Many people with hidradenitis suppurativa (HS) consider pain as one of the worst symptoms of the disease.1
HS is a painful, chronic inflammatory skin disease. The disease begins when clogged hair follicles cause bumps. The process leads to:2,3
- Abscesses
- Pus
- Odor
- Inflammation
- Tunnels under the skin
- Scars
Symptoms are worse during random flares.2,3
A long delay for HS diagnosis
Most people with HS deal with pain for years before finding treatment that helps. The average delay before getting a diagnosis is up to 7 years.4
A person in a research study described their experience: “It feels like you are being stabbed or like you just got a cut. And then it’s very sore, to the point where (if) you even move; it is going to hurt even worse. I would be in my room crying and rocking back and forth because the pain was so bad … I was scared and nervous to even find out what it was.”1
Types of HS pain
HS involves two main types of pain, acute and chronic.1,5
Acute pain comes from inflammatory lesions, or sores. People with HS describe acute pain as burning, stinging, shooting, and stabbing. Usually, relief of acute pain comes only after the lesions rupture. People with HS may go to the emergency room or seek care from their dermatologist (skin specialist) for relief.
If treated in the emergency room, a procedure called an incision and drainage is usually performed to open the lesion surgically to relieve inflammation and drain pus. If seen by a dermatologist in an office visit, the dermatologist may perform a similar procedure or inject steroids into the lesions to reduce the flare. Both procedures are effective at the time, but the lesions almost always come back.
Chronic pain is linked with advanced disease. It is described as an ongoing gnawing, aching tenderness, and throbbing.
How bad is the pain?
One study found that people with HS had higher pain scores than people with psoriasis, skin tumors, eczema, acne, and other skin diseases. In another large study comparing people with skin diseases to healthy people, those with HS had the highest risk of pain and discomfort.1
Both acute and chronic pain can interfere with sleep and activities of daily life. In a large, multicenter study, people with HS had high risk for interference with:1
- Mobility
- Self-care
- Work, social, and leisure activities
Some people who had problems with mobility had minor soreness. Others were unable to walk or sit without pain.6
Research shows that pain is the most disabling factor in HS. Lower quality of life is linked with a higher number of painful lesions. People with HS scored in a similar range on quality of life as people with rheumatoid arthritis pain, cardiovascular disease, cancer, liver disease, and chronic obstructive pulmonary disease.1,7
Pain contributes to anxiety and depression, which also reduce quality of life. People with HS have more than 2 times the risk of suicide as people without HS.1,8
Treatment recommendations
Medications prescribed by your dermatologist, home remedies, and alternative medicine can help relieve moderate pain. For the greatest effect on chronic or severe pain, doctors recommend a coordinated, team approach to pain management. This may include:1
- Dermatologists
- Surgeons
- Pain management specialists
- Psychologists
- Psychiatrists
- Social workers
- Physical therapists
- Occupational therapists
- Other healthcare professionals
