Hidradenitis suppurativa (HS) is one of those conditions that can make you feel like your skin is auditioning for a dramatic soap opera:
painful lumps, surprise drainage, “why does this spot hate me?” moments, and the kind of friction-related chaos that makes you side-eye
your favorite jeans. It’s chronic, it can flare and calm down in cycles, and it’s not a reflection of how clean you are or how hard you’re trying.
It’s an inflammatory skin diseaseand living with it takes real strategy, not just “use a different body wash and hope for the best.”
This guide breaks down what HS is, how it’s usually treated, andmost importantlyhow people actually live with it day to day: building routines,
reducing flare triggers, handling odor and drainage without panic, protecting mental health, and showing up to appointments like the informed,
organized main character you are.
HS, Explained Like a Real Person
HS (sometimes called acne inversa) typically shows up in areas where skin rubs togetherthink underarms, groin, inner thighs, buttocks,
under breasts, or along the waistband zone. It often starts with tender bumps under the skin that can enlarge, become abscesses, open up,
drain, heal, and then come back againsometimes in the same neighborhood like an uninvited neighbor who never moves out.
What’s actually happening?
HS involves inflammation around hair follicles and can lead to painful nodules, abscesses, and (in more advanced cases) tunnels under the skin
called sinus tracts. Over time, repeated inflammation can cause scarring and thickened skin. The “why” varies by persongenetics, immune system
activity, hormones, friction, sweat, and smoking/weight-related factors can all play a role. The key point: HS is not contagious, and it’s not caused
by “being dirty.”
Signs, Symptoms, and the Stuff No One Warns You About
HS doesn’t always look the same from one person to the next, and that’s part of why it can be misread early on. Common symptoms include:
- Painful, deep lumps that can last for weeks
- Recurrent abscesses that may drain fluid or pus
- Blackheads or “double-headed” blackheads in affected areas
- Odor (often from drainage, not from sweat)
- Scarring and thickened skin after repeated flares
- Skin tunnels (sinus tracts) in moderate-to-severe HS
How HS can affect daily life
HS isn’t only a skin problemit’s a logistics problem. Sitting can hurt. Walking can hurt. Showering can feel like you’re negotiating with
your own body. Clothes can irritate. You might cancel plans because a flare decided today was the day for full chaos. And because HS often
affects intimate areas, it can bring stigma, embarrassment, and isolationnone of which you deserve.
Getting Diagnosed and Understanding Severity
HS is typically diagnosed clinicallymeaning a clinician looks at the pattern (where lesions appear, how often they recur, and whether there’s
scarring or tunneling). If you’ve been treated repeatedly for “boils” or “infected hair follicles” and nothing really changed long-term,
it’s worth bringing up HS directly.
Hurley stages (a common staging system)
- Hurley Stage I: Isolated nodules/abscesses without scarring or tunnels
- Hurley Stage II: Recurrent lesions with scarring and limited tunneling; lesions may be separated by normal skin
- Hurley Stage III: Diffuse involvement with extensive tunnels and scarring across an area
Staging matters because it helps guide treatment choices and sets realistic expectations. It also helps you track progress: success might mean
fewer flares, less pain, faster healing, or less drainagenot necessarily “perfect skin forever.”
Treatment: Your HS Toolbox (Not a One-Magic-Cream Situation)
HS treatment is often a mix of medical therapy, lifestyle changes, and (sometimes) procedures. Many people need some trial and error to find
what works for their specific patternespecially because triggers and severity can vary.
Common medication options
- Topical therapies: Often topical antibiotics (like clindamycin) for milder disease or targeted areas
- Oral antibiotics: Used for inflammation control and secondary infection risk, particularly in moderate disease
- Hormonal approaches: Sometimes used when HS flares align with menstrual cycles or signs of hormone sensitivity
- Anti-inflammatory and pain strategies: May include anti-inflammatories, topical anesthetics, and clinician-guided pain plans
- Biologics: For moderate-to-severe HS when other treatments aren’t enough; these target immune pathways driving inflammation
Biologics: what to know (without the panic)
For years, adalimumab was the best-known FDA-approved biologic option for HS. More recently, secukinumab has also been approved for adults with
moderate-to-severe HS. Biologics can reduce inflammation and flare frequency for some people, but they require medical monitoring and are not a quick fix.
If your clinician suggests a biologic, ask what “success” looks like, how long to trial it, how side effects are monitored, and what the next step is
if the response is partial.
Procedures and surgery (sometimes the missing puzzle piece)
Procedures can be a big part of HS care, especially when there’s tunneling or repeated lesions in the same region.
Options can include:
- Intralesional steroid injections for a hot, angry lesion (when appropriate)
- Unroofing/deroofing to open and remove the “roof” of tunnels so they can heal from the inside out
- Laser hair removal in certain cases to reduce follicle-driven recurrence
- Wide excision for severe, scarred, tunnel-heavy disease in a region
A quick note about incision and drainage (I&D): it may temporarily relieve pressure, but it often doesn’t prevent recurrencebecause HS isn’t just a single
“pocket of infection.” Long-term planning tends to work better than repeated emergency fixes.
Daily HS Living: Practical Routines That Actually Help
1) Gentle cleansing (your skin is not a dirty dish)
Many dermatology recommendations emphasize gentle care: avoid harsh scrubbing, loofahs, and aggressive exfoliation on affected areas. Some people do well with
antimicrobial washes (like benzoyl peroxide or chlorhexidine) used carefully, building up slowly based on irritation tolerance.
The goal is to reduce irritation and bacterial load without triggering more inflammation.
2) Shaving and hair removal: proceed like it’s a delicate mission
Shaving can aggravate HS for some peopleespecially during flares. If hair removal matters to you, consider alternatives (like trimming) and talk with a dermatologist
about whether laser hair removal might be helpful in your pattern. If you shave, treat it like skin care, not a speed run.
3) Clothing: friction is the villain
HS and friction are basically sworn enemies. Many people find relief with:
- Loose, breathable fabrics (especially in heat and humidity)
- Seam-minimizing underwear or athletic wear that doesn’t dig into folds
- Moisture-wicking layers to reduce sweat pooling
- Strategic padding or soft dressings where skin rubs
If your HS areas are predictable, dress for tomorrow’s friction, not just today’s outfit.
4) Heat, sweat, and “why is summer like this?”
Heat and sweating can worsen HS for some people. Try micro-adjustments:
a small fan at your desk, breathable sleepwear, showering after heavy sweating, and choosing workouts that don’t trap sweat in friction zones.
If your life includes outdoor work or a hot commute, plan for it like an athlete: change of clothes, absorbent materials, and skin protection.
Wound Care, Drainage, and Odor: A Calm, Repeatable System
This is the part of HS that can feel the most disruptivebecause it shows up when it wants, and it doesn’t care about your schedule.
Having a system helps you stay in control even when your skin isn’t cooperating.
Build a simple “HS kit”
- Nonstick dressings or pads (to protect clothing and reduce friction)
- Medical tape or gentle adhesive options
- Saline or clinician-recommended cleansing supplies
- Extra underwear/socks (yes, sometimes the backup plan is the best plan)
- A small sealable bag for discreet disposal
Odor management without shame
Odor is a common HS complaint and it can be emotionally brutal. It’s often linked to drainage and trapped moisture, not “poor hygiene.”
Some people find that gentle cleansing routines, breathable dressings, and keeping areas dry can help.
If you’re experimenting with deodorants or topical products, patch-test and introduce changes slowlyHS skin can be reactive.
Lifestyle Factors and Triggers: What’s Worth Paying Attention To
Not everything is a trigger for everyone. But some factors show up often enough in clinical guidance and patient experience that they’re worth tracking.
Think “data collection,” not “self-blame.”
Commonly discussed flare influences
- Smoking: Associated with worse HS severity in many studies; quitting can be a meaningful lever
- Weight and friction: Weight itself isn’t “the cause,” but mechanical friction and inflammation can interact
- Hormones: Many people notice menstrual-cycle-related flares
- Stress and sleep: Stress can amplify inflammation and pain perception; poor sleep makes everything harder
- Heat/sweat: A frequent practical trigger
A realistic tracking approach
If you want to track triggers, keep it simple: note flares (date, location, pain 1–10), what was different that week (heat, stress, travel, hormonal timing),
and what helped. After a month or two, patterns may appear. If tracking makes you anxious, stopyour mental health is part of treatment too.
Mental Health, Relationships, and Work: The “Invisible” Part of HS
HS is associated with higher rates of anxiety and depression, and that makes sense. Chronic pain, unpredictable symptoms, body-image stress, and stigma can wear down anyone.
Getting support isn’t “extra”it’s part of a complete care plan.
Talking to partners (and yourself) with honesty
Many people fear being judged, especially because HS can involve intimate areas. A helpful script:
“This is a chronic inflammatory skin condition. It’s not contagious. Sometimes it flares and can be painful or messy. I’m managing it medically, and I’ll tell you what I need.”
The right people won’t treat your skin like it’s a moral test.
Work and school accommodations
HS can make standing, walking, sitting, and commuting difficult during flares. If you need accommodations, consider asking for:
flexible scheduling during severe flares, breathable uniforms if possible, breaks for dressing changes, or seating adjustments.
If you’re dealing with repeated absences, it may help to document flares and treatment visits.
Building a Flare Plan (So You’re Not Improvising in Pain)
A flare plan is a pre-decided set of steps you follow when symptoms ramp up. It reduces stress because you’re not making decisions while miserable.
Your plan might include:
- What cleansing routine you use during flares (gentle, consistent)
- How you protect skin from friction (dressings, clothing choices)
- What pain strategies are safe for you (per your clinician)
- When you contact your dermatologist vs. urgent care
- What photos/notes you gather for your next appointment
When to seek urgent medical care
If you have fever, rapidly spreading redness, severe swelling, signs of systemic illness, or pain that feels out of proportionseek urgent care.
HS can coexist with secondary infections, and it’s better to get checked than to “tough it out” and pay the price later.
Experiences of Living With HS (500+ Words of Real-World Perspective)
The experiences below are composite stories inspired by common HS themes people describe in clinics and patient communities. They’re not medical advice,
but they capture what day-to-day life can feel likeand the practical wins that make it more manageable.
1) “My bag has a flare kit now. Like a grown-up.”
One person described the turning point as the day they stopped hoping flares wouldn’t happen and started planning like a calm disaster-prep expert.
They kept a small pouch with nonstick dressings, a gentle tape option, wipes, and a backup pair of underwear. The first time a lesion started draining during a long meeting,
they didn’t spiralthey excused themselves, handled it, and came back without feeling like their entire day was ruined.
“It didn’t make HS disappear,” they said, “but it made me feel like I had my hands on the steering wheel again.”
2) “I thought I was doing something wrong. I wasn’t.”
Another person spent years scrubbing their underarms like they were trying to remove a stain from a carpet. The logic felt obvious: painful bumps must mean the skin is dirty.
But the scrubbing made everything angrier. When they finally learned HS is inflammatory (not a hygiene failure), their routine changed: gentler washing, less friction, and more patience.
That mindset shift didn’t just help their skinit softened the self-blame that had been glued to every flare.
3) “Dating with HS: the talk, but not the apology.”
One person described the awkward moment: they liked someone, things were getting closer, and their brain started forecasting rejection.
Instead of hiding, they used a simple explanation: “I have hidradenitis suppurativa. It’s not contagious. Sometimes I deal with painful flares and dressings.
I’m sharing this because I like you, not because I’m asking permission to exist.”
The result? Relief. Not every date became a relationship, but the ones worth keeping responded with basic kindnesswhich is the minimum standard, by the way.
4) “Work flares taught me to negotiate with my schedule.”
A person with a physically demanding job realized their worst flares weren’t randomthey clustered after long, sweaty shifts and days when tight clothing rubbed the same spots for hours.
They couldn’t change the whole job, but they changed the friction math: moisture-wicking layers, looser undergarments, and a post-shift routine that prioritized gentle cleansing and dressing changes.
They also started scheduling high-movement tasks earlier in the day when pain was lower, saving desk work for later. It didn’t eliminate HS, but it made flares less catastrophic.
5) “My appointment win was… being specific.”
One person felt dismissed for years because they described symptoms vaguely: “I get boils sometimes.” At a later visit, they arrived with notes:
flare frequency, photos (dated), pain scores, and a list of treatments tried. The conversation changed immediatelybecause the clinician could see a pattern, not just a complaint.
They left with a clearer plan, including follow-up timing and what would trigger an escalation in treatment. The takeaway wasn’t “you must prove your pain.”
It was: specificity helps the system help you.
The common thread in all these experiences is not perfectionit’s progress through systems. HS may be chronic, but your life doesn’t have to be on hold.
The goal is fewer flare surprises, faster recovery, better pain control, and a support network that treats you like a whole person.
Conclusion
Living with hidradenitis suppurativa is part medical care, part routine-building, and part emotional resilience. The most effective approach is usually a combination:
a clinician-guided treatment plan, skin-friendly daily habits, friction reduction, and mental health support. If your HS has been dismissed, misdiagnosed,
or treated like a personal failure, please hear this clearly: HS is a real inflammatory condition, and you deserve real care.
Start small. Build a flare plan. Track patterns if it helps. Ask direct questions in appointments. And when your skin throws a tantrum on an inconvenient day
(which it will), remember: you are not failingyour body is flaring. Those are not the same thing.
