“Endo what?”, she said. This is a common response of those who have never encountered this disease. Pronounced en-do-me-tri-osis, it is one of the most complex and least understood diseases within the medical field, often resulting in numerous misdiagnoses. This disease only affects women.
More than 176 million women worldwide, regardless of ethnicity, race or social class have Endometriosis. Yet, very little is known. This is a chronic, painful and debilitating disease, in which the tissue that usually makes up the lining of the uterus is found on other organs in and around the body. Although most symptoms are indicative of a “normal” menstrual cycle, there are some symptoms that are synonymous only to endometriosis, and may include; pain with intercourse, painful bowel movements, excessive bleeding and infertility. As to what causes this condition, there is no definitive answer.
In the Caribbean, though statistics on prevalence are sporadic, many women are affected. Within Barbados, it is estimated that one in ten women have endometriosis, in Jamaica 100,000. Although these figures are significant, there is still no arm dedicated to specific research in the area within the Caribbean.
Religion perpetuates the taboo
Christianity is the dominant religion practised in the region, passed down after centuries of slavery and colonisation. Throughout biblical texts, women are taught to be ashamed and silent about their menstrual cycles, and generally, it is still a topic that people sometimes find challenging, given the secrecy that surrounds it. The root cause of this shame stems from religious ideologies that portray a woman as unclean and impure. Therefore, because of the uncomfortable nature, or the shame experienced with a menstrual cycle or period, it has become common practice to keep what women are physically experiencing within the home.
Mary, a masters student at the University of the West Indies, told us “during my period, I have to walk around with two sets of underwear and an extra pair of pants, for fear of an overflow and the embarrassment that comes from people staring at me.”
“Because so little has been dedicated worldwide to the awareness of the menstrual cycle, as well as other women’s health issues, it is often a common thought that periods must be painful”
In the Caribbean women’s roles in society, affected by these cultures, rely on their ability to reproduce and take care of the home. Traditionally, women are primarily recognised for their reproductive roles within society, and childlessness is still stigmatized. Caribbean women are considered the primary nurturer and caretaker of the home and are taught how to care for younger siblings from an early age and to assist with household chores more so than their male counterparts.
Discrimination in the home
Females are taught to learn to endure, to press on in secret, even when facing debilitating pain – after all, The Bible mentions that a woman’s pain in childbirth is part of the suffering brought into the world through sin. Throughout my life, I have witnessed and experienced first-hand, women who have had to endure what they described as sharp, stabbing pains, that usually didn’t subside with medication. One co-worker once mentioned it felt as though her insides were “ripping her apart.”
In female-headed households in the Caribbean, women face even greater discrimination. As the family’s provider and caretaker, they feel an even larger responsibility, and the time for pain is not scheduled in their busy days. To remain financially stable, some women are forced to “show up” to work, even though their productivity may be significantly decreased. The lack of knowledge and research results in clueless doctors offering wrong diagnoses, or female friends taking the pain as simple period pain.
Because so little has been dedicated worldwide to the awareness of the menstrual cycle, as well as other women’s health issues, it is often a common thought that periods must be painful, but it is not so. In fact, research shows that while menstrual discomfort is common extremely painful periods are not. More awareness and research around women’s health is a significant part of the journey towards gender equality.
Our health is our freedom
For women, physical symptoms such as bloating, and fatigue can adversely impact day-to-day emotions. A changing body image, because of a bloated stomach, is an emotional and psychological consequence of the lack of knowledge on the condition. Many women go undiagnosed for years and endure body changes and extreme pain.
“Giving more importance to diseases that affect women would defy existing gender roles”
“As a teacher, having to stand in front of a classroom of 15-20 7-year-olds, and explaining why my belly looks so big every other month is exhausting,” says Kate. Fear of the pain can also have impacts on women’s lives, “the stress I feel, not knowing if the pain this month will be worse than the last.” said Jane, who was diagnosed in 2003.
Where do we go from here?
Within the Caribbean, there are a number of support groups, which offer a safe haven for women. However, to date, there is no allocated resource centre available within the region. In Barbados, there is the Barbados Association of Endometriosis and PCOS, in Jamaica the Better Awareness and Support for Endometriosis, and the Trinidad & Tobago Endometriosis Association just to name a few.
Despite the help provided, there is still a long way to go. Developing a research centre in the Caribbean to add to the statistical knowledge available for the region is a fundamental step to destigmatizing the disease and helping patients. This would assist doctors with making a more definitive diagnosis as well as improve the standard of care available to mothers, daughters, sisters and friends.
Health inequality within the world, which is rarely discussed, lends to the bias that exists in effectively diagnosing women. Giving more importance to diseases that affect women would defy existing gender roles and perhaps aid in the advancement of gender equality in the Caribbean.