A Deep Dive into the Unseen Pain of Hidradenitis Suppurativa and the Path to True Healing

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My name is Jaap, and I am a biomedical scientist that also used to live with severe Hidradenitis Suppurativa, the kind that takes over your life. Today, I am completely asymptomatic because I learned how to heal Hidradenitis Suppurativa from within. More importantly, I’ve had the privilege of helping many other individuals with HS get their lives back too.

Introduction: Hidradenitis Suppurativa is More Than a Skin Disease

The experience of living with Hidradenitis Suppurativa (HS) is often a silent one, a battle fought in private. Yet, in the quiet corners of online forums, the raw, unfiltered truth of this disease is shared in a collective cry of anguish. Individuals describe a condition that has become a detriment to their quality of life.

The pain can be so profound that it dictates the most basic human functions, forcing one to sleep with a balled up blanket in between my legs to find a moment’s peace. This statement cuts deep because that is how I needed to sleep before solving this issue ones and for all. One patient, searching for a way to articulate the severity, states that the pain of an HS abscess ranks up there with kidney stones and childbirth on the pain scale“. These are not mere descriptions of discomfort; they are testimonials of a level of suffering that fundamentally alters one’s existence.

My name is Jaap. I am a biomedical scientist with a PhD, but more importantly, I am a healed naturally from of severe Hidradenitis Suppurativa. I have lived the reality behind those words. My scientific training became my personal lifeline, allowing me to deconstruct this disease not just in the scientifically, but within my own body as well. The central, undeniable truth is that the extreme, debilitating pain of HS is not just a symptom. It is the body’s loudest, most desperate smoke alarm, signaling a deep, systemic, body-wide inflammatory fire that is out of control. Conventional medicine, with its focus on medications and surgery, is exceptionally skilled at silencing that alarm. It can offer temporary quiet, but it rarely addresses the source of the blaze.

This report is a deep dive into the science of that pain. We will explore why it is so uniquely severe by examining its origins deep within the skin. We will confront its devastating psychological toll, a direct consequence of the physical agony. Finally, we will challenge the conventional symptom-management paradigm and illuminate a different path, a path focused on extinguishing the inflammatory fire from within, the only way to achieve true, lasting relief and reclaim a life defined not by pain, but by vitality.

Section 1: The Anatomy of Agony and Deconstructing the Pain of HS

To understand why the pain of HS is so profound, we must first understand that this is not a superficial skin issue. The battle does not begin on the surface, in the epidermis, like many other dermatological (skin) conditions. The war of HS is declared deep within the dermis, the second, thicker layer of skin, a landscape very rich with nerves, blood vessels, and the very structures that give our skin its resilience.

1.1 A Battleground Deep in the Dermis

The primary event in the pathogenesis of HS is follicular occlusion, the blockage of a hair follicle. This process begins deep in the dermis, where the follicle becomes clogged with keratin (a type of protein) and cellular debris. The pressure builds until the follicle (sack where there hair sits in) wall ruptures, spilling its contents directly into the highly sensitive dermal tissue.

Fig 2. The progression of a Hidradenitis Suppurativa lesion. This illustration outlines the proposed stages of how HS develops under the skin. The process begins with (1) Follicular occlusion, where a hair follicle becomes blocked by a keratin plug, causing it to swell and dilate. Next, (2) the follicle ruptures, releasing its contents into the surrounding tissue and triggering an intense inflammatory response that forms painful nodules and abscesses. Over time, this recurring cycle can lead to (3) a chronic state characterized by the formation of interconnected tunnels (sinus tracts) and deep, permanent scarring, establishing the long-term nature of the condition.

This rupture is the inciting incident. The body’s immune system perceives the released keratin and bacterial components as a foreign invasion and launches a massive, overwhelming inflammatory response. A storm of inflammatory messengers, known as cytokines, including Tumor Necrosis Factor-alpha (TNF−α), Interleukin-1 beta (IL−1β), and Interleukin-17 (IL−17), are recruited to the site. This is not a controlled, measured response; it is a chaotic, all-out immunological war.

This cytokine storm leads to the formation of pus-filled abscesses, the recruitment of more immune cells, and the literal dissolution (breaking down) of healthy tissue, which over time carves out the draining tunnels (sinus tracts) that are a hallmark of the disease. The pain is a direct signal of this intense, tissue-destroying battle happening far beneath the surface.

1.2 The Two Faces of Pain: Nociceptive Fire and Neuropathic Damage

The unique severity of hidradenitis suppurativa pain stems from the fact that it is not one-dimensional. It is a complex, mixed-pain phenotype, a devastating combination of two distinct types of pain occurring simultaneously.

First is nociceptive pain, which can be thought of as the fire of acute inflammation. This is the normal pain response to tissue injury. The inflammatory soup of cytokines and other chemical mediators released during a flare directly stimulates specialized pain receptors called nociceptors in the dermis. This is what causes the intense, throbbing, aching, and constant pain that defines an active HS lesion. It is the body’s appropriate, albeit agonizing, response to the ongoing tissue destruction.

Second, and critically, is neuropathic pain, which can be understood as the damaged wires of the nervous system. The chronic, unrelenting inflammation of HS does more than just destroy skin tissue; it physically damages and alters the delicate network of peripheral nerve endings within the dermis. This nerve damage leads to a pathological pain state where the nervous system itself becomes a source of pain signals. Patients describe this pain with classic neuropathic terms like shooting, burning, stinging, and even “blinding“.⁸ This is not the pain of an active injury, but the pain of a malfunctioning, damaged electrical system sending false and amplified signals to the brain.

Objective scientific evidence for this nerve damage comes from studies using Quantitative Sensory Testing (QST), a method that precisely measures sensory responses. These studies reveal a paradoxical and telling combination of sensory changes in HS lesions:

• Hyposensitivity (Nerve Destruction): Patients often show a decreased sensitivity to stimuli like innocuous cold, warmth, and light touch. This indicates that some nerve fibers have been completely destroyed by the chronic inflammatory process.
• Hypersensitivity (Nerve Sensitization): Simultaneously, patients exhibit extreme sensitivity to deep pressure and pinpricks. This is a state of hyperalgesia (an amplified response to a painful stimulus) and allodynia (pain caused by a stimulus that does not normally provoke pain). This explains why the slightest friction from clothing, the pressure of sitting in a chair, or a gentle touch can be excruciating for someone with HS.

This combination of ongoing inflammatory pain and chronic neuropathic pain from permanent nerve damage explains why the suffering is so constant, complex, and resistant to conventional painkillers. Standard analgesics may slightly dampen the inflammatory fire, but they do little to repair the damaged neurological wiring. HS is not simply an inflammatory disease that causes pain; it is a neuro-inflammatory disease that actively destroys and rewires the peripheral nervous system in the skin. This understanding elevates the urgency of an approach focused on stopping the inflammation itself, as it is the only way to prevent further, irreversible nerve damage.

1.3 Pain by the Numbers: A Stark Comparison

Hidradenitis suppurativa (HS) is exceptionally painful compared to many other skin diseases due to the deep anatomical location of its inflammation, which directly impacts a dense network of nerves. Unlike superficial conditions like eczema, HS originates in hair follicles located deep within the dermis and even the underlying subcutaneous tissue.

This region is rich with specialized nerve endings and receptors, including Pacinian corpuscles (sensing pressure) and numerous free nerve endings that detect pain. As HS nodules and abscesses form, they create intense pressure and inflammation that directly compress and irritate this dense network of deep nerves. The subsequent chronic scarring and sinus tract formation can lead to persistent nerve entrapment and damage, establishing a cycle of severe, chronic pain that is a hallmark of the disease.

1.4 The Pain-Severity Paradox: Hurley Stages and Acute Flares

It is logical to assume that pain correlates with the clinical severity of the disease, and to a large extent, this is true. The Hurley staging system classifies HS from Stage I (mild, with single or few abscesses) to Stage III (severe, with widespread, interconnected tunnels and scarring).

Studies consistently show that patients with Hurley Stage III report significantly higher average pain scores and greater interference with daily life than those in Stage I. However, this correlation hides a critical nuance. Significant pain is a defining feature of HS even in its earliest, “mildest” stages. One study found that nearly half (48%) of patients with Hurley Stage I still experience moderate to extreme levels of pain. This fact is crucial, as it dispels the dangerous misconception that early-stage HS is not a serious or debilitating condition.

The most profound insight comes from analyzing the pain of an acute flare. Research shows that the peak pain intensity during a flare is exceptionally high and, importantly, does not correlate with a patient’s overall Hurley stage. One study found the average pain level during a flare was a staggering 7.6 out of 10, with nearly a quarter of all patients—regardless of their stage—reporting the “worst imaginable pain” (10/10).

This reveals that the biological process of a single abscess forming, swelling, and rupturing deep within the dermis is a maximal pain event for anyone who experiences it. The progression to higher Hurley stages is not necessarily about the intensity of a single lesion, but rather the accumulation of these traumatic pain events over time and across wider areas of the body.

This relentless cycle of flares is what leads to the extensive tissue destruction, scarring, and chronic neuropathic pain that defines the higher average pain levels of late-stage disease. Therefore, the primary goal for anyone seeking to escape the agony of HS must be to prevent the flares themselves, as each one is a profoundly traumatic event that causes immediate suffering and contributes to the long-term progression of the disease.

Section 2: The Weight of the Wounds – The Psychological Toll of Chronic Pain in Hidradenitis suppurativa.

The relentless, multi-faceted pain of Hidradenitis Suppurativa does not stop at the skin. It radiates inward, inflicting deep and lasting wounds on the psyche. The psychological burden of HS is not a separate comorbidity or an unfortunate side effect; it is a direct, predictable, and inevitable symptom of the disease, driven primarily by the unceasing physical agony and its unique compounding factors.

2.1 From Physical Pain to Mental Anguish: The Depression and Anxiety Link

The statistical link between HS and severe mental health disorders is stark and undeniable. Multiple large-scale studies confirm that individuals with HS are at a significantly higher risk of developing clinical depression and anxiety compared to the general population. The risk for anxiety, depression and suicide are substantially higher in hidradenitis suppurativa patients compared to healthy individuals.

Chronic pain is a well-established independent driver of depression, and the extreme nature of hidradenitis suppurativa pain makes this link particularly strong. Patients experiences vividly illustrate this direct causal chain. One individual shares,

“I am battling a bout of depression because of HS. It’s tough, and I have serious body issues because of it. I hide the pain most of the time, and most people dont’ know how terrible I’m really feeling, including my family“.

sadly other say:

“I usually describe it as dozens of hot marbles underneath my skin.”

“To me it is like a frayed live wire that’s humming pain from the location through the layers of skin and tissue surrounding it.”

“someone stabbing me in my most sensitive areas 😭”

“Like a red hot lead ball in my pit that burns all the way to my finger bones”

“Does anyone else get sudden sharp pain, with no obvious reason? I’m just laying down and all of a sudden feels like a piercing needle. I hate this disease 😭”

“I would definitely describe it as stinging too, but also stinging isn’t powerful enough to describe it!“

“Fire! It feels like someone is taking a lighter and just holding it there.“

Another patient, recounted how the escalating pain eventually made simple daily activities “hell,” robbing him of his ability to work and participate in life, which led directly to a major depressive episode. The pain is not just a sensation; it is a force that dismantles a person’s life, piece by piece, making depression an almost logical consequence.

2.2 The Cycle of Suffering: Pain, Shame, and Isolation

What makes the psychological impact of Hidradenitis Suppurativa so u

niquely devastating is that the severe physical pain is compounded by factors that lead to profound shame, embarrassment, and social isolation. The disease preferentially affects intimate areas of the body, and the unpredictable drainage of foul-smelling pus creates a constant state of anxiety and self-consciousness. This creates a vicious feedback loop: the pain makes it difficult to leave the house, and the shame makes one afraid to.

This cycle has a catastrophic impact on relationships and intimacy. One woman shared her experience with heartbreaking honesty:

“I’ve been married for awhile and though my spouse has never been disgusted by my hs, he fully respects that I don’t want sex when I have flare ups. Hs has definitely affected my libido as I’ve gotten older, not from embarrassment though just because of the general discomfort I feel all day long with open lesions and flares. 💔”.

The disease erects barriers where connection should be, turning moments of potential intimacy into sources of fear and anxiety. The result is a profound sense of isolation.

2.3 If needed seek help! Understanding the Suicide Risk in HS

The tragic culmination of this physical and psychological suffering is a statistic that must be confronted directly and with the utmost seriousness: Hidradenitis Suppurativa is associated with the highest rate of suicide of any dermatological illness. Rigorous studies have confirmed this devastating reality, showing that the risk of completed suicide is more than twice as high in HS patients compared to control populations.

This is more than just a statistic; it is the ultimate, undeniable signal of the depth of suffering this disease inflicts. It is the final, desperate cry from the soul and mind pushed beyond the limits of endurance. This tragic reality serves as the most powerful indictment of a medical system that too often fails to grasp the severity of the patient’s experience, offering treatments that only quiet the “smoke alarm” while the individual is consumed by the fire. It is a desperate call to action for a new paradigm, one that sees the person in their entirety and seeks not just to manage symptoms, but to truly heal the root cause of their suffering.

To effectively treat the depression, anxiety, and suicidality associated with HS, we must first and foremost effectively treat disease itself. A purely psychiatric approach is insufficient if the underlying source of the mental anguish, the disease itself, is not resolved.

Section 3: The Conventional Response—Chasing Symptoms, Missing the Cause

The conventional medical approach to Hidradenitis Suppurativa is a testament to the power of modern pharmacology and surgical technique. It offers tools that can provide significant, and at times life-saving, relief. However, the philosophy underpinning this approach is fundamentally limited. It is a “downstream” model, focused on managing the consequences of the disease rather than resolving its “upstream” cause. It is an approach dedicated to silencing the smoke alarm, often with little regard for the fire that triggered it.

3.1 The “Smoke Alarm” Approach to Pain

The standard medical toolkit for HS pain management focuses on interrupting the signals of distress. This includes:

• Analgesics: Over-the-counter and prescription painkillers that attempt to block the perception of pain.
• Antibiotics: Used to control secondary infections and reduce the acute inflammatory load of a flare, thereby lessening pain.
• Biologics and Immunosuppressants: Powerful drugs designed to target and block specific inflammatory cytokines, like TNF−α, effectively shutting down one of the body’s key alarm pathways.

In the HS Armor philosophy, these interventions are viewed as powerful but temporary shields. They are akin to cutting the wire to a shrieking smoke alarm. The immediate result is relief, the noise of pain and inflammation subsides. However, the underlying fire of systemic inflammation continues to burn silently, day in and day out. This is why, for so many, the relief is temporary. The body can build a tolerance to the drugs, they may stop working, or they may cause significant side effects. As long as the fire rages, it will inevitably find a new way to signal its presence, leading to rebound flares and the relentless progression of the disease.

3.2 Surgery: An Act of Desperation

When medical management fails to control the disease and its associated pain, the final option is often surgery, most notably wide local excision. This procedure involves the removal of all diseased tissue in a given area, including nodules, abscesses, and sinus tracts. It is an invasive and often brutal procedure, with a significant recovery period.

While the medical goal is to remove the physical manifestations of the disease, for the patient, the motivation is often much simpler and more profound: to escape the pain. Surgery and mutilation of the physical body becomes the ultimate act of desperation in the face of life-destroying pain.

This procedure can provide immense relief in the treated area, and many patients are grateful for it. However, it is a local solution to a systemic problem. Wide excision removes the burned-down part of the house, but it does nothing to extinguish the fire that caused the damage in the first place. Consequently, recurrence rates are high, with studies showing that HS returns in over 40% of cases, often in a new location.

The most telling statistic, however, is that patient satisfaction with wide excision surgery is remarkably high, with 76% reporting they are very satisfied, despite the high recurrence rate.

This is not a testament to the curative power of surgery. It is a powerful indictment of the failure of conventional non-surgical HS treatments. It reveals a system where the daily reality of living with HS is so agonizing that an invasive and mutilating procedure with a long recovery and a high chance of failure is still perceived as a vast improvement. This desperation is the direct result of a medical model focused only on the “smoke alarm,” a model that ultimately forces patients toward the most extreme measures to find a moment of peace.

Section 4: The Path to Lasting Relief – Prevent Surgery and Treat Hidradenitis Naturally.

The limitations of the conventional model, its focus on symptoms and its inability to offer a path to true, sustainable remission, necessitate a fundamental shift in perspective. If chasing the smoke alarms of pain and inflammation is a losing battle, then the only logical alternative is to find the source of the fire and extinguish it for good. This is the core philosophy of HS Armor and the foundation of a healing journey that offers not just temporary relief, but the potential for a life reclaimed from disease.

4.1 The Foundational Shift: From Managing Pain to Building Health

The path to lasting freedom from HS pain begins with a crucial mental shift: from passively managing a disease to actively building a foundation of health. The HS Armor philosophy posits that true healing is not about finding the perfect drug to suppress a symptom; it is about creating an internal environment within the body to stop the disease and thereby the pain.

This requires moving our focus from downstream interventions to upstream root-cause resolution. The knowledge that HS is a serious, systemic disease that can even shorten one’s lifespan should not be a source of fear, but a powerful “call to action”. It is the motivation to stop merely managing the disease and start fundamentally healing the body. This approach transforms the patient from a victim of their biology into an empowered detective, armed with the knowledge to identify and address their personal triggers and restore their body’s innate capacity for balance and healing.

4.2 The Pillars of Healing: The HS Armor Protocol

Extinguishing the fire of systemic inflammation is not accomplished with a single magic bullet. It requires a comprehensive, multi-faceted strategy that addresses the foundations of health. The HS Armor community is built upon several key pillars, each designed to systematically reduce the body’s inflammatory burden and support its healing processes:

• Foundational Nutrition: Identifying and removing triggers while providing your body with the nutrient-dense foods it needs to heal and reduce inflammation.
• Strategic Lifestyle Changes: Incorporating practices that reduce systemic inflammation, manage stress, improve sleep, and reduce exposure to environmental toxins and many more.
• Natural Therapies & Skincare: Harnessing the power of nature from both the inside and out. This layer focuses on potent, science-backed natural compounds and supplements that reduce systemic inflammation and support immune balance, key strategies for building your armor internally. This inside-out approach is complemented by targeted natural remedies and skincare routines to soothe the skin, aid wound and scar healing, and manage hidradenitis suppurativa symptoms externally.
• Accountability & Support: Recognizing that this healing journey is challenging. True, lasting change requires personal commitment reinforced by a strong support network. This layer is about staying in contact with Jaap to build resilience, stay on track, and adjust your health plan. Your journey and challenges will also be supported by a community where you can connect with others who understand and can lift you up when you need it most.
• Targeted Medical Testing: We also provide guidance on medical tests you can take to speed up your healing process by identifying key hurdles, triggers, and problems that can arise when dealing with Hidradenitis Suppurativa. We also empower you with information, enabling you to have more effective discussions about treatment options with your medical practitioner.

The goal of this integrated approach is not simply to lessen the pain of the next flare. The goal is to achieve a state of deep, lasting remission where flares cease to occur. By fundamentally changing the body’s internal environment, we can restore its natural balance, making the powerful drugs and brutal surgeries of the conventional path less necessary, or ideally, completely unnecessary. Every body that is mutilated by this disease is one to many.

My own journey from the depths of severe HS to a life completely free of symptoms is a testament to the fact that healing is possible. It is a path that requires moving beyond the conventional model of symptom suppression. It demands the courage to look past the smoke alarms and address the fire itself. True, sustainable relief is found not in a pill or a scalpel, but in the foundational work of rebuilding health from the inside out.

The ultimate goal extends beyond simply living a long life; it is about securing a long healthspan—a life of mobility, energy, and vitality, free from the physical prison of pain and the psychological burden of disease such as axiety and depression.

It is about reclaiming the ability to sit, to walk, to work, and to love without fear. This journey is challenging, but it is a journey of empowerment. By becoming the expert on your own body and systematically removing the triggers of inflammation, you take back control. You are not alone on this path. A community of fellow warriors and the framework of science-based natural healing are here to guide you. Remission is not a distant fantasy. It is a reality that can be built, day by day, choice by choice, starting now.

Important Medical Disclaimer

1. Not Medical Advice: All content and information on this website is for informational and educational purposes only. It does not constitute medical advice and is not a substitute for professional diagnosis, treatment, or consultation with a qualified healthcare provider.

2. My Role and Qualifications: I am a biomedical scientist and PhD candidate and share information from that perspective, combined with my personal experience as a patient with Hidradenitis Suppurativa. However, I am not a medical doctor, physician, or registered healthcare professional. Do not consider our relationship a doctor-patient relationship.

3. Consult Your Doctor: Always seek the advice of your medical doctor or another qualified health professional with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you have read on this website. If you suspect you are experiencing a medical emergency, or a severe infection, do not rely on this website or the HS Armor community, please call your local emergency services or go to the nearest emergency room immediately.

4. A Critical Warning on Medication: Pharmaceutical drugs are a crucial tool in managing Hidradenitis Suppurativa for many people. Under absolutely no circumstances should you ever alter, reduce, or stop taking your prescribed medication without the explicit direction of the doctor who prescribed it. Doing so can be dangerous. Always consult with your doctor before doing anything related to your treatment plan.

5. No Liability: Your use of this website and reliance on any information provided is solely at your own risk.

6. Individual Results May Vary: Every patient’s biological baseline, genetics, and adherence to the protocol is different. Therefore, I cannot guarantee specific results, cures, or timelines for your Hidradenitis Suppurativa.

7. Scientific and Expressive Freedom: The articles published on this blog are distinct from formal peer-reviewed academic literature. They serve as an independent platform for my personal viewpoints, scientific hypotheses, and philosophical reflections as an independent scientist and HS patient. While grounded in biomedical research, I exercise a degree of expressive freedom to translate rigid academic data into insights from a patient perspective. These writings are my personal meditations on the science of HS and should be read as my individual perspective, not as universally accepted clinical consensus or formal peer-reviewed literature.