Despite experiencing very heavy periods, the trigger point for diagnosing Janet’s bleeding disorder was when she had her wisdom teeth extracted.
Twice, aged 19 and 23, Janet experienced haemorrhages after wisdom teeth were taken out which resulted in a diagnosis of Type 1 von Willebrand Disease. As far as she knows, she is the only person in her family to have the condition.
Now 60, Janet remembers being told by doctors to go to the library to read up about it, and left hospital with no understanding of VWD at all.
Speaking to promote Talking Red, The Haemophilia Society’s campaign to raise awareness among women and health professionals about women’s bleeding disorders, Janet said she felt alone after her diagnosis and found it very difficult to cope with her heavy periods.
Janet was on a 60 day-cycle and would haemorrhage for the first 12 days – making it very difficult to maintain her career and social life.
She said: “When I was due on I wouldn’t go out. I was too embarrassed to go out. My periods affected my whole life – everything was driven by the calendar. I didn’t have the guts to commit suicide, but that’s how low I felt. I couldn’t cope with it.”
Janet was permanently anaemic as a result of her heavy bleeding, which meant she was also exhausted.
She was put on medication which stopped her periods for many years and enabled her to lead a more normal life, although she continued to have health complications as a result of VWD. Aged 43, after the discovery of five large fibroids in her womb, Janet had a hysterectomy.
Janet said: “The hysterectomy gave me my life back. I felt better and healthier – I could do simple things like plan holidays again.”
From her experience of living with a bleeding disorder, Janet believes more must be done to educate the medical profession. She said: “If someone goes to their GP because of heavy periods, they need to listen and not just dismiss them. They need to investigate why. I’ve got a good GP, but she doesn’t understand VWD – she asks me questions and I feel I’m educating her.
“For any woman who is worried about their periods, I would encourage them to persevere, to keep pestering their GP and if necessary to ask straight out to be tested for VWD.
“Things have thankfully changed since I was diagnosed. I wouldn’t want any girl to go through what I went through.”