The hidden toll and extraordinary neglect of endometriosis, that affects an estimated 176m women around the globe, causing many to suffer a life of pain and debilitation and sometimes infertility, is revealed in a report in The Guardian. One woman in 10 of reproductive age has endometriosis, it is estimated, and yet often their primary care doctors do not know what it is and the specialists to whom they are sent are ill-informed, the report says. Vast numbers of women are under-treated or badly treated. It can take years to get a diagnosis and during that time women may suffer severe pain and are unable to work, socialise or maintain a sexual relationship. The disease does not always have symptoms and may be the cause of half of all unexplained infertility.
Endometriosis has existed in the twilight for centuries because of society’s reluctance to discuss what was euphemistically known for so long as “women’s troubles”. The lack of research and funding for a disease that affects so many women is “a major scandal”, the report quotes Lone Hummelshoj, who heads the World Endometriosis Research Foundation and the World Endometriosis Society, as saying. “Endometriosis affects women in the prime of their life. It is not a lifestyle disease. It is not a disease you get later in life. It attacks teens, young women when they should be out being active, working, having children, having sex – 50% of them are struggling with sex because it is too painful,” she said.
In the US, with 7.6m women affected, the estimate was $80.4bn a year; in the UK, which has 1.6m sufferers, the cost was estimated in 2012 at £10.6bn. In Australia, there may be 550,000 women affected, costing the economy A$6bn. The numbers are comparable to diabetes – and yet there is only a fraction of the awareness of the condition and help for those afflicted.
Experts say the disease is little known. “The people we have polled have never heard of it,” said Jane Hudson Jones, CEO of the charity Endometriosis UK. “I have never come across anybody in the general public who knows about it. Yet it can be absolutely devastating.” Surveys of their own membership showed that 25% had felt suicidal because of it. “It can affect pretty much every area of your life – your work, career, income, relationships and fertility. And many are constantly in pain.”
Women who are lucky enough to have a primary care doctor who recognises the symptoms are referred to a gynaecologist. The only way to diagnose the disease is through a laparoscopy – keyhole surgery that allows the clinician to view the endometriosis. But, the report says, most gynaecologists do not have the specialist training to remove the tissue they see, which in severe cases is often very difficult to access. It often involves the bowel or bladder, which are not parts of the body gynaecologists usually deal with.
Geoff Reid in Australia, one of the leading experts, believes the disease may be getting more aggressive. “I have been dealing with endometriosis for 25 years. I just don’t believe that 20 to 25 years ago we were missing the sort of people that we see today,” he said. “I see young women in their early 20s with dreadful colorectal endometriosis and I can’t believe we were missing that. We may have to some extent, but it is my observation over the years that the disease is becoming worse. You see some of the most pitiful people with this disease – it’s awful. People who specialise in endometriosis certainly share that view.”
The report says the care women can get varies massively around the world and within countries, and is often dependent on what they can afford. In the US, insurance companies pay the same amount for any endometriosis surgery, regardless of the method or extent of the disease or the specialisation of the doctor. In the developing world, women may get no help at all. “There are a lot of countries that don’t even recognise its existence, especially the Middle Eastern countries,” said Reid.
At the University of Oxford in the UK, researchers are investigating the entire human genome of women with the disease, comparing their genetic makeup with others who do not have it. It is known that about 50% of endometriosis is inherited. “We need very large numbers of cases and controls, larger than we or any other centre could collect alone,” said Krina Zondervan, professor of reproductive and genomic epidemiology. That will have to involve collaboration.
The Oxford team, led by Zondervan and consultant gynaecologist Professor Christian Becker, have been involved in putting together a global standardisation initiative, to ensure researchers around the world now collect compatible data.
But, the report says, funding is short. Even in the US, less than $1 a year is spent in research per woman who suffers from the disease. In contrast to diabetes, which receives more than $1bn in funding each year from the National Institutes of Health, endometriosis research receives just $7m from the NIH each year. And that is down from $14m in 2011.