Hidradenitis suppurativa is a chronic inflammatory skin condition that causes painful lumps, abscesses, and scarring in areas where skin rubs together, profoundly affecting both physical comfort and emotional wellbeing throughout a person’s life.

Understanding the Long-Term Outlook

When someone receives a diagnosis of hidradenitis suppurativa, one of the first questions that comes to mind is what the future holds. This is a deeply personal concern, and understanding the prognosis can help individuals and their families prepare emotionally and practically for what lies ahead.^[1]

Hidradenitis suppurativa, often called HS, is a lifelong condition without a cure at this time. Most people experience it as a cycle—periods when the skin breaks out in painful lumps and abscesses, followed by times when the skin clears somewhat or completely. For some individuals, breakouts happen every few weeks, while others may enjoy months of relatively clear skin between flares. The unpredictability of these cycles can be one of the most challenging aspects of living with this condition.^[18]

The condition typically begins after puberty, most commonly during the teenage years or early twenties, though it can also develop later in life during someone’s forties or fifties. Many people find that HS persists for decades, affecting them throughout their adult years. Some women notice their symptoms improve or even disappear after menopause, though this isn’t guaranteed for everyone.^[1][4]

While there is no definitive data on life expectancy for people with hidradenitis suppurativa specifically, the condition itself is not typically considered life-threatening. However, the chronic pain, repeated infections, and the emotional burden of managing symptoms can significantly affect overall quality of life and wellbeing over time.^[2]

How the Disease Progresses Without Treatment

Understanding how hidradenitis suppurativa develops and changes over time can help people recognize the importance of seeking treatment early. The condition is called progressive, which means it often gets worse as time goes on if left unmanaged.^[13]

The disease usually begins with what might look like a simple pimple or small, tender lump under the skin. These initial lumps tend to appear in areas where skin naturally rubs against skin—the armpits, groin, under the breasts, around the buttocks and anal area, or between the inner thighs. At first glance, someone might mistake these for regular pimples or ingrown hairs, which is why many people don’t seek medical attention right away.^[1][5]

What makes HS different from ordinary acne becomes clear as the condition progresses. A small lump can transform into a large, deep, painful boil within just days or even hours. When these boils rupture beneath the skin’s surface, inflammation and infection spread quickly through the surrounding tissue, causing new lumps to form nearby. This creates a pattern where breakouts tend to happen repeatedly in the same general areas of the body.^[1]

Over time, without proper treatment, the lumps may not fully heal between episodes. They can break open and drain fluid and pus, which may have an unpleasant odor. As this cycle repeats, narrow channels called sinus tracts or tunnels begin to form under the skin. These tunnels connect different areas of inflammation and can break through to the skin’s surface, creating drainage points. The repeated inflammation and healing process leads to thick, rope-like scars that can make the affected skin less flexible and more uncomfortable.^[2][5]

In the early stages of HS, someone might have only one or a few lumps affecting a single area of the body. This is considered mild disease. Without treatment, the condition can progress to moderate disease, where lumps recur more frequently, break open repeatedly, and begin affecting multiple areas of the body. In severe cases, widespread lumps, extensive scarring, tunnel formation, and chronic pain can develop, sometimes making it difficult to move normally or carry out daily activities.^[3]

The key message here is that early intervention matters tremendously. Treatment can help keep HS from progressing to more severe stages and can significantly reduce the frequency and intensity of flare-ups. The earlier someone begins appropriate treatment, the better the chances of preventing the most serious symptoms and complications.^[8]

Possible Complications That May Arise

Living with hidradenitis suppurativa carries the risk of several complications, especially when the disease is not well-controlled or has been present for many years. Understanding these potential problems can help people recognize warning signs and seek appropriate care promptly.

One of the most concerning complications is secondary bacterial infection. When the lumps and abscesses break open and drain, bacteria can enter the wounds, leading to more widespread infection. This is different from the underlying inflammation that causes HS itself—it’s an added layer of infection that can make symptoms worse. A bacterial infection called cellulitis can develop, causing increased redness, warmth, swelling, and pain in the affected area. In rare but serious cases, bacteria can enter the bloodstream, leading to a life-threatening condition called sepsis, which requires immediate emergency medical treatment.^[11]

Chronic inflammation from HS can also affect the body’s lymphatic system, which is responsible for draining fluid from tissues and fighting infections. When lymphatic vessels become damaged or blocked by repeated inflammation and scarring, fluid can build up in the affected area, causing persistent swelling. This complication makes healing even more difficult and can increase discomfort.^[11]

Another potential complication is the development of abnormal connections called fistulas. These are tunnel-like passages that can form between the inflamed skin areas and other body structures, such as the bowel or bladder. Fistulas are more likely to occur when HS affects the groin, perianal, or perineal areas. They can cause additional drainage problems and increase the risk of infection spreading to internal organs.^[11]

Long-standing HS, particularly when severe, can lead to significant scarring and tissue damage. The thick, fibrous scars that develop can restrict movement, especially when they occur in areas like the armpits or groin. This limitation in mobility can affect a person’s ability to work, exercise, or perform daily activities comfortably.

People who have had HS for many years, particularly with chronic, non-healing wounds, face a small but real risk of developing a type of skin cancer called squamous cell carcinoma in the affected areas. While this is rare, it highlights the importance of regular monitoring and follow-up care with healthcare providers.^[11][18]

Another important concern is anemia, which means having too few healthy red blood cells to carry adequate oxygen throughout the body. Chronic inflammation, repeated infections, and ongoing blood loss from draining wounds can all contribute to anemia, leaving someone feeling persistently tired and weak.^[11]

Research shows that people with hidradenitis suppurativa are more likely to have certain other health conditions alongside HS. These include severe acne, excessive hair growth (called hirsutism), arthritis (joint inflammation), heart disease, diabetes, obesity, and inflammatory bowel diseases like Crohn’s disease. Doctors aren’t entirely sure why these conditions often occur together, but it may be related to shared inflammatory processes in the body. Managing HS well may help reduce the risk or severity of these related conditions.^[5][18]

Impact on Daily Life and Wellbeing

Hidradenitis suppurativa affects far more than just the skin. The physical symptoms—pain, drainage, odor, and visible scarring—combine with emotional and social challenges to create a burden that touches nearly every aspect of daily life.

The physical pain associated with HS can be constant for some people, while others experience it mainly during flare-ups. Large, deep nodules and abscesses are often extremely painful. Depending on where they’re located, they can make sitting, walking, or raising the arms uncomfortable or even impossible. Simple activities like getting dressed, going to work, exercising, or spending time with friends can become difficult challenges. Some people find they need to modify how they dress, choosing loose-fitting, breathable clothing to reduce friction and irritation in affected areas.^[1][15]

The unpredictability of flare-ups adds another layer of difficulty. Not knowing when the next breakout will occur makes it hard to plan activities, travel, or commit to social events. Some women notice their symptoms worsen before their menstrual periods, while pregnancy and breastfeeding may bring temporary relief for others. This unpredictability can create constant worry and stress.^[18]

The emotional and psychological impact of HS is profound and should not be underestimated. The condition commonly affects intimate areas of the body, which can cause embarrassment and shame. The drainage and odor that can occur when lesions break open may make people feel self-conscious about being close to others. Many individuals report feeling anxious about others noticing the smell or seeing stains on their clothing. These concerns can lead to social isolation, as people may withdraw from activities, relationships, and situations where they fear judgment or exposure.^[1][2]

Intimate relationships and sexual activity can be significantly affected when HS involves the groin, genital, or buttocks areas. Pain, scarring, drainage, and feelings of embarrassment may make physical intimacy difficult or impossible. Partners may struggle to understand the condition, and people with HS often worry about how their condition will affect their relationships. Open, honest communication with partners becomes essential, though it can be challenging to initiate these conversations.^[15]

The chronic nature of HS, combined with the pain, unpredictability, and social challenges, puts people at high risk for depression and anxiety. Studies show that people living with hidradenitis suppurativa experience rates of depression and anxiety significantly higher than the general population. The constant cycle of flare-ups and healing, the lack of a cure, and the uncertainty about the future can leave people feeling hopeless and overwhelmed. Mental health support is an important part of comprehensive HS care.^[3]

Work and career can also be affected. Severe pain, fatigue from chronic inflammation, frequent medical appointments, and time needed to manage wound care can all interfere with work attendance and performance. Some people find they need to request accommodations at work or may need to reduce their hours or change jobs to manage their condition better.

Despite these challenges, many people with HS find ways to adapt and maintain a good quality of life. Learning about the condition, finding effective treatments, connecting with others who understand, and developing coping strategies all help. Self-care practices like stress management, wearing appropriate clothing, maintaining skin hygiene, and working closely with healthcare providers can make a significant difference in managing the impact of HS on daily life.^[16][17]

Supporting a Loved One: What Families Should Know About Clinical Trials

When someone you love is living with hidradenitis suppurativa, you naturally want to help them find the best possible care. Clinical trials represent an important option for some people with HS, offering access to new treatments that aren’t yet widely available and contributing to research that will help future patients.

Clinical trials are research studies that test new treatments, medications, procedures, or combinations of therapies to determine if they are safe and effective. For hidradenitis suppurativa, clinical trials might involve testing new drugs that target inflammation, different types of antibiotics, surgical techniques, laser therapies, or other innovative approaches. Because HS is a chronic condition without a cure, ongoing research is essential for developing better treatment options.^[3]

Family members can play a crucial role in helping their loved one explore clinical trial options. Start by having open conversations about clinical trials as a possibility. Some people may be interested but unsure about how to find information, while others may have concerns or misconceptions about what participation involves. Your support in researching options, asking questions, and weighing the pros and cons together can be invaluable.

To find clinical trials for hidradenitis suppurativa, families can work together to search online databases. Resources like ClinicalTrials.gov, a service of the U.S. National Institutes of Health, maintains a comprehensive database of clinical studies happening around the world. Searching for “hidradenitis suppurativa” will show current trials, their locations, eligibility requirements, and contact information. The person’s dermatologist or other healthcare providers may also know about trials recruiting participants in your area.^[3]

Understanding what participation involves helps families make informed decisions together. Clinical trials have specific eligibility criteria—requirements that participants must meet to join the study. These might include factors like the severity of HS, what treatments someone has tried previously, other health conditions, age, and location. Not everyone with HS will qualify for every trial, and that’s okay. The research team will carefully review whether someone is a good match for a particular study.

Before anyone joins a clinical trial, they go through a process called informed consent. This involves receiving detailed information about the study’s purpose, procedures, potential risks and benefits, time commitment, and alternatives. Take time to read this information carefully together. Make a list of questions and attend appointments together if your loved one would like support. Don’t hesitate to ask the research team to clarify anything that’s unclear—understanding what to expect is essential.

Practical support from family members can make participation in clinical trials much easier. Help with transportation to and from appointments, which may be frequent during the study period. Offer to help track symptoms, medication schedules, or side effects if your loved one finds this helpful. Be available to talk through concerns or experiences as the trial progresses. Simply knowing that someone cares and is there to help can reduce the stress of participating in research.

It’s also important for families to understand that clinical trials are voluntary, and participants can withdraw at any time for any reason. If the trial treatment isn’t working, causes uncomfortable side effects, or if your loved one simply decides they want to stop, that choice will be respected. The person’s regular healthcare team will continue to provide standard care throughout the trial and after.

Families should also be aware that while clinical trials offer potential benefits—such as access to cutting-edge treatments and close monitoring by specialized medical teams—there are also possible risks. New treatments may not work as hoped, or they might cause unexpected side effects. Some trials involve placebos, meaning some participants receive an inactive treatment rather than the experimental one being tested. The informed consent process will explain these possibilities clearly.

By supporting your loved one in exploring clinical trial options, you’re helping them take an active role in their care while contributing to research that could benefit countless others living with hidradenitis suppurativa in the future. Your encouragement, practical help, and emotional support make a real difference in their journey with this challenging condition.