A Women's Perspective
Suzanne O'Callaghan is Policy Research and Education Manager, Haemophilia Foundation Australia
Women bleed too
Chair: Joanna McCosker
Managing bleeding problems: menorrhagia and pregnancy - Dr Stephanie P’Ng
Personal experience - Elyse, QLD
Question and Answer Panel
Nurse - Dale Rodney
Outreach worker - Linda Dockrill
Women and girls’ experience of bleeding disorders is a new and developing field and this session covered a lot of ground, with many valuable contributions from affected women in the audience.
Stephanie P’Ng began the session by highlighting that menorrhagia is relatively underdiagnosed as a symptom of bleeding disorder, although it is very common in von Willebrand disease and a significant issue for up to 57% of women who carry the gene for haemophilia. Its effect on quality of life is substantial, leading to anaemia for some and preventing women and girls from participating fully at work, school, in their recreation and sport.
Definitions of menorrhagia in the past have been unclear, but are now becoming more specific, for example:
- Heavy menstrual bleeding >7 days
- Loss of blood <80ml (how many products did you use?)
For women with bleeding disorders, there is also the question of their other bleeding symptoms and the need to clarify whether they are having other bleeding episodes indicative of a bleeding disorder, eg, after dentistry, surgery or childbirth.
For females with bleeding disorders, management of their bleeding symptoms is complicated by their hormonal and other gynaecological and obstetric issues. Stephanie P’Ng outlined current approaches to treatment in Australia and the potential for using oral contraceptives to manage bleeding; and that it is unusual to need to resort to factor treatment, but this can be useful, especially if a woman is trying to become pregnant.
A key message for women was the importance of having good communication between her Haemophilia Centre and her other treating specialists to prevent bleeding complications: her gynaecologist, obstetric team, and other specialists, particularly surgeons.
Elyse, a young woman with both haemophilia A and VWD, then told her personal story. She spoke about the lack of understanding she experienced at school, and with some health professionals, especially in the private health sector. Travel insurance has also been a challenge for her, but after many years with same company and no claims, she has been able to have excess removed.
Elyse’s story sparked a stimulating discussion. Questions about her unusual combination of bleeding disorders prompted the explanation from a geneticist in the audience that females with bleeding disorders can have their chromosomes skewed when more of their normal chromosomes are turned off and more of their altered chromosomes are turned on. Some women then made the point that everyone’s experience is different and it is important to make sure you don’t rely on other family members’ experience to make your own decisions. And possibly the most interesting tip for the day for this audience was that menstrual cups are available in Australia (check the internet!) and are very helpful for measuring as well as preventing blood from coming through on clothes.