Hidradenitis Suppurativa (HS)
What is HS?
HS (hidradenitis suppurativa) is a chronic, inflammatory skin condition that causes painful bumps in your skin. These bumps or boils usually occur on parts of the body where skin touches skin, like the armpits, inner thighs, groin, or buttocks.
It might be painful, it might be embarrassing, and it might be emotional, but it is not contagious, it is not an infection nor is it a result of poor hygiene.
People all over the world are living with HS. Some groups are more affected than others.
- Female/Male: Women are 3x more likely to get HS than men.
- Genetics: HS can run in families. More than 30% of people with HS have a family member who also has the disease.
- Age range: HS usually starts after puberty - when you’re a teen or in your early 20’s - but it can also develop later in life in your 40’s or 50’s.
No matter who you are, if you have HS, you are not alone. Explore our site to learn more and connect with others!
What are the signs and symptoms of HS? Symptoms are all of the ways HS (hidradenitis suppurativa) changes the look and feel of your skin such as redness, darkening, or swelling. It also describes other feelings from your skin, like pain, itch, or burning. These symptoms are caused by inflammation, and can change over time. It can start as feeling sensitive, then change to a ‘10 out of 10’ pain, and end by being itchy.
The look and feel of HS can also change over time and be a little different for each person. HS can start as a bump in your inner thigh or a spot in your armpit. You might think it is a pimple or in-grown hair, but with time these bumps can:
- Become larger
- Last for weeks or months
- Rupture or burst & drain fluid
- Reappear in the same spot or different spots (usually in the underarms, under the breasts, inner thighs, genitals, or buttocks).
Could I have HS?
Many people don’t know if they have HS, and it can go undiagnosed for years. That’s why it’s important to talk to an expert provider if you think your symptoms can be HS. Your doctor will look at your skin and ask you questions about what you’ve been seeing and feeling.
If you get painful bumps, boils, or abscesses in typical areas (armpits, under the breasts, under the stomach, or around the genitals or buttocks), you might have HS.
There is no skin test or blood test that can diagnose HS, so that’s why it is important for you to talk to your doctor about all the spots you’ve had over time. Getting the right diagnosis can help you and your doctor figure out what treatments are best for you.
What causes HS?
HS is caused by the immune system generating too much inflammation in the skin. Inflammation in the skin can cause the symptoms people living with HS experience, such as pain, redness, swelling, itching, sores, and drainage.
The exact cause is not known, but research has found that inflammation in the hair follicle causes them to get blocked at the opening. As skin cells build up, the hair follicle gets weaker and can break open under the skin. This leads to even more inflammation in the skin, which can produce pus or fluid that drains from the area.
HS is not anyone’s fault. It is caused by too much inflammation, not an infection. HS is not contagious, it is not a sexually transmitted disease, and it is not related to how you wash or what products you use.
HS is a chronic inflammatory disease, and people with HS may also have other conditions at the same time. These are called HS comorbidities. Just because you have HS doesn’t mean you will develop these comorbidities, but it is important to monitor common symptoms and talk to your doctor to make sure you’re getting the right care.
What are the treatments for HS?
HS (hidradenitis suppurativa) treatments aren’t one-size-fits-all, and that’s a good thing. It means that you can work with your expert provider to find the right HS treatment (or combination of treatments) for you.
Your doctor will recommend treatments based on your HS severity, your reaction to prior treatment(s), and your other health concerns. You aren’t alone and you aren’t the first one to go through this. Here are some of the ways you can manage your HS every day. Others are thriving and you can too!
These are some of the treatments your doctor may discuss with you:
When you talk to your health care provider, you might try washes or medicines that you apply to the surface of your skin. The ingredients in the washes or topical medicines can be an antibiotic or anti-inflammatory. Washes are used to decrease bacteria on the surface of the skin that cause odor and may worsen the inflammation. Topical medications can be rubbed on the places where you get HS to either treat spots you have or prevent new spots from coming up.
Pills are used to treat HS, especially if it is happening in multiple spots on your body all at once (it’s hard to rub a medicine over a bunch of places!). Pills are useful because it can be hard for topical medicines to get down through the skin surface.
Antibiotic pills are used to treat HS because bacteria on the skin or in HS lesions can increase inflammation. Remember, bacteria are not the only reason HS happens – it’s also the immune system and some antibiotics can help decrease inflammation. Antibiotics can be used for a week or two, or months at a time. They can also be used in combination with other treatments.
Pills that influence the hormones in the body can also help treat HS. Your hormones can influence your immune system and your skin. These pills aren’t antibiotics and can be used for years, if needed.
Biologics are medicines that are administered as injections or infusions. These are prescribed if you have multiple HS wounds or lesions. Many of these medicines target a few chemicals that cause increased inflammation in HS. As a result, they do not lower the whole immune system.
Your doctor may recommend procedures like surgery or laser treatments for HS lesions that need to be drained, separated (called de-roofing), or removed.
Complementary and alternative medicine
Your provider may recommend other medical and health care practices, including diet and nutrition, therapy, supplements, mind/body techniques, and others. These therapies may build onto your current treatment plan. You and your health care provider may talk about these options.
Pain, Stress, and Emotional Strain
HS can be very painful. We want to treat the pain by treating the thing that causes it – the inflammation. That is where the treatments described above come in! If you’re having pain that isn’t controlled, tell your doctor. You can add other treatments to your HS treatment plan, including pain medicines, wound care, and/or physical therapy. Your doctor may have you meet a pain specialist to help you manage your pain.
While HS is a physical disease, the pain and other symptoms can take a real emotional toll. Don’t be afraid to ask for help when you need it. Join a patient support group to connect with others who share your story.
HS & other conditions (comorbidities)
HS can increase your chance of having another condition at the same time. This other condition is called a comorbidity. These conditions can be in the skin and in other parts of your body. This is why it is so important to talk to your doctor about managing your whole health.
These are some of the conditions that you and your provider can work together to look for and treat:
- Heart disease
- Polycystic Ovary Syndrome
- Acne, Pilonidal cyst
- Inflammatory Bowel Disease
All of these conditions can be treated. Take care of yourself - talk to your doctor.
Daily HS Management Tips How can I help manage painful bumps & abscesses?
- Keep the affected area clean by gently washing with antibacterial soap.
- Wear loose-fitting and breathable clothing to reduce friction on your skin.
- Try not to shave where you have breakouts.
- Some patients don’t shave their underarms. Instead, they use an electric trimmer to closely trim the hair.
How do I manage inflammation?
- Apply warm compresses or a warm washcloth to painful bumps or nodules.
- Put a hot tea bag that's been steeped for a minute on the painful abscess or nodule.
- Try ice or a cold compress for localized pain.
- Bathe with antibacterial soap and use hypoallergenic products.
- Use baby washes and lotions that will be gentle on your skin.