Women with endometriosis are often told that they are looking for painkillers, scammers who are trying to take advantage of the health care system. They are called “destructive”, “crazy”, “pretentious” and “psychosomatic”. They are told that their pain may be in their head and go beyond it. Stop being – well, stop being a woman. We are talking about young adolescents and women with endometriosis who want diagnosis, effective treatment and compassionate care. There is no cure, and these women deserve it.
Endometriosis is caused by endometriosis cells grow as “lesions” on the outside uterus – usually in the pelvic cavity around the ovaries, bladder, intestines and rectum and rarely in the lungs and elsewhere. The disease affects about every 10 people with uteri, and these patients often suffer for years, an average of sevenbefore they will be finally diagnosed which requires surgeryand it may take even longer before they find a cure.
Why do we not have a better diagnosis and treatment for this disease? Because women’s reproductive health is very poorly studied and underfunded. Let’s be honest, there’s also the unfair “ick” factor; One of the best sources of biological material for studying women’s reproductive health is menstrual blood. Because of the stigma, menstrual blood has rarely been studied in detail.
Especially now that women’s reproductive health has become the focus of the country, it is time to speak freely and explore menstruation and menstrual blood to promote women’s health.
Menstrual blood can help researchers like me understand women’s reproductive health. It provides the means to study and determine the cellular, metabolic, genetic, and epigenetic diversity of healthy uteri. These profiles are comparable to uteruses in infertility, dysmenorrhea (painful menstrual pain), uterine infections (such as human papilloma cancer and chronic endometritis), uterine fibroids, perimenopausal changes, and uterine cancer. And this biological sample can be easily assembled without invasive surgery – using menstrual cups or specially designed external menstrual pads.
Since 2013, my colleagues and I have focused on the study of menstrual blood. We established OutSmarts Endometriosis Study (ROSE). at the Feinstein Institute for Medical Research to learn how to collect and use menstrual blood to study endometriosis and develop an early non-invasive diagnostic test that is so necessary for these women. More than 2,000 participants joined the ROSE study (including women diagnosed with endometriosis, healthy, and those awaiting diagnostic results). Teenagers can also participate. We did great progress in the study of menstrual blood that one day could lead to FDA-approved diagnostic and more effective and tolerable treatments that could stop or even prevent the disease.
As a result of chronic pain, many adolescents and young women with endometriosis miss school, not allowing them to reach their full potential. In old age, these people have difficulty with promotion or job retention due to extra days of incapacity. Without work they lose much-needed health insurance, and without insurance their pain remains unfounded. Some have told me they can’t have or maintain an intimate relationship. Their excruciating pain, which can last for several days each month, is rejected, underestimated and misunderstood. I would not say that these girls and women suffer in silence. They express themselves, but their sufferings are ignored.
Currently, the only drugs available to treat endometriosis are hormones or hormone-based therapies that can cause weight gain, cause hot flashes and force menopausal patients. These drugs only treat the symptoms; they do not stop the progression of the disease. Some endometriosis patients say that these hormonal treatments are worse than the disease.
Is the neglect of this common disorder on the part of pharmaceutical companies due to unintentional gender bias that threatens women’s health? To treat endometriosis and other female reproductive diseases we need more activity and less stigma.
Thanks to the serious efforts of various, collaborative researchers from academia and industry, as well as involved research participants, menstrual blood will be transformed into a clinically useful resource for a better understanding of uterine health and dysfunction as well as for diagnostic purposes. It will no longer be seen only as garbage – something that needs to be thrown away every month – but as a vital biological model for women’s health.
Funding will go on with a lengthy conversation and demand from the public and clinicians. With funding comes more research and progress. To put finances in perspective, since 2008 the National Institutes of Health has been allocating about $ 176 million to fund endometriosis research. Compare that to $ 2 billion for ulcerative colitis that affects about 1 percent of Americans.
Although it may take several years to develop diagnostic methods based on menstrual blood and targeted therapy for the uterus, there are things we can do right now. We need to better illuminate the medical community and raise awareness about women’s health. Based on misdiagnosis and inadequate diagnosis of endometriosis and other uterine diseases, those attending medical schools, nursing schools and paramedics need better training to make students more aware and understand that pelvic pain is real and needed. carefully examine each patient.
We need to raise the standard of science, improve diagnostic capabilities, provide better treatments and provide equal assistance to all. And for this we need to make the conversation about menstruation and menstrual blood common in the clinic, in our homes and in our society.