Living with hidradenitis suppurativa

HS pain can often be relieved by treating the symptoms directly. However, sometimes pain medication is also needed to alleviate areas of intense or cumulative pain resulting from multiple abscesses.  

Medical pain management 

Analgesics (also known as painkillers) are a broad class of medications used to treat the symptoms of pain. They work by dulling or blocking pain signals to the brain; however, they do not change the cause of the pain. They usually come in the form of oral tablets or capsules that can be taken as needed or at a regular dose (preferably under medical supervision), up to a maximum daily limit. 

Common analgesics include paracetamol and aspirin. These are available over the counter (OTC) through supermarkets or pharmacies. 

Some analgesics also have anti-inflammatory properties and are referred to as nonsteroidal anti-inflammatory drugs (NSAIDs). Examples of these include meloxicam (Mobic®) and celecoxib (Celebrex®). Aspirin and ibuprofen are also classed as NSAIDs, but paracetamol is not, as it has limited anti-inflammatory benefits. 

Paracetamol and aspirin can be combined with various other drugs, such as some opioid products (including Panadeine Forte®) or NSAIDs, to increase pain relief or reduce inflammation. Some of these are available over the counter, but many are only available on prescription (including all products containing codeine), due to their strength and increased risks. 

Pain management is an integral part of living with HS, but it’s crucial to use pain medications carefully and responsibly. Taking too much medicine, even over-the-counter ones, can be dangerous. If you often use pain medicine, discuss your options with your GP or a pain management specialist. They can create a safe plan that doesn’t include opioids or other potent drugs. 

Holistic pain management 

Consider adding gentle stretching, meditation or breathing exercises to your daily routine. These can help reduce stress and tension, which may ease some pain. Cold compresses can reduce swelling.

HS is best treated holistically. Medication makes a significant difference, but it is also essential to take care of your entire body.  

Daily skincare 

Maintaining a gentle skincare routine is key if you’re living with HS. Use non-soap cleansers and avoid any harsh scrubbing on your skin. Antiseptic washes, such as chlorhexidine, can be used to reduce bacterial growth. Start using these gradually to prevent irritation and avoid using them on sensitive areas of the body. 

Shaving can damage the skin and exacerbate HS. Some people prefer to let their hair grow in areas where hair removal is common, such as the armpits, groin or face. You could also consider hair removal options such as laser therapy. 

Diluted bleach bath 

Diluted bleach baths might help if you develop a chronic bacterial infection as a result of your HS, but they’re not right for everyone. Always consult your doctor to determine if a bleach bath is right for you and to receive instructions on using the right ingredients for your needs. Avoid bleach baths if you have certain types of eczema, sensitive skin, asthma, or if you take medications or use products that thin your skin, such as retinol, corticosteroids, or blood thinners. 

Comfortable clothes 

Wear whatever feels comfortable to you, as preferences may vary. Avoid clothing that causes friction or irritation and opt for fabrics that feel soft against your skin. 

Weight management and nutrition 

Maintaining a healthy weight and staying active are important for overall health and wellbeing. The connections between weight loss, nutrition and HS are still being studied. 

If you think certain foods may trigger your HS symptoms, consider keeping a food diary or app to track your diet and identify potential patterns. Tools such as these can help you make informed choices about what works best for your body. 

Stop smoking 

Quitting smoking is important for overall heart health and cardiovascular wellbeing. Researchers are continuing to study whether smoking cessation directly improves HS or the effectiveness of treatments. 

Note: What people often aren’t told is that the stress of quitting and withdrawal symptoms can temporarily worsen HS before it gets better. If you’re considering quitting, be patient with yourself and work with a healthcare provider to manage any potential challenges that may arise along the way.  

HS often causes wounds that don’t heal easily, and some abscesses may drain and refill repeatedly, which is a common part of the condition. Taking proper care of your wounds is important for healing and reducing discomfort. 

Daily cleaning 

Clean your HS wounds at least once daily with mild soap and water. Antimicrobial washes, such as chlorhexidine, can be used a few times a week, but be cautious when applying them to sensitive areas or mucous membranes. If you are unsure about using them, check with your dermatologist first. 

Moisture balance 

Use petroleum jelly, medical-grade honey or ointments containing vitamins A and D to maintain moisture and soothe wounds. Keeping wounds moist can also help reduce pain during bandage removal. 

Dressings for comfort and protection 

Non-woven combine dressings or silicone-bordered foam dressings absorb moisture, protect wounds and promote healing. Feminine hygiene pads secured with reusable self-adhesive elastic bandages can work well, but the adhesive may cause irritation. Some dressings can be bought in bulk from health aid suppliers, such as Independence Australia. 

Tailored wound care 

Since wound care needs can vary depending on lesion location, work with your dermatologist to find the best approach for your specific situation. 

Specialised wound care 

Silicone scar sheets or creams may help reduce the appearance of new scars. Hydrocortisone cream can address hypertrophic scars, but only use this if recommended by your doctor, as it may cause harm, especially on unhealed wounds. 

Wound care during menstruation 

Wound care in the genital area during menstruation can be challenging. Disposable pads can cause irritation and may need to be changed more frequently. Alternative options include tampons, menstrual cups, period underwear or cloth pads. Consider using contraception to stop your periods altogether. 

Seek professional support 

If you’re dealing with chronic or severe wounds, ask your dermatologist for a referral to a wound care clinic. These specialists can provide advanced care tailored to your needs. 

Managing chronic wounds can feel overwhelming, but with proper care and guidance from your healthcare provider, you can improve your comfort and quality of life. 

HS flare kits for wound care on the go 

Having a flare kit ready can help you manage unexpected symptoms when away from home. Keep a kit with essential care items such as absorbent pads, bandages, tape and petroleum jelly in your backpack, desk or locker. Consult your dermatologist or GP clinic nurse for guidance on properly bandaging a wound. 

If you’re travelling and staying in a hotel, consider packing sheets and a blanket or a doughnut cushion if you’ll be driving long distances. It is a good idea to discuss your support aid needs with your GP. 

In your flare kit, consider including: 

• Dressings and bandages to protect abscesses 

• Topical pain relief options like gels or creams 

• A change of clothes for emergencies 

• Clean-up items like wipes and diluted disinfectants 

• A journal for tracking symptoms, triggers and treatment effectiveness 

Wound care in public places 

Managing wounds can be especially challenging when you are out in public. Often, public toilets are the only place you can change dressings or clothing privately. The National Public Toilet Map displays the locations of over 23,000 facilities across Australia, including toilets, adult change facilities and baby change facilities. 

You might find that the extra space in an accessible toilet makes it easier and more hygienic to change your dressings. You don’t need a mobility aid to use such facilities. 

Hidden Disabilities Sunflower lanyards and other products are discreet tools you can use to show you have a condition that may not be immediately apparent — and that you may need a helping hand, understanding, or more time in shops, at work, on transport, or in public spaces. For example, airline staff may provide extra blankets you can roll up to support painful wound sites. Some organisations and educational facilities in Australia also help people who display Hidden Disabilities Sunflower products. 

HS is linked to other hormone-related conditions, like polycystic ovarian syndrome and insulin resistance, though the exact connections are not yet clear. Sex hormones such as oestrogen, progesterone and testosterone can affect HS disease activity. Hormonal changes from HS may affect biological women with HS during their menstrual cycle, pregnancy and menopause. 

Whatever your stage of life, if you notice a correlation between your hormone levels and your HS symptoms, tell your treating doctors. They can also help you adjust your treatment plan accordingly. You may also find it helpful to consult an endocrinologist (hormone specialist) or organisations that specialise in supporting people with hormonal conditions. 

Prospective parents with HS may worry about their ability to conceive. While HS does not cause fertility issues, it can affect sexual function. Also, while HS has a genetic component, it does not mean your child will automatically develop it. Other factors, such as environmental triggers, can also play a role. 

If you have HS around your genitals, vaginal delivery may be difficult. HS abscesses on the breast may impact your decision to breastfeed. Seek the support of your healthcare team to help you work through your options and develop a treatment and parenting plan that best fits your needs.

HS can have a significant impact on your emotional and mental health. While temporarily feeling down is not uncommon, especially when you’re dealing with an underlying chronic condition, persistent feelings of hopelessness or sadness lasting two weeks or more may be a sign that you may need more mental health support. 

Research shows that people with HS are twice as likely to experience depression and anxiety compared to the general population. 

Some of the reasons HS can affect your mental health include: 

• Chronic pain: Abscesses caused by HS are frequently painful, especially during disease flares. When pain restricts the ability to participate in daily activities, it can lead to feelings such as frustration, sadness and hopelessness. 

• Emotional impact: HS abscesses often occur in locations that can cause embarrassment and shame, especially when they leak or produce an odour. These symptoms may lead to stigma from others and reduced self-esteem. Anxiety about disease progression and treatment can also cause significant emotional distress. 

• Intimacy: HS can profoundly affect your relationships, especially when it comes to intimacy. Chronic pain, visible symptoms and emotional strain often lead to challenges in both sexual encounters and overall satisfaction in your relationship. 

• Social isolation: The physical and emotional burden of HS can lead to withdrawal from social situations, which may worsen feelings of depression. 

Taking care of your mental health is just as important as managing your physical symptoms. Here are a few steps you can take to help manage your mental wellbeing: 

• Talk to your care team: Share how you’re feeling — both physically and emotionally — with your healthcare providers. They can help connect you with a specialist who can provide the support you need. 

• Find support: Join an HS support group or connect with others who understand your journey. Sharing your experiences can make a big difference. 

• Seek professional help: If you’re feeling down or anxious, don’t hesitate to talk to a mental health professional. You may also find talking therapies, medication or even appropriate mobile apps helpful for your mental health. 

The emotional toll of HS can feel overwhelming, but help is available. Speak with a mental health professional, someone you trust, or contact Beyond Blue at beyondblue.org.au or call 1300 22 4636. 

If you or someone you know is having suicidal thoughts, contact Lifeline right away at lifeline.org.au or call 13 11 14. 

Sources 

Alavi A, et al. Quality of life and sexual health in patients with hidradenitis suppurativa. International Journal of Women’s Dermatology. February 2018. https://doi.org/10.1016/j.ijwd.2017.10.007 

American Academy of Dermatology Association. Hidradenitis Suppurativa: How to Cope When Depression Hits. https://www.aad.org/public/diseases/a-z/hidradenitis-suppurativa-depression 

Fernandez J, et al. Menses, pregnancy, delivery, and menopause in hidradenitis suppurativa: A patient survey. International Journal of Women’s Dermatology. December 2020. https://doi.org/10.1016/j.ijwd.2020.07.002 

Frew J, et al. Australasian hidradenitis suppurativa management guidelines. Australasian Journal of Dermatology. November 2024. https://doi.org/10.1111/ajd.14388 

Frew J. Intrinsic factors in the pathogenesis of hidradenitis suppurativa: Genetics, hormones, and the microbiome. Journal of the American Academy of Dermatology, December 2024. https://www.jaad.org/article/S0190-9622(24)02764-6/fulltext 

Health Central. Navigating Pregnancy With HS. https://www.healthcentral.com/condition/hidradenitis-suppurativa/navigating-pregnancy-with-hs 

HidraWear. HS on the go! What You Should Have in Your Hidradenitis Suppurativa Kit. https://hidrawear.com/hs-on-the-go-what-you-should-have-in-your-hidradenitis-suppurativa-kit 

HMP Global Learning Network. The Dermatologist. The Psychosocial Impact of Hidradenitis Suppurativa. https://www.hmpgloballearningnetwork.com/site/thederm/site/cathlab/event/psychosocial-impact-hidradenitis-suppurativa 

HSDisease. Intimacy, Sex and HS. https://hsdisease.com/intimacy 

HSDisease. Stigma and Shame: How It Has Affected My Life. https://hsdisease.com/living/stigma-shame 

HS Patient Guide. https://hspatientguide.com/guide/women-with-hs-periods-pregnancy-and-menopause 

Koumaki D, et al. Perspectives On Perceived Stigma And Self-Stigma In Patients With Hidradenitis Suppurativa. Clinical, Cosmetic and Investigational Dermatology. October 2019. https://doi.org/10.2147/CCID.S180036 

Kozera E, et al. Clinical considerations in the management of hidradenitis suppurativa in women. International Journal of Women’s Dermatology. December 2021. https://doi.org/10.1016/j.ijwd.2021.10.012 

Krajewski PK, et al. Hidradenitis Suppurativa Is Associated with Severe Sexual Impairment. Dermatology. January 2024. https://doi.org/10.1159/000536128 

Machado MO, et al. Depression and Anxiety in Adults With Hidradenitis Suppurativa. JAMA Dermatology. June 2019. https://doi.org/10.1001/jamadermatol.2019.0759 

Make HStory. FlareCare. https://www.makehstory .com/hidradenitis-suppurativa-flarecare 

Make HStory. HS and Your Skin. https://www.makehstory .com/hidradenitis-suppurativa-stages 

MedCentral. Menstrual Cycle Impacts Patient-Reported Outcomes in Hidradenitis Suppurativa. https://www.medcentral.com/dermatology/menstrual-cycle-impacts-patient-reported-outcomes-in-hidradenitis-suppurativa 

myHSteam. Intimacy and HS: Communicating With Partners. https://www.myhsteam.com/resources/intimacy-and-hs-communicating-with-partners 

No BS About HS. Helpful resources for hidradenitis suppurativa (HS). https://www.nobsabouths.com/hs-patient-stories/hidradenitis-suppurativa-resources 

The Office of Health Economics. The Burden of Hidradenitis Suppurativa on Patients, the NHS and Society. https://www.ohe.org/publications/burden-hidradenitis-suppurativa-recommendations 

Vekic D, et al. Hidradenitis suppurativa – Management, comorbidities and monitoring. Australian Family Physician. https://www.racgp.org.au/afp/2017/august/hidradenitis-suppurativa-management-comorbidities