Talking to Your Doctor About Pain While Living With Hidradenitis Suppurativa (HS)

This article is for people who are living with HS and their care partners, or anyone who wants to learn more about HS. The goal of this activity is to help you talk to and work with your doctor about pain that you may be having while living with HS.

You will learn about:

• What HS is

• Symptoms and possible complications (additional problems) of HS

• Pain that may happen while living with HS

• Ways to help manage HS and its symptoms, including pain

• Questions to ask your doctor

HS is a chronic (long-term) health condition where your hair follicles get blocked and swollen, painful lumps form under your skin. This typically happens in areas where your skin rubs together, like your armpits, groin, buttocks, and breasts.

HS is not infected hair follicles (folliculitis), pimples or cysts from acne, or a sexually transmitted disease or infection (STD or STI). It also can't be spread to others and isn't caused by an allergy or not being clean enough.

Some people living with HS can have mild symptoms, but for others, HS can be severe. And while it's rarely life-threatening, HS can be extremely painful and affect your daily life and mental and emotional well-being.

Symptoms can include:

• Pain, discomfort, itching, or burning

• Small, indented areas with blackheads

• Painful, pea-sized lumps that can last for weeks or months

• Lumps that break open as sores that are slow to heal and can drain blood and fluid that has an odor

• Tunnels under the skin that can cause scars

HS can cause a number of complications (additional problems), such as:

• Scars from skin being repeatedly damaged

• Pain and limited movement due to sores and scars, especially in your armpits or groin

• Swelling in your arms, legs, or groin due to scars interfering with how fluid normally drains from these areas

• Infection if bacteria become trapped in your skin by tunnels or scars

• Skin cancer (squamous cell carcinoma), especially with long-term HS, that may happen rarely but can be serious

• Effects on your mental and emotional well-being that may lead to anxiety, depression, or feeling embarrassed or isolated due to pain and sores

HS can last for years and may have times where symptoms improve (remission) and then get worse (flare up). Factors that may trigger flare-ups can include weight gain, stress, hormone changes, heat, sweating, and getting your period. Sometimes, though, flare-ups can happen without a known cause.

For many people, living with HS does not just mean having a skin condition. Sores can remain open, drain blood and fluid that has an odor, be painful, and need special care. Tunnels and scars can limit your movement and cause pain. HS can affect your sleep, ability to do daily tasks, participation in activities, and personal, social, and sex lives.

While there's no cure, there are ways to help manage HS and its symptoms and protect your quality of life.

Together, you and your doctor can make a treatment plan that best fits your individual needs that may include:

• Wound care and a skincare routine

• Lifestyle changes, such as avoiding triggers, when possible, to help prevent flare-ups

• Procedures

• Medicines

• Joining a clinical trial

Many people who are living with HS can have pain that can range from mild to severe, and can happen once in a while to all of the time. Lumps can be painful, sores can hurt while open or healing, and tunnels and scars can limit your movement and function and cause pain, especially in your armpits and groin. You may also have pain because of inflammation (swelling).

Many people can also have other health conditions that can cause pain while living with HS, such as joint and spine problems like arthritis. So it's important to pay close attention to any pain or discomfort that you're having and let your doctor and healthcare team know. Together, you can find ways to help manage pain as part of your treatment plan.

Ways to help manage pain while living with HS that your doctor may recommend can include:

• Treating your skin gently and avoiding irritants. Ask about fabrics to avoid and what skin cleansers, moisturizers, and lotions they recommend

• Applying warm compresses. Ask about the right temperature for your skin

• Pain medicines such as analgesics, non-steroidal anti-inflammatory drugs (NSAIDs), or anesthetics

• Steroids injected into sores to help reduce inflammation and pain

• Cleansers to soothe your skin

• Seeing a pain specialist or going to a pain clinic

All medicines can have side effects. Be sure to ask your doctor or healthcare team member for a complete list of those that can happen with the medicines in your treatment plan.

Be sure to let your doctor and healthcare team know how HS is affecting your daily life, including any pain that you're having. Using a journal or diary to help track and record your symptoms can help.

Questions you can ask can include:

• How can we help manage HS and its symptoms, including any pain?

• What treatments are available, and what are their side effects?

• How can I help treat my skin gently?

• Are there other doctors or specialists I should see?

• What should I do if I start to feel stressed or depressed?

• Is there a support group I can join?

• Where can I find more information or resources?

Congratulations!

You have successfully completed the program Talking to Your Doctor About Pain While Living With Hidradenitis Suppurativa (HS).

View Additional Materials on this topic that you may find useful:

HS Foundation

Hidradenitis Suppurativa

Hidradenitis Suppurativa -- National Institutes of Health

Hidradenitis Suppurativa -- US National Library of Medicine

HS Diagnosis, Treatment, and Steps to Take