While HS often begins during adolescence, it can go undiagnosed for years due to factors ranging from embarrassment to a lack of awareness that its recurring symptoms can and should be treated. Many people don’t see a doctor for HS until it significantly interferes with their daily activities and reduces their quality of life. There’s a wide range of HS severity, but most people with it — even a fairly mild case — could benefit from seeing a dermatologist. While some primary care doctors have experience treating HS and other skin disorders, all dermatologists are trained to recognize and treat HS. Working with a dermatologist to treat your HS can help ensure you are getting maximum relief from pain and discomfort and know where to turn if your symptoms worsen. But even though all dermatologists can treat HS, that doesn’t mean each and every one will be the right fit for you. Here’s what to look for in a dermatologist, along with some other tips for navigating the process of finding a provider.
Barriers to Getting Care for HS
HS isn’t a rare disease, but in the past, some primary care doctors failed to recognize its signs and symptoms, according to A. Yasmine Kirkorian, MD, chief of dermatology at Children’s National Hospital in Washington, DC. Fortunately, this is no longer the case in at least some areas of the United States, she says, citing the uptick in referrals she’s seen in recent years. Doctors who don’t recognize HS, though, may treat the symptoms as isolated occurrences, not realizing that the condition is chronic, explains Dr. Kirkorian. Patients also may not recognize their symptoms as being ones of a chronic disease. They may think, for example, “This is just a strange thing that happens to me,” says Kirkorian, or “Oh, I just get boils,” when, in fact, they have HS. Other times, Kirkorian says, people may be reluctant to seek care, because they’re embarrassed by their symptoms or aren’t comfortable with a doctor examining certain body parts. Since areas of the body most commonly affected by HS include the armpits, groin, and buttocks, it’s essential that doctors take steps to make people with HS feel at ease, including talking about how an examination is used to guide treatment decisions. “It’s important to explain why you need to look [at a particular area of the body],” says Kirkorian. For example, if someone with HS describes symptoms in the armpits only, the doctor should tell the patient why it’s still necessary to examine the genital area and buttocks. “It’s very common that you find active disease there,” she explains, even when patients don’t notice any symptoms. “And that’s important, because it changes the staging, the severity of the diagnosis, and it may affect how we treat them.”
Getting the Care You Need for HS
Treating HS isn’t straightforward like following an instruction manual, says Kirkorian, which makes it different from some other skin conditions. Instead, she says, treating HS typically requires several approaches at the same time, tailored specifically to the individual. “Even in the best of hands, it can be a difficult disease to get under control,” she notes. In addition to prescription medicines, treatment for HS may involve addressing body weight, exercise habits, and sexual health, Kirkorian says. Because of the amount of time it takes to discuss all the facets of HS treatment, doctors may book more time for appointments in particularly bad cases, if they can. If you have severe HS, Kirkorian says, you may benefit from seeing a dermatologist at a hospital affiliated with a medical school or at an hidradenitis suppurativa specialty clinic. The good news is that most dermatologists — provided they’re a good fit for you — will be able to treat your HS effectively. “I think communication is the heart of all healthcare,” says Kirkorian. “If you don’t feel like the communication is working well in the visit, then that could be a reason to consider switching doctors.” It’s unrealistic, though, to expect that every treatment will work. The truth is, it can take some time to find the right one for you, and you may need to try something else, she says, which is yet another reason it’s essential to see a dermatologist who listens to your concerns. To improve communication with your dermatologist, try learning as much about HS as you can. Kirkorian recommends visiting the HS Foundation, which offers basic information about the condition as well as more in-depth discussions on treatments and research. Steer clear of any information online that isn’t clearly from a trusted source, she says. If there aren’t any dermatologists in your area, Kirkorian recommends looking for a dermatology practice that offers telehealth appointments. While video visits don’t work great for all skin conditions, “The diagnosis [of HS] is not usually that challenging,” she says. That means most of a telehealth appointment for HS is typically spent discussing symptoms and treatments. When necessary, patients can take photos of affected areas and send them to the doctor through a secure platform. Whether you’re looking for a telehealth or in-person appointment with a dermatologist, asking your primary care doctor for a referral can be a good place to start, says Kirkorian. You may also be able to get recommendations from online support or discussion groups, such as those found at Hope for HS and on Facebook. Above all, “People shouldn’t delay seeking care,” says Kirkorian. “We don’t want to wait until there is scarring or disability from the disease. I’d rather see a patient early than wait until their HS is really severe.”
