As we prepare to recognize Hidradenitis Suppurativa Awareness Month this June, we reflect on one of the most challenging and debilitating aspects of this chronic skin disease — the significant pain burden and reduced quality of life that can accompany (and complicate) hidradenitis suppurativa (HS).
A chronic inflammatory skin disease characterized by recurrent painful nodules, abscesses, and sinus tract formation, HS is considered one of the most painful dermatologic conditions. In fact, pain is believed to be the most impactful symptom of HS, making its recognition and management fundamental to effective treatment and long-term disease control.
Furthermore, because HS is known to affect sensitive intertriginous regions, care, treatment, and symptom management may be particularly challenging, often requiring individualized approaches to reduce discomfort and improve patient outcomes.
Beyond the visible physical symptoms, HS has also been associated with higher rates of depression, anxiety, and social isolation, much of which is driven by chronic pain as well as disease unpredictability and stigma.
This week’s post explores the pathophysiology of HS, current treatment methods, as well as some of the most effective pain management strategies available to help patients better manage and cope with their condition. The reality is that HS is more than just a dermatologic condition. It is a chronic inflammatory pain disease with profound physical, emotional, and psychosocial burden.
Disease Pathophysiology
To understand why HS can become so painful, it is necessary to examine the disease process itself and the underlying inflammatory pathways that drive the condition. At its core, HS involves follicular inclusion, immune dysregulation, and chronic inflammatory activity.
The pain experienced in HS can arise from several mechanisms, including inflamed abscesses, nerve sensitization as a result of persistent inflammation, as well as the formation of sinus tracts and scar tissue. As inflammation progresses, patients may experience acute inflammatory pain and chronic neuropathic and nociplastic pain that can be present even between HS flares.
Researchers have identified several inflammatory mediators involved in HS pathogenesis, including tumor necrosis factor-alpha (TNF-α), interleukin (IL)-1, and IL-17 pathways, which helps explain why biologic therapies that target these pathways are becoming increasingly important in disease management.
Treatment Approaches
With no current cure for HS, the goal is to manage its symptoms, reduce flare ups, prevent complications, and improve quality of life. In order to achieve these objectives, treatment plans often require a multimodal and personalized approach.
Treatment options for HS have historically included topical and systemic drug therapies, surgical interventions, adjuvant therapies, and lifestyle modifications. Due to its complexity and variability, many treatment plans incorporate a combination of therapies in order to better manage patient symptoms and improve long-term outcomes.
For mild-to-moderate HS, topical and oral antibiotic regiments can help to reduce the inflammation and bacterial growth associated with the disease. Intralesional corticosteroids may also play a role in reducing inflammatory flares.
For more moderate or severe cases, biologic therapies have become increasingly important. Therapies such as adalimumab, TNF-α inhibitor, became the first FDA-approved biologic for HS and has demonstrated significant reductions in inflammatory lesions in clinical trials. Additional biologic therapies that target IL-17 and IL-23 pathways, such as secukinumab and bimekizumab, are also continuing to emerge as promising treatment options.
Lifestyle modifications are often underplayed but can also play a critical role in disease management. Factors such as weight management, stopping smoking, stress reduction, and an anti-inflammatory diet can help to decrease flare up frequency and improve overall disease control.
Pain Management
In a global survey of patients with HS, a total of 61.4% of participants rated their HS-related pain as moderate or higher on the Numeric Rating Scale (NRS) for pain. Additionally, the worst possible pain (an NRS score of 10) was reported by 4.5% of participants, while only 9.0% of study participants described no pain (NRS score 0).
HS pain is a complex clinical challenge, with patients known to experience multiple pain types including nociceptive, neuropathic, and nociplastic pain. According to research, nociceptive pain in HS is localized to skin lesions and is believed to be a result of inflammatory tissue damage. Neuropathic pain, which occurs in approximately 30% of patients with HS, results from damage to peripheral nerves. Finally, nociplastic pain results from altered central pain processing and occurs in approximately 36% of patients with HS.
With such complexity, finding ways to manage symptoms and work simultaneously to address the underlying inflammation is essential to helping patients cope with chronic pain.
According to a review published in the Journal of the American Academy of Dermatology, “patients with chronic HS pain often suffer from multiple pain types and may, therefore, benefit from a multimodal strategy that includes long-term disease control, pharmacologic analgesia, and nonpharmacologic strategies.”
The authors go on to note that these patients may also “benefit from an integrative palliative care approach which provides holistic symptom management and support for those with serious illnesses.”
Pain management strategies may also include NSAIDs, neuropathic pain medications like gabapentin, warm compresses, wound care support, stress management, and behavioral health interventions. Controlling the underlying inflammatory disease often remains one of the most effective ways to reduce the burden of pain.
Quality of Life Impact
As with many chronic inflammatory conditions, HS has a profound impact on an individual’s quality of life. Data from the Global Survey of Impact and Healthcare Needs (VOICE) Project reported that most participants stated that HS impacted their lives “moderately” (27.2%) or “very much/extremely” (43.3%).
A further study, which evaluated the burden of HS symptoms, found that “higher intensity of a sign or symptom correlated with poorer general quality of life (QoL) or specific QoL dimensions including sexual distress, anxiety, depression and sleep.” That same study concluded that “pain might be the symptom most related with impairment in QoL due to its high frequency and subjective component.”
Unfortunately, the burden of HS extends well beyond physical discomfort and can significantly interfere with daily life.
Patients in a qualitative study examining HS pain experiences described the condition in deeply personal and emotional terms:
“My pain…can sometimes be like a burning sensation… like a lot of little bee stings, or just like a fire…My armpits are affected with HS, but my whole arm can feel like it’s on fire.”
“I was a barista, and I had to quit doing that because I couldn’t do the reaching. I couldn’t do the lifting. I couldn’t wipe the tables. I can’t really sweep or mop very well. Anything that’s kind of like a back and forth movement of the arms will be very difficult.”
“Sleeping is a task. Lying down is hard in general. When my body is in the upright position, I can control the pain. Honestly, even when I'm lying down… I can just kind of control the pain long enough for me to go to sleep.”
Wound Care
Due to the chronic and recurrent nature of HS, daily wound care is essential for reducing secondary infection risk and minimizing odor, drainage, and discomfort.
Wound care strategies may include the use of non-adherent dressings, antiseptic cleansers, absorbent pads, and careful hygiene practices. Proper wound care can also help improve comfort, maintain mobility, and reduce social anxiety, particularly that which is associated with odor.
Another key factor is patient education surrounding wound management, especially for patients with severe cases.
Multidisciplinary Care
Effective management of HS often requires a multidisciplinary approach that integrates dermatology, pain management, mental health support, wound care, nutrition, and primary care.
Due to the fact that HS affects patients in all aspects of life, including physically, emotionally, and socially, having such a coordinated care model can help alleviate some of the disease burden. It is essential that providers take into account the mental health aspect of the disease, encouraging further support and open communication when needed.
Sources:
- The Burden of Hidradenitis Suppurativa Signs and Symptoms in Quality of Life: Systematic Review and Meta-Analysis
- Pain management in hidradenitis suppurativa
- Patients with hidradenitis suppurativa may suffer from neuropathic pain: A Finnish multicenter study
- Pain Experiences among those Living with Hidradenitis Suppurativa: A Qualitative Study
- Evaluating patients’ unmet needs in hidradenitis suppurativa: Results from the Global Survey Of Impact and Healthcare Needs (VOICE) Project
- Hidradenitis suppurativa
