Getting the right care can change everything

One of the most frustrating parts of living with hidradenitis suppurativa (HS) is how long it often takes to get the right diagnosis (7-10 years on average), and the right doctor.

Many people with HS spend years:

  • Being misdiagnosed
  • Feeling dismissed
  • Trying treatments that do not help
  • Explaining the same symptoms repeatedly

And because HS is a complex inflammatory condition, not every healthcare provider is experienced in managing it. 

Finding the right HS specialist can make a significant difference, not  just in treatment, but in quality of life.

Why HS Requires Specialized Care

HS is more than a skin condition.

It is a chronic inflammatory disease that can affect:

  • Physical health
  • Pain levels
  • Mental health
  • Daily functioning
  • Relationships and confidence

Because HS can vary widely in severity and presentation, treatment often requires individualized care. 

An experienced HS specialist understands:

  • HS staging and progression
  • Advanced treatment options
  • Surgical interventions
  • Pain management
  • Long-term disease monitoring

Most importantly, they understand that HS is real, and deserves to be taken seriously. 

As an auto-inflammatory condition, HS often comes with several comorbidities, other diagnoses which are not caused by your HS, but rather, related to the systemic inflammation and may have overlapping symptoms. To learn more, check out our interactive body map tool, Connecting the Dots. 

Signs You May Need a New Provider

Not every provider will be the right fit.

You may want to seek another opinion if:

  • Your concerns are repeatedly dismissed
  • Your HS is progressing, and your provider is still only prescribing antibiotics 
  • You are told HS is caused by poor hygiene
  • Treatment options are never discussed
  • Your pain is minimized
  • You feel rushed or unheard
  • Your condition continues worsening without a clear plan

Trust matters in chronic illness care. You deserve a provider who listens, who understands HS, and who will be a true partner in your treatment journey. 

What to Look for in an HS Specialist

Experience Treating HS

Ask directly:
“How often do you treat patients with HS?”

Providers experienced in HS are often more familiar with:

  • Biologic therapies
  • Surgical approaches
  • Advanced wound care
  • Hormonal considerations
  • Flare prevention strategies

Willingness to Build a Long-Term Plan

HS management is ongoing. A strong provider relationship should include:

  • Treatment discussions
  • Follow-up plans
  • Goal setting
  • Flexibility when symptoms change

Respect and Communication

How a provider makes you feel matters. You should feel:

  • Heard
  • Respected
  • Comfortable asking questions
  • Included in decisions about your care

Questions to Ask During Your Appointment

Some helpful questions include:

  • What stage is my HS?
  • What treatment options are available?
  • When should surgery be considered?
  • What lifestyle factors may impact my flares?
  • How can we manage pain more effectively?
  • How often should I follow up?

Bringing questions to appointments can help you advocate for yourself more confidently. Check out this appointment checklist tool. 

Dermatologists vs HS Specialists

Not every dermatologist specializes in HS. While many dermatologists can diagnose and treat HS, some providers have additional experience managing complex or severe cases.

Depending on your needs, your care team may also include:

  • Surgeons
  • Wound care specialists
  • Pain management providers
  • Mental health professionals

HS care is often multidisciplinary.


The Emotional Side of Finding Care

For many people, seeking care after years of dismissal can feel emotionally difficult.

You may feel:

  • Nervous
  • Embarrassed
  • Discouraged
  • Skeptical

These feelings are understandable. But finding the right provider can help rebuild trust—not only in healthcare, but in your ability to manage HS moving forward.

You Deserve Proper Care

Living with HS is already difficult enough.You should not have to fight to be believed.

The right provider will:

  • Take your symptoms seriously
  • Work with you collaboratively
  • Help you explore treatment options
  • Support your long-term health

And if a provider does not make you feel respected or supported, it is okay to seek another opinion. Use our dermatologist finder, to find an HS specialist near you.

You Are Allowed to Advocate for Yourself

Advocating for your health is not you “being difficult”. It is necessary. You know your body best.
You deserve answers. And you deserve care that helps you move forward—not just cope. Whether you’re just getting started or looking for new care options, we have tools to guide you along the way.