9 Common HS Complications (and How to Calm Them)
Not everyone who has hidradenitis supperative (HS) is destined to have complications. Some people who get this painful skin condition remain at an early stage, with occasional pus-filled lumps and just a few problems. Others go on to develop a more severe disease, with tunnels connecting many under-the-skin lesions that ooze fluid, and lead to some serious scarring. But whatever your stage of the disease, it’s possible to control and minimize the symptoms so you can thrive.
With HS, your body reacts in an exaggerated way to normal bacteria that are on the skin, causing the skin and hair follicles to become inflamed. Treatment aims to reduce the inflammation and stop the disease from progressing. “The earlier and more aggressively we treat the disease to control it better, the less likely we are to see complications develop,” says Christopher Sayed, M.D., associate professor of dermatology at the University of North Carolina Medical School in Chapel Hill, North Carolina. Click through to learn about some of the most common complications and what you can do if they occur.
“One of the big concerns is the development of infection,” says Stephanie Goldberg, M.D., an associate professor of surgery at Virginia Commonwealth University School of Medicine in Richmond, Virginia. To decrease the bacterial load so your skin won’t overreact, doctors will often recommend antimicrobial washes like Hibiclens (chlorhexidine) as well as antibiotics (oral or topical), says Dr. Goldberg. “A lot of patients will tell you that they already use bleach baths even if their physician hasn’t necessarily recommended them. That's very popular to help control the disease.”
HS lesions can progress into painful scars and tunnels (interconnected lesions under the skin). To minimize the risk of long-term scarring, you need to stabilize HS flares by decreasing inflammation. Deroofing—when a surgeon takes off the top portion of the tunnels, scrapes them, and allows them to heal from the inside out—will help do just that and give medications a better chance of working, says Dr. Goldberg. Doctors typically do this procedure in their office and give you a local anesthetic to make it hurt less.
Because of scarring, Dr. Goldberg says, “I have patients who can't lift up or use their arms because of the pain and the limited range of motion. And I have other patients who, if they develop inflammation in their groins, find it very difficult to walk.” Those thick, rope-like scars can be as psychologically and physically debilitating as active lesions, HS patients reported to researchers at the University of Pennsylvania. The solution: Surgery as well as laser treatments can help relax scarring and help mobility over time.
Scars can also disrupt the microscopic lymph channels that drain excess fluid from the skin until they stop working, explains Dr. Sayed. “That's most common in the genital area, leading to mild or severe swelling of either the labia or the scrotum. The more you control the inflammation of the disease, the more it tends to go down some over time,” he says. Newer meds like biologics can help reduce the inflammation. But so can finding the particular triggers that make flares worse. “We have patients who are able to say, for example, ‘I know when I eat dairy I'm in pain,'” says Dr. Goldberg.
“Skin discoloration is very common,” says Dr. Sayed. “There can be temporary discoloration where the skin is either red or darker after a lesion has flared up. And it can take weeks for each individual spot to get better.” The answer again is to keep flares at bay through meds and lifestyle changes. For example, small tweaks like cutting down on sodas can help you lose weight. And that in turn can reduce the places where your skin rubs together, especially in the groin and under the breasts, which may contribute to the way HS develops, says Dr. Goldberg.
“Sometimes scars take the form of tiny pits around hair follicles. Often those will have little blackheads that build up and refill over time,” says Dr. Sayed. “Some patients have a tendency to develop that particular type of scar and so may have a lot of the pitting.” Unfortunately, there’s no cream to avoid this. “If the disease is active, it leaves these things in its wake. And so that means you've got to have the disease calm down to avoid these things,” he notes.
Areas that have longstanding chronically inflamed skin can turn cancerous. “Part of it has to do with how the cells turnover, how they react, so it's not uncommon to see squamous cell cancers in more advanced HS, especially in the more chronic wounds,” says Dr. Goldberg. You’re already seeing a dermatologist, who’s probably on the case. But if things change, just make sure you’re being monitored; this isn’t one of the more common complications of HS but it's one to stay on top of.
HS is a systemic disease and a lot of times you have other chronic conditions, including diabetes, metabolic syndrome (a group of risk factors including high blood pressure, obesity, and high blood sugar), and inflammatory bowel disease. The common denominator: Inflammation. So your treatment plan should include stress reduction as well as a healthy diet since stress and processed foods can up inflammation. Just take the long view. “This is one of those diseases where the treatment is more like a marathon, not a sprint,” says Dr. Goldberg. “And it does take a lot of trial and error to help understand.”
“It’s distressing not to have control where on any given day you wake up and have pain and drainage and have to deal with this disease before you think of anything else,” says Dr. Sayed. So it’s not surprising HS carries the risk of depression. What helps is a good social network of support, says Dr. Sayed. “Hope for HS is probably the biggest support group that has a good online and in-person presence. And I think sometimes just knowing you are not alone in dealing with disease and talking with other people about coping strategies can be helpful.”