Hidradenitis suppurativa (HS), also known as acne inversa, is a chronic inflammatory skin condition that causes painful, recurring lumps to form deep under the skin, primarily in areas where skin rubs together, such as the armpits, groin, under the breasts, and on the buttocks. These lesions can progress from small, inflamed nodules to abscesses that may rupture and drain, eventually leading to the formation of tunnels beneath the skin and significant scarring. Successfully managing this disease begins with clear communication with your dermatologist. This article provides guidance on how to prepare for your appointment and communicate effectively to ensure you receive an accurate diagnosis and a tailored treatment plan.
Preparing Your Personal and Symptom History
A thorough understanding of your personal disease history is foundational for diagnosis and treatment planning. HS is a highly variable condition, and your dermatologist relies on your detailed account of its progression. Creating a symptom tracking log before your appointment allows you to present a clear picture of your condition, which is often challenging to recall accurately during the consultation.
Tracking Symptoms
Your log should detail the frequency and duration of flares, the specific body locations affected, and a consistent measure of pain intensity, such as using a 1-to-10 pain scale. Note the characteristics of the lesions, including whether they are firm, deep nodules, draining fluid or pus, and if they have resulted in scarring. If lesions heal before your appointment, taking non-identifying photos of active flares is highly recommended to provide the dermatologist with a visual reference.
Medical and Lifestyle History
The medical background you provide should include a list of all prior treatments you have attempted, regardless of their success, such as topical washes, oral antibiotics, or steroid injections. Mentioning any family history of HS or severe, recurring acne is also important, as genetics can influence the condition. Dermatologists also look for potential triggers, so documenting lifestyle factors can help identify patterns:
- Smoking status
- Recent significant weight changes
- High stress periods
- Flare-ups related to your menstrual cycle
Communicating Effectively During the Examination
Dermatologists regularly treat HS, so being direct and honest about the discomfort and location of your lesions is necessary for an accurate assessment and a productive conversation. Overcoming any hesitation allows the clinician to perform a complete examination.
When describing your lesions, use specific terminology instead of vague terms like “pimples” or “boils,” which can confuse the diagnosis. Dermatologists look for deep-seated nodules, draining abscesses, and the presence of sinus tracts—tunnels that form under the skin, connecting lesions. Clearly articulating the specific type of lesion and the degree of scarring or drainage present helps the physician understand the severity of the disease in various locations.
Physicians often classify HS severity using the Hurley Staging System, which ranges from Stage I (isolated abscesses without tunnels or significant scarring) to Stage III (diffuse involvement with interconnected tunnels and extensive scarring). You should ask the dermatologist to explain your current stage, as this classification guides treatment decisions. Beyond the physical symptoms, be prepared to describe how the condition impacts your daily life, mentioning restrictions in mobility, difficulty wearing certain clothing, interference with sleep, or limitations at work. Providing a concise summary of your prepared notes ensures all points are covered within the limited appointment time.
Key Questions Regarding Treatment and Long-Term Care
Understanding your diagnosis begins with asking the dermatologist to confirm your current Hurley stage and discuss the long-term expectations and prognosis for your condition. HS is a chronic condition, and knowing the typical trajectory for your stage helps set realistic goals for management. This initial discussion provides the context for evaluating treatment options.
Treatment Modalities
Inquire about the full spectrum of treatment modalities, as management often involves a combination approach tailored to the disease stage. Ask about topical treatments, such as antibiotics like clindamycin, often used for milder cases (Hurley Stage I). For moderate to severe disease, discuss systemic options, including oral antibiotics like tetracyclines, and advanced treatments such as biologics, which target the underlying inflammatory process. Biologic therapies, such as adalimumab, are reserved for moderate to severe HS that has not responded to traditional systemic medications.
When discussing each medication, ask about potential side effects, the required monitoring, and how long you should expect to use the treatment before seeing improvement. For long-standing or severe lesions, ask about surgical options, including minimally invasive procedures like deroofing, which removes the “roof” of a tunnel, or more extensive wide excision surgery. Ask whether combining surgery with a biologic might be a suitable strategy, as this approach is often used for severe cases.
Long-Term Management
Focus on long-term management by asking about lifestyle adjustments that can support your treatment plan. These include:
- Specific dietary changes
- Strategies for weight management
- Recommended skincare routines
- Appropriate cleansing or wound dressings
Establish a clear follow-up schedule and ask what symptoms or complications should prompt an urgent call to the office. Inquiring about patient support resources, such as online communities or advocacy groups, can provide emotional support and practical advice for living with the condition.