Takeaway:

Hidradenitis suppurativa (HS) is a noncontagious, painful, disfiguring, difficult-to-treat condition of hair follicles, mostly at the axilla and the groin, and massage therapy for people with HS requires some specific accommodations for client safety and comfort.

Author note: Vicki Stewart Winston is a massage therapist and educator in Tennessee. Although she has had symptoms for decades, she was only recently officially diagnosed with hidradenitis suppurativa (HS). She generously shared her experience to help with this article.

When Vicki Stewart Winston was 19 or 20 years old, she began to develop painful cystic boils along her panty line. She thought it was acne and that it was some kind of reflection on her cleanliness. But no matter what she did, the boils kept appearing.

At age 25, getting ready for a beach vacation, she got a bikini wax and sugar scrub. Almost immediately, golf-ball–size cysts emerged in her axillae and groin. They were extremely painful, and eventually she had one lanced. Her doctor said, in reference to the scarring that was already developing, “Well, you’ll never be a bikini model.”

To this day, the lesions keep coming, sometimes one at a time, sometimes in clusters. They are typically about the size of a nickel, and they are red, angry, and painful. She gets them at her axillae, her inguinal line, in the gluteal fissure, and along the bra line and under her breasts. They are usually filled with blood and exudate. Sometimes they are so painful that she picks at them to relieve the pressure, and this has caused significant scarring. And even when her boils are not active, she has permanent scars and discolored areas.

Vicki’s recent diagnosis gives her some new tools: She has found a community of other patients and a doctor who is familiar with this situation. Her next challenge is to find some treatment options that might help her control this very difficult, common, mysterious, and frustrating condition.

Sweat Gland Review

To describe and define HS, we need to do a quick review of sweat glands. Humans have two types of sweat glands: apocrine glands and eccrine glands. Eccrine glands are distributed all over the body, and they open directly onto the surface of the skin. The sweat they secrete is typically odorless.

Apocrine glands, by contrast, are located specifically in areas where hair follicles are numerous. They connect to hair follicles and use those passageways to release their secretions to the skin. Sebaceous glands, which secrete sebum, are also located at hair follicles, but they are separate from apocrine glands. This distinction is important to understand HS.

What is Hidradenitis Suppurativa?

Many experts describe HS as a defect in the follicular epithelium. Others suggest that it starts with apocrine gland obstruction, and follicular damage is secondary. Most agree that it does not involve infected sebaceous glands, which differentiates it from common acne or folliculitis.

Whatever the root of the problem, the result is painful inflammation, abscesses that fill with blood and pus from local skin bacteria, and extensive scarring. If the lesions are large and deep, channels may form between the abscesses (these are fistulae) and to the skin (these are sinuses). These lesions are located where apocrine glands are most numerous: around the groin, the axillae, and under the breasts. It occasionally occurs on the scalp. And for people who are prone to this disorder, it can develop in areas of frequent skin friction, like around the neck or the waistband of trousers.

HS is surprisingly common, affecting between 0.5 and 4 percent of the population. It occurs in women more often than men by a ratio of about 4:1. It usually arises in late adolescence or early adulthood; it is rare in young children, and it seldom develops after age 40. Many people, including Vicki, have HS for many years before realizing it is not just a severe form of acne that affects the armpits and groin.

Pathophysiology of Hidradenitis Suppurativa

When a condition accumulates a lot of names over its history, this often indicates that scientists have struggled to understand it. HS is an example; it has been recognized as a condition since 1839, and since then it has been called Velpeau’s disease, Verneuil’s disease, acne conglobate, acne inversa, Fox-den disease, pyoderma sinifica fistulans, and several other names, and we still don’t have a full understanding of how it comes about.

The causes of HS are unknown. It appears to be multifactorial, with genetic components (about one-third of patients report a family history), some dysregulation in the immune system response to bacteria in the skin microbiome, and there may also be a hormonal element: high estrogen levels appear to suppress outbreaks.

In recent years, HS has been proposed as an autoimmune disease, but experts who study this carefully suggest it is an autoinflammatory condition, which has some different implications, especially for treatment options.

Author’s note: The distinction between autoimmune and autoinflammatory conditions is new to me, and I explore it in more detail in the video that accompanies this article.

HS has some predictable comorbidities—other diseases that occur along with it—and these may give some hints about systemic patterns in inflammation. People with HS are more likely than others to have heart disease, type 2 diabetes, and metabolic syndrome. Joint pain and arthritis near the affected areas are common. Patients are especially vulnerable to Crohn’s disease, psoriasis, and various inflammatory conditions of the spine. Being overweight appears to increase both the risk and severity of this condition, and smoking has also been seen to make it worse.

Signs and Symptoms

HS lesions start with redness and pain. As the cysts grow, which can take place over just a few hours, they may fill with blood, pus, or other tissue exudate. The skin over the top of these abscesses may become stretched and tight. Older lesions may look like discolored bumps or nodules.

HS cysts cause significant scarring, which can be deep and extensive enough to limit normal range of motion, especially at the axilla.

The diagnostic criteria for HS include the appearance of the typical lesions: nodules, abscesses, sinus tracts, and scarring. These must appear at the axillae, the groin, or under the breasts. HS is also identified by the fact that these lesions frequently recur, with at least two episodes within six months.

The severity of HS is sometimes ranked as Hurley Stages (named for the researcher who defined them). Hurley stage 1 involves solitary or multiple lesions, isolated abscesses, but no scarring or sinus tracts. Hurley stage 2 involves recurring abscesses, widely separated lesions, and scarring where wounds have healed. And Hurley stage 3 shows widespread involvement, with multiple interconnected abscesses and sinus tracts.

The abscesses and cysts seen with HS can resemble other skin problems like boils or folliculitis, but they have some important differences. Many boils involve aggressive and contagious bacteria, but the bacteria in HS lesions tend to be less aggressive and more opportunistic. Further, skin infections like boils or acne involve an infection of the sebaceous glands, which does not describe HS. And while typical boils resolve with appropriate antibiotic use, antibiotics alone are not usually successful for HS.

Treatment Options

Treatment for HS begins with home care: warm compresses, good hygiene, and wearing loose-fitting, non-irritating clothing. Weight loss and stopping smoking are high priorities. Weight loss can be problematic, since skin friction from exercise can be painful and can trigger new lesions.

Medication to manage this condition includes antibiotics, along with retinoids to regulate epithelial cell growth, corticosteroids for inflammation, estrogen derivatives, and some biologic drugs that alter immune system activity. No single medication strategy seems to work for most patients, and many people with HS find that a medication may help for a while, and then it becomes less effective. It can be a frustrating process.

Other interventions can include laser hair removal to suppress follicle activity, and a variety of surgeries to lance the abscesses or fully remove them. These surgeries can deal with current lesions, but they are not curative: New abscesses may still arise in the same location. At this point, HS has no reliable treatment protocol or cure.

“It’s just a pimple! It’s something that we should be able to fix. It’s not a tumor. It’s blood, pus, and skin—why can’t we figure this out?”

                                                                 —VSW

What Does This Mean for Massage?

This condition is physically and emotionally painful. It can negatively impact the way a person feels about their body and self-worth. And this can influence whether they feel they deserve massage or are willing to risk having another person see their scars.

“When you have this kind of pervasive imperfection all the time, it’s a constant reminder that you’re flawed in some way, in a way that feels unclean.”

                                                                 —VSW

Because this condition is often undiagnosed, and people can feel ashamed and self-conscious about it, many people with HS may simply avoid massage or try to explain their lesions in a way that doesn’t feel embarrassing.

“When I have something open or draining, I don’t get a massage. I don’t want to leave a bloodstain or any seepage on the sheets. When I just have a big cyst or dark spot, I’ll say it’s a spider bite. I don’t know how many ‘spider bites’ I’ve had over the years.”

                                                                 —VSW

We rely on our clients to give us a full picture of their health history, but this is something people may choose not to share—either because they don’t know what it is or because they are uncomfortable about it.

“I haven’t told my massage therapists I have it, because until six months ago, I didn’t know what it was. Before I had a name for it, I would be like, in my head, ‘I’m a dirty, gross person and I have a zit there, so don’t touch that.’”

—VSW

It’s a safe bet that many massage therapists are not familiar with HS. The presence of active, pus-filled boils can be alarming, since most of the time we associate these with highly contagious and potentially dangerous bacterial infections. And even though HS is not contagious, and the bacteria involved tend not to be aggressive, any open lesion is at least a local contraindication, of course. Fortunately, the abscesses usually occur in places we don’t usually see or touch during a massage: the inguinal line, the groin, and under the breasts. An exception is the axillae—the scarring these lesions cause in the armpits can limit the pain-free range of motion of the arm, plus, the client may not be willing to expose that part of their body.

“When you take my arm up over my head, there it is: you’re going to see all of it.”

—VSW

Are there any benefits we can offer to clients with HS? Yes, but they are benefits for the whole person, not specifically addressed to this difficult condition. We can respectfully appreciate this client who has put themselves into our hands. We can, like no other health-care provider, offer educated, compassionate, nonjudgmental, nonpainful, supportive touch. We can help people become lovingly reacquainted with their whole body—not just the unscarred parts. 

In a practical sense, working with a client who has active HS presents some special challenges. Although this condition isn’t contagious, the possibility of open or ruptured lesions requires we be prepared to reschedule or have some first-aid tools handy: gauze or bandages just in case a lesion opens during the session. One way to minimize this chance is to ask our clients to cover any delicate, high-pressure boils when they come for massage. The risk to us is getting stains on our sheets that are difficult to remove. The risk to our clients is much greater: These open lesions may be exposed to secondary infection. 

Along with these practical suggestions for how to offer safe, effective massage for clients with HS, Vicki offers some ideas about what not to do:

• Don’t tell me it’s from what I’m eating.

• Don’t tell it’s from my soap.

• Don’t tell me your special lotion is going to fix it.

• Don’t even think you understand it. If you don’t have it, you don’t understand it.

HS is common and it seriously impacts the quality of life for people who have it. Massage therapy won’t help it improve, but it also won’t make it worse (if we are careful). More to the point, people with HS deserve to feel strong, powerful, and worthy of excellent self-care. With just a few adjustments designed to improve our clients’ sense of safety, we can be part of the coping skills of the many people who live with this difficult and frustrating condition.

Resources

American Academy of Dermatology Association. “Hidradenitis Suppurativa: Diagnosis and Treatment.” Accessed February 2021. www.aad.org/public/diseases/a-z/hidradenitis-suppurativa-treatment.

Colino, Stacey. HealthCentral. “When It’s Not Just HS.” February 18, 2020. www.healthcentral.com/article/hs-comorbidities.

Constantinou, C. A., G. E. Fragoulis, and E. Nikiphorou. “Hidradenitis Suppurativa: Infection, Autoimmunity, or Both?” Therapeutic Advances in Musculoskeletal Disease 11 (2019). https://doi.org/10.1177/1759720X19895488.

Dellwo, Adrienne. Verywell Health. “Autoinflammatory vs. Autoimmune: Dysfunction in Different Immune Systems.” June 1, 2021. www.verywellhealth.com/autoimmunity-vs-autoimmune-5181168.

El-Shebiny, Emad M. et al. “Bridging Autoinflammatory and Autoimmune Diseases.” The Egyptian Journal of Internal Medicine 33, no. 1 (2021): 11. https://doi.org/10.1186/s43162-021-00040-5.

“Hidradenitis Suppurativa.” NORD (National Organization for Rare Disorders). Accessed February 2022. Available at: https://rarediseases.org/rare-diseases/hidradenitis-suppurativa/.

Jovanovic, Marina. Medscape. “Hidradenitis Suppurativa.” Updated November 20, 2020. https://emedicine.medscape.com/article/1073117-overview.

Lee, E. Y. et al. “What is Hidradenitis Suppurativa?” Canadian Family Physician Medecin De Famille Canadien 63 (2017): 114–20.

Jovanovic, Marina. Medscape. “What is the Historical Understanding of Hidradenitis Suppurativa (HS)?” Updated November 20, 2020. www.medscape.com/answers/1073117-30764/what-is-the-historical-understanding-of-hidradenitis-suppurativa-hs.

McGonagle, Dennis and Abdulla Watad. “Autoinflammatory Disorder.” Rheumatology Advisor. 2017. www.rheumatologyadvisor.com/home/decision-support-in-medicine/rheumatology/autoinflammatory-disorder.

Narla, S., A. B. Lyons, and I. H. Hamzavi. F1000Research. “The Most Recent Advances in Understanding and Managing Hidradenitis Suppurativa.” https://doi.org/10.12688/f1000research.26083.1.

National Institute of Arthritis and Musculoskeletal and Skin Diseases. “Autoinflammatory Diseases.” January 2017. www.niams.nih.gov/health-topics/autoinflammatory-diseases.

Panter-Fixsen, Denise. Hope for HS. “My Understanding of Auto-Inflammatory vs. Autoimmune: What is the Difference?” March 18, 2019. www.hopeforhs.org/auto-inflammatory-vs-autoimmune.

Saunte, Ditte Marie Lindhardt and Gregor Borut Ernst Jemec. “Hidradenitis Suppurativa: Advances in Diagnosis and Treatment.” JAMA 318 (November 28, 2017): 2019–32. https://doi.org/10.1001/jama.2017.16691.

Wipperman, J., D. A. Bragg, and B. Litzner. “Hidradenitis Suppurativa: Rapid Evidence Review.” American Family Physician 100, no. 9 (2019): 562–69. https://pubmed.ncbi.nlm.nih.gov/31674740.