It’s not easy to find a doctor who’s knowledgeable — and compassionate — about hidradenitis suppurativa (HS). The chronic skin disease causes painful lesions to form under the skin and secrete pus and blood. It is not well understood and is often misdiagnosed.

People seeking a medical opinion for symptoms of HS — which commonly affect the groin, armpits, buttocks, and under the breasts — often encounter physicians who lack expertise, show insensitivity to the condition, or shame them for developing it. This can result in delayed diagnoses, years of suffering, and poorer health outcomes.

“I’ve literally been dealing with this for more than 10 years,” wrote one new member of myHSteam. “My doctor never explained to me what I had or why I kept getting [the boils].” Another member shared her doctor’s words: “He automatically called me fat, and said it was my fault. Then he continued to lecture me on the dangers of McDonald's french fries for over 45 minutes.”

To learn more about getting proper medical care for hidradenitis suppurativa, myHSteam talked to Dr. Iltefat Husain Hamzavi, co-director of the multicultural section of Henry Ford Hospital’s dermatology department and lead physician for the HS Clinic in the department of dermatology at Henry Ford Health System. In this clinic, Dr. Hamzavi has treated more than 4,000 people with hidradenitis suppurativa.

HS, also known as acne inversa, is incurable but treatable. Yet people with the disease experience barriers to care that create significant pain, mental health issues, and diminished quality of life. And physicians who are unfamiliar with this complex dermatological condition can have a devastating effect, warned Dr. Hamzavi.

Doctors who don’t understand HS may incorrectly attribute its symptoms to poor hygiene, which is not a cause of HS. “‘You’re dirty, and if you wash more often you wouldn't have HS.’ Do you know what that does to someone?” Dr. Hamzavi asked. “People will scrub all day long and social distance to the point where there's no human contact. This triggers a mental health crisis that’s a much bigger problem.”

Why It’s Hard To Find a Good HS Health Care Provider

HS was not a commonly diagnosed dermatological condition until people living with the condition and their physicians started to raise concerns. It’s a complex, hard-to-treat systemic disease that requires specialized expertise and attention. Although the cause of HS is not exactly known, researchers believe it’s linked to a malfunction of the immune system, which causes inflammation in sweat glands and blockages in hair follicles. HS runs in some families, indicating a possible genetic link.

Between 0.75 percent and 4 percent of the U.S. population is affected by HS, which typically starts in adolescence and affects those under the age of 40. Women are three times more likely to suffer from HS than men, and African Americans have a higher prevalence of the disease. “They’re the largest subgroup that seems to suffer the most,” said Dr. Hamzavi.

A 2020 report representing the concerns of 25,000 people with the skin disease identified the five main barriers to care:

Lack of HS Knowledge

Long delays in diagnosis are perennial frustrations for people with HS. Some members of myHSteam struggled for years because doctors could not diagnose them or offer helpful treatment.

“I've seen so many doctors and they all scratched their heads and said, ‘I don't know why this is happening.’ I had to diagnose myself,” wrote one member. “I did research on the internet and read all about it. Finally it had a name. I took it to my doctor and he read it and said, ‘I think you may be right.’ Well duh!”

Poor Practitioner Communication

Lack of empathy and respect are also common. Study participants reported that appointments often included dehumanizing conversations and feelings of not being heard, rather than explanations of the disease and possible treatment options. “After being told that it was my fault for not being clean by a doctor, I was mortified,” one member wrote. In actuality, poor hygiene is not a cause of HS.

Shaming comments also cause people with HS to avoid medical care. “What kind of doctor makes you feel like it’s your fault for such a terrible disease?” asked another member. “I've been on my own with no dermatologists or doctors because of this reason.”

Difficulty Accessing Specialists in HS

Study participants also reported having trouble gaining access or referrals to health care professionals with HS expertise and knowledge of mental health resources. Underserved populations, in particular, often experience challenges in this area.

“With earlier access to appropriate care, the disease may have better outcomes,” explained Dr. Hamzavi. It can take up to seven years for a proper diagnosis, and even longer for people of color, he noted. Because the disease affects people differently, “We see divergence in the quality of care among different populations.”

Distrust of the Medical Community

Erosion of trust has led people with HS to seek support and medical advice from social media platforms and online support groups, where they feel safe and can share experiences. “There has to be a lot of trust, a place where people can talk and not feel judged,” Dr. Hamzavi said.

In-person support groups are also critical. “Some people want to see someone who walks through the door and is functioning [well]. It gives them a sense of hope,” said Dr. Hamzavi.

Traumatic Experiences of HS

The pain and stigma of living with HS, however, has been the biggest deterrent to seeking medical care, according to the study. Participants indicated that pain was the most important factor impacting quality of life, functioning, and the ability to attend school or work. They reported feelings of depression and described the value of support groups in reducing isolation and restoring hope.

How To Find an HS Doctor

Whether you’re embarrassed to see a doctor or you’ve been traumatized by a bad physician experience, know this: The earlier you seek treatment, the better your outcome may be. But it can take multiple visits to find a doctor who gets it. Here are some tips for locating and working with a physician who understands HS.

Get Smart About HS

Knowledge is power. Being informed about this complex skin disease can help you vet doctors, ask the right questions, and know whether the answers you’re getting include sound medical advice. It’s also important to know the prevailing myths about HS. Inexperienced doctors, for example, may tell you that HS is an infectious disease associated with poor hygiene. This is a myth that can lead to harsh hygiene practices or inappropriate treatments.

Seek a Specialist

HS is a complex medical issue that requires specialized knowledge. If your dermatologist cannot answer questions or provide a proper diagnosis, ask for a referral to a board-certified physician who’s a specialist in the relatively new field of complex medical dermatology.

Complex medical dermatologists work at major hospitals and private practices across the U.S. They treat difficult, rare, or complex skin diseases, such as HS. Evaluating and treating these conditions requires expertise in both internal medicine and dermatology. In some cases, the dermatologist will collaborate with a rheumatologist, gastroenterologist, or other specialists.

The Hidradenitis Suppurativa Foundation provides a list of Hidradenitis Suppurativa Specialty Clinics across the U.S. that provide medical care for people with HS.

Consider a Telehealth Visit

If you can’t locate a complex medical dermatologist near you — or are not able to visit in person due to risk factors associated with the COVID-19 pandemic — consider a virtual consult. Technology now makes it possible for your doctor to remotely examine, diagnose, and prescribe treatment for HS. If you’re in pain, you never have to leave home to see your doctor.

Telehealth visits can typically be conducted via video chat, phone, email, or even text. Most physicians prefer video consults so they can see your skin symptoms. Your dermatologist may also request photos of skin areas affected by HS.

During an HS telehealth consult, your doctor will examine your skin. They may even ask you to touch or press on any affected areas, and report pain or other sensations you feel. Like a regular office visit, your doctor can answer questions and discuss approved drugs for HS, such as Humira (Adalimumab). They can also monitor side effects and adjust your medication. Be sure to check your insurer’s coverage of telehealth visits before setting up an appointment so you don’t fall outside of coverage guidelines.

Be Prepared for Your Doctor Discussion

To get the most out of your visit, write down all the points you’d like to discuss in advance. During the appointment, remember to share how HS has impacted you mentally and emotionally, going beyond your physical concerns. Make sure the doctor answers this overarching question: Can you help me understand the inflammation that's happening inside my body that may be contributing to my HS? This Doctor Conversation Starter can help you get the most out of the appointment.

What a Knowledgeable Doctor Will Say

Good HS doctors know about research, drug development, and clinical trials underway that will soon provide new treatments and solutions for people with the condition. They should share that information with you.

Good doctors will also be empathetic and provide hope for the future. “I tell people, ‘I don't know why you have this, and I feel horrible that you do,’” Dr. Hamzavi explained. “‘This will be a journey, but we won't let you fall through the cracks.’”

A doctor should also tell you the truth. “Will you hurt? Yes. Will you have a boil that explodes and destroys your clothing? Will you be potentially intimate with someone and HS will flare up? Yes. Could you miss school, work, or your child's first day at school? Yes,” Dr. Hamzavi tells people with HS. “Will you be better two years from now, four years from now? Absolutely.”

Dr. Hamzavi urges people with HS to “always demand better treatments, demand better care, demand better access to care, and don't settle for doctors who tell you you’re dirty.”

Good care can lead to positive outcomes. One member of myHSteam shared her experience. “I have had a good day the last few weeks because my doctor put me on a long-lasting antibiotic regimen,” the member wrote. “I’ve had the least amount of pain and swelling and bursts that I have ever had since this condition started more than 10 years ago. I'm so thankful to both God and my doctor!”

You Are Not Alone: Finding Support for Your HS Journey

By joining myHSteam, the social network and online community for those living with hidradenitis suppurativa, you gain a support group more than 17,000 members strong. Finding a compassionate and knowledgeable doctor for HS is a frequent topic of discussion.

Have you found a doctor who has helped you with HS? How long did it take you, and how did you find them? Share in the comments below or post on myHSteam.