Stress and Mindfulness

Quality of Life in Hidradenitis Suppurativa

Hidradenitis suppurativa is psychologically distressing and impairs quality of life

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Hidradenitis suppurativa, also referred to as acne inversa, is a chronic, relapsing inflammatory skin disease involving the pilosebaceous units, which are the hair follicles and associated oil glands. The average age of onset is the early 20’s, and 1 to 4% of adults in the United States are affected by hidradenitis suppurativa, with a clinical picture that varies from person to person.[1] Some people develop tender nodules and papules that look like acne, while others have painful oozing abscesses, underlying sinus tracts, and disfiguring scars.[2] Although the exact cause of hidradenitis suppurativa is not known, there is a higher prevalence among females, smokers, and obese people.[3] Unfortunately, there is not yet a cure for hidradenitis suppurativa and most people are medically managed with topical medications, injected steroids, medications that suppress inflammation, and surgery to remove active or scarred nodules.[4] Hidradenitis suppurativa extensively impacts the quality of life of those who suffer from it. People with this disease experience declining quality of life and mental health, difficulty with exercise and sexual activity, and can have severe physical pain.   

 

The Quality of Life in People with Hidradenitis Suppurativa

Hidradenitis suppurativa most commonly affects skin fold areas such as the armpits, around the breasts, inguinal and anogenital areas, and the buttocks.[2] Many people affected with hidradenitis suppurativa suffer from daily discomfort and embarrassment due to pain with walking and other movement, and even oozing or malodorous discharge.[5] There are reports that hidradenitis suppurativa negatively affects the quality of life more than any other skin disease.[6] People are affected both physically and mentally by hidradenitis suppurativa, and it carries a significant risk for developing depression compared to many other chronic health conditions.[7] In one study looking at quality of life, people with hidradenitis suppurativa reported fatigue, low energy levels, and frequent work non-attendance.[8]

 

Pain Associated with Hidradenitis Suppurativa 

Hidradenitis suppurativa causes deep, inflamed skin lesions that can cause excruciating and unremitting bodily pain.[9] Physicians are faced with the issue of selecting an appropriate pain control plan while curbing the misuse of narcotics. Patients with hidradenitis suppurativa have reported the intense and chronic pain to be the most substantial factor causing an impaired quality of life.[10] Some words used by patients to describe hidradenitis suppurativa include: gnawing, burning, cutting, taut, and more.

 

Exercise

Obesity is significantly associated with hidradenitis suppurativa, and weight loss is an important part of management in overweight patients. However, the deeply painful nodules and scarring pose a serious limitation on movement and exercise, and friction and sweat can cause even further exacerbation. It is still possible to move, stretch, tone muscles, and burn calories and fat without excessive sweating and intense movement. Below are modes of exercise that are worth trying if you suffer from hidradenitis suppurativa:

  • Walk at a comfortable pace – there is no need to jog or run to burn calories and reap benefits to your cardiovascular system. Walk at a comfortable and sustainable pace for 30-60 minutes at least five days per week to improve fitness and aid in weight loss. Consider investing in a step tracker to keep track of progress and set goals.
  • Yoga – The benefits of yoga for people with hidradenitis suppurativa are numerous. Certain forms of yoga, such as Yin Yoga and meditative yoga, especially focus on improving flexibility while calming the mind. Your physical and mental fitness are sure to improve with regular yoga practice. If you are too shy or embarrassed to go to a yoga class, it’s worth starting at home first with many free online educational resources on yoga. 
  • Pilates – the key to Pilates is to perform movements slowly with purpose. Through this form of movement, you can develop leaner, toned muscles and especially improve core strength.
  • Strength training with weights – you do not have to be a powerlifter to have an effective workout in the weight room. By performing slow and controlled repetitions with light dumbbells and resistance bands, you can effectively strengthen muscles and bones and burn a lot of calories. Consider asking about sessions with a personal trainer at your local gym.

 

Sexual Health

People with hidradenitis suppurativa often experience discomfort and embarrassment in intimate body areas. It is known that hidradenitis suppurativa can be a significant detriment in sexual health and sexual activity.[11] The skin lesions of hidradenitis suppurativa tend to manifest as painful, pustular nodules, sometimes with disfiguring scarring in genital regions, which would understandably make sexual activity difficult. This perpetuates the embarrassment and decline in mental health that hidradenitis suppurativa sufferers deal with. Only one published study has investigated the sexual health of volunteers with hidradenitis suppurativa, and researchers concluded that patients affected with hidradenitis suppurativa have significantly diminished sexual health.[11] In this study, people reported a high level of sexual dysfunction, as well as sexual distress. Female patients with hidradenitis suppurativa expressed a much higher degree of sexual distress than males. Sexual health in the context of hidradenitis suppurativa is an important issue and should be an integral part of health care screening in these patients.

The pain, inflammation, scarring, and chronic nature of hidradenitis suppurativa have detrimental effects on the entire wellness of those suffering from it. There are many important factors of “health,” such as sexual health, that are often overlooked. The treatment plan for people with hidradenitis suppurativa should target physical, mental, emotional, and sexual wellness.  

* This Website is for general skin beauty, wellness, and health information only. This Website is not to be used as a substitute for medical advice, diagnosis or treatment of any health condition or problem. The information provided on this Website should never be used to disregard, delay, or refuse treatment or advice from a physician or a qualified health provider.

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References

  1. Vazquez BG, Alikhan A, Weaver AL, et al. Incidence of hidradenitis suppurativa and associated factors: a population-based study of Olmsted County, Minnesota. J Invest Dermatol.2013;133(1):97-103; PMID: 22931916.
  2. Ingram JR, Piguet V. Phenotypic heterogeneity in hidradenitis suppurativa (acne inversa): classification is an essential step toward personalized therapy. J Invest Dermatol.2013;133(6):1453-1456; PMID: 23673498.
  3. Dufour DN, Emtestam L, Jemec GB. Hidradenitis suppurativa: a common and burdensome, yet under-recognised, inflammatory skin disease. Postgrad Med J.2014;90(1062):216-221; quiz 220; PMID: 24567417.
  4. Kohorst JJ, Baum CL, Otley CC, et al. Surgical Management of Hidradenitis Suppurativa: Outcomes of 590 Consecutive Patients. Dermatol Surg.2016;42(9):1030-1040; PMID: 27340739.
  5. Onderdijk AJ, van der Zee HH, Esmann S, et al. Depression in patients with hidradenitis suppurativa. J Eur Acad Dermatol Venereol.2013;27(4):473-478; PMID: 22339940.
  6. Wolkenstein P, Loundou A, Barrau K, et al. Quality of life impairment in hidradenitis suppurativa: a study of 61 cases. J Am Acad Dermatol.2007;56(4):621-623; PMID: 17097366.
  7. Matusiak L, Bieniek A, Szepietowski JC. Psychophysical aspects of hidradenitis suppurativa. Acta Derm Venereol.2010;90(3):264-268; PMID: 20526543.
  8. Alavi A, Anooshirvani N, Kim WB, et al. Quality-of-life impairment in patients with hidradenitis suppurativa: a Canadian study. Am J Clin Dermatol.2015;16(1):61-65; PMID: 25432664.
  9. von der Werth JM, Jemec GB. Morbidity in patients with hidradenitis suppurativa. Br J Dermatol.2001;144(4):809-813; PMID: 11298541.
  10. Smith HS, Chao JD, Teitelbaum J. Painful hidradenitis suppurativa. Clin J Pain.2010;26(5):435-444; PMID: 20473053.
  11. Kurek A, Peters EM, Chanwangpong A, et al. Profound disturbances of sexual health in patients with acne inversa. J Am Acad Dermatol.2012;67(3):422-428, 428.e421; PMID: 22182915.