When it comes to skin conditions, diagnosis and treatment can be cut and dry or much more complex. Take acne, for example. The patient experiences consistent breakouts, they’re treated, and hopefully with time and patience some level of complexion clarity is achieved. The trajectory may not be simple, but it’s familiar. Other skin issues are more complicated and can elude even the experts. Hidradenitis suppurativa is one of them.
“It’s a condition of the oil and sweat glands where they’re getting recurrently clogged and drained creating these painful cysts under the skin,” says Angela Lamb, MD, board-certified dermatologist, and associate professor of dermatology at Mount Sinai. “They occur in the axilla or underarms, in the inguinal folds or what we would call the groin area, and also underneath the breasts, so the sub-mammary folds.” Even though there are over 200,000 cases a year, hidradenitis suppurativa, also known as acne inversa, isn’t well known at least to the general population. There are a couple of reasons for that, says Dr. Lamb. One, people often just think it’s regular boils or ingrown hairs. “I also think that sometimes people have mild cases and unless you go to somebody who knows to look for it, can ask questions, and put it all together, then they miss it,” explains Dr. Lamb.
Understanding hidradenitis suppurativa as a patient and asking your doctor the right questions is also an important part of the picture. You are your best health advocate, after all. Ahead, Dr. Lamb shares more of her expertise and insight.
How do I know if I have hidradenitis suppurativa?
You will see lumps in the commonly affected areas, where the skin folds, with some regularity. They can be around one to two centimeters in size and are often very painful, explains Dr. Lamb. Because things like boils or ingrown hairs are also common in the areas where hidradenitis suppurativa occurs, the condition is often either misdiagnosed or caught late in the game. “Some people have mild cases so depending how severe it is, and the history that person gives, it’s pretty easy to miss,” says Dr. Lamb. She says the best way for an accurate diagnosis is to visit the dermatologist when there is an active cyst for the doctor to examine. Then, it’s up to the doctor to ask the right questions (like how often the cysts come, if they go away on their own, where they appear, and if they come during your menstrual cycle) and for the patient to be forthcoming with pertinent information. While primary care doctors may be able to recognize hidradenitis suppurativa, a dermatologist who specializes in skin disorders is likely more familiar with the condition.
Why do people get hidradenitis suppurativa?
As with many other autoimmune inflammatory conditions, the why is not known. “We do think it may have some hormonal components,” says Dr. Lamb. There’s also the genetic piece as hidradenitis suppurativa often runs in families. Some mistakenly associate hidradenitis suppurativa with a lack of cleanliness or infection, but Dr. Lamb makes it clear that there’s absolutely no correlation at all. Hidradenitis suppurativa can however link to other skin conditions. “People who tend to get other things like severe cystic acne or something called pilonidal cysts also tend to get hidradenitis suppurativa, but it doesn’t have to do with bacteria itself,” she explains.
Are certain people more prone to it?
There are three groups that may be more susceptible to hidradenitis suppurativa: people of color, women, and those who are overweight. For the two latter groups, it’s about hormones. “Based on what we know, there’s something to the oil glands and hair follicles being more hormone sensitive,” says Dr. Lamb. “Because women have a monthly cycle that changes, that most likely contributes but I have seen some really bad cases in men, too.” Those who are overweight have more adipose tissue and that also makes hormones a little dysregulated, says Dr. Lamb. Hidradenitis suppurativa may be more prominent in patients of color, but the science as to why is not known. “Is it that we have a genetic predisposition? Is it because we have higher incidences of obesity in our community?,” says Dr. Lamb. “It’s hard to know what’s really happening and if it’s the chicken or the egg.”
What’s the treatment protocol for hidradenitis suppurativa?
“Hidradenitis suppurativa is one of the hardest things we treat as dermatologists,” proclaims Dr. Lamb. Treatment might involve oral or topical antibiotics, steroid injections, surgical removal in extreme cases, and the only FDA approved medication, adalimumab, which is a TNF alpha blocker. “The idea is to block some of these inflammatory pathways because with HS they are overstimulated.”
Lifestyle choices can also play a role in treatment. Dr. Lamb recommends eating a whole food, plant-based diet which brings with it anti-inflammatory benefits. “There’s some really good research on low glycemic index diets that don’t spike blood sugar being helpful,” explains Dr. Lamb. “I always say, ‘Look, even if eating a diet that’s anti-inflammatory and getting your weight under control can help your condition five to ten percent, why not try it?’” As far as everyday solutions, she suggests people wear light, loose clothing that won’t rub against and thereby irritate the affected areas. And there’s also some research that laser hair removal in the groin and underarm area can bring relief. To soothe a flare-up, using warm compresses to help bring the cyst to a head and have it burst on its own can be efficacious, but Dr. Lamb doesn’t recommend actually opening and draining them.
Will hidradenitis suppurativa go away?
Unfortunately, hidradenitis suppurativa is considered chronic and not curable. While skin conditions like eczema and psoriasis are more understood, there’s work being done to get to the bottom of hidradenitis suppurativa with large medical institutions like Mount Sinai conducting research. “For years we just didn’t know exactly what the science was, and we’re just now scratching the surface,” says Dr. Lamb. “And we’re hopeful.”