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Pain is one of the most common and debilitating symptoms of hidradenitis suppurativa (HS). We sought to identify pain management therapies used in HS and assess patient-perceived effectiveness. An anonymous online survey was posted to Facebook HS support groups. Participants selected all that applied from a list of 20 therapies to indicate which ones they have tried for HS pain. For each therapy used, participants were asked to rate effectiveness on a 5-point scale: not successful (1), mildly successful (2), moderately successful (3), very successful (4), and extremely successful (5). Mean effectiveness ratings were calculated by averaging the corresponding numbers. Of the 438 participants, 93.8% were female. Participants classified themselves as Hurley stage I (8.2%), II (53.4%), and III (38.4%). Warm compresses were the most commonly used therapy (82.4%), followed by ibuprofen/naproxen (74.7%), Epsom salt baths (57.8%), cold compresses (45.4%), and acetaminophen (44.7%). Marijuana smoking received the highest mean effectiveness rating (2.92 ± 1.10), followed by marijuana edibles (2.87 ± 1.10), and opioids (2.83 ± 0.98). Mean effectiveness ratings were lowest for bleach baths (1.52 ± 0.80), sitz baths (1.53 ± 0.56), massage (1.61 ± 0.92), gabapentin (1.64 ± 0.73), and acetaminophen (1.71 ± 0.75). Even the highest-rated pain management modalities are considered only moderately effective by HS patients.

Pain management modalities for hidradenitis suppurativa: a patient survey