Hayley’s story

From the age of three Hayley suffered prolonged and regular nosebleeds, but, despite many trips to her family GP and local hospital, it was never discovered why.

It was only when she began her periods as a teenager that doctors diagnosed Hayley and her two sisters with Type 1 Von Willebrand Disease. Hayley also had the blood disorder Weak Platelet Agonist Response.

For Hayley, who is speaking out to support Talking Red, The Haemophilia Society’s campaign to raise awareness about women’s bleeding disorders, discussing periods more openly and finding support from others with the same symptoms are two things she hopes will make a difference to women in a similar position to her.

Unlike her sisters, Hayley discovered that the treatment combined with a vast number of hormonal therapies including GNRH analogues she was receiving to deal with her extremely heavy periods was not working. As treatment after treatment failed to make any impact on her debilitating bleeding, she became concerned that her condition was more serious and complex than her original diagnosis.

At the age of 21, after graduating from university she began her first full time job in marketing and events management. She didn’t know it, but she was at the start of what would become a permanent five-year long period.

Hayley said: “I would go through 40 heavy night towels a day. I’d sit on a towel at work just so I could keep going. Eventually I was frog marched home and the firm’s occupational health department said I couldn’t do my job anymore. I lost my job and I lost my social life – I lost friends because I became too unreliable. They didn’t understand why I couldn’t go out.”

Hayley had Cognitive Behaviour Therapy to help her cope with the changes in her life brought about by her bleeding disorders. She said: “My personality type is not conducive to giving up, so it took a long time to convince me that no matter how stubborn I was, I couldn’t control this and it wasn’t my fault.”

By the age of 27 Hayley was also being seen by a gynaecologist to try to find out what was wrong. She was so desperate, her doctor and Hayley began looking into a hysterectomy as previous surgical interventions including Uterine Artery Embolization had slightly improved symptoms, however this was refused due to her age.

It was only when she met a woman online who had the same symptoms but had made more progress with her diagnosis that Hayley was encouraged to get a second opinion and moved to a different haemophilia centre. Finally, she had a breakthrough. Doctors discovered that she had a rare gene mutation, and suggested using a factor concentrate product could help.

Hayley said: “There still isn’t adequate information about period disorders. You have to scroll through a lot of scary information to find what you need. I had great support from women online who were going through what I was experiencing and I’d advise anyone to try to find someone with similar symptoms to get support and advice. I found that you do have to be prepared advocate for your own treatment.”

She began an intensive treatment regime and noticed improvements fairly quickly. Around this time she discovered she was pregnant and now, aged 30, has a healthy one-year-old daughter.

Hayley said: “My life is infinitely better. Just getting the right treatment meant that mentally I improved. It is still not the easiest of lives as damage has been done and, to some extent, I’ll always wonder what would have happened if I’d been diagnosed earlier.”