A Bristol woman has revealed how a little-known medical condition left her in unbearable, never-ending agony after using prescribed steroid creams for ten years, forcing her to completely rethink her relationship with her own body.
The beginning of a decade-long struggle
Lily Holden, a 30-year-old senior brand marketing manager from Bristol, first noticed problems in 2014 after returning from an outdoor adventure retreat in Cheshire where she swam in 'swampy water'.
"I noticed a small rash halfway up my neck and assumed it was from my outdoor adventures," Lily explained. When the rash persisted for three weeks, she consulted a doctor who prescribed a topical steroid cream.
The rash disappeared initially, but over the following decade, Lily experienced random rashes around her neck and lower face, returning to doctors repeatedly for more steroid cream prescriptions.
The terrifying eruption and diagnosis
In January 2025, Lily's situation dramatically worsened when her face erupted in circular patches of itchy rashes. She was diagnosed with perioral dermatitis, ironically being prescribed yet another steroid cream despite her doctor suggesting her previous steroid use might have caused the problem.
"Alarm bells started to ring when I would apply the cream to my face but new areas of my skin were becoming affected with rashes," Lily recalled.
Around this time, she discovered topical steroid withdrawal (TSW) on TikTok, where others shared similar experiences of rashes returning worse than before and affecting areas where steroids had never been applied.
Unbearable withdrawal and recovery
When Lily asked her doctor about TSW, she claims they didn't acknowledge the condition. After being prescribed an immunosuppressant topical cream instead, her symptoms returned even worse when she stopped using it.
In June 2025, Lily made the difficult decision to stop all medicated creams completely. From July to October, she suffered what she describes as red hot and painful inflammation with open, raw wounds on her face.
"I had no skin barrier, it got repeatedly infected and I had orange weeping," she said. "My whole face blew up and sat in a different shape – I didn't even recognise myself."
The physical agony was matched by emotional isolation as she couldn't go outside, struggled to eat because her mouth wouldn't open properly, and found even water felt like acid on her skin.
Finding support and self-love
Lily credits her family and friends as her 'biggest cheerleaders' during this difficult period, along with the TSW community on TikTok who provided an outpouring of advice and support.
Her skin began recovering in October 2025 after she invested in a combination of therapies including supplements and homeopathic advice. Her complexion is now completely fine, though she emphasises there's 'not a one size fits all' approach to TSW recovery.
"I joke that people would pay a lot of money to go on a self-love retreat – I've just had it for free via TSW," Lily told PA Real Life. "I'm almost enamoured with myself now. When I lost my appearance, I had to negotiate an identity without it and accept that my skin doesn't define me."
Medical recognition and awareness
The National Eczema Society describes TSW as a severe reaction that can occur when topical steroids have been used for a long period, causing red skin, swollen glands, intense itching, oozing, burning skin and excessive flaking.
A joint statement by the National Eczema Society, the British Dermatological Nursing Group and the British Association of Dermatologists acknowledges TSW and the urgent need for high-quality research into the condition.
While noting that topical steroids are safe and effective for most people, the statement recognises that TSW side effects are generally less well understood, with challenges in management due to lack of clear medical definition.
According to the NHS, steroids often don't cause side effects if taken briefly, but serious side effects become more likely with higher doses taken longer term.
Lily now hopes to raise awareness about TSW and encourage the medical community to better recognise the condition. "One of the worst parts is not feeling seen or listened to," she said. "I think with skin problems, it's a case of saying 'here's a cream, you'll be fine', but people need to be so careful."
Her message to other sufferers is clear: "You're not alone, you'll get through this and you are, and always will be, more important than your skin."
