By Saloni Mathur
**WITH FULL PERMISSIONS**
SIDE-EFFECTS caused by eczema cream left this woman in excruciating pain and wounded in a place that is every woman’s worst nightmare.
When she stopped using the steroid cream prescribed for her eczema, Rachel Kinsey, the 28-year-old higher education co-ordinator from Manchester, suffered from red inflammations all over her body with wounds oozing pus throughout the day and loss of eyebrows because of excessive hair loss.
She had eczema on her vulva (clitoris hood), for which she used mild steroids, but with TSW, it became excruciatingly painful to use the toilet and shower.
She had to stand in the shower, holding her hands between her legs and just let the shower water trickle down whilst it burned and stung her whole body, including the clitoris.
“The pain felt like I was internally on fire, and my raw skin was burning, stinging, cracking, and the itch was bone deep. No amount of scratching would satisfy it,” she said.
“My entire body felt like it was on fire, but the vulva was worse off as it’s such a sensitive area.
“I think this did put a strain on our marriage because my husband was constantly taking care of me, and we could not have sex for two months due to my skin being cracked, sore, and itchy.”
The pain from TSW got so bad that Rachel could not leave the house anymore.
The fear of waking up with new oozing wounds and unbearable pain scared her to the point of keeping her up at all hours of the night. She would stay up in bed scratching at her skin to soothe the relentless itch without any respite.
To distract herself from scratching her skin, she kept herself busy and worked through the night on her laptop. She barely managed to get eight hours of sleep in a week.
Rachel has had eczema since birth and has occasionally used steroid creams to treat it until 2020.
During the lockdown, she had a bad flare-up and started treating it with solid steroid creams that she eventually became dependent upon.
Using strong steroids regularly for two-and-a-half years, Rachel started to notice red patches on her skin in early 2023, which she first mistook as eczema flares.
“I had heard of TSW before as some of my friends went through it,” she said.
“But when I saw the pictures online, I didn’t think I would be mentally strong enough to go through something like this.
“However, once I stopped using the steroid creams and my skin would flare red within one day, I knew my skin had become addicted to it, and the only way out was to stop it altogether.”
But when she stopped using the steroids, the TSW kicked in full swing.
TSW or topical steroid withdrawal is also known as red skin syndrome (RSS), a condition that arises when regular use of strong steroid creams is stopped, resulting in the skin reacting to it. It is like the skin experiencing steroid withdrawal.
Rachel had to work from home for one month when her TSW got worse.
It was from this moment on that she was to go into her darkest moments.
“I was in a bad mood a lot because I’m a very extroverted person who loves going out to see friends and do activities. Being home-bound was very challenging on my mental health,” she said.
“Even little things, like being unable to grab something properly, would set me off crying because I felt useless.
“The oozing part was probably the most disgusting. I had to sleep with a towel down so it would absorb some of the ooze, but I would wake up my wounds stuck to the towel, and it was so painful to peel off.
“The hair loss was a humbling experience. I lost my eyebrows because that was one of the areas where I used strong steroids a lot, so there was lots of oozing there, and it all crusted over.
“When the scabs flaked it, it took my eyebrow hairs with it and took a few months to grow back. The same happened to my hairline and temples as the flaking moved into my scalp.”
At the beginning of her steroid use, Rachel was prescribed Hydrocortisone 1%, a mild steroid for the face and genitals, Elocon Mometasone Furoate 0.1%, a potent steroid for full body coverage, and Dermovate Clobetasol Propionate 0.05% another potent steroid for hands to treat her eczema.
But when the Hydrocortisone stopped working on her body and face, she switched to Elocon, which is a very potent steroid.
After suffering the terrifying effects of steroid addiction, she now knows that upping the potency of the cream was the worst step she could have taken.
“I was prescribed antibiotics, Flucloxacillin and oral steroids, Prednisolone by my dermatologist to battle TSW,” she said.
“They worked like magic, and the red patches were gone in mere hours. But when, after a few days, I stopped taking the oral steroids, the red patches came back with a vengeance.
“I realised I had enough and decided to go through the whole withdrawal process.
“I started doing a lot of research on TSW and found that many TSW warriors seemed to have healed from a method called No Moisture Treatment (NMT).
“It is essentially no moisturiser, limiting showers, restricting water intake, exercising and depriving the skin of water so it forces itself to re-produce its own moisture again so you don’t have to rely on moisturiser.
“I started this in April 2023, only showering every three days, no moisturiser anywhere, only drinking one litre of water a day and supplementing it by eating high protein foods as well as taking collagen, vitamins and probiotics.
“The first few weeks were extremely hard. My skin was so dry and tight, cracked and sore that I couldn’t even reach up to grab a cup from the cupboard.”
During this time, her skin was at its worst. It was inflamed, oozing pus, crusting at several places, scabbing, and flaking. But after three months of continuing with NMT, she finally started to see results.
“My skin is now much better. I am not moisturising anywhere, limiting my water intake to one litre a day, exercising four times a week, and eating lots of protein as well as taking multivitamins and probiotics,” she said.
In April this year, Rachel decided to document her journey through TSW and created a separate Instagram profile, @tsw_rachelkinsey, dedicated to educating more people about this condition. Since then, she has gathered a following of over 200.
Throughout this process, her husband stood by her like a rock.
“My husband never once reacted badly to my condition, slept next to me even when I was oozing and flaking all over the bed and smelt disgusting from the metallic plasma and no shower for days,” she said.
“He cooked for me, did chores for me and always assured me that I looked beautiful – the true definition of in sickness and in health from our wedding vows.”
ENDS
