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For decades, women’s health has been under-researched and misunderstood in the scientific and medical communities. This includes endometriosis, a complex condition that causes tissue similar to the lining of the uterus to grow outside the uterus, affecting roughly 10% (190 million) women of reproductive age worldwide.
According to the Endometriosis Foundation of America, “Medical professionals often misdiagnose women who have endometriosis for two reasons: they know little about endometriosis because of the lack of focused education in medical schools, and endometriosis symptoms can be similar to those of more common diseases or conditions.”
According to the foundation’s website, “Endometriosis is not simply a ‘menstruation disease,’ it is a complex systemic disease associated with tissue similar to the endometrial lining of the uterus growing outside the uterus that can affect the whole body.”
Along with difficulty conceiving, endometriosis can cause irregular menstruation cycles, severe pelvic pain, and other symptoms. The condition does not just impact female reproductive organs, but the appendix, intestines, leg nerves, and more. In rare cases, the condition affects the lungs, kidneys and brain.
One of the only ways to diagnose pelvic endometriosis is through a diagnostic laparoscopy. This is a procedure where a tiny cut is made in the abdomen to get a small tissue sample that can be examined under a microscope for any abnormalities.
Due to the presence of the endometrial tissue outside the uterus, traditional ultrasounds and blood or urine tests cannot diagnose it. The lack of solid diagnostic methods leads to misdiagnosis and miscommunication between providers and patients. As a result, women with endometriosis are sometimes told they have pelvic inflammatory disease, sexually transmitted infections, or cancers like ovarian or colon cancer. Other times, their experience is dismissed altogether as a mental issue.
The lack of research and medical expertise raises a variety of concerns for women worldwide. Recent studies suggest that racial disparities add to the misdiagnosis of endometriosis, underscoring a systemic gap in healthcare. A 2023 NIH review found that the condition was especially neglected in Asian women.
“Its prevalence seems to differ across ethnicities, with the disease affecting and presenting with advanced stages in Asians more than any other race. Despite this, data on endometriosis in Asians is limited, and there seems to be a lack of support for endometriosis research in Asia,” states the review.
“Rice, the staple food of most Asians, is a major source of inorganic arsenic, while certain spices, particularly turmeric, used by many South Asians may be a potential source of lead exposure,” the review continued. Though the exposure to these chemicals has been well-documented in Asia, the research is still limited.
To understand nuanced conditions like endometriosis, human perspectives play a vital role. Professor Iva Burdett of the Chemistry/Biochemistry department at Queens College emphasized that young and creative minds are the driving force in medicine and science. “If we have more women scientists, MDs, PhDs, and researchers, we will have more people who actually care about making progress in these fields, precisely because they have had a personal connection to it,” said Professor Burdett.
She highlighted the importance of fostering resilience and enthusiasm, while supporting the livelihood of researchers so that they can continue their work.
“Some of the best scientific breakthroughs have come out of the universities and the work of students. We should make it a priority to give our future generations a reason to make research their life calling and make it feasible. Only then will we see real progress in forgotten and neglected issues,” she noted.
For women worldwide impacted by endometriosis, the search for help is not just about research. It is about improving the quality of life and advancing women’s health. Once veiled misinformation, endometriosis is finally gaining a spotlight through increased investment and advocacy empowering future scientists to bridge gaps in reproductive health research.
