A mum who had suffered from heavy periods thought they were normal until she discovered she had a condition that almost killed her.
Jo Traunter, 50 says, “I thought my heavy periods were normal but my rare condition almost killed me”
Jo spent decades with periods that lasted ten days but thought nothing of it, given her sister and mum were the same.
Jo also bled uncontrollably whenever she cut herself or had teeth out – but was labelled “a bleeder” by family and the medical profession
Jo bruised so easily she always wore clothes that covered her arms and legs, and was even feared to be an abused child when taken to hospital at 10 years old.
But it wasn’t until she was aged 37 she’d finally find out what all her bizarre symptoms meant when she came close to death.
And now the academic at University of Hull wants other women to know their heavy periods may be worth investigating.
Jo, from York, told The Sun: “During my periods I would have five days of significantly heavy bleeding where I’d be having to be constantly changing.
“Then it was more of a normal stream for the another five days, tapering off towards the end.
“I never spoke about it with friends. Young women nowadays are more open about periods.
“Whenever I had wisdom teeth taken out I had horrendous swelling or bruising.
“I seemed to be given the label of ‘you’re a bleeder’ – even medics. They suggested it was just one of those things. So I assumed I just bled a bit more than others.
“The bruising was the worst and I used to always cover my legs with jeans or skirts because they were always always bruising, especially as a teenager.”
Jo recalled the time she was bouncing on the bed as a child at her aunt’s house and fell off, breaking her arm.
She said: “It was very very painful but I still seemed to have mobility in my arm.
“Two days later the pain wasn’t subsiding and it was very black. But my aunty said ‘you’re a bruiser’. We went to the hospital and got it checked anyway.
“There were safeguarding concerns when they saw my arm and then the rest of the bruising on my body – I remember the nurses counting them, there was so much fuss.
“They timed how long a pinprick would take to stop bleeding. There was an acknowledgement that I had prolonged bleeding but nothing happened.”
Over the next 20 years, Jo experienced more heavy bleeding events – particularly after the birth of her eldest children, now 28 and 26.
It wasn’t until Jo’s third pregnancy that a doctor finally rang alarm bells, having coincidentally been present during the second birth nine years prior.
Jo’s third baby had implanted into an old C-section scar and there was no way it could be delivered vaginally.
My husband asked at one point what happens if you can’t stop the bleeding. They said any situation like that is life threatening
Jo said: “The file had landed on this doctor’s desk saying that there were problems with this [the third] pregnancy and it would need to be a C-section.
“He remembered my name, called me and explained that I needed to see a haematologist and he was making an appointment immediately.
“It was the first person who said there is a potential problem and solution.”
When Jo saw the haemolotoligst at 20 weeks pregnant, she finally got a diagnosis aged 37 years old.
She was told she had von Willebrand disease (VWD) – a common and genetic condition, explaining why Jo’s family also had so many symptoms.
People with VWD bleed more than usual because they do not have enough of the proteins that clot blood.
Jo says blood tests she got during investigations as a child had come back as normal because they counted platelets – and people with VWD have normal platelet levels. It was also a lesser known disease back then.
Although finally having answers was a relief, it put extra concerns onto the delivery of Jo’s third child.
Jo said: “My husband asked at one point what happens if you can’t stop the bleeding.
“They said any situation like that is life threatening, but they were confident all the different departments working together would be as successful as it possibly could be.”
However, Jo went into labour two months early, in the middle of the night, and there was no time to prepare for the birth.
Jo said: “They knew the treatment I responded to, so had human clotting proteins ready to control the bleeding. These proteins are what are missing in my blood.
“But it wasn’t enough to stop the bleeding. They had to do an emergency hysterectomy [to remove the uterus].
“I was just relieved that myself and my baby were alive. I think after I was in shock, when reality hit me.”
More testing revealed that Jo’s youngest and eldest child both had VWD, and the three of them now take various medications to control their types of the condition.
Jo said: “I’m quite passionate about raising awareness for other women and girls who may be suffering the consequences of this, month after month.
“We hear stories of young women having horrendous bleeding problems every month. They are unable to attend school, go to work or leave their houses.
“They don’t need to be struggling. There are treatments that can control their condition. If they do find themselves in a situation potentially like I did, it can be life changing.”
Jo is a trustee for The Haemophilia Society – the only UK-wide charity for everyone affected by a bleeding disorder – which has launched a new symptom checker as part of their Talking Red campaign.
To do the quick test, click here.