Women with endometriosis are often told that they are seekers of pain cures, scam artists trying to take advantage of the health system. They are called “disruptive,” “crazy,” “fake it” and “psychosomatic.” They are told that their pain may be in their heads and move beyond it. Stop being good, stop being feminine. We are talking about young teenagers and women with endometriosis who want a diagnosis, effective treatment and compassionate care. There is no cure, and these women deserve one.
Endometriosis is caused when endometrium-like cells grow as “wounds” on the outside of the uterus — usually in the pelvic cavity around the ovaries, bladder, intestines and rectum and rarely, in the lungs and other areas. The condition affects approximately one in 10 people with uterus, and these patients often suffer for many years, on average seven, before they are fully diagnosed, requiring surgery. , and may take longer before they are cured.
Why don’t we have better diagnostics and treatments for this disease? Because women’s reproductive health is uneducated and underfunded. Let’s be honest, there’s an unfair “ick” cause, too; one of the best sources of biological material for the study of women’s reproductive health is menstrual blood. Because of its stigma, menstrual blood is rarely studied in detail.
Especially now, since women’s reproductive health is highlighted in the national spotlight, it is time to freely discuss and investigate menstruation and menstrual blood to improve women’s health.
Menstrual blood can help researchers like me understand a woman’s reproductive health. It provides ways to assess and determine the cellular, metabolic, genetic and epigenetic diversity of a healthy uterus. These profiles can be compared to the uterus in the case of infertility, dysmenorrhea (painful menstrual cramps), uterine infections (such as cancer caused by human papillomavirus and chronic endometritis), uterine fibroids, perimenopausal changes, and uterine cancer. And this biological sample can be easily collected without invasive surgery — using menstrual cups or specially designed external menstrual collection pads.
Since 2013, my colleagues and I have focused on the study of menstrual blood. We established the Research OutSmarts Endometriosis (ROSE) study at the Feinstein Institutes for Medical Research to determine how menstrual blood is collected and used to study endometriosis and perform the early, non-invasive diagnostic tests that are so needed in these cases. woman. More than 2,000 participants participated in the ROSE study (including women with diagnosed endometriosis, healthy controls and those awaiting diagnostic results). Teenagers can also participate. We have made great strides in investigating menstrual blood that could one day lead to an FDA-approved diagnostic and more effective and tolerable treatments that can stop or even prevent the disease.
As a result of chronic pain, many teenagers and young women with endometriosis are out of school, preventing them from reaching their full potential. As they get older, these people find it difficult to promote or maintain their jobs, due to excessive days of illness. Without a job, they will lose the health insurance they need, and without insurance their pain is out of control. Some tell me they can’t form or maintain close relationships. Their excruciating pain, which can last for days each month, is rejected, minimized and misunderstood. I would not say that these women and girls suffer in silence. They speak, but their suffering is ignored.
Currently, the only medications available for endometriosis are hormones or hormone -based therapies, which can cause weight gain, provoke hot flashes and force menopausal patients. These medications only treat the symptoms; they cannot prevent the progression of the disease. Some endometriosis patients say these hormonal therapies are worse than the disease.
Does the neglect of this common disease by pharma companies stem from unintentional gender discrimination that puts women’s health at risk? To treat endometriosis, and other reproductive diseases in women, we need more buy-in and less stigma.
With the serious efforts of diverse, collaborative researchers from academia and industry, and participating study participants, menstrual blood can be a useful clinical resource for a better understanding of human health. uterine and uterine dysfunction, as well as for diagnostic purposes. It is no longer considered just garbage — something to throw away every month — but as an important biological specimen for women’s health.
Funding will follow ongoing dialogue and demand from the public and clinicians. With the funding comes more research and more development. To put the financial outlook, since 2008, the National Institutes of Health has allocated an estimated $ 176 million to fund endometriosis research. Compare that to $ 2 billion for ulcerative colitis, which affects about 1 percent of Americans.
While menstrual blood-based diagnostic and uterine-targeted therapies may take several years to develop, there are things we can do now. We need to better educate the health care community and raise awareness of the health status of women. Based on the misdiagnosis and underdiagnosis of endometriosis and other uterine-health conditions, there is a need to improve training for those attending medical, nursing and physician-assistant schools so that trainees can become more aware and understand that pelvic pain is real and that it should be carefully investigated in each patient.
We need to raise the standard of science, improve diagnostic capabilities, provide better treatments and provide equitable care for all. And to do that, we need to make common the conversation about menstruation and menstrual blood, in the clinic, in our homes and in our society.