Pain is one of the most debilitating symptoms of hidradenitis suppurativa (HS), an inflammatory skin disease characterized by recurring boil-like bumps or lesions that form under the skin. Between 0.75 percent and 4 percent of the U.S. population is affected by HS — an often misunderstood disease with few, if any, standards of care for pain management.
People with HS typically experience more pain and mental health issues and poorer quality of life than those with other inflammatory skin conditions. Women are more likely to suffer from HS than men, according to the American Academy of Dermatology. African Americans also have a higher prevalence of more severe, painful HS. More than 2,700 members of myHSteam report having pain as a symptom of HS.
To learn more about HS pain and treatments, 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.
According to Dr. Hamzavi, managing physical and emotional pain in people with HS is a major challenge. “It’s the most painful dermatological disease,” he said.
The good news is that more research is being done to help people with HS. “The National Institutes of Health is finally funding [research] into this disease after years of neglect,” Dr. Hamzavi said.
Studies have found that pain is considered one of the most unbearable aspects of HS. In one report, people with HS pain described the sensation as hot, burning, pressure, stretching, cutting, sharp, taut, splitting, gnawing, pressing, sore, throbbing, and aching.
Members of myHSteam described their pain in their own words:
Hidradenitis suppurativa pain can range from mild to severe, based on the Hurley classification for disease staging. HS typically starts as a small lump, blackhead, or cyst (stage 1). As it progresses, lumps become infected and abscessed. Trapped bacteria tunnels its way through the underlying skin, creating sinus tracts that eventually build up with pus, break the skin surface, and leak (stage 2). In severe cases, known as Hurley stage 3, multiple nodules connect via a network of tunnels. As the bacterial infection builds, so does pus — causing pain, pressure, and chronic oozing.
Because HS breakouts often affect the groin, sexual dysfunction is the most frequently reported concern among myHSteam members. One woman shared, “This disease affects my ability to be close to my husband. When you’re always in pain and [the lesions] are on your panty line, it's embarrassing and depressing.”
People with HS often have pain-induced insomnia — or “painsomnia” — when pain keeps them up at night. A 2018 study found that HS pain and itching are responsible for poor sleep quality and duration, as well as daytime dysfunction. “I can't sleep at night,” said a myHSteam member who had a large, painful cyst in her armpit.
Holding down a job with HS pain can be … well, painful. One study found that nearly 60 percent of people with HS missed work — as much as 10 times a year, for up to 96 days. Trying to dress for work with active breakouts prompted one myHSteam member to call in sick: “I couldn’t put on a bra to go to work because of a painful abscess that drained and refilled the whole year.” Another can’t do desk work: “I have HS in my groin and on my backside, so it hurts to sit, stand, and walk around.”
There are two types of HS pain that can cause different sensations: acute pain and chronic pain. Acute pain is the severe, sharp pain that arises from inflamed cysts, nodules, and abscesses that often need immediate treatment to release accumulated pus. Acute pain is typically described as burning, stinging, shooting, and stabbing.
Acute pain can develop during HS flares. Menstruating women, for example, often experience severe HS pain during their periods. Pregnancy can also trigger acute pain flares. A 2020 report published in JAMA Dermatology, and co-authored by Dr. Hamzavi, found that hidradenitis suppurativa disproportionately affects women of childbearing age and may create complications during pregnancy.
Chronic, recurring pain is typically associated with advanced HS. It’s characterized by gnawing, aching, tender, and throbbing sensations.
Controlling inflammation is the most effective approach to pain management, according to Dr. Hamzavi. “With inflammatory control, we can get people with 10 out of 10 on the pain scale down to 7, or even 2,” he explained.
This often requires a coordinated, multidisciplinary approach. Your health care team may include specialists in pain management, as well as dermatologists, psychologists, psychiatrists, rheumatologists, infectious disease doctors, surgeons, social workers, physical therapists, occupational therapists, and other health care professionals.
Your HS health care team may recommend one or more of the following treatment options for pain.
First-line HS pain treatments include oral antibiotics, topical analgesics (such as Lidocaine), and oral nonsteroidal anti-inflammatories (NSAIDs), such as Celebrex (Celecoxib) and Tylenol (Acetaminophen). Occasionally oral steroids are used.
When pain relievers fail to provide relief, anticonvulsants may be prescribed to treat nerve-related pain as well as itch and depression. They include Neurontin (Gabapentin) and Lyrica (Pregabalin).
Serotonin-norepinephrine reuptake inhibitors (SNRIs) are also effective for HS pain. For people who have both HS and depression, Cymbalta (Duloxetine) can be particularly helpful. SNRIs have really “shown their mettle” in managing HS pain, according to Dr. Hamzavi. “Duloxetine is a medication we use constantly,” he said.
For moderate to severe cases of HS pain, biologics may be an option. This class of disease-modifying drugs works on the immune system to fight HS-related inflammation. Tumor necrosis factor (TNF) inhibitors, a type of biologic that blocks an inflammation-promoting protein in the blood, are the focus of Dr. Hamzavi’s research. “The goal is preventing the sinus tract from forming,” he explained, which can occur due to chronic inflammation.
TNF inhibitors have been shown to significantly reduce HS pain severity in clinical trials. A phase 2 trial of Humira (Adalimumab) — an injectable for moderate to severe HS approved by the U.S. Food and Drug Administration — found nearly half of participants who had weekly injections experienced at least a 30 percent reduction in pain. Another trial of TNF inhibitor Remicade (Infliximab) observed a 75 percent decrease in pain among the treatment group.
“Humira can be very helpful,” said Dr. Hamzavi. “In people who fail that, we can use higher doses of Infliximab.”
“There are a lot of exciting advances in TNF inhibitors,” he added. A new category of medications called C-5 inhibitors may be effective at blocking inflammation. “If we can hit that pathway, we can turn off inflammation,” the doctor said. “This is in addition to excellent work going on with IL-17 and IL-23 inhibitors.”
For short-term relief, corticosteroids can help reduce pain symptoms. A dermatologist can inject the steroid into a painful cyst or they can be taken orally.
Birth control pills and devices that regulate hormones can decrease pain and fluid collection in abscesses. “Since my [birth control] coil was fitted, I’ve had very few flare-ups,” reported one member of myHSteam. “Two months pain-free, 98 percent of the time.”
In severe cases, opioid analgesics may be prescribed. “We will work with specialty pain centers on opioid use … in very rare circumstances, ” said Dr. Hamzavi. “We don’t want to add another chronic health issue.”
Clinical trials are evaluating the effectiveness of cannabinoids — as an alternative to opioids — in treating chronic skin conditions, including HS. In a survey of 531 dermatologists and health care professionals, the majority said they were open to prescribing oral and topical cannabinoids for skin disease treatment. “We’re partnering with pain control physicians who know how to use cannabinoids,” said Dr. Hamzavi.
People with widespread lesions and tunnels that don’t respond to medication may be candidates for surgery. Many procedures can be performed in a dermatologist’s office. Surgical techniques used to treat painful, chronic HS may include incision and draining, deroofing (also known as unroofing), laser therapy, and excision.
People with HS can use self-care techniques at home to help manage pain. These approaches may include different types of baths, hot or cold compresses, and finding a skin care routine that works for you. Read more about HS home remedies and tips to ease pain.
Dr. Hamzavi, who works with a mental health team that specializes in sexual health, emphasized that psychological support is critical to HS pain management. He also encourages people with HS to join support groups, either in person or online. “Once treatment, emotional support, and family support are in place,” he said, “we can have people functioning at a very high level.”
A wide range of HS pain medications and treatments are currently in clinical trials. “We participate in trials all the time,” explained Dr. Hamzavi. “I tell my patients there’s so much hope coming your way, more things than I could have ever imagined. I’m confident that in the next one to five years, it will be so much better for them.”
By joining myHSteam, the social network and online community for those living with hidradenitis suppurativa, you gain a support group more than 14,000 members strong. HS pain is a frequent topic of discussion.
How does HS pain affect your life? Have you found any treatments that are effective for HS pain? Share your tips and experiences in a comment below or on myHSteam.