What to Expect When You Have HS (2024)

Hidradenitis suppurativa (HS) is different for every person, so it can be hard to predict exactly what it will be like. But along with your treatment plan, there are some good ways to manage the condition. It helps to know how the disease can affect your life, so you can make changes that will help.

How long will I have HS?

There’s no cure for HS, so you’ll have to manage the condition for life. For most people, it’s a cycle of flare-ups and periods when their skin is clear.

Breakouts tend to happen in the same general areas of your skin. But you may have a spot that stays broken-out all the time.

Some women find their HS clears up after menopause.

Will it get worse?

HS is called a progressive disease. That means it often gets worse over time. A small pimple can turn into a large boil within days or hours. If the boil ruptures underneath the skin, inflammation and infection spread quickly and new lumps form nearby. A flare-up may last a week or two.

But treatment can keep HS from getting worse and help you avoid the most serious symptoms. The key is to start it early.

How often should I see my doctor?

Your symptoms and the way your body responds to treatment will determine how often you see your doctor. You may be able to manage mild symptoms on your own. If you take a drug that’s injected or delivered through a vein, you may need to go in regularly.

Will it lead to other health problems?

People with HS tend to have other conditions, too, such as severe acne, arthritis, heart disease, diabetes, obesity, and inflammatory bowel disease. Doctors don’t know exactly why these conditions are linked. But it may be that whatever causes HS leads to other problems, too.

It’s rare, but people who have HS for a long time may be more likely to get a type of skin cancer called squamous cell carcinoma.

Will I have pain every day, or only during a flare?

It depends on how severe your condition is. Large, deep nodules or lumps can hurt. And depending on where they are, you may not be able to sit or walk normally. Some people only get these painful lumps from time to time when the disease flares. But for others, the bumps or lumps never completely go away.

Whether you have pain only during flares or more often, your doctor can help you control it. You may get numbing creams or over-the-counter or prescription pain medicine.

Will I smell bad during breakouts?

The lumps themselves don’t smell, but the fluid inside them does. When they burst and leak, the odor can escape, too.

Wear loose clothing and try to keep things from rubbing against the cysts. Don’t squeeze them. If they do burst, wash the area gently with an antiseptic cleanser to get rid of the smell. Antibiotics may also help.

How often will I have flare-ups? Is there a way to prevent them?

HS can be unpredictable. You may have a flare-up every few weeks, or you may go months with clear skin. Some women find they have breakouts before their periods. They may go away while you’re pregnant or breastfeeding.

There’s no sure way to prevent breakouts. But they may not come back as often or be as bad if you follow your treatment plan, take any medication your doctor prescribes, and make some changes to your lifestyle.

  • Get to a healthy weight.HS is closely tied to obesity. Losing weight is one of the best ways to keep it under control.
  • Quit smoking.
  • Stay cool.Your HS may get worse in the summer, when heat and sweat can trigger a flare-up. Swimming is a good way to get exercise without overheating.
  • Don’t shave near a breakout.If your razor irritates your skin, laser hair removal may be a better choice.
  • Watch what you eat.There’s some evidence that it may help to cut dairy and sugar from your diet. Ask your doctor if you should try it.
What to Expect When You Have HS (2024)

FAQs

What to Expect When You Have HS? ›

Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh), also known as acne inversa, is a condition that causes small, painful lumps to form under the skin. The lumps usually develop in areas where your skin rubs together, such as the armpits, groin, buttocks and breasts.

What triggers HS flare-ups? ›

Scientists believe that cigarette smoking is the most common trigger for HS. Researchers have found that between 70% and 90% of people who get HS smoke cigarettes. Being overweight also seems to trigger HS.

What not to do when you have HS? ›

Foods to avoid if you have hidradenitis suppurativa
  1. Highly processed foods. ...
  2. Dairy. ...
  3. Sugar. ...
  4. Brewer's yeast. ...
  5. Refined carbs. ...
  6. Alcohol. ...
  7. Cut out offending foods. ...
  8. Try an anti-inflammatory diet.
May 22, 2022

What clears up hidradenitis suppurativa? ›

Treatment
  • Antibiotics. An antibiotic applied to the skin in liquid or gel form may be used to manage mild symptoms. ...
  • Steroid injections. Triamcinolone acetonide, or Kenalog-10, injected into the sores might reduce swelling and inflammation.
  • Hormonal therapy. ...
  • Biologics. ...
  • Retinoids. ...
  • Pain medicine.
Jun 6, 2023

How long do HS flare ups last? ›

A flare-up may last a week or two. But treatment can keep HS from getting worse and help you avoid the most serious symptoms. The key is to start it early.

How do you calm down a flare up of HS? ›

Warm water compress: To make this compress, place a clean washcloth under warm running water. Wring out the excess water and place the washcloth on the painful lump. Leave the washcloth on the area for 10 minutes. You can repeat this several times during the day to reduce pain.

What foods aggravate HS? ›

However, it is best to avoid food that has brewer's yeast, including:
  • Beer.
  • Wine.
  • Fermented spreads.
  • Some soy sauces.
  • Some stock cubes.
  • Some dried or canned soups.
  • Some bread, cakes, and pizza.
  • Some gravies and dips.

Can you pop HS bumps? ›

Why you shouldn't pop hidradenitis suppurativa. Hidradenitis suppurativa isn't your usual acne, so don't go popping them like normal pimples. The pits of hidradenitis suppurativa run so deep under your skin that they build tunnels with other cysts and fill up with a fluid mixture of blood and pus.

Can HS make you tired? ›

A lesser-known fact: Your hidradenitis suppurativa could be wreaking havoc on your life in other, non-skin-related ways, too—namely your energy levels, since fatigue is one of the most reported symptoms, affecting nearly 40% of HS patients.

What do you wash with when you have HS? ›

Chlorhexidine cleansers and benzoyl peroxide washes

“These products will decrease the bacterial load, but it's gentle enough for the skin of people with HS,” says Dr. Kerns. “A lot of over-the-counter antibacterial body washes have fragrances, dyes and a lot of other unnecessary ingredients.

What is the root cause of hidradenitis suppurativa? ›

Hidradenitis suppurativa develops when hair follicles become blocked, but why this blockage occurs isn't known. Experts think it could be connected to hormones, genetic predisposition, cigarette smoking or excess weight.

What does HS smell like? ›

HS lesions most often form near the sweat glands, such as the armpits, groin, and inner thighs. People who notice a smell coming from HS lesions often describe it as a strong foul odor. “I used to have the smell of blood or sweat that would make me want to dig a hole and stick my head in it,” wrote one myHSteam member.

Can HS go away with weight loss? ›

During one small study, most patients who lost 15% or more of their body weight benefitted. Nearly 50% saw their HS clear, and 20% had fewer HS lumps. These studies also found that weight loss works best in the early stages of HS when you have painful lumps in your skin but no tunnels beneath.

What is the pain level of HS? ›

HS-associated pain is the most burdensome symptom of HS, affecting up to 97% of patients during the course of the disease (11). The pain is frequently described as sharp, acute, gnawing, tenderness, or throbbing (17, 18).

When to go to the ER for hidradenitis suppurativa? ›

The typical scenario in which a patient with HS presents to an ED or urgent care is for the acute onset of new or worsened inflammatory nodules, abscesses, or swollen draining tunnels (Figure 1). Patients typically report severe pain, purulent drainage, and concern about possible infection.

Is HS worse in the summer? ›

Heat and sun exposure can potentially affect Hidradenitis suppurativa (HS) in different ways. While the impact may vary from person to person, here are some general considerations: Heat: Excessive heat can lead to increased sweating, which may exacerbate HS symptoms.

What causes HS outbreaks? ›

Hidradenitis suppurativa develops when hair follicles become blocked, but why this blockage occurs isn't known. Experts think it could be connected to hormones, genetic predisposition, cigarette smoking or excess weight.

What irritates hidradenitis suppurativa? ›

Milk and other dairy products may raise levels of certain hormones that lead to hidradenitis suppurativa symptoms. Cow's milk may also cause inflammation. Limited research has demonstrated that eliminating dairy products may be helpful in lowering hidradenitis suppurativa symptoms in some people.

What inflames HS? ›

The blocked hair follicles trap bacteria, which leads to inflammation and rupture. In most cases, the cause of the blockages is unknown. Genetics, environment, and hormonal factors may play a role. Some cases of HS are caused by changes in certain genes.

How do you stop HS progression? ›

Early treatment in stage 1 or 2 HS can help prevent progression to stage 3. Treatment may include anti-inflammatories, medications that modify or suppress the immune system, antibiotics, pain relievers, and other therapies, such as laser hair removal.

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