What You Need to Know About Hidradenitis Suppurativa (HS)

This article is for people who are living with HS and their care partners, or anyone who wants to learn more about HS. The goal of this activity is to help increase knowledge about HS.

You will learn about:

• What HS is and how it progresses

• What causes HS and what may increase your risk

• Symptoms of HS and complications, or additional problems, that may happen

• Questions to ask your doctor

Hidradenitis suppurativa, or HS, is a chronic (long term) health condition that happens when your hair follicles get blocked causing swollen, painful lumps to form under your skin. These lumps typically happen in areas where your skin rubs together, like your armpits, groin, buttocks, and breasts.

HS is not pimples or cysts from acne, infected hair follicles (folliculitis), or a sexually transmitted disease or infection (STD or STI).

As HS goes on, the lumps may break open through your skin and cause sores that seep fluid that can often have an unpleasant odor.

As the lumps heal over time, tunnels may form under your skin and cause permanent scars. As a result, the sweat and bacteria that normally live in your skin can become trapped, which can cause more swelling (inflammation) and possibly an infection.

The exact cause of HS is unknown, but it's likely from a combination of your genes (traits that you inherit from your parents) and other factors, such as your hormones, if you smoke, and being overweight. But HS can be different for different people.

HS tends to affect girls and women more often than boys and men and usually first appears after puberty (when your body begins to change as you move from childhood into adulthood) and before age 40.

HS can't be spread to other people and isn't caused by an infection, allergy, not being clean enough, how well you wash, or what you use to wash yourself or your clothes.

You may have an increased chance of having HS if you:

• Have a family history of HS

• Are in your 20s or 30s

• Are a girl or a woman

• Have tobacco smoke exposure

• Have certain health conditions, such as:

  o Being overweight

  o Severe acne

  o Arthritis

  o Diabetes

  o Metabolic syndrome, a group of conditions that can increase your risk of heart disease, stroke, and type 2 diabetes

  o Inflammatory bowel disease (IBD), a chronic inflammation condition of your gastrointestinal (GI) or digestive tract

  o Polycystic ovary syndrome (PCOS)

HS symptoms can be different for different people. Some may have only mild symptoms, but for others HS can be severe and greatly affect your quality of life. And while being overweight or a smoker may lead to worse symptoms, even people who are thin and don't smoke can have severe HS.

HS symptoms can include:

• Painful, pea-sized lumps that can last for weeks or months

• Small, indented areas with blackheads

• Itching, burning, discomfort, or pain

• Lumps that break open as sores that are slow to heal and drain fluid that has an odor and blood

• Tunnels under the skin connecting the lumps that can cause scars

HS is rarely life-threatening, but it can be very painful and seriously limit your physical ability and functioning. It can also get worse over time and even affect your daily life and mental and emotional well-being. 

HS can last for many years with times where symptoms improve (remission) and then get worse or flare up. For some people, itching or discomfort can happen before a flare-up.

Factors that may trigger HS flare-ups can include gaining weight, stress, hormone changes, heat, sweating, and getting your period (menstruation) for girls and women. Sometimes, though, flare-ups can happen without any known or identified cause.

HS, especially if it's severe, can cause a number of complications or additional problems, including:

• Infection if bacteria become trapped in your skin

• Scars from skin being repeatedly damaged and healing

• Pain and limited movement due to sores and scars, especially in your armpits or groin

• Skin cancer (squamous cell carcinoma), especially with long-term HS

• Swelling in the arms, legs, or groin due to scars interfering with how fluid normally drains from these areas

• Effects on your mental and emotional well-being that may lead to anxiety, depression, or feeling embarrassed or isolated due to pain and the draining and odor of sores

For many people, living with HS does not just mean having a skin condition -- HS can also greatly impact your quality of life. HS can be painful and might affect your sleep, movement, school, job, and social and sex lives.

Many people can also have other health conditions along with HS, such as:

• Heart and blood vessel (cardiovascular) problems

• Metabolic syndrome

• IBD and other GI conditions

• Joint and spine problems like arthritis

• Reproductive health problems like PCOS

Be sure to talk to your doctor and healthcare team and let them know about your symptoms and how HS is affecting your daily life.

Questions you can ask can include: 

• How can we help manage HS and its symptoms and improve my quality of life?

• Are there other health conditions I should be aware of?

• What should I do if I start to feel stressed or depressed?

• Is there a support group I can join?

• Where can I find more information or resources?

Congratulations!

You have successfully completed the program: What You Need to Know About Hidradenitis Suppurativa (HS).

View Additional Materials on this topic that you may find useful:

National Institutes of Health: Hidradenitis Suppurativa (HS)

About Hidradenitis Suppurativa

Hidradenitis Suppurativa -- US National Library of Medicine