WARNING: Distressing content.
If you passed 22-year-old Kiersten walking her dog Charlie around the Sunshine Coast, you would have no idea of her hidden trauma.
With dozens of painful abscesses and boils all over her body, the student nurse is constantly in and out of hospital from the debilitating condition.
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But the brave Queenslander is fed up with keeping her suffering a secret, and wants others with her disorder to know they are not alone.
“When I was first diagnosed I was confused and embarrassed,” Kiersten tells 7Life of the skin condition known as Hidradenitis suppurativa (HS).
“At first I thought it was just ingrown hairs, but they would turn into very painful boils which would fill with fluid and rupture.
“Now I have to take daily medication to stop these lesions from becoming infected.”
Kiersten picked up on the first signs of HS when she hit puberty, noticing lumps under her armpits, neck, groin and breasts.
As the boils grew larger and larger, the pain radiating from the lump would leave the teenager in agony.
For years, she sought medical attention, with each doctor unsure what could be causing the continual return of the nasty lumps.
If left, the boils would grow and fill with fluid.
They would become so enlarged it was only a matter of time before Kiersten would accidentally bump one, causing it to ooze uncontrollably.
“When they ruptured, they would sometimes smell and sometimes it would take weeks for them to stop draining,” she explains.
“I thought maybe they were ingrown hairs so I was shaving differently and buying different razors.”
The young woman could be left with a hole for months until a lesion began to heal, leaving behind a scar.
When the pustule was clear and it had healed, the pain subsided — until a new lump formed.
For years, Kiersten secretly lived in this cycle of expanding and healing pustules, until she finally was given a referral for a dermatologist.
Within the first few minutes of her appointment, she was diagnosed with HS, an auto inflammatory disorder which creates boil and abscess-like lesions near hair follicles, close to sweat glands.
Kiersten has stage three HS, meaning the condition is severe, widespread, she has significant scarring and the abscesses have formed a ‘tunnelling system’ underneath the skin, connecting the lesions.
It means that, if one abscess is knocked accidentally, another lesion connected by a ‘tunnel’ could burst instead.
Horrified by the uncertainty of her condition, Kiersten felt alone.
“It is in quite sensitive areas (of my body),” she says.
“I was too embarrassed to tell anyone.”
Although she shared the diagnosis with close family, she didn’t dare speak to anyone else of the boils which peppered her body.
Dealing with agonising daily pain became the norm as she started treatment after treatment in the hope of curing the HS.
Laser hair removal proved ineffective so Kiersten turned to natural remedies including heat packs and applying organic castor oil and even Vicks Vaporub.
“I have hot baths, as hot as I can handle,” she says, explaining that the heat soothes her pain.
Taking daily medication, which leaves her immune system compromised, Kiersten is now at high risk of developing the life-threatening immune condition sepsis if the boils burst.
“They leave literal holes in my body,” she describes
“Sometimes they take weeks to drain and I have to change gauze multiple times a day.”
Numerous times, Kiersten has been hospitalised due to infection and needing surgery to clear the area.
She even underwent an extreme preventive surgery, known as “de-rooting”, in a bid to reduce her risk of infection.
The surgery involved removing multiple layers on skin including the tunnelling system the abscesses created.
After three months living with raw tissue and daily dressing changes, the surgery was a success.
Kiersten no longer has new boils appearing from underneath one of her armpits.
Still studying, she is trying to find time off from her busy schedule so she can have more de-rooting operations to try to cure other areas of her body.
The hidden struggle has weighed heavily on the student nurse.
A year ago, after joining a Facebook group of HS sufferers, Hidradenitis Suppurativa support group, who provide each other constant support, she was inspired to open up on her own social media about her diagnosis.
“I told them I was in hospital and so many people reached out. It was a huge support,” she says.
With her new found confidence, she is sharing her journey to hopefully help other HS sufferers know they are not alone.
