Built by People with HS, for People with HS.

Why HS Takes So Long to Diagnose — and How to Push for Answers

Last reviewed: May 2026 | Community resource — not medical advice. Always consult a qualified healthcare provider for diagnosis and treatment decisions.

Ten years.

That is the average time between when a person first develops symptoms of Hidradenitis Suppurativa and when they receive a correct diagnosis. Ten years of being told it’s boils. Ten years of antibiotics for “recurrent skin infections.” Ten years of being dismissed, misdiagnosed, shamed, and sent home without answers — while the disease quietly progresses, forming tunnels, leaving scars, and becoming harder to treat.

The 2025 Lancet review of HS — the most authoritative global summary of the condition published in recent years — named the diagnostic delay as “the first fundamental gap in the care of patients with hidradenitis suppurativa.” It confirmed that during those years of delay, patients consult on average more than three different specialties and receive more than three misdiagnoses. It also confirmed something critically important: the length of diagnostic delay directly and positively correlates with disease severity and the number of comorbidities at the time of eventual diagnosis.

This means the delay is not neutral. Every additional year without a correct diagnosis is a year the disease has to progress unchecked — forming more tunnels, creating more scarring, developing more comorbidities — before appropriate treatment begins.

This article explains exactly why this delay happens, who it happens to most, what it costs, and — most importantly — what you can do to shorten it for yourself or someone you care about.

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

Part One: Why the Delay Happens — The Seven Root Causes

Understanding why HS takes so long to diagnose is not an academic exercise. It gives you the tools to anticipate and circumvent each obstacle.

1. Most doctors have never been properly taught about HS

HS affects approximately 1% of the population — which sounds uncommon, but translates to tens of millions of people globally. Yet medical education has historically devoted remarkably little time to it. A 2024 survey study published in the JAAD found that “knowledge and awareness of HS can be limited among primary care physicians, leading to delayed or misdiagnosis resulting in advanced disease and limited therapeutic options.”

A 2025 cross-sectional survey of UK primary care healthcare professionals, published in BJGP Open, surveyed 183 GPs and primary care clinicians. While 74% felt confident diagnosing HS, only 39% were confident managing the pain associated with the disease — and awareness of treatment options beyond basic antibiotics was limited. Crucially, these were clinicians who responded to a dermatology survey, likely representing those with more interest in the subject than the average GP.

A 2025 multidisciplinary survey study published in PMC assessed HS diagnostic accuracy across physician specialties. The results were sobering: misclassification by non-dermatologist clinicians was common, and accuracy improved significantly with seniority and dermatology-specific training — but many patients will never see a dermatologist in their first years of symptoms.

📚 Reference: “Knowledge and awareness of HS in primary care physicians and dermatologists.” JAAD, 2024. JAAD

📚 Reference: Wainman HE et al. “Management of hidradenitis suppurativa in UK primary care: a cross-sectional survey.” BJGP Open, 2025. PMC

The practical implication: When you see a GP or urgent care doctor about HS symptoms, you cannot assume they know what HS is, have seen many cases, or will connect the dots. You may need to be the one who brings the diagnosis to the table.

2. HS looks like other, more familiar conditions

Early HS — a single recurring abscess in the armpit — looks nearly identical to a boil or a skin infection to a clinician who doesn’t ask the right questions. The features that distinguish HS (the recurrence pattern, the specific locations, the family history, the eventual tunnel formation) only become apparent over time and with a directed history. A ten-minute appointment with a clinician who has never considered HS as a differential diagnosis produces a diagnosis of “boil” or “folliculitis” and a prescription for antibiotics almost every time.

The most common misdiagnoses — supported consistently across research:

  • Furunculosis/boils — single bacterial follicular infections that heal with antibiotics
  • Folliculitis — superficial hair follicle inflammation
  • Ingrown hairs — particularly in the groin, frequently suggested to women
  • Cellulitis — spreading bacterial skin infection
  • Infected cysts — sebaceous or epidermoid cysts that recur
  • Sexually transmitted infection — when genital or groin lesions are present; a particularly damaging and stigmatising misdiagnosis
  • Crohn’s disease (cutaneous) — for perianal presentations; a real diagnostic overlap rather than pure error

Each of these misdiagnoses results in antibiotics, which may partially treat secondary infection but do nothing to address the underlying HS disease process. The cycle repeats.

3. Patient shame drives delayed help-seeking

A landmark multinational real-world study published in Dermatology and Therapy in 2024 — covering patients and dermatologists across France, Germany, Italy, Spain, the UK, and the USA — specifically investigated drivers of diagnostic delay. Among the factors with the most evidence in published literature: patient embarrassment was identified as one of the three primary drivers.

HS affects the most private areas of the body. The symptoms — draining, odorous lesions in the groin, armpits, and buttocks — violate cultural taboos around cleanliness and sexuality. Many patients wait months or years before seeking medical attention because discussing these symptoms with a stranger (even a doctor) feels impossible.

This delay is not irrational. Patients who have previously been told their condition is caused by poor hygiene, obesity, or sexual activity (none of which are accurate) have reason to expect shame rather than help from medical encounters. The shame becomes self-reinforcing: the condition causes shame, the shame delays help-seeking, the delay allows the disease to progress, the progression causes more shame.

📚 Reference: Murray N et al. “Equity and Outcome Events in HS: Exploring Effect Modifiers Associated with Diagnostic Delay.” Dermatology and Therapy, 2024. PMC

4. Delays in specialist referral

Even when a GP or primary care physician suspects HS — or when a patient raises it explicitly — referral to a dermatologist is not guaranteed or immediate. In many healthcare systems:

  • Dermatology waitlists are long (months in NHS UK; access varies dramatically in the US by insurance and geography)
  • GPs may attempt to manage HS themselves, sometimes for extended periods, before referring
  • Insurance or managed care systems may require failed treatments before approving specialist referral
  • Rural and low-income populations face significant geographic and financial barriers to dermatology access

The 2024 multinational equity study confirmed that delayed specialist referral was, alongside misdiagnosis and patient embarrassment, one of the three factors with the most evidence for contributing to diagnostic delay.

5. Who you are affects how quickly you’re diagnosed

This is one of the most important and underreported findings in HS diagnostic delay research. The evidence is clear that diagnostic delay is not equally distributed.

The 2024 equity study found that White patients were up to four times less likely to experience delay in first consultation compared to non-White patients. Older patients and patients in Germany (where HS awareness is historically higher among dermatologists) received faster diagnoses. People who smoked, had other medical conditions, or had a family history of HS took longer to receive a diagnosis — despite those factors being clinically relevant signals that should aid diagnosis.

A 2024 study exploring racial and ethnic disparities in the HS patient journey across Europe and the USA (published in the Journal of Dermatology) confirmed that people from racial and ethnic minority groups experienced greater disease severity and longer diagnostic delay.

A 2025 French study specifically on “diagnostic wandering” in HS found significant gender differences: women more frequently experienced diagnostic delays, were more often told their symptoms were caused by hygiene issues, and were more likely to see multiple clinicians without a correct diagnosis.

📚 Reference: Jaleel T et al. “Exploring racial and ethnic disparities in the HS patient disease journey.” Journal of Dermatology, December 2024.

The systemic reality: HS disproportionately affects Black and mixed-race patients, and these patients face longer delays before reaching appropriate care. This is a healthcare equity problem that the HS research community is increasingly naming and studying — but it remains a present reality that patients from marginalised groups should be aware of and prepared to navigate.

6. HS has no confirmatory test

HS is a clinical diagnosis — made entirely by clinical examination and history, with no blood test, biopsy, scan, or swab that confirms it. This has two consequences. First, a clinician who does not recognise the clinical picture cannot diagnose it, regardless of what tests they order. Second, patients who arrive asking for a test to confirm or rule out HS will be told no such test exists — which can be used (consciously or unconsciously) to defer diagnosis indefinitely.

A biopsy of an HS lesion will typically show non-specific inflammatory changes — useful for ruling out malignancy but not diagnostic of HS. Skin swabs of HS lesions often grow bacteria that are secondarily colonising the lesion, not causing the disease — which reinforces the misdiagnosis of “infection.”

7. The condition may start mildly and be accepted as normal

HS often begins in adolescence or early adulthood. For many patients, the first years of symptoms involve occasional painful lumps that partially resolve — painful, but perhaps not severe enough to prompt urgent medical attention, particularly if the patient doesn’t know that chronic recurrence in specific body locations is abnormal.

By the time the disease has progressed to sinus tracts and chronic drainage, the patient has often accumulated years of accepting the intermittent lumps as “just something they get” — delaying the moment when they connect their symptoms to a diagnosable, treatable condition.

Part Two: What the Delay Costs

Disease progression is irreversible

This is the most important clinical consequence of diagnostic delay — and it’s irreversible, which makes it tragic.

HS lesions, if not treated, progress from nodules to abscesses to sinus tracts (tunnels under the skin) to extensive scarring and fibrosis. This progression represents permanent structural damage to the skin and underlying tissue. No medication reverses existing sinus tracts. No biologic dissolves existing scarring. Surgery can remove affected tissue but cannot undo years of damage.

The UNITE registry data (a prospective registry of HS patients) found that each additional year of diagnostic delay increased the risk of progression to Hurley Stage II or III by 6%. Over a 10-year delay, this compounds to a dramatically higher likelihood of advanced disease than would have been present with early diagnosis and treatment.

The 2025 Lancet review confirmed: “The length of diagnostic delay positively correlates with hidradenitis suppurativa disease severity and the number of comorbidities at the time of diagnosis.”

The “window of opportunity” closes

There is a concept in HS management increasingly referenced in the clinical literature: the “window of opportunity.” This is the early phase of disease, before significant structural damage has occurred, during which biologic medications and other effective treatments can suppress inflammation before it creates irreversible tissue changes.

Once tunnels and extensive scarring are established, biologics can prevent new lesions but cannot reverse existing damage. The therapeutic opportunity to prevent structural harm is genuinely time-limited.

A 2025 narrative review published in Dermatology and Therapy stated plainly: “Owing to diagnostic delays, the therapeutic ‘window of opportunity’ is often missed, contributing to suboptimal outcomes.”

📚 Reference: “Towards a Paradigm Shift in Delivering HS Care: a Narrative Review.” Dermatology and Therapy, 2025. Springer

Comorbidities accumulate

As covered in our HS Comorbidities article, the systemic inflammation driving HS also contributes to metabolic syndrome, cardiovascular disease, depression, inflammatory bowel disease, and other conditions. The longer HS is uncontrolled and undiagnosed, the longer this inflammatory burden operates — and the more time comorbidities have to develop.

Diagnosing HS early and treating it effectively is, therefore, not just about the skin. It is about preventing a cascade of systemic consequences.

The psychological toll compounds

Years of being told your condition is caused by poor hygiene, years of ineffective treatments, years of symptoms you can’t explain to anyone — all of this creates a psychological burden that is distinct from and compounds the mental health effects of the disease itself. Many patients who finally receive an HS diagnosis describe a mix of relief (there is a name for this) and grief (for the years lost to misdiagnosis and inadequate care).

Part Three: How to Push for Answers

Step 1: Know the diagnostic criteria and say them out loud

HS is diagnosed when three criteria are all present:

  1. Typical lesions — deep-seated painful nodules, abscesses, draining tunnels, characteristic scarring
  2. Typical locations — armpits, groin, inner thighs, buttocks, perianal region, under/between breasts
  3. Chronicity and recurrence — at least two recurrences within six months, in the same locations

At your next appointment, say specifically: “I have recurring deep painful lumps in [specific locations]. They keep coming back in exactly the same spots. I’ve had this happening for [time period]. I’d like you to consider whether this could be Hidradenitis Suppurativa.”

Using the condition’s full name signals that you have done research and have a specific diagnosis to discuss. It requires the clinician to either confirm or explicitly rule out HS — which is a very different conversation from “I keep getting boils.”

Step 2: Bring documentation

The most powerful thing you can bring to a diagnostic appointment:

Photographs. A series of dated photos of active lesions, in their locations, across several months, is more convincing than any verbal description. Recurrence in exactly the same spot — documented in photos — is one of the clearest clinical signals for HS.

A symptom timeline. A written record of when lesions appeared, where, how long they lasted, and how often they recurred. Three months of this data transforms a subjective complaint into objective documentation.

A list of every treatment you’ve tried. Multiple courses of antibiotics that reduced but didn’t cure, and resulted in recurrence — this pattern is HS. Documenting it makes the argument that “simple infection” doesn’t explain your history.

Step 3: Counter common dismissals with specific language

When you’re told “it’s just boils”: “I understand it can look like a boil, but boils don’t typically recur in exactly the same anatomical location multiple times per year for years. The pattern of recurrence in specific skin fold areas — both armpits, both groins — is what makes me think this might be HS rather than random furunculosis. Would you be willing to rule out HS specifically?”

When you’re told “try better hygiene”: “I want to be direct: I’ve read that HS is not caused by poor hygiene — it’s an immune-mediated condition involving follicular occlusion, not a hygiene-related infection. The HS Foundation and American Academy of Dermatology both explicitly state this. I’d appreciate if we could focus on diagnosis rather than hygiene.”

When you’re told to “just keep taking antibiotics”: “I’ve been on oral antibiotics [X times] over the past [time period]. They partially control active lesions but haven’t stopped recurrence or reduced the frequency of flares. I’d like to discuss whether this pattern — inadequate response to repeated antibiotic courses — is a reason to refer me to a dermatologist who specialises in HS.”

Step 4: Request a dermatology referral explicitly

If your GP or primary care physician hasn’t already referred you to dermatology after multiple encounters with the same symptoms, ask directly:

“I’ve had this problem repeatedly for [time period] without a clear diagnosis or effective treatment. I’d like a referral to a dermatologist, specifically one who has experience with Hidradenitis Suppurativa. Can you arrange that?”

In healthcare systems where this requires justification: the documentation you’ve brought (photos, symptom timeline, treatment history) is exactly the evidence needed to support a referral. The pattern of recurrence, the locations, and the inadequate response to antibiotics are all clinical justifications.

Step 5: Know who to see

Not all dermatologists have equal HS experience. A general dermatologist who sees HS occasionally may be unfamiliar with the newer biologics, the surgical options, or the current clinical guidelines.

When requesting a referral, be specific: ask for a dermatologist with experience in HS. If possible, use these resources:

Step 6: If you face structural barriers, name them

If you are experiencing delays because of waitlist times, insurance restrictions, or geographic access issues:

  • Ask your GP if a private or urgent referral is possible given the disease progression
  • In the US, ask about telehealth dermatology — many HS specialists now consult remotely, which significantly expands geographic access
  • Ask whether your GP can initiate the antibiotic combination therapy (rifampicin + clindamycin) while you wait for a specialist appointment — this is within GP competence in many systems and can prevent disease progression during the wait
  • Document everything in writing — dates of requests, responses received, denials. This creates an audit trail that becomes important if you need to escalate or appeal

Part Four: Once You Have a Diagnosis — Don’t Let the Delays Continue

Getting a correct diagnosis is a milestone, not the finish line. Many HS patients receive a diagnosis and then experience a second delay: remaining on inadequate treatment for years when escalation is clinically warranted.

Watch for these red flags after diagnosis:

  • Being told you have “mild” HS based on a single appointment, without ongoing tracking of flare frequency and impact
  • Being kept on the same antibiotic for more than 12 weeks without assessment of whether it’s working
  • Having sinus tracts but never being offered surgery or a surgical referral
  • Never being assessed for a biologic despite moderate-to-severe disease
  • Not being screened for comorbidities — metabolic, cardiovascular, mental health, IBD

Every year after diagnosis that you remain undertreated is another year of preventable disease progression. The same urgency that applies to getting a diagnosis applies to ensuring the treatment you receive is adequate.

If your treatment isn’t working — say so explicitly. Ask what the next step is. Ask what criteria would be used to consider escalation. Ask for a Hurley stage assessment. Ask whether biologic therapy is appropriate.

A Note for People Who Have Been Waiting a Long Time

If you are reading this after years of misdiagnosis, or years on inadequate treatment, the first thing to acknowledge is: this was not your fault. The delay was a systemic failure — a failure of medical education, of healthcare access, of recognition — not a failure of your advocacy or your right to care.

The second thing to acknowledge is: it is not too late to push for better care. Even with established disease, effective treatment can significantly reduce disease activity, prevent further progression, improve quality of life, and reduce the systemic health burden. The window of opportunity for the best possible outcomes narrows with time — but it doesn’t close entirely.

The HS Warriors community was built partly for people who have been waiting years and are exhausted from fighting for answers. You belong here, wherever you are in the journey.

The HS Warriors Community

If you are navigating a diagnostic delay, trying to get taken seriously, or just need to talk to people who understand what this journey feels like — you are exactly who this community was built for.

👉 Browse community discussions 👉 Find a dermatologist by region (community recommendations) 👉 Read: How to Talk to Your Doctor About HS 👉 Mental health support 👉 Join HS Warriors — free and anonymous

This article is for informational purposes only and does not constitute medical advice. Always consult a qualified healthcare provider for diagnosis and treatment decisions.

Sources & Further Reading:

  1. Sabat R et al. “Hidradenitis suppurativa.” The Lancet, 2025. The Lancet
  2. Murray N et al. “Equity and Outcome Events in HS: Diagnostic Delay.” Dermatology and Therapy, 2024. PMC | PubMed
  3. Jaleel T et al. “Racial and ethnic disparities in the HS patient disease journey.” Journal of Dermatology, December 2024.
  4. Wainman HE et al. “Management of HS in UK primary care: a cross-sectional survey.” BJGP Open, 2025. PMC
  5. “Knowledge and awareness of HS in primary care physicians and dermatologists.” JAAD, 2024. JAAD
  6. “An Assessment of Clinician Knowledge of HS: Insights from a Multidisciplinary Survey Study.” PMC, 2025. PMC
  7. “Towards a Paradigm Shift in Delivering HS Care: a Narrative Review.” Dermatology and Therapy, 2025. Springer
  8. “Uncovering the burden of HS misdiagnosis and underdiagnosis: a machine learning approach.” Frontiers in Medical Technology, 2024. Frontiers
  9. Tsentemeidou A et al. “Diagnostic delay in HS: a systematic review.” Australasian Journal of Dermatology, 2024.
  10. American Academy of Dermatology. HS Clinical Guidelines. aad.org
  11. HS Foundation. Patient resources and provider directory. hs-foundation.org
  12. European Hidradenitis Suppurativa Foundation. Specialist centres. ehsf.eu