Pain is one of the most troubling symptoms of hidradenitis suppurativa (HS). The painful, boil-like bumps that form under your skin can seriously impact your physical and mental health. “Such a debilitating condition, and the pain is unreal,” one myHSteam member said.

Read on to discover what causes HS pain, along with ways you can manage it.

What Are the Symptoms of Hidradenitis Suppurativa?

Hidradenitis suppurativa can affect a single area of the body or appear on multiple areas of skin. Common symptoms include:

• Blackheads appearing in pitted areas of skin, frequently in pairs
• A painful lump under your skin in an area where your skin rubs together
• Abscesses that drain pus that may be itchy or have an odor
• Tunnels that form under the skin, connecting the bumps

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 of 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, pain management in people with HS is a major challenge. “It’s the most painful dermatological disease,” he said.

What Does HS Pain Feel Like?

People living with HS (also called acne inversa) report that the pain is one of the most unbearable aspects of the disease. In one report, people with HS pain described the sensation as hot, burning, stinging, shooting, pressure, throbbing, and tender.

One member of myHSteam described their pain as “constant stinging, feels like needles poking me all over down there.” Another reported, “I get flare-ups on my C-section incision. When we have to squeeze them [to release pus], it sends an electric-shock feeling down the incision.”

What Are the Stages of Hidradenitis Suppurativa?

HS pain can range from mild to severe, and it may vary based on the Hurley classification for disease staging. This is a method to categorize the severity of this skin disease based on the person’s lesions, scarring, and sinus tracts. The Hurley classification assigns the HS stages as follows:

• Hurley stage 1 — HS typically starts as a small lump, blackhead, or cyst.
• Hurley stage 2 — As HS progresses, lumps become infected and abscessed, but multiple lesions are still widely separated. The inflammatory process may tunnel its way through the underlying skin, creating sinus tracts that eventually build up with pus, break the skin surface, and leak.
• Hurley stage 3 — In severe HS, multiple nodules connect via a network of tunnels. As the inflammatory process builds, so does pus, causing pain, pressure, and chronic oozing, possibly with extensive scarring and painful movement.

How Does Pain Affect People With HS?

Depending on severity, HS pain can cause social isolation and a lower quality of life. Pain linked with HS can affect the physical, social, and mental well-being of people living with HS.

Intimacy

Because HS breakouts often affect the groin, sexual dysfunction is common. It’s one of the most frequently reported concerns among myHSteam members. One MyHSteam member 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.”

Sleep

Pain associated with HS often keeps people up at night. Several studies have shown that HS pain and itching are responsible for poor sleep quality. “I can’t sleep at night,” said a myHSteam member who had a large, painful cyst in one armpit.

Work

Holding down a job can be challenging while managing HS pain. 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 couldn’t manage working in an office: “I have HS in my groin and on my backside, so it hurts to sit, stand, and walk around.”

What Causes HS Pain?

There are two types of HS pain that can cause different sensations. Nociceptive pain happens after tissue damage, while neuropathic pain is caused by nerve damage. Nociceptive pain is the severe, sharp pain that arises from inflamed cysts, nodules, and abscesses. It may require immediate treatment to release accumulated pus. It may accompany flares and can also be described as throbbing, aching, or gnawing. Nociceptive HS pain may occur before menstrual periods.

Pregnancy can also trigger pain flares. HS disproportionately affects people of childbearing age, and symptoms generally worsen during pregnancy and after childbirth.

Neuropathic pain is typically described as burning, stinging, shooting, and stabbing. Chronic, neuropathic recurring pain is typically linked with advanced HS.

How Do You Relieve Pain From Hidradenitis Suppurativa?

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 said.

This often requires a coordinated, multidisciplinary approach. Your healthcare team may include a wide range of healthcare professionals, including specialists in pain management, dermatology, behavioral health, and more.

Medications

Your dermatologist or healthcare provider may recommend one or more of the following treatment options to manage HS pain.

First-Line Treatments

Initial treatment recommendations for HS may include topical or oral antibiotics to reduce bacteria and inflammation, topical analgesics (such as lidocaine) to reduce pain, and pain relievers like acetaminophen or oral nonsteroidal anti-inflammatory drugs (NSAIDs). Oral retinoids (vitamin A-based medicines) may also be effective for acne-like lesions.

Serotonin-norepinephrine reuptake inhibitors (SNRIs) may be effective for HS pain by blocking neurotransmitters in the brain.

Biologics

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. These injectable drugs are made from living organisms. Biologic therapy has proved effective at treating HS symptoms when other treatments fail. The U.S. Food and Drug Administration (FDA) has approved several biologics to treat HS.

Tumor necrosis factor (TNF) inhibitors are a type of biologic that blocks an inflammation-promoting protein in the blood. TNF inhibitors have been shown to significantly reduce HS pain severity. FDA-approved injectable medications that work by suppressing the tumor necrosis factor include adalimumab, which is approved to treat HS, and infliximab, which is used off-label for HS.

There are additional FDA-approved biologics that target other inflammatory proteins, such as IL-17.

Corticosteroids

For short-term relief, steroids may help reduce inflammation and pain symptoms. A dermatologist can inject the steroid into a painful cyst.

Hormone Therapy

Birth control pills and devices that regulate hormones can reduce pain and fluid collection in abscesses. “Since my coil was fitted, I’ve had very few flare-ups,” reported one member of myHSteam. “Two months pain-free, 98 percent of the time.”

Treatment with antiandrogen therapies, such as spironolactone (Aldactone), has also been found to reduce the number of lesions and pain.

Alternative Therapies

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. You might also consider changing your diet after consulting with a dietitian, as foods with a high glycemic index may worsen HS symptoms.

In-Office Procedures

Botulinum Toxin

The FDA has approved botulinum toxin to treat excessive sweating. Your dermatologist may recommend this treatment because it can help reduce infections.

Surgery

People with widespread lesions and tunnels that don’t respond to medication may be candidates for HS surgery. Some procedures, such as removing a lesion, can be performed in a dermatologist’s office. Additional surgical procedures for more advanced stages of HS may include unroofing (uncovering tunnels), punch debridement (removing a single bump), laser therapy, or surgical removal of skin.

Psychological Support

Psychological support is critical to HS pain management. Depression and anxiety can take a toll on mental health. It may help to join a support group or consult with a mental health professional if symptoms become overwhelming. “Once treatment, emotional support, and family support are in place, we can have people functioning at a very high level,” Dr. Hamzavi said.

Hope for the Future: Clinical Trials for HS

Many HS pain medications and treatments are in clinical trials. “I tell my patients there’s so much hope coming your way, more things than I could have ever imagined,” Dr. Hamzavi said. “I’m confident that in the next one to five years, it will be so much better for them.”

Join the Conversation

On myHSteam, people share their experiences with hidradenitis suppurativa, get advice, and find support from others who understand.

Have you found an effective treatment plan that helps ease your HS pain? Let others know in the comments below.