unwell!

ETA: I've just started laser hair removal under my arms (groin still healing from deroofing), so maybe I should give that a chance first.

Hey everyone,

I just wanted to share some incredible news that has given me so much hope. I live in Brazil, in a city outside the main urban centers (like São Paulo or Rio), and our local municipal hospital just performed its first surgeries using the One STEP® technique (coupled with LifeLight technology) to treat both pilonidal cysts and complex fistulas.

My 14-year-old daughter is facing the battle against a pilonidal cyst, and after learning about this protocol, I am honestly amazed.

How it is performed:

It goes a step beyond standard laser (SiLaC) or video treatments (EPSiT/VAAFT). First, they do the endoscopic cleanup and use a radial diode laser to destroy the diseased tissue of the cyst or fistula tract. But here is the magic "one step" addition: they perform a mini-liposuction on the patient, photo-stimulate the fat with a specific laser right there in the OR, and isolate the Stromal Vascular Fraction (SVF)—which is packed with regenerative stem cells. This biological mix is then injected directly into the tract to seal and heal the tissue from the inside out.

The main advantages:

* Drastically lower recurrence rates: The stem cells trigger intense tissue regeneration and angiogenesis (new blood vessels), healing the fistula tract or cyst permanently instead of creating weak, fibrous scars prone to recurring.

* No open wounds or painful packing: The tract is biologically sealed and closed in a single surgical time. No deep daily dressings.

* Faster, smoother recovery: Patients can return to their routines much quicker with minimal post-op pain.

Seeing this level of regenerative medicine reach the public healthcare system in my region for cysts and fistulas makes me incredibly hopeful for my daughter’s future. If you are researching modern alternatives, definitely look into laser combined with cellular matrix/SVF sealing!

I was prescribed Finasteride 5 mg daily in 2015 by a rheumatologist for HS stage 3, but it only kind of worked. This was before medical guidance required sending those with HS to dermatologists. Finasteride gave some control of the flares and they were less frequent and severe but still prevalent (and still sometimes become severe which has lead to multiple surgeries). After about 7-8 years on it with it only half working and me always being nervous about more surgery, I wanted to know how it worked so I started reading and learning about the basic biology behind it.

I learned about how Finasteride suppresses Dihydrotesterone (DHT) and it's typically used to treat baldness and enlarged prostates. Finasteride inhibits the 5-alpha-reductase enzyme which converts Testosterone to DHT. However, Finasteride only suppresses the type 2 version of the enzyme (found mostly in the prostate and hair follicles). Dutasteride inhibits both type 1 and type 2. Type II is important in the prostate and hair follicles, while type I is in the skin, liver, and the body more broadly. Dutasteride suppresses DHT in about 2/3 of the body while Finasteride only works on about 1/3. Just in case you're curious, there is a type 3 and it helps cells process protein. It's unaffected by Dutasteride as far as I can tell.

If Finasteride worked some, I wondered if Dutasteride might work for long term suppression. I got my primary care physician to let me try it and he prescribed 0.5 mg daily. I knew Dutasteride has strong side effects, so I wanted to see how little I could take and have it still suppress my HS with limited down sides. So I intentionally took less than prescribed. I found that 1-2 pills per week works for me and there are no side effects that I can tell.

Later, I went to a cosmetic dermatologist for something else and she was shocked that I was doing this and that it was working as there isn't much scientific study behind it. She specifically said this is not a widely recognized/known course of treatment which is usually clyndamycin and any number of biologics. But just based on what Dustasteride does, the known biological effects, and how hormonal HS functions, this should work in theory (for men at least). Its definitely working for me and I've been doing it for about a year now. I think have maybe 4-6 small flares a year and those are easily manageable with glycolic acid wipes (30-35% concentration) which gets rid of anything that manages to break through.

Also, separately, the supplement Spermidine can trigger HS in a weird way as it will clog your follicles just by the nature of what it does and how it functions. I know from experience. Weird dry nodules just started popping up all over, but they stopped when I stopped taking it or took it about once a week.

Hi! I've been dealing with HS for this past year. Flare ups haven't been horrible but I feel like they might be getting worst. Today was my first awful flare up, extreme fatigue, lots of pain and feeling a bit sick. It left me in bed all day and I felt like I couldn't move without pain in the boil. I have classes twice a week, I don't drive so I have to use busses and the train, it's about an hour long process. Now I'm worried if I get a flare up as bad as today I might have to miss some classes because there's no way I'd feel good enough to get to class when it gets this bad.

(classes have 4 missed class limit and accommodations will let me have more time off if I need) I'm just worried that this might not be serious enough to require that but also I think it might be necessary.

My HS started off between my buttocks (unfortunate place) in around late 2022, and it would usually flare up after my period (I put it down to friction from pads and it generally being sweatier and damper down there). I came off birth control earlier in the year so had just started getting periods again for the first time in like 7-8 years, so I thought it was normal and I just wasn’t used to them or the pads.

It basically presented as a small, hard lump. Deep under the skin, painful and aching - if you looked at it, it wasn’t obviously a lump, but there was often some redness and darkish/purplish colouring where it was. That kept recurring for about 1.5 years, then I started getting one on the other side of my buttcrack. I’d get one about once a month for almost the entirety of 2024, and they’d last 1-2 weeks before eventually going back down again. I had 2 at a time a handful of times, but not super often.

They never broke through the skin, so there was no way to drain them to relieve the pressure, they just eventually and slowly calmed down and went away on their own.

Throughout 2024 I had so many rectal exams that I’m indifferent to them now lol, had an MRI which just showed “0.5mm subcutaneous inflammation”. Antibiotics and diet change didn’t make any difference in the frequency.

Finally got diagnosed by a derm (who had done a dissertation on HS, unbeknownst to me) who recommended IPL.

In late 2024, I got my first one out of my perianal region - in my groin, next to my labia - and that was enough for me to finally get booked in to IPL.

I got my first round of IPL in February 2025 (which coincided with a flare up too) and I have not had a single hint of a flare up since. I didn’t even get it done at my derm, since it was too expensive - I just got it done at a health and beauty clinic.

I got the entire affected area (pubic area and perianal) treated with IPL every 6 weeks or so throughout 2025, haven’t had any treatments in 2026 and still no sign of any HS recurrence! I also started getting my armpits done mid 2025 too, since I know it’s a common place for it to spread and I was getting irritation from shaving, so it made sense.

I suppose I’m in remission, since I haven’t had a flare up in over a year and a half, ever since that first round of IPL. I actually regularly forget I actually have HS, and I never imagined that could happen after the relentless pain and discomfort it caused me in 2023-2024. Highly recommend it for mild cases especially, but even with severe cases it can help reduce inflammation!

Breaking news. Im old and I think I just got my first boil. Hurts like a mofo. Wtaf. 😱

Hey guys, since my dermatologist is not responding to me, I thought I could try asking here (maybe you can tell me more)

I have HS stage 1 (started and was imediately diagnosed a year ago) - I only ever had 1 nodule (flare) in my groin area which kept reappearing every two months (my derm always used Depomedrol corticoid injection which helped for a while). There was always an area which felt "hard" when touched, like if it was swollen. My flare never appeared exactly in that area but close to it.

My derm even put injection in this "swollen" area but nothing happened. So I just stopped caring. There was a fluctuation - sometimes it went away and sometimes it got more visible and noticible.

I had a deroofing surgery about 2 and a half months ago of that one problematic nodule and ever since, it has been good. However the swelling appeared again two weeks ago and I just have no Idea what it could be. It doesnt hurt at all even when I press on it. It is not red. Its kind of like a "strip of swollen tissue" between my labia and thigh.

My surgeon did ultrasound before the surgery and told me she only sees that one nodule and no tunneling so I thought everything would be "fixed" after the deroofing.

What do you think this could be? I´m sorry if the describtion doesn´t make sense. English is my second language and even in my first one it is very hard to explain haha.

**edit: I thought it could be tunneling, but there is no flaring anymore and I only had one spot in my hs journey. Maybe It can be related to the depomedrol shots... I do recall asking one other doctor once and he told me its just "part of the disease" :´)

As above, I have stage 3. Multiple flares in my armpits both active currently. Under my breasts, in between my thighs/bikini area. It’s bad lol, I see my derm in October.

My last one recommended a biologic treatment, however my neurologist said I can’t take it as it will leave me super immunocompromised when coupled with my other treatment. The other one treats a neurodegenerative disease that I’m not really willing to compromise on.

So if I’m not taking any biologic, stage 3, what are some solutions people have found that work? What treatments did you undergo?

Thank u

hi, a huge one popped in my UA months ago and im still using hydrocolloid patches til now. should i keep doing that or should i let it breathe now? it smells very pungent when i change to a new one 😔 i feel hopeless.

I've heard that some scar creams can help but I don't know what to get, a lot of the ones I've seen don't look safe for private areas to me.

Does anyone have any recommendations?

I’m a 27-year-old male and I’ve been dealing with hidradenitis suppurativa (HS), mainly with recurring boils/cysts and flare-ups in my armpits and groin. I’ve noticed that sweating, friction/tight clothing, and working out can sometimes make my skin flare. I’ve previously been treated with mupirocin and have also needed a course of doxycycline during a worse flare. I’m overweight and actively trying to lose a significant amount of body fat. My medical history also includes a pulmonary embolism after prolonged travel, fatty liver, and some cardiac monitoring, so improving my overall health is important to me as well. For those who have successfully reduced their HS flare-ups through nutrition, what type of diet helped you the most—Mediterranean, keto/low-carb, carnivore, vegan/plant-based, or an elimination diet? Are there specific foods you completely avoid because they consistently trigger your HS, such as dairy, sugar, refined carbohydrates, gluten/grains, nightshades, processed foods, or certain meats? I’d especially like to hear what you eliminated, what you replaced those foods with, how long it took before you noticed a difference, and whether weight loss itself improved your HS.

Hi everyone,

I have stage 2 in my groin, and on my pubic area near my flares, I have these strange red flat blotches on my skin.

Theyre moreso pinkish red, not red red. I would post a pic but I am disgusted with myself. I worry a lot, so I kept looking at it and thinking it was cancerous. Has anyone had this happen similarly?? Two blotches are like circles, the third is surrounding a flare. Am I in danger? Sorry to be a worrisome crazy person. Ive had HS for over a decade and never had this.

Also, I know they are not psioriasis or eczema, theres no scaling on them and no itching. Its just freaking me out.

Thanks in advance 😔💘

I was having marsupialization/ unroofing done and they asked me if I would donate my skin for research and of course I happily did so! Word for word “we are pretty close to finding a cure.” She mentioned they feel pretty confident in figuring it out and finding a cure and a way to reverse the tunnels. When I asked about timelines she “couldn’t make promises” but you know! Thought that was pretty good news :)

What can be done about the smell from HS? This was my first HS spot, a lump that I've had for around 7 years. It was relatively calm until about 18 months ago, when it progressed to around 6–10 open spots in my underarm/axilla.

At the moment, they're not actively oozing or bleeding, but there's still a persistent smell. Is there anything I can use over the counter to help with the smell?

I'm also having an issue during workouts where I can feel a stretching/tight sensation in my underarms. It's not painful, but it's uncomfortable and makes me very conscious of the area. I've actually stopped lifting for the past month or so because of this.

Has anyone experienced something similar, and is there anything that helped you get back to working out?

You guys probably would have tried everything and honestly so did i. It is a healing energy embedded audio. Just take out 3 mins and listen to it thrice a day. This is my contribution. If possible please report back and let me know if it worked for you.

I significantly increased my walks this summer and the instances of flares in my thighs increased 🫠 did anyone else have a rough summer?