- Steph Friend, 35, Brisbane, Qld started to develop painful body lumps as a child
- Following years of humiliation and suffering, Steph is speaking out to help others
- Steph runs a charity for others who also have hidradenitis suppurativa
Here she shares her story in her own words.
‘These bumps are so itchy!’ I sobbed to my mum.
It was 1995 and I was at preschool when my skin erupted in painful, pea-sized lumps.
My armpits and groin felt like they were on fire.
Mum took me to our GP.
‘It’s hormonal,’ she said, explaining my swollen and sore body was due to an imbalance in hormones.
‘But she’s only five!’ Mum said, as I wept in agony.
‘There’s no treatment. Just make her wash better.’
She recommended a skin cream and a different soap to unclog my swollen pores, but nothing helped.
The lumps turned into angry, red abscesses. They bled when I scratched them and oozed yellow pus.
At school, I stuffed toilet paper in my armpits under my uniform to soak up the mess, terrified the kids would notice.
Sometimes, the abscesses burst inwards, tunnelling their way under my skin, forming painful fistulas.
As I got older, the lumps started forming beneath my breasts. I had to quit soccer, a sport I loved, because the friction from my shirt made the boils burst as I ran.
The worst ones were in my vagina.
They were so itchy and painful. It was hell on earth.
It seemed to flare up at the worst times, such as when I was stressed or on my period. Between flare-ups, I had no reprieve. I was left with scars as a result of my scratching at the infected abscesses.
At 18, the GP suggested the contraceptive pill.
‘They were painful and itchy – it was hell on earth’
‘It might help regulate things,’ she said. But there was no improvement.
At university, my condition didn’t improve. I’d cut up sanitary pads and stuffed them in my armpits to soak up the pus and blood.
During lectures, I sat on a cushion to ease the pain, and during exams, I made frequent bathroom trips to change my makeshift bandages.
Having to show the old ones to the adjudicator to demonstrate I wasn’t visiting the toilet to cheat was humiliating.
That year, I met Rhys, also 18 and a student.
He was so compassionate, but as my condition looked like a venereal disease, I had to work up the courage to tell him about the abscesses down below when we started dating.
‘Don’t worry Steph,’ he said gently. ‘It doesn’t bother me.’
He was so non-judgemental he became a huge support in my life, as did his gorgeous grandma, Beverley.
Rhys and I fell in love and married in 2016, in a beautiful beach wedding.
I was terrified I’d stain my white gown, but by some miracle, it all went smoothly.
At 26, I had a massive abscess in my vagina. Surgery revealed it was a recurring fistula, resulting in a total of 19 surgeries.
Frustrated not to have answers from doctors,
I did more research and found a rare disease that matched my symptoms
– hidradenitis suppurativa, or HS.
It was a chronic, incurable condition where hair follicles become blocked, causing painful, recurring abscesses. Women were three times more likely to have it.
I finally got the official diagnosis of HS in January 2021, at the age of 31.
But because of the pandemic, I had to wait several frustrating and painful months before starting treatment.
I needed two Covid vaccines before beginning biologics – meds made from living cells.
‘You’ll have to inject yourself weekly,’ my dermatologist explained.
Having a needle phobia, I’d faint when I had an injection, but using an auto-injector pen made it less intimidating.
The shots helped reduce my flare-ups but didn’t stop them completely.
In 2022, I launched a charity to raise awareness, Hidradenitis Suppurativa Australia, with Grandma Beverley as my biggest cheerleader!
We now have 100 members and host virtual monthly meetings. We also advocate for better medical care and treatment options.
What is hidradenitis suppurativa?
Commonly found under the arms, between the breasts, in the groin and the genital area, HS is a long-term painful condition which causes boil-like lumps. They may leak pus and cause scarring. It usually begins in puberty and is more common in women.
For more information on the condition, visit hidradenitissuppurativa australia.com.au
In the first week of June, we lit up landmarks in purple for HS Awareness Week.
Grandma Beverley attended the gathering in her wheelchair, dressed top to toe in purple!
Today, she and Rhys remain my biggest supports, along with my cats, Tiger, Storm and Griff, who help calm me.
I’m sharing my story, so others won’t feel as alone as I once did.
Related stories
Native ad body.
Native ad body.
Native ad body.
