Women infected with hepatitis C after being given infected blood during childbirth have described how they were “fobbed off” and “gaslit” by medics as they fought to seek help for symptoms linked to the virus.
Many were told they were suffering from conditions including depression, allergies or irritable bowel syndrome as doctors failed to spot that they were trying to fight off the infection.
Doctors thought many women were alcoholics and refused to believe them when they said they had stopped drinking as their liver problems persisted.
Many women waited decades before they were finally diagnosed with hepatitis C and the delay means many have serious and ongoing health issues.
A charity said these women were “let down twice”- first when they were given contaminated blood transfusions and again when they tried to seek help for symptoms.
The Hepatitis C Trust said around 64% of people who received an infected blood transfusion were women.
Joanne Vincent said doctors refused believe she had given up alcohol for almost two years.
As problems persisted Ms Vincent was referred to a specialist but she only found out when she arrived at the appointment that she had been referred to an alcohol liaison nurse.
The 59-year-old was infected with hepatitis C when she received a blood transfusion following the birth of her daughter in 1988.
Ms Vincent, from Worthing near Brighton, now has liver cirrhosis and has to go for checks twice a year to see if she has developed liver cancer.
“I ask myself: ‘if my doctor hadn’t delayed it, could my cirrhosis have been avoided’?” she told the PA news agency.
On her diagnosis, which came 26 years after she was first infected, she said: “My world was ripped out from under me.”
Ms Vincent, who owned a burger van before her health deteriorated, described going “backwards and forwards” to the doctor for years and was diagnosed with conditions including postnatal depression and irritable bowel syndrome before her doctor said her liver problems had been caused by excessive alcohol.
Having only drunk occasionally, Ms Vincent cut out booze altogether but her doctor did not believe her.
“He said ‘you need to stop drinking,’ and I said ‘I have to stopped drinking,’ and he said: ‘that’s not what your liver is saying’.
“That went on or two years – two years I went forwards and backwards, forwards and backwards,” she said.
Finally the GP said he was referring Ms Vincent “to a specialist” and referred her to an alcohol liaison nurse.
But the nurse found the cause of Ms Vincent’s problems and in May 2015 she was given a scan which discovered that she had liver cirrhosis.
“When you have cirrhosis, you go for a test, scan and blood tests every six months because there is a higher chance of developing liver cancer,” she said.
“It’s like playing Russian roulette every six months, it plays on my mental health so badly, it’s so scary.”
Tracey McWilliams suffered serious complications after the birth of her third daughter and needed 36 units of blood six weeks after giving birth in December 1988.
“Unbeknown to me it was contaminated with hepatitis C,” she told PA.
But like many other women in her situation, the diagnosis of the virus came decades after she was first infected.
Ms McWilliams was only diagnosed in March last year, 35 years after the initial infection.
“My GP knew all my history – I was getting itching, I had joint pain, I was sweating. He still never tested me for hepatitis C,” she said.
“He said the itching was due to low folic acid or allergies and he never got to the bottom of it.”
Ms McWilliams changed GP surgeries in November 2022 and the new surgery ordered liver function tests, which prompted Ms McWilliams to do her own test for hepatitis C at home.
Speaking ahead of the final report of the Infected Blood Inquiry, which will be published on May 20, she said: “I thought ‘my God, my liver is going to be shot to bits because I’ve had it for 35 years’.”
The 63-year-old from Bournemouth added: “It’s so frustrating, I was fobbed off but I should have been tested years ago.
“So many women in my situation have gone through this (they) were diagnosed with fibromyalgia, hormones, anxiety.
“We’ve all been fobbed off and never tested.”
Patricia Hopton, from Falmouth, Cornwall, found out she had hepatitis C 40 years after she was first infected.
She received a blood transfusion in 1978 when she gave birth to the younger of her two daughters.
Doctors told her that she nearly died during a particularly difficult labour, which led to her needing a full hysterectomy.
“I ended up having to have 11 litres of blood transfused,” she said. “I was put in intensive care on a life support system.”
Thankful that her life had been saved by a blood transfusion, Ms Hopton decided to go on to donate blood – not knowing she had been infected with hepatitis C during her own blood transfusion.
The 74-year-old told the PA news agency that she thinks about people who may have received her blood donations “all the time”, adding: “When I recovered after the birth of my daughter, I was so grateful that somebody had given me blood that I went and donated blood twice.
“Of course it wasn’t checked back then so I have unwittingly infected other people.”
She suffered symptoms of fatigue and brain fog after becoming infected, but it was initially dismissed by doctors as low iron.
“Straightaway I felt very, very tired, I went my own GP and he said: ‘You need iron, that’s all you need, you lost a lot of blood,’” she said.
Ms Hopton described how she “pushed through” but when symptoms became too much in 2016 she pressed medical professionals for answers.
Doctors initially diagnosed her with a fatty liver so she cut alcohol from her diet.
Follow up scans showed no difference and she was “passed around doctors”.
Only after a referral to dermatology for large blisters on her hands did someone suggest checking her for the virus.
Ms Hopton, who owned a marine business before she retired, added: “It took years to find out what was wrong.
“When it was discovered that I had hep C it explained a lot – the tiredness, the brain fog.
“But it also makes you wonder if you could have gone further in your life and done more things if you hadn’t had that holding you back.
“It really screwed up my retirement, I can’t go sailing, I can’t go do these things that I used to do.”
Statisticians have estimated that around 27,000 people were infected with contaminated blood as a result of blood transfusions.
Rachel Halford, chief executive of The Hepatitis C Trust, said: “Around 64% of people who received an infected blood transfusion were women; many of whom were let down twice by the healthcare system.
“Firstly, when they were given infected blood and again when their symptoms were not properly investigated.
“Over the years, we’ve heard from hundreds of women who felt let down, and on occasion gaslit, by their GP in the search for answers about their health.”
Hepatitis C is often referred to as a “silent killer” due to vague symptoms.
The charity has encouraged anyone who had a blood transfusion before the mid 1990s to get checked for hepatitis C.
At-home hepatitis C tests can be ordered via hepctest.nhs.uk.
People are given a kit which includes a finger prick test which draws a small amount of blood which is sent off for testing.
GPs can also help patients order tests if they cannot do them at home.
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