Built by People with HS, for People with HS.

How to Talk to Your Doctor About HS (And Get Taken Seriously)

Last reviewed: May 2026 | Community resource — not medical advice. For personalised medical guidance, please consult a qualified dermatologist.

If you have Hidradenitis Suppurativa, there is a reasonable chance that getting diagnosed took years. Not months — years. During that time, you probably heard “it’s just boils,” “try better hygiene,” “it’s folliculitis,” or were handed antibiotics and sent home. You may have been made to feel like you were overreacting, or that what was happening to your body was somehow your fault.

You were not overreacting. And it was not your fault.

The diagnostic delay in HS is one of the most well-documented problems in all of dermatology — and one of the most consequential. A 2025 comprehensive review published in The Lancet confirmed that the average delay between HS symptom onset and correct diagnosis is 10 years, during which patients consult more than three different specialties and receive more than three misdiagnoses. The research also confirms that longer diagnostic delay directly correlates with more severe disease — every additional year of delay increases the risk of progression to a more advanced Hurley stage.

This article is your guide to navigating the healthcare system with HS — whether you are still seeking a diagnosis, struggling to get taken seriously, trying to escalate your treatment, or looking for a specialist who actually knows this disease.

Part One: Getting Diagnosed

Why HS Takes So Long to Diagnose

Understanding why diagnosis takes so long helps you navigate the system more effectively.

HS has no blood test, biopsy, or scan that confirms it. It is a clinical diagnosis — made entirely by examining the patient and applying three criteria. This means that a doctor who has not seen much HS, or who has not been trained to look for it, will not recognise it. And most general practitioners, emergency physicians, gynaecologists, and even general dermatologists see relatively few HS patients in their careers.

HS looks like other conditions, especially early on. A single abscess in the groin is indistinguishable from a boil to a clinician who doesn’t ask the right questions. The key features that distinguish HS — recurrence in the same locations, the specific body areas affected, the presence of sinus tracts, the family history — require a targeted history. Without that, the presentation looks like “skin infection.”

Shame drives under-reporting. Research consistently identifies patient embarrassment as a primary driver of diagnostic delay. Many patients wait months or years before seeking medical attention because the lesions are in intimate areas and the discharge and odour feel unspeakably embarrassing. By the time they present, the disease may be more advanced — and the misdiagnosis story has often already accumulated.

Race, gender, and age compound the delay. A 2024 multinational real-world study of HS diagnostic delay found that being younger, female, non-white, having a higher BMI, and living in certain geographic regions were all associated with longer diagnostic delay. Black patients with HS are diagnosed later on average — in part because HS disproportionately affects people of colour and in part because structural inequities in healthcare access affect when and whether people reach specialist care.

📚 Reference: “Equity and Outcome Events in HS: Exploring Effect Modifiers Associated with Diagnostic Delay.” Dermatology and Therapy, 2024. PubMed

📚 Reference: Sabat R et al. “Hidradenitis suppurativa.” The Lancet, 2025. The Lancet

The Three Diagnostic Criteria for HS

HS diagnosis requires all three of the following to be present. Knowing these criteria gives you the language to describe your own case accurately and enables you to have a more productive conversation with any doctor:

1. Typical lesions: Deep-seated painful nodules, often described as “blind boils” in early disease. In more advanced disease: abscesses, draining sinus tracts (tunnels under the skin), and characteristic scarring (bridged scars, “tombstone” double-ended comedones). The key word is “deep-seated” — these are not surface pimples. They are under the skin.

2. Typical locations: The armpits (axillae), groin, inner thighs, buttocks, perineal/perianal region, and under or between the breasts (inframammary and intermammary folds). HS does not typically affect the face, neck, back, or chest in the way that acne does — though atypical presentations exist.

3. Chronicity and recurrence: The lesions recur — typically at the same locations — at least twice within a 6-month period. A single isolated abscess that never comes back is not HS. Recurrence is a defining feature.

When you go to a doctor, you should be able to say clearly: “I have recurring painful deep lesions in [specific locations], they keep coming back in the same places, and this has been happening for [time period].”

The Three Questions That Can Diagnose HS

Research from UAMS identified three questions that, when all answered “yes,” give a clinician high confidence in an HS diagnosis:

  1. Do you have recurrent painful boils or lumps in your armpits, groin, under your breasts, or in your buttocks?
  2. Have these lesions come back in the same place more than once?
  3. Have you had more than two of these in the last six months?

If you can answer yes to all three, bring these specific answers to your next appointment. They are the clinical signal that should prompt appropriate follow-up.

Most Common Misdiagnoses — and How to Counter Them

Knowing what HS gets confused with helps you correct misdiagnoses when they happen:

“It’s just boils” (furunculosis): Boils are bacterial infections of individual hair follicles. They tend to resolve with antibiotics, don’t recur in the exact same spot repeatedly, and don’t form interconnected tunnels. If your “boils” keep coming back in the same places and antibiotics only partially help, that is a diagnostic signal for HS.

“It’s folliculitis”: Folliculitis is shallow, involves multiple small pustules, can be anywhere on the body, and often resolves without treatment. HS is deep, recurring, located in specific body fold regions, and does not resolve spontaneously.

“It’s ingrown hairs”: Ingrown hairs are usually shallow and single. HS nodules are deep, recurrent, and can become abscesses significantly larger than any ingrown hair.

“It’s cellulitis”: Cellulitis is a spreading bacterial infection of the skin and is typically treated with antibiotics. HS lesions can become secondarily infected, but the underlying condition is not primarily infectious. If your “cellulitis” keeps coming back in the exact same spots, that is not how cellulitis behaves.

“It might be an STI”: HS in the groin or genital area is sometimes initially evaluated for sexually transmitted infections. HS is not contagious and is not transmitted sexually. If STI tests come back negative but the lesions persist and recur, HS should be considered.

What to say when you’re told it’s something else: “I’ve been told it’s boils/folliculitis before, but I’m concerned because this keeps coming back in exactly the same places — the same side of my groin, the same armpit — multiple times a year, and the lesions are very deep and painful. I’ve read about Hidradenitis Suppurativa and I’d like to discuss whether that could explain my pattern.”

Using the condition’s full name — Hidradenitis Suppurativa — rather than only describing symptoms signals to the doctor that you have done research and have a specific differential diagnosis to discuss.

Part Two: Getting Taken Seriously

Document Everything Before You Go

The single most powerful thing you can do before a medical appointment is arrive prepared. This applies at every stage — seeking diagnosis, managing established HS, or trying to escalate treatment.

Keep a symptom log. A simple written or phone-based record noting:

  • Date and location of each lesion
  • Pain level on a 0–10 scale
  • How long each lesion lasted
  • Whether it drained, and what the drainage looked like
  • Days off work or activities you couldn’t do
  • Any treatment you used and whether it helped

A few weeks of this data is far more persuasive than your memory of “it keeps coming back a lot.” It transforms a subjective complaint into objective documentation.

Take photographs. This is the most important practical step. Doctors see HS at one appointment. Photographs show the disease across time — a lesion forming, at its worst, after partial healing, recurring in the same spot three months later. Photos also allow you to show a doctor what your groin or armpit looks like during a flare without the timing of your appointment having to coincide with an active lesion.

Photograph active lesions clearly, with neutral lighting, and save them organised by date on your phone. Ask for permission to show them at appointments — most doctors will not only allow this but find it clinically useful.

Write down your history before you go. Include:

  • When you first remember having these lesions
  • Which body areas are affected
  • How often lesions recur (approximately)
  • Treatments you have already tried (topical antibiotics, oral antibiotics — which ones, for how long, with what result)
  • Family history of similar conditions
  • Comorbidities (PCOS, inflammatory bowel disease, metabolic syndrome, depression)

Walking in with a written summary tells the doctor you are organised, serious, and have thought carefully about your condition — which affects how they engage with you.

Language That Works

The words you use shape the conversation. Based on what HS clinicians look for, here are specific phrases that map to the clinical criteria and signal HS rather than “just skin problems”:

Instead of: “I keep getting boils” Try: “I have recurrent deep, painful nodules in my armpits and groin — they come back in the same locations repeatedly, and some of them leave scars.”

Instead of: “It hurts when I move my arm” Try: “Pain in my axillary lesions significantly limits my range of motion during flares — I can’t fully lift my arm when I have an active lesion there.”

Instead of: “The antibiotics don’t really help” Try: “I’ve completed three courses of antibiotics over the past year. They partially reduce the inflammation during the course, but lesions recur within weeks of stopping. The overall number of lesions and the frequency of flares hasn’t changed significantly.”

Instead of: “I’m really struggling” Try: “This condition is affecting my ability to work, sleep, and maintain daily activities. I’d like to discuss whether my current treatment is adequately controlling the disease, and what options exist for escalation.”

Clinical language — specific, functional, evidence-referenced — communicates seriousness and gets a different response than general expressions of distress.

How to Describe Your Pain Effectively

Pain is one of the most undertreated aspects of HS, partly because patients struggle to communicate it effectively in the brief window of a medical appointment, and partly because the pain occurs in areas that feel shameful to discuss.

When describing pain, be specific:

  • Location: “The pain is primarily in my left groin, at the site of the sinus tract.”
  • Severity: Use the 0–10 scale — and be honest. If it’s an 8, say 8. Patients often underreport pain because they don’t want to seem dramatic. Don’t.
  • Functional impact: “During a severe flare, I cannot sit for more than 20 minutes.” “I wake up multiple times per night from pain.” “I missed three days of work last month because of this.”
  • Duration: “The acute pain lasts 3–5 days at its worst, but there is a constant dull ache in that location that has been there for months.”

Functional impact language — what you cannot do — is more clinically actionable than pain scores alone.

Part Three: Escalating Your Treatment

Understanding the Treatment Ladder

Most healthcare systems follow a treatment escalation pathway for HS. Understanding where you are on this ladder, and when evidence supports moving up, makes escalation conversations much more productive.

The broad steps are:

  1. Topical treatments and antiseptic washes — for mild, localised disease
  2. Oral antibiotics (doxycycline, tetracyclines) — 12-week courses for mild-to-moderate HS
  3. Combination oral antibiotics (rifampicin + clindamycin) — for moderate HS that hasn’t responded to tetracyclines
  4. Hormonal therapy (spironolactone, combined oral contraceptive) — for women, particularly when HS cycles with menstruation
  5. Biologic medications (adalimumab, secukinumab, bimekizumab) — for moderate-to-severe HS that hasn’t responded adequately to antibiotics
  6. Surgery (deroofing, wide excision) — for established sinus tracts and localised disease that doesn’t respond to medical management

When to Push for Escalation

Current evidence, including guidance published in the JAAD in 2024, advocates for the early initiation of biologics for moderate-to-severe disease — not waiting until the disease has become structurally severe before escalating.

Clear signals that escalation is warranted:

  • You have completed two or more 12-week antibiotic courses without sustained improvement
  • You have active sinus tracts (tunnels under the skin) — these are a signal that the disease is progressing and requires more than antibiotics
  • Your disease has progressed in Hurley stage despite treatment
  • Your quality of life is significantly and persistently impaired despite current treatment
  • You are missing work, unable to exercise, or significantly limiting your activities due to HS despite treatment

📚 Reference: “Biologics in hidradenitis suppurativa: Progress and new directions.” JAAD, 2024. JAAD

The “window of opportunity” concept: Research and clinical experts increasingly reference a “window of opportunity” in HS — the earlier phase of disease where initiating biologics can prevent the formation of irreversible sinus tracts and scarring. Once tunnelling is established, no medication reverses it. Surgery is the only option for existing structural damage. This framing — acting while you still can prevent irreversible harm — is worth raising explicitly with your doctor.

Specific Questions to Ask About Escalation

“I’ve been on [antibiotic] for [X weeks/months]. My lesions are still [recurring/not improving/getting worse]. At what point would you consider escalating my treatment?”

“I have sinus tracts forming in [location]. Based on the guidelines, does this change what treatment I should be on?”

“I’ve read that biologics are recommended for moderate-to-severe HS after antibiotic failure. Given my disease course, would you say I qualify? And if so, what would the process be to get approved for a biologic?”

“What scoring system are you using to assess my disease severity? Can you tell me my current Hurley stage?”

“I understand that some insurance plans require a documented 90-day antibiotic trial before approving biologics. Is that something we should be planning for now so I’m not waiting longer than necessary?”

The “Window of Opportunity” Conversation

If your dermatologist seems to be in a “wait and see” mode despite persistent or worsening disease, this specific framing can move the conversation:

“I understand the preference to try conventional treatments first, but I’m concerned about the risk of disease progression. The research suggests that sinus tract formation represents irreversible structural damage that can’t be reversed with medication. Given that I already [have active tunnels / have been on antibiotics for X months without adequate response / have progressed to Stage II], can we discuss what the timeline looks like for considering biologics? I want to act while there’s still an opportunity to prevent further permanent damage.”

This is not confrontational — it is evidence-informed advocacy. Any competent HS specialist will recognise this framing as valid.

Part Four: Finding the Right Doctor

Why Specialist HS Experience Matters

HS is one of those conditions where the treating doctor’s specific experience changes outcomes dramatically. A general dermatologist who sees a handful of HS patients per year may not be aware of the 2025 clinical guidelines, the newer biologics, the role of deroofing, or the evidence on early biologic initiation. A dermatologist who specialises in HS sees these patients regularly, stays current with the literature, and has the clinical experience to accurately stage, monitor, and escalate.

The difference between general dermatology care and specialist HS care is not theoretical. It is the difference between being on your fifth antibiotic course with no discussion of biologics, and being appropriately staged, monitored, and treated according to current evidence.

Finding an HS Specialist

United States: The HS Foundation provider directory is the best starting resource. These are dermatologists who have identified themselves as experienced in HS management, including biologic prescribing and surgical referral.

Europe: The European Hidradenitis Suppurativa Foundation (EHSF) maintains a list of specialist HS centres and experienced clinicians across European countries.

United Kingdom: Ask your GP for a referral to a dermatologist with specific HS experience. Many NHS trusts have HS specialist clinics — your GP can search for these. The British Association of Dermatologists can also help locate appropriate referrals.

Globally: The HS Warriors community maintains a regional dermatologist recommendation thread where patients share the names of dermatologists they’ve found helpful — one of the most valuable peer-sourced resources available.

Questions to Ask a New Dermatologist

Before committing to care with a new dermatologist, these questions help you assess their HS experience:

  • “How many HS patients do you currently treat?”
  • “Are you familiar with the 2025 North American HS clinical guidelines?”
  • “Do you prescribe biologics for HS, and have you prescribed adalimumab, secukinumab, or bimekizumab?”
  • “Do you work with surgeons experienced in HS deroofing or wide excision when needed?”
  • “How do you monitor disease severity over time — do you use Hurley staging, IHS4, or other tools?”

A dermatologist who is unfamiliar with the newer biologics, doesn’t use formal staging tools, or seems unfamiliar with current guidelines is a signal to seek a second opinion or specialist referral.

When to Seek a Second Opinion

Seek a second opinion if:

  • You have been receiving the same treatment for 12+ months without meaningful improvement and escalation has not been discussed
  • You have sinus tracts but have never been offered a surgical evaluation
  • You have never had your Hurley stage formally assessed
  • Your doctor has never mentioned biologics despite your disease meeting criteria
  • You feel dismissed, unheard, or that your pain and quality-of-life impact are not being taken seriously

Getting a second opinion is not disloyalty to your current provider. It is appropriate healthcare advocacy. Bringing the notes and treatment history from your current provider to a second opinion saves time and shows the new clinician the full picture.

Part Five: When Appointments Don’t Go as Planned

If You Feel Dismissed

HS patients are disproportionately likely to have their pain minimised, their conditions attributed to hygiene or weight, and their requests for escalation denied. This is documented — it is a systemic problem in how this disease has been understood and managed, not a reflection of your credibility or your right to care.

If you feel dismissed during an appointment:

  • Write it down. Document the date, what was said, and what you asked for. This record matters if you need to escalate.
  • Be specific about what you need. “I would like you to document in my notes that I have active sinus tracts and that I’ve requested consideration of biologic therapy” is a clear, specific, documentable request.
  • Ask for a written explanation. “Can you tell me in writing why you don’t think my disease meets criteria for escalation?” is a reasonable request that sometimes prompts reconsideration.
  • Request a referral. “I’d like a referral to a dermatologist with specific experience in HS” is a legitimate request that most primary care physicians and general dermatologists should accommodate.

Using HS Foundation Resources

The HS Foundation offers patient-facing resources including a summary of current treatment guidelines that you can print and bring to an appointment. Walking in with a copy of the clinical guideline summary and being able to say “this recommends biologic therapy for patients who meet these criteria — I believe I meet them” can shift the dynamic of a clinical conversation.

Scripts: Exact Language for Common Situations

Seeking initial diagnosis (at a GP or general dermatologist):

“I’ve been having recurring painful deep lumps in my armpits and groin for [X years]. They come back in the exact same spots, multiple times a year, and some have left scars. I’ve read about Hidradenitis Suppurativa and I’d like to know if this could be what I have. I brought some photos of active lesions.”

Asking your Hurley stage:

“Can you tell me what Hurley stage my HS is currently at? I want to understand where my disease is on the severity scale and what that means for treatment options.”

Requesting escalation after antibiotic failure:

“I’ve been on [antibiotic] for [time period]. My HS is still significantly affecting my quality of life — I’m having [X] flares per month and I’ve developed sinus tracts. I’d like to discuss whether I should be considered for biologic therapy, and what steps we’d need to take to pursue that.”

Asking about the “window of opportunity”:

“I’ve read that sinus tracts represent irreversible damage that can’t be reversed by medication. Given that I already have some tunnelling, I’m concerned about waiting longer before escalating. Can we discuss the timeline for starting a biologic?”

Requesting a referral to an HS specialist:

“I’d like to request a referral to a dermatologist who specialises specifically in HS. I want to make sure I’m being treated by someone who sees this condition regularly and is familiar with the current clinical guidelines.”

Responding to “it’s just boils”:

“I understand that’s how it looks in isolation, but I’ve had identical lesions recurring in exactly the same locations in my armpits and groin for [X years]. They’re deep, painful, and some have created tunnels under the skin. That pattern — recurrence in specific body fold locations, with tunnelling and scarring — is what I understand characterises HS rather than ordinary boils. Would you be willing to refer me to a dermatologist to evaluate whether this could be HS?”

The Bottom Line

The 10-year average diagnostic delay for HS is not inevitable. It persists partly because patients don’t know what to say, and partly because doctors don’t know what to look for. When a patient arrives with clear documentation, specific clinical language, an understanding of the diagnostic criteria, and a willingness to advocate for appropriate care — the encounter is fundamentally different.

You deserve a correct diagnosis. You deserve treatment that reflects current evidence. You deserve a doctor who takes this disease seriously. And you are more capable of making that happen than most people realise.

The HS Warriors Community

If you are navigating a difficult diagnostic journey or a frustrating treatment relationship, the HS Warriors community has been there. Our forums include threads where members share which doctors have been helpful, how they navigated insurance denials, and what language finally got them taken seriously.

👉 Browse community discussions 👉 Find an HS-experienced dermatologist by region 👉 Medical treatment discussions 👉 Join HS Warriors — free and anonymous

This article is for informational purposes only and does not constitute medical advice. For individualised medical guidance, always consult a qualified healthcare provider.

Sources & Further Reading:

  1. Sabat R et al. “Hidradenitis suppurativa.” The Lancet, 2025. The Lancet
  2. Tsentemeidou A et al. “Diagnostic delay in hidradenitis suppurativa: a systematic review.” Australasian Journal of Dermatology, 2024. Wiley
  3. “Diagnostic Delay in HS: Still an Unsolved Problem.” Skin Appendage Disorders, 2024. Karger
  4. Murray N et al. “Equity and Outcome Events in HS: Diagnostic Delay.” Dermatology and Therapy, 2024. PubMed
  5. Charrow A et al. “Biologics in hidradenitis suppurativa: progress and new directions.” JAAD, 2024. JAAD
  6. “Hidradenitis suppurativa diagnosis and management in primary care.” British Journal of General Practice, 2023. BJGP
  7. American Academy of Dermatology. HS Clinical Guidelines. aad.org
  8. HS Foundation. Patient resources and provider directory. hs-foundation.org
  9. European Hidradenitis Suppurativa Foundation. Specialist centres. ehsf.eu
  10. National Institutes of Health — PubMed HS diagnosis research. pubmed.ncbi.nlm.nih.gov