Improving the lives and long-term outcomes of people affected by bleeding disorders since 1958

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HNZ Women's Experiences of Menstruation

In mid-2017 one of our members asked us whether there was any support available to help women pay the additional costs of sanitary items, like tampons and pads, borne by women who are carriers, or who have diagnosed bleeding disorders. This reflected an international movement to stop seeing these items as ‘luxuries’, and start recognising them as basic needs. This initial enquiry led to a plan to make a submission to Pharmac, and a survey of the experiences of HNZ women. Phil Constable reports on the survey results.

For women who experience excessive or prolonged menstrual bleeding, the costs associated with sanitary products can be many times that borne by women with a cycle that falls more within the normal range. However, it can be difficult to determine how close to ‘normal’ individual women’s bleeding actually is. There is stigma around discussing menstrual issues, and women with bleeding disorders, or who are carriers, often have no idea that they are anything other than normal.

In response to our member’s query, HNZ determined to find out more about our women’s experiences of menstruation, with a view to submitting our recommendations to Pharmac.

The first step was to design a survey that collected the information we needed.

We used a survey designed for a 2013 international research project entitled The Effects of Menorrhagia on Women’s Quality of Life: A case-control study (Gokyildiz et al) as our starting point. We then formed an advisory group comprised of HNZ women, who helped shape the final survey into one that gathered the information required to inform our Pharmac submission, and that reflected the experiences of HNZ women accurately. The questions gathered statistical information, as well as quality of life information. There were 16 questions in all.

The survey was emailed to 218 HNZ women over the age of 16, with the instruction that young women under 16 were welcome to complete the survey with parental support (if required), or that adults may complete the survey on their behalf (with their permission).

We had a very good response rate, with 71 women (33%) submitting their survey. Of those, 97% had a diagnosed bleeding disorder or carried the haemophilia gene.

Of the 71 women, 62 (87%) self-reported excessive bleeding, menorrhagia, during their period. Fifty-one of 67 (76%) reported they had been affected by menorrhagia for at least a year, with 43 (64%) saying they had been affected for more than 3 years. Surprisingly, 23% of women had never sought or undertaken treatment for their menorrhagia, with only 49% consulting their GP about it. The most common treatments were tranexamic acid (49%), and the oral contraceptive pill (43%).

As you might imagine, a significant proportion (75%) of the women categorized their bleeding as severe or very severe. This included experiencing flooding and the passing of heavy clots for 70% of women. On top of that, the majority of women experienced leaving blood on clothing (77%), on bedding (87%) and on underwear (93%).

The women shared that they generally used tampons and pads, although one used a moon cup. However, the number and frequency of change varied greatly. There were a very high number of women who used more than one sanitary item at a time, with 41 (58%) using a tampon and a pad, 10 (14%) using two pads at a time, and seven (10%) using a tampon and two pads.

As if using that number of sanitary items isn’t expensive enough, 42 (60%) of these women reported needing to change their sanitary items at least every 2 hours at peak times. For some of these women that means in excess of 24 pads and 12 tampons every 24 hours. Furthermore, 44 women (62%) reported that their periods usually lasted longer than eight days each month. That makes for a lot of pads and tampons.

Unsurprisingly, 32 women (46%) reported that their higher than average use of sanitary products has contributed to financial stress or hardship in their family/whānau. This is particularly difficult for families with a lower than average household income. One woman commented, “When I was a student I would have no money to spend $30 on sanitary items per month. I would either use toilet paper or eat bread and rice for a week, meaning, I could not afford food and sanitary items at the same time.” While another said, “When we were a young family this cost for products prevented us from buying other essential Items”

For these women, it’s not just the financial aspect that impacts on the lives of them and their families. Experiencing menorrhagia can also affect quality of life mentally, emotionally, and physically. The women report feeling tired, drained, and depressed. They felt anxious about their period affecting their schooling and work-life. They felt stress about doing regular everyday things, like going out, or even going to sleep, in case they flood the bed. One women said,“I don't like to leave my house. It is embarrassing in front of my boyfriend when I bleed the bed. When I am in public, I have panic attacks if I have bled through my clothing. I get very stressed.” While another said, “You sometimes feel you are living half a life. Iron deficiency following heavy bleeding leaves you feeling tired, grumpy, and unable to cope.”

Following the survey the information gathered will be used in a couple of different ways. The primary use will be to inform an HNZ submission to Pharmac. This submission will advocate for more affordable access to sanitary products for women with diagnosed bleeding disorders, or who carry the haemophilia gene.

We’ll also be using the information to design a poster for presentation at the WFH World Congress in Glasgow. This poster will be seen by attendees from around the world, and will highlight the good work being done for women by HNZ.

The information gathered will also form the basis of discussions at the 2018 Women’s Wellness Weekend. This event is for women aged 18+ who have a diagnosed bleeding disorder, or who carry the haemophilia gene. The weekend is scheduled for Wellington, at the Copthorne Oriental Bay, on the weekend of September 14 – 16.