I felt like my insides were on fire and I was oozing pus for MONTHS after eczema left me raw and itching to the bone
A WOMAN couldn't have sex with her husband for months after eczema on her vulva left her red raw.
Rachel Kinsey felt like her insides were on fire and she was "itching to the bone" following months of steroid use to treat the skin condition.
The 28-year-old was born with eczema, which impacts around one in five children and one in 10 adults in the UK.
The occasional use of steroid creams kept it under control until 2020, but she suffered a severe flare-up during the first Covid lockdown.
She then used strong steroids regularly for the next two and a half years before she noticed red patches in early 2023.
At first, Rachel mistook this for fresh eczema, but she soon realised it was likely topical steroid withdrawal syndrome (TSWS) and ceased use immediately.
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Sadly, it was too late. She was left in excruciating pain and wounded in a place that is every woman's nightmare.
The higher education coordinator, from Manchester, was red raw, oozing pus, and her eyebrows fell out.
Her clitoris hood was even inflamed, which meant using the toilet and washing was agonising.
Rachel had to stand in the shower, holding her hands between her legs, and simply let the water trickle down while it stung her whole body.
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"The pain felt like I was internally on fire, and my raw skin was burning, stinging, cracking," she said.
"The itch was bone deep. No amount of scratching would satisfy it.
"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 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 torment from TSW got so bad that Rachel could no longer leave the house.
The fear of waking up with new oozing wounds and unbearable pain also scared her to the point of keeping her up all night.
To distract herself, she kept herself busy by working on her laptop so she barely managed to get hours of sleep in a week.
"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," Rachel said.
"Being home-bound was very challenging on my mental health.
"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 though.
"I had to sleep with a towel down so it would absorb some of the ooze, but I would wake up with my wounds stuck to the towel, and it was so painful to peel off."
The pain felt like I was internally on fire, and my raw skin was burning, stinging, cracking.
Rachel Kinsey
She added: ";The hair loss was also 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 one per cent hydrocortisone (a mild steroid for the face and genitals), 0.01 per cent mometasone ( a potent steroid for full body coverage), and 0.05 per cent clobetasol propionate (another potent steroid for the hands).
But when the hydrocortisone stopped working on her body and face, she switched to mometasone, which is much stronger.
After suffering the terrifying effects of steroid addiction, she now knows that this was the worst step she could have taken.
"I was prescribed antibiotics and oral steroids by my dermatologist and they worked like magic - the red patches were gone in mere hours," Rachel said.
"But when, after a few days, I stopped taking them, the patches came back with a vengeance.
"I realised I had enough and decided to go through the whole withdrawal process."
'EXTREMELY HARD'
She immediately began researching TSW and found that many people find success with 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," she said.
"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."
But eventually, the inflammation, pus, crusting, scabbing and flaking began to ease, and within three months, she started to see results.
"My skin is now much better," she added.
Rachel, who documents her journey on Instagram (), credits NMT and her husband for getting her through.
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"He never once reacted badly and slept next to me, even when I was oozing and flaking all over the bed and smelt disgusting from not showering for days," she added.
"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."
What is topical steroid withdrawal?
THE term 'topical steroid withdrawal' refers to a combination of symptoms that may emerge in the days, weeks and months after a person stops using certain medications.
They happen because the body becomes reliant, or addicted, over a long period of time.
The potentially debilitating symptoms of TSW can include:
- Burning
- Weeping
- Flaking
- Shedding
- Peeling
- Spreading
- Swelling
- Redness
- Wrinkling
- Thin skin
- Pus-filled bumps
- Cracking
- Itching
- Nodules
- Pain
- Insomnia
- Hair loss
- Shivering
- Fatigue
- Depression
- Disability
The skin should eventually return to normal, but it may take time.
If you are worried, speak to your GP.
Source: the and