Endometriosis: what we don’t know is costing us a fortune – SBS News

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Menstrual disorders are very common amongst girls and young women, and usually include period pain and mood disturbances (like feeling angry or sad unexpectedly). Period pain affects around three quarters of all women during their reproductive life (the years when they have regular periods), and is especially common in young women in their teens and early adult life,  where about nine out of ten young women in Australia will experience period pain.

Despite learning about reproductive health and puberty as part of the PDHPE curriculum in school, most young women think of period pain as a normal part of becoming a woman. This seems to happen all around the world, not just in Australia or New Zealand.

Because period pain is so common, making it “normal” seems harmless enough. But this carries a big risk. While most young women will have what’s called ‘primary dysmenorrhea’, where the pain is related to hormonal changes, at least one in ten will have some kind of ‘secondary dysmenorrhea’. This is where there are structural changes in the pelvic area. The most common cause of secondary dysmenorrhea in young women is endometriosis, where tissue similar to the lining of the uterus is found in places outside the uterus, where it doesn’t belong. While women with primary dysmenorrhea tend to have their symptoms improve or disappear as they get older, the same doesn’t happen with endometriosis.

Another major concern is that there is very poor understanding of the symptoms of endometriosisby adolescents. Because young women think it’s normal to have pain, they usually don’t seek medical advice but prefer to use self-management, like heat and over the counter painkillers. This emphasis on self-management and not seeking medical help means that women can suffer from severe pain for years.

Unfortunately, often when women do speak to their doctor about their pain, they tend to have a negative experience, where they don’t feel like their pain and symptoms are taken seriously, even when they are really  suffering. This is at least in part a contributor to the long delay (which varies but is often at least five years) between the first symptoms and diagnosis that occurs in women with endometriosis. Sadly, even after a diagnosis, many women still can’t get their pain to manageable levels, and often feel like pain dominates their lives.

So what is the impact on women’s professional lives, work, and finances from having endometriosis?

A previous study across Europe found that the total cost per woman with endometriosis per year was €9579 with the bulk of costs being due to absence from work. This means that the economic burden of endometriosis is similar to or higher than other chronic disease burdens such as heart disease and diabetes. Based on this data, there was an estimate for Australia of an impact of $7.7 billion Australian dollars per year.

Our recent study on 407 women in Australia with endometriosis and other types of pelvic pain (currently under review) has found that the $7.7 billion AUD per year figure is likely to be an underestimate of the true cost. While we can’t discuss our final data until it’s been through peer review, our estimate is significantly greater, in the order of billions per year. Like previous research, most of these costs weren’t related to direct medical costs (like surgery, or medications) but to loss of productivity.

Women with endometriosis tend to have used up all their sick leave, so they often have to be at work while in significant pain. This is called ‘presenteeism’. Think of it like being at work when you have the flu, you might be able to be physically present, but you feel dreadful and you aren’t running at full capacity. The impacts of regular time off work or perceived low productivity can be wide ranging, with women reporting that these impacts ranged from ‘mild’ issues such as losing a chance for promotion, to having employment terminated or having to resign due to stress.

We found a strong link between women’s pain scores and the economic impact, as pain increased so too did the total cost, with women having the most severe pain having a 12-time greater loss of productivity than those with minimal pain. The impact of this is that women with severe pain have six times greater cost per year overall compared to those with minimal pain. Even a modest decrease in pain, 10-20 per cent, made a significant difference in the amount of money lost to productivity each year.

We really need to ensure that women are getting their pain taken seriously and getting adequate pain control, as reducing pain, even by a small amount can make not only a huge positive impact on women’s quality of life, but save them, and the economy, a lot of money.

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