Wound and Skin Care When You're Living With 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 you talk to and work your doctor about wound and skin care while you're living with HS.

You will learn about:

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

• Ways to manage HS and its symptoms

• Taking care of your skin

• Creating a skincare and a wound care routine with your doctor and healthcare team

• Talking to your doctor and healthcare team and questions to ask

HS is a chronic (long-term) health condition where swollen, painful lumps form under your skin. The exact cause of HS is unknown, but it's likely due to a combination of your genes (traits you inherit) and other factors such as your hormones, smoking, and being overweight.

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

HS and its symptoms can be different for different people and may include: 

• Itching, burning, discomfort, or pain

• Small, indented areas with blackheads

• Painful, pea-sized lumps that can break open as sores or wounds that are slow to heal and drain blood and fluid that has an odor

• Tunnels under the skin and scars from healed skin

HS can be about more than just your skin. It can be extremely painful, limit your physical ability and functioning, and greatly impact your daily life.

Complications that may happen with HS can include: 

• Sores or wounds that can be open, painful, and need special care

• Tunnels and scars that may limit movement and cause pain

• Infections, if bacteria that normally live in your skin become trapped by tunnels or scars

• Swelling in your arms, legs, or groin from scars interfering with how fluid normally drains

• 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 or wounds

HS can last for years and may have times where symptoms improve (remission) and then get worse again (flare up). And while there's no cure, there are ways to help manage HS and its symptoms and protect your quality of life. 

Together, you and your doctor can make a treatment plan that best fits your individual needs and may include: 

• Skincare and wound care routines

• Lifestyle changes

• Procedures

• Medicines

• Joining a clinical trial

You and your doctor can work together to create a skincare routine to avoid irritants and treat it gently. Ask about what they recommend you use or not use on your skin, including any deodorants and antiperspirants, cleansers, creams and lotions, oils, moisturizers, toners, powder, makeup, sunscreens, and perfume, cologne, or aftershave.

Washing gently -- not scrubbing -- and patting skin dry instead of rubbing can help. Avoid using washcloths, loofahs, or sponges that may be irritating. Don't squeeze sores or wounds and avoid shaving, waxing, or using hair removers near sensitive areas or wounds.

Other ways to help your skin can include: 

• Limit sweating and keep cool. During hot weather, try staying in a cool, indoor space. If you apply warm compresses or heat for pain, ask your doctor about the right temperature

• Wear comfortable clothes with non-irritating fabrics. Try dressing in layers and looser-fitting clothes without a tight waistband. Some people though find that wearing leggings or other form-fitting, non-binding clothes can help keep wound dressings in place

Taking proper care of any sores or wounds will be important to help prevent infections and promote healing. Sores can be open and drain, or you may have wounds from procedures to remove tunnels. 

Wounds should be kept clean and covered by a bandage or dressing. But how to best care for them will depend on how severe and deep they are and whether they're wet or dry. Talk to your doctor about what wound care they recommend.

As part of your wound care routine your doctor may recommend: 

• Gentle solutions applied to your skin (topically) to help with healing

• Ways to help clean wounds

• Dressings to cover clean wounds and promote healing with an inner layer to absorb fluid and an outer, protective layer. A wound that's dry (not draining) may need a dressing to keep the area moist and help avoid cracked or painful skin. While a wound that's wet and draining may need one to absorb fluid and help prevent scars

• Medicines such as antibiotics topically or taken by mouth (orally) to help fight infections, or steroids injected into sores or taken orally to help reduce inflammation (swelling) and pain

You may have to try a few different ways to take care of your skin and wounds until you find what works. Together, you and your doctor can create a routine that's tailored for you. 

Questions you can ask your doctor and healthcare team about HS can include:  

• What wound care and skincare routines do you recommend?

• How can we help manage HS and its symptoms?

• Are there any lifestyle changes I should make?

• What treatments are available, and what are their side effects?

• 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 Wound and Skin Care When You're Living With Hidradenitis Suppurativa (HS).

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

HS Foundation

Hidradenitis Suppurativa

Hidradenitis Suppurativa -- National Institutes of Health

Hidradenitis Suppurativa -- US National Library of Medicine

HS Diagnosis, Treatment, and Steps to Take