Women with endometriosis are often told to look for pain pills, scammers who try to take advantage of the health care system. They are called “destructive”, “crazy”, “pretending” and “psychosomatic”. They are told that their pain may be in their heads and they may move beyond it. Stop being – well, stop being a woman. We are talking about young teenagers and women with endometriosis who want diagnosis, effective treatments and compassionate care. There is no cure and these women deserve it.
Endometriosis is caused when it is similar to the endometrium cells grow as “lesions” 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 places. The condition affects approximately one in 10 people with uteruses and these patients often suffer for years, an average of sevenbefore they are finally diagnosed, which requires surgeryand it may take even longer before they find treatment.
Why do we not have a better diagnosis and treatment of this disease? Because women’s reproductive health is extremely under-studied and under-funded. Let’s be honest, there is an unfair “ick” factor; one of the best sources of biological material for the study of women’s reproductive health is menstrual blood. Due to its stigma, menstrual blood is rarely examined in detail.
Especially now that women’s reproductive health is at the center of the spotlight, it’s time to talk freely and examine menstruation and menstrual blood to promote women’s health.
Menstrual blood can help researchers like me understand women’s reproductive health. It provides tools for researching and defining the cellular, metabolic, genetic and epigenetic diversity of healthy uteruses. These profiles can be compared with uterine infertility, dysmenorrhea (painful menstrual cramps), uterine infections (such as human papillomavirus and chronic endometritis), uterine fibroids, perimenopausal changes and uterine cancer. And this biological sample can be easily collected without invasive surgery – with the help of menstrual cups or specially designed external menstrual pads.
Since 2013, my colleagues and I have been focusing on the study of menstrual blood. We found out The study is superior to the study of endometriosis (ROSE). at the Feinstein Institute for Medical Research to learn how menstrual blood can be collected and used to test for endometriosis and to develop an early, non-invasive diagnostic test that these women so desperately need. More than 2,000 participants joined the ROSE study (including women diagnosed with endometriosis, healthy controls, and those awaiting diagnostic results). Teenagers can also participate. We have done great advances in the study of menstrual blood that one day could lead to FDA-approved diagnostics and more effective and tolerable treatments that could stop or even prevent the disease.
As a result of chronic pain, many teenagers and young women with endometriosis miss school, which prevents them from reaching their full potential. When they are older, these people find it difficult to be promoted or keep their jobs due to unnecessary sick days. Without work, they lose their much-needed health insurance, and without insurance, their pain remains uncontrollable. Some have told me that they cannot have or maintain an intimate relationship. Their great pain, which can last for days every month, is rejected, diminished and not understood. I would not say that these girls and women suffer in silence. They talk, but their suffering is ignored.
Currently, the only drugs available for endometriosis are hormones or hormone therapies that can cause weight gain, cause hot flashes and force patients to enter menopause. These drugs only treat the symptoms; they do not stop the progression of the disease. Some patients with endometriosis say that these hormone therapies are worse than the disease.
Does the neglect of this common disorder by pharmaceutical companies stem from an unintentional gender bias that puts women’s health at risk? To treat endometriosis and other reproductive diseases in women, we need more involvement and less stigma.
With the strong efforts of various collaborators from academia and industry and involved participants in the study, menstrual blood will be developed into a clinically useful resource for better understanding of uterine health and uterine dysfunction, as well as for diagnostic purposes. It will no longer be considered just rubbish – something that has to be thrown away every month – but as a vital biological model for women’s health.
Funding will follow with ongoing conversation and demand from the public and clinicians. With funding comes more research and more progress. To look at finances in perspective, since 2008 the National Institutes of Health has been providing funding approximately $ 176 million to fund endometriosis research. Compare that to $ 2 billion for ulcerative colitis that affects about 1% of Americans.
While diagnostic therapies based on menstrual blood and targeting the uterus can take several years to develop, there are things we can do right now. We need to better educate the health community and raise awareness of women’s health. Based on misdiagnosis and underdiagnosis of endometriosis and other uterine conditions, improved training is guaranteed for those attending nursing, nursing and medical assistant schools so that learners become more aware and understand that pelvic pain is real and should be carefully examined in each patient.
We need to raise the standard of science, improve diagnostic capabilities, provide better treatment and provide fair care for all. And to do that, we need to make the conversation about menstruation and menstrual blood common in the clinic, in our homes, and in our society.