Getting a diagnosis of hidradenitis suppurativa (HS) can be overwhelming, especially if you’ve never heard of the condition before—and so many people have not, even though HS is not actually rare (it affects 1 to 2 percent of people in the U.S.). Many people visit a dermatologist thinking they’re dealing with ingrown hairs or acne, only to find out they actually have HS, a chronic, inflammatory skin disease. Also known as acne inversa, HS is different from acne in several ways. Its painful, red, often itchy lumps and lesions arise from clogged hair follicles and sweat glands, and HS tends to flare up in specific areas like the armpits, genitals, and buttocks. It can involve a combination of blackheads, abscesses, and sinus tracts (tunnel-like connections under the skin). When HS lesions break open, they release liquid that has a distinct, foul smell, often causing spots on sheets or clothes. HS can also leave permanent, severe scarring.
You’ll likely have a lot of questions for your doctor when you get an HS diagnosis, but the first is probably, “Is it curable?” Unfortunately, the answer is no, but HS is treatable and manageable, through a combination of medications, procedures, and lifestyle adaptations. Learning as much as you can about this skin disease will help empower you to find the combination of day-to-day and long-term strategies that works best for you. A good starting point: Take this list of questions to your doctor to get the conversation started.
Is there anything I’m doing that’s contributing to HS?
The exact cause of HS is unknown, but it seems to involve a combination of genetics/family history and hormonal factors (it’s not an infection, or anything contagious). That said, smoking and obesity are two external factors that do increase your risk of developing HS. Your doctor can discuss strategies for quitting smoking and pursuing weight loss in order to improve your HS symptoms, as well as assess whether there are other lifestyle factors you can adjust to help manage your flare-ups going forward—changes as simple as wearing looser-fitting clothing, or longer underwear that resemble bike shorts, to reduce friction can really help. Focusing on a diet that helps regulate your blood sugar and reduce inflammation, and being mindful of potential food triggers, can also minimize flare-ups.
How should I adjust my skincare routine?
While it’s a myth that HS is brought on by poor hygiene, certain skin care choices can be helpful or harmful when you have this skin condition. For example, instead of using scented body washes, it’s best to wash with an antiseptic body wash that contains chlorhexidine (easily found at drugstores), an ingredient that kills bacteria that contributes to HS flare-ups. You can use the same antiseptic cleanser to wash the affected area when a lesion bursts open, followed by topical antibiotics. (Note: Never squeeze/pop lesions, as this can make them worse; instead, apply warm compresses to relieve the pain and ask your doctor about corticosteroid injections or other procedures that can help.) You’ll want to skip loofahs and washcloths—too much potential irritation—and lather up gently with your hands instead. Instead of shaving affected areas, which can exacerbate inflammation, ask your doctor if you should consider laser hair removal, which has been shown to greatly improve HS symptoms. Your dermatologist can also share more detailed and personalized advice on skin care and wound care, and there are online HS support groups where individuals share specific products and skincare tips and tricks that have worked for them; the Hidradenitis Suppurativa Foundation is one great resource to bookmark.
What treatment options are there for hidradenitis suppurativa?
Increasing awareness of HS as a skin condition means there are an increasing number of treatment options to discuss with your doctor, who can review each one’s benefits and potential side effects. Treatment of hidradenitis suppurativa often begins with topical and/or oral antibiotics, like clindamycin, doxycycline, and rifampin. Topical retinoids or a peeling agent called resorcinol are sometimes recommended, usually in mild to moderate cases of HS. To address pain and inflammation, healthcare providers can administer intralesional steroid injections, as well as prescribe topical corticosteroids. Another category of HS treatment is biologics, drugs made from living organisms that reduce inflammation in the body and keep the immune system from over-reacting (specific ones include adalimumab, secukinumab, bimekizumab, and infliximab). These biologic therapies are usually administered via injection in-office or at home. Your doctor may also mention hormonal therapy treatments like spironolactone and oral contraceptives, since estrogen levels can play a role in HS flare-ups (many women notice symptoms right before their period), or metformin, a safe and effective diabetes medication that seems to work by preventing swelling at a cellular level. In clinical trials, there’s been some success using the acne drug isotretinoin (Accutane) off-label to treat hidradenitis suppurativa. It can take some trial-and-error to find the right combination of treatments for you, so stay in conversation with your doctor about what seems to be working and what’s not. If your doctor does not seem well-versed in treatment options, consider seeking out a specialist.
Are there procedures that help with HS?
Your dermatologist can also review whether there are laser and surgical options that might be appropriate for your stage of HS. One example is deroofing, an electrosurgical procedure that removes the “roof” of HS abscesses and sinus tracts and the inflamed debris within, to help prevent them from re-forming; it is most appropriate in early stage/mild to moderate cases. Another common HS procedure is called incision and draining (I&D), which as the name implies, involves draining individual cysts to relieve swelling and pain (they almost always come back later, though). Excision is another HS treatment option you can ask your doctor about; it involves surgically removing affected areas of tissue and sinus tracts to help greatly reduce future flare-ups. This can be done in conjunction with grafting, where a surgeon replaces the excised tissue with healthy skin from another area of the body, like the thighs or abdomen. Carbon dioxide (CO2) laser treatments are another option that have been shown to help put HS into remission, by zapping the clog-prone sweat glands and hair follicles that contribute to the condition.
How do I make this condition less overwhelming?
HS is more than a surface-deep disease. Beyond relentless pain and itching, often in intimate and sensitive locations, there are many real challenges to having HS, from the frustration of figuring out what treatment is best to the very unpleasant physical realities. Having HS can significantly impact your mental health, quality of life, sexual function, exercise routine, and even your desire to put on clothes and go out and do things. It’s important to be honest and open with your doctor if you’re feeling depressed or hopeless, and to seek help. The good news is that you’re far from alone. There are plenty of people out there struggling with the same disease who are ready to support you when you need it—and a good chance that if you stay positive and proactive, you’re going to find solutions that work for you.
