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HS Disease

Types of Symptoms

Getting familiar with your Hidradenitis Suppurativa symptoms will help you be prepared for a conversation with your doctor.

Understanding Your Hidradenitis Suppurativa Symptoms

Getting familiar with your symptoms can help you feel more prepared when talking to your doctor about your Hidradenitis Suppurativa (HS). While everyone’s experience with HS is unique, recognizing the symptoms early can help with treatment and managing flare-ups.

Common Symptoms of Hidradenitis Suppurativa

HS symptoms can vary from person to person, and they often change over time. The severity and type of symptoms depend on how far along the condition is. Here are some of the most common symptoms people with HS may experience:

  • Painful, Red Bumps: Small, raised, and red lumps that can feel sore or tender to the touch.
  • Skin Sores: These lumps can break open, leading to oozing, sometimes with pus or drainage.
  • Itching or Burning: Many people with HS feel itching, burning, or soreness in the affected areas.
  • Odor: A foul smell can develop from the oozing sores.
  • Dry or Crusty Skin: The skin around the affected area may become dry, scaly, or crusty.

Where Does Hidradenitis Suppurativa Appear?

HS most often shows up in areas where skin rubs against skin. The most common places to see symptoms are:

  • Armpits
  • Groin
  • Buttocks
  • Under the breasts

However, HS can also appear in other places like the face, scalp, rectum, or genital area. If you notice any of these symptoms in other parts of your body, make sure to talk to your doctor.

Cycles and Flare-Ups

HS tends to come and go in cycles. You might notice periods where your symptoms seem to improve, or even disappear (called remission), followed by times when the symptoms flare up again. These flare-ups can be triggered or made worse by certain things, including:

  • Smoking: Smoking can make HS worse.
  • Heavy alcohol use: Drinking too much alcohol can lead to flare-ups.
  • Hot weather: Heat and sweating can increase symptoms, especially during warmer months.

How Lifestyle Changes Can Help

Making small changes to your lifestyle can be tough, but it can help manage your symptoms. Some changes that might improve your condition include:

  • Quit Smoking: Smoking is a known trigger for flare-ups.
  • Eat a Healthy Diet: Eating well-balanced meals can help with overall health and possibly reduce inflammation.
  • Stay Cool: Avoiding extreme heat and sweating can help prevent flare-ups.

While it might feel like these changes take effort, they could lead to fewer or less severe flare-ups over time, making HS easier to manage.

Possible Complications of Hidradenitis Suppurativa (HS)

While managing Hidradenitis Suppurativa (HS) is important to control flare-ups, there are some potential complications that can occur, especially if HS is left untreated or becomes severe. These complications may vary, and not everyone will experience them, but it's important to be aware of them.

1. Scarring and Swelling (Lymphoedema)

One of the most common complications of HS is scarring. As the condition worsens, it can cause thickened, scarred tissue, which can be painful and affect movement. In severe cases, this scarring can lead to swelling in the affected area. For example:

  • If the armpit is affected, it may cause swelling in the arm.
  • If the groin is affected, swelling may occur in the leg.

This swelling is called lymphoedema, and it happens when the body’s lymph fluid (which normally drains away) builds up due to blocked lymph nodes. Lymphoedema can be difficult to treat, and people with this condition may need to wear special compression garments for long periods to help manage the swelling.

2. Fatigue and Feeling Unwell (Malaise)

Some people with HS report feeling generally unwell or tired all the time. This is called malaise, and it can be draining, affecting your daily activities and overall quality of life.

3. Mental Health Challenges (Depression)

Living with HS can be tough, especially during flare-ups when symptoms like pain and oozing may be more severe. Some people with HS experience depression due to the ongoing physical challenges and the impact on their emotional well-being. If you're feeling down, it’s important to talk to your doctor about it—they can help provide support or refer you to a mental health professional.

4. Chronic (Long-Term) Infections

Because HS causes repeated breakouts and skin wounds, it can lead to chronic (long-term) infections. This can sometimes cause other health issues, including:

  • Anemia (low red blood cells)
  • Kidney problems
  • Low protein levels in the blood, which can affect your body’s ability to heal and fight infection.

If you notice persistent or recurring infections, it’s important to get medical help to prevent further complications.

5. Joint Pain and Inflammation (Arthropathy)

Some people with HS may develop joint pain and inflammation, a condition called arthropathy. This can affect your daily activities and cause discomfort, especially in the knees, ankles, and other joints.

6. Skin Cancer (Rare)

While it’s rare, skin cancer has been reported in people with severe, long-term HS. This typically happens in areas that have experienced a lot of damage from chronic inflammation and scarring. Regular check-ups with your doctor and dermatologist can help catch any potential issues early.

7. Fistulas (Very Rare)

In very severe cases of HS, fistulas can form. These are abnormal tunnels or channels (called sinus tracts) that connect one part of your body to another, such as the bowel or bladder. This is a rare complication but can be serious and often requires special treatment.

Hidradenitis Suppurativa: Medication Options

Managing Hidradenitis Suppurativa (HS) with medications can be challenging, but the right treatment can help control symptoms, especially if the condition is caught early. Treatment often includes medications that work on the skin or are taken by mouth. Here are some of the most common medications used to manage HS:

Topical Treatments (Applied to the Skin)
  • Anti-Acne Antibiotics & Benzoyl Peroxide: These are used to reduce bacteria on the skin. Benzoyl peroxide is also good at drying out the skin and helping to shed dead skin cells, which can prevent blockages in the pores.
Oral Medications (Pills)
  • Antibiotics: These can help when there are no abscesses (painful lumps). They aim to stop infections from spreading and help the lumps heal faster. Typically, you might be prescribed antibiotics for 1-2 weeks, but sometimes they are used longer for their anti-inflammatory effects.
  • Contraceptive Pills (COCPs): Sometimes birth control pills, like Dianette or Yasmin, are prescribed to women with HS. They can help balance hormone levels and reduce oiliness or skin issues. However, these pills are not suitable for everyone, and your doctor will check if it’s safe for you to use them.
  • Retinoids (e.g., Acitretin): These are vitamin A-based medications used when other treatments haven’t worked. Retinoids help stop the production of sebum (skin oil) and promote the shedding of dead skin cells, reducing blockages. However, retinoids can be harmful during pregnancy and should only be prescribed by a dermatologist.
  • Corticosteroids (e.g., Prednisolone): These medications can be prescribed for short periods to reduce inflammation. They can be very effective, but using them long-term may cause side effects like weight gain, high blood pressure, and bone thinning (osteoporosis).
  • Immunosuppressive Medications: These work by reducing inflammation in the body and can be helpful for severe HS. Drugs like Infliximab (Remicade) or Dapsone (which is also used for leprosy) may be prescribed. However, these medications need close monitoring because they can have serious side effects, like kidney problems or a weakened immune system.

Note: Some of these newer medications can be very expensive, and in some places, like the NHS, they may only be used for certain conditions such as rheumatoid arthritis or psoriasis.

Hidradenitis Suppurativa: Surgical Options

When medications alone aren’t enough, surgery might be considered to remove the affected tissue. Surgical options vary, depending on the severity of the condition. Here's a look at some common procedures:

1. Wide Excision Surgery

This is the most common surgery for HS. It involves removing the lesion (sore) and the surrounding tissue. The goal is to reduce the chances of the disease returning, but HS can still come back in the future. Studies show that about 1 in 3 people may experience a recurrence after surgery.

2. Limited Surgical Procedures

If the lesion is less severe, doctors may perform smaller, less invasive procedures:

  • Incision & Drainage: The abscess (painful lump) is cut open to allow the fluid to drain out.
  • Curettage: This involves scraping out the tissue at the base of the lesion to help it heal.
  • Sinus Tract Electrocoagulation: This uses heat to treat deep tracts (tunnels) under the skin caused by HS.
3. Electrosurgery

This technique uses an electrical current to remove tissue or treat smaller lesions. It may be a good option for some people because it is less invasive than traditional excision surgery.

4. Minor Surgical Options

These can be done to remove or treat smaller lesions:

  • Drainage of the lesion: A quick procedure to release pus or fluid.
  • Curettage: Scraping out the infected tissue.
  • Sinus Tract Electrocoagulation: A technique to treat deep tracts under the skin using heat.
5. Flaps & Grafts

In more complex cases, doctors may use flaps or grafts to close large wounds:

  • Pedicle Flaps: A piece of skin is moved to cover the wound.
  • Free Flaps: Skin is taken from one area of the body and moved to another.
  • Skin Grafts: Healthy skin is used to cover areas where tissue has been removed.

Things to Keep in Mind About Surgery

  • Surgery can be effective for removing stubborn lesions, but it’s important to know that it doesn’t guarantee the disease won’t return. Also, some people may experience the development of new lesions in areas that weren’t previously affected.
  • Discussing your treatment options, including both medication and surgery, with your doctor is important to find what will work best for you.

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