Symptoms

    HS is characterised by painful, leaking lumps that may come and go. These lumps can fill with pus and become painful and sore. Eventually, the lumps rupture and leak the contents (which can have a foul odour) onto the surrounding skin and clothing. In time (days, weeks, months, or longer), these lumps can fill again and the cycle repeats.

    In early HS, there are usually a mixture of blackheads, spots, or red lumps which look like boils. In the later stages of HS, tunnels may form under the skin that leak pus with wounds that may not heal easily. Over time, more scarring may appear.

    HS typically appears where skin meets skin and is most often found in the following areas:

    • Armpits
    • Breasts
    • Genitals
    • Inner thighs
    • Backside/buttocks
    • The area between the backside/buttocks and the genitals

    Although less common than the body locations listed above, HS can appear in other areas too such as the ears, or around the belly. Rarely, HS can appear on the the back, face, or neck.

    Click on the symptoms below for further detail.

    Typical locations for HS

    Image source: https://ehsf.eu/hidradenitis-suppurativa/ 

    Physical Symptoms

    Typical Locations

    HS typically appears on certain parts of the body, including:

    – In the armpits

    – Around the bottom

    – Under, on, and between the breasts

    – Beside and on the genitals

    – Around the groin

    – The inner thighs

    – The area between the anus and the genitals

     

    HS is most common in areas where there is skin-on-skin contact. However, it can occur elsewhere on the body such as the back, neck, face, scalp, behind the ears.

    Recurring lumps

    In some people, the cycle of a bump appearing, filling, and then opening (known as a flare) can reoccur in the exact spot; in others, flares occur in the same area but not in the exact same spot.

     

    Some people have constant flares on their skin while in others, scars may be the only sign of HS.

    Scarring

    The cycle of the lesions appearing, draining, and healing, along with the formation of tunnels can cause the skin to contract and form scars that look like knots or are rope like in appearance. It can cause the skin to become tight and restrict movement.

    Pain

    HS can be a very painful condition, however, there are different ways to help relieve the pain.

    Fatigue

    During flare ups your body is fighting infection. This, combined with experiencing pain and varying degrees of mobility difficulties will contribute to a complete lack of energy. It may be difficult to motivate yourself to engage in activities, or to concentrate.

    Reduced Mobility

    The location, and or pain from HS lesions, can make it difficult to move freely sometimes. For example, painful lesions under your arms may make it uncomfortable to raise your arms.

    Diagnostic Delay

    HS is often misdiagnosed. Studies have shown that on average, it takes 7 – 10 years for someone to learn they have HS.

    • A 2020 global study1 involving almost 1300 people from four continents, reported an average diagnostic delay of 10.2 years.
    • In Ireland, an average delay of approximately 8.4 years has been reported2.

    The delay can have large impact on the person with HS and their families, healthcare, and society.

     

    References:

    1. Garg A, et al. Evaluating patients’ unmet needs in hidradenitis suppurativa: Results from the Global Survey Of Impact and Healthcare Needs (VOICE) Project. J Am Acad Dermatol. 2020 Feb;82(2):366-376. doi: 10.1016/j.jaad.2019.06.1301. Click here to see more.
    2. Delany E, et al. A cross-sectional epidemiological study of hidradenitis suppurativa in an Irish population (SHIP). J Eur Acad Dermatol Venereol. 2018 Mar;32(3):467-473. doi: 10.1111/jdv.14686. Click here to see more.

    Image source: https://skin.science/skin-story/hidradenitis-suppurativa 

    More detailed information can be found at the following sources

    WebMD - Hidradenitis Suppurativa
    The American Academy of Dermatology
    The Irish Skin Foundation's information booklet

    The Stages of HS

    HS is usually classified into three stages called Hurley staging, named after the surgeon who proposed it.1

    Hurley Stage I

    This may be a single lesion without sinus tract (tunnel) formation.

    Hurley Stage II

    Single or multiple lesions, but with limited tunneling.

    Hurley Stage III

    Multiple lesions, with more extensive tunnels and scarring. It involves an entire area of the body

    Images source:2

     

    HS severity is divided into three stages, with the least severe being Hurley stage I, and the more severe being Hurley stage III.

    Hurley staging allows doctors to assign a severity level to HS, but it does not account for other factors such as disease activity, the pain, or the impact on a person’s quality-of-life. As a result, many different measurements/tools have been developed to assess HS severity to account for these additional factors.

    Currently, there are > 30 severity assessment measurements/tools in use but most doctors still refer to and use the Hurley staging system.

     

    References:

    1. Hurley HJ. Axillary hyperhidrosis, apocrine bromhidrosis, hidradenitis suppurativa, and familial benign pemphigus: surgical approach. In: Roenigk RK, Roenigk HH Jr, eds. Dermatologic surgery: principles and practice. 2nd ed. New York: Marcel Dekker, 1996:623-45.
    2. Jemec GB. Hidradenitis suppurativa. J Cutan Med Surg. 2003 Jan-Feb;7(1):47-56. doi: 10.1007/s10227-002-2104-z.