Bizarre symptom that ended up being a sign I had incurable liver disease: Woman, 29, reveals she had constant itching – which felt ‘like ants on your skin’ – before diagnosis was devastating

A newlywed couple has revealed how her constant itching was a sign of an incurable liver disease.

Flo Moffat-Charles, from Kendal in Cumbria, started feeling ill two months after she married her husband Josh.

The 29-year-old suffered from extreme fatigue and nausea, as well as chronic itching on her hands and feet.

While undergoing months of tests, the couple decided to cancel their ‘dream’ honeymoon to South America, for which they quit their jobs and lost their £1,500 deposit.

Ms Moffat-Charles was eventually diagnosed with primary sclerosing cholangitis (PCS), a rare liver disease for which there is no cure.

Flo Moffat-Charles, 29, (right) from Kendal Cumbria, started feeling ill two months after marrying her husband, Josh, 29 (left)

Flo takes 13 medications a day to control her symptoms and uses ice packs on her feet to soothe the intense itching

Flo takes 13 medications a day to control her symptoms and uses ice packs on her feet to soothe the intense itching

Ms Moffat-Charles, who works as a fundraiser, was also diagnosed with autoimmune hepatitis, caused by the immune system mistakenly attacking healthy liver cells.

She takes 13 medications a day to control her symptoms and uses ice packs on her feet to soothe the intense itching.

“For a while it was really scary to think about anything long-term because it suddenly felt like so many decisions were out of our control,” she said.

‘At the time it was all-consuming. We thought about that every day.

“My feet, my hands and my legs felt like they were on fire.”

What is primary sclerosing cholangitis (PCS)?

primary sclerosing cholangitis (PCS), is a rare chronic liver disease that causes the bile ducts inside and outside the liver to gradually shrink due to inflammation and scarring.

There could be as many as 10,500 people living with PSC in the UK, but estimates vary.

Many people have no symptoms at first, and the disease is not noticed until a routine blood test in patients with ulcerative colitis or Crohn’s disease.

Some people PSC causes no symptoms. Most people have few or no symptoms for years.

What are the symptoms?

  • Fatigue
  • Abdominal discomfort on the upper right side
  • Itch
  • Jaundice – yellowing of the skin and whites of the eyes
  • Fever, shaking and chills

Source: British Liver Trust and PCS Support

PCS is a rare chronic liver disease that causes bile ducts inside and outside the liver to gradually shrink due to inflammation and scarring, says the British Liver Trust.

Although the disease can occur on its own, it is often associated with inflammatory diseases of the colon, especially chronic ulcerative colitis.

There could be as many as 10,500 people living with PSC in Britain, but estimates vary, according to the charity PCS Support.

Scientists don’t know exactly what causes the disease.

Mrs Moffat-Charles’ husband Josh, also 29, a partner manager in the events industry, said he feels ‘helpless’.

He said: ‘The itching is almost like ants on your skin that you can’t get rid of.

“It’s a pretty intense feeling that you can’t really alleviate.”

The newlyweds, who tied the knot in September 2023, were looking forward to their honeymoon when Flo started experiencing symptoms.

Mr Moffat-Charles said: ‘We had booked a one-way ticket and planned to travel through Peru, Argentina, Chile and Bolivia for at least four months.

“We had saved the money over the years and had both quit our jobs in anticipation of the trip.”

But in November 2023, Ms Moffat-Charles developed itching of her hands and feet, nausea, constant fatigue and jaundice.

Her husband said: ‘She slept with ice packs on her feet. Taking cold baths in the middle of the night to try to ease some of her horrible symptoms.”

However, Ms Moffat-Charles was only diagnosed in January after undergoing several blood tests, an MRI scan, an ultrasound scan and a biopsy.

Her condition is progressive and there is currently no cure, leaving her struggling with symptoms, including medication-induced insomnia.

She said: ‘The itching comes and goes, but it’s not nearly what it was before. It’s kind of an acceptable level of itching now.”

Now back to working full-time, the couple is trying to ‘seize the day’ after the life-changing diagnosis.

Ms Moffat-Charles said: “Things still feel quite fresh.

The newlywed admitted that at the beginning of her marriage she did not expect to be diagnosed with a lifelong illness

The newlywed admitted that at the beginning of her marriage she did not expect to be diagnosed with a lifelong illness

To help raise awareness of primary sclerosing cholangitis, Josh plans to run the London Marathon in April

To help raise awareness of primary sclerosing cholangitis, Josh plans to run the London Marathon in April

‘We are still having doctors do blood tests to make sure they are happy with how my body is responding to medication.

“But once I feel like we have a routine with that, we’re going to do as much as we can and use every annual vacation day.

“It’s kind of a reminder every day that you have to make the most of it.”

But the newlyweds admitted she didn’t expect to be diagnosed with a lifelong illness at the start of her marriage.

“When you get married and take vows ‘in sickness and in health’ you don’t expect that to be tested so quickly,” she said.

“It’s been a tough few months, but Josh has kept me smiling and laughing through it all.

‘I know it’s been so hard for him to see me go through this and feel so helpless.

“He would stay up every night when I couldn’t sleep because of the itching – and get me cold towels to put over my body to try to soothe it,” she added.

To help raise awareness of primary sclerosing cholangitis, Mr Moffat-Charles plans to run the London Marathon in April.

He set one up Just give page to raise money for the charity PSC Support – one of the few organizations providing patient support for the disease.