Navigating hidradenitis suppurativa

Are you struggling with recurrent painful skin lumps or boils in sensitive areas? You may be experiencing symptoms of hidradenitis suppurativa, also known as acne inversa.

What is hidradenitis suppurativa?

Hidradenitis suppurativa (HS) is a chronic inflammatory skin condition that causes deep, painful lumps and boils to develop on the body. As these lesions heal, new spots develop and can eventually lead to the formation of firm scars. When multiple large lumps form in the same area, they sometimes connect beneath the skin, forming skin tunnels.

HS affects hair follicles and associated oil and sweat glands. The hair follicles become thickened and plugged, leading to rupture and inflammation.

HS is believed to be an inherited condition that is influenced by hormonal, environmental, and lifestyle factors. The condition is not contagious and is not due to poor hygiene.

Recognizing symptoms of hidradenitis suppurativa

As the name acne inversa suggests, the symptoms of hidradenitis suppurativa can look like those of acne. But they occur in different areas and can be quite painful. Often starting in one's 20s and 30s, symptoms usually develop on areas of skin that touch or rub together, such as the armpits (the most common site), groin, genitals, upper thighs, breasts, and buttocks. Symptoms include:

• deep, painful, inflamed lumps known as nodules
• swollen pus-filled bumps, known asabscesses
• draining skin tunnels, known as sinus tracts
• blackheads, often seen in pairs,known as comedones
• scarring
• dearkened areas of skin, known as hyperpigmentation
• odor.

Symptoms can range from mild to severe, and the course of the disease is highly variable.

HS can be distinguished from other skin conditions based on the type and location of skin lesions, as well as how long symptoms last. While boils or cysts can occur in isolation and often do not return once treated, HS is long-lasting and the symptoms can return. Your doctor may diagnose HS if three main features are present:

• typical lesions: nodules, abscesses, comedones, and/or skin tunnels and scars
• recurrence: more than two lesions over a six-month period
• typical areas: primary occurrence in skin areas that rub or touch, and the condition usually affects both sides of the body.

Hidradenitis suppurativa treatments

Treatment options for hidradenitis suppurativa depend on the extent and severity of symptoms, as well as individual factors and preferences. Treatments range from topical preparations applied to the skin to oral and injectable medications. HS is usually managed by a dermatologist.

There are both over-the-counter and prescription treatments available. For example:

• topical antiseptic washes such as chlorhexidine and benzoyl peroxide
• topical antibiotics such as clindamycin
• oral antibiotics such as doxycycline and minocycline
• resorcinol, a topical chemical peeling agent
• metformin, a diabetes medication
• injectable immune system–modifying drugs such as adalimumab and infliximab
• laser therapies.

A dermatologist can also perform an in-office procedure. These include:

• incision and drainage of inflamed abscesses
• steroid injections
• surgical removal of inflamed lesions or scars.

Your hormones can influence HS symptoms, and certain treatments can target this effect. For example, your doctor can prescribe treatments such as topical clascoterone and oral spironolactone that target certain hormone receptors. In addition, certain types of birth control can improve symptoms, while others may cause worsening. Females with HS should discuss this with their dermatologist or ob/gyn.

While treatments may help improve and control the symptoms of HS, there is no cure for the disease. Ongoing treatment and follow-up with your doctor are necessary to manage the condition.

Lifestyle changes to help manage hidradenitis suppurativa

Obesity, diabetes, poor diet, tobacco smoking, and skin friction can worsen hidradenitis suppurativa. You can improve your symptoms and potentially prevent development or worsening disease by managing these factors.

Lifestyle and self-care tips to help manage HS include:

• Avoid wearing tight-fitting clothing such as spandex.
• Wear belts and brassiere straps on a loose setting to avoid friction and pressure on the skin.
• Maintain a healthy body composition through diet and exercise.
• Quit smoking.
• Keep affected areas clean and dry.

Research suggests if you have HS you may be at an increased risk of heart attack, stroke, and death from all causes. Therefore, it's important to discuss healthy lifestyle choices with your doctor.

Managing and coping with hidradenitis suppurativa

The pain, drainage, odor, and scarring that may develop with HS can be embarrassing and distressing. Learning to manage these symptoms can help.

Practical tips include:

• Use warm compresses to ease pain and promote drainage of inflamed lesions.
• Cover draining areas with loose gauze to absorb pus. Apply a thin layer of petroleum jelly to prevent sticking to bandages or clothing.
• Use an antibacterial wash such as benzoyl peroxide in the shower to help with odor.
• Keep body hair trimmed; hair can trap sweat and bacteria, leading to odor.
• Take nonsteroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen (Advil) or naproxen (Aleve) to help with pain and inflammation, in consultation with your doctor.
• Consult with a dermatologist or plastic surgeon regarding options such as laser therapy or surgery to treat scars.

It is also important to develop coping strategies and find a support system to help lessen the burden of emotions you may be experiencing. HS has been linked to increased rates of anxiety, depression, and suicide risk. You may find support from friends and family, your doctor, or a therapist. The HS Foundation also offers information and resources including access to support groups.