To better understand women’s health, we need to de-stigmatize menstrual blood

Women with endometriosis are often told that they seek painkillers, scam artists trying to take advantage of the healthcare system. They are referred to as ‘disturbing’, ‘crazy’, ‘pretending’ and ‘psychosomatic’. They are told that their pain may be in their head and that it needs to go beyond it. Stop being…well, stop being a woman. We’re talking about young teenage girls and women with endometriosis who want diagnosis, effective treatments, and compassionate care. There is no cure, and these women deserve one.

Endometriosis is caused when endometrial-like cells grow as “lesions” outside 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 around one in 10 people with wombs, and these patients often suffer for years, on average seven, before they are definitely diagnosed, requiring surgery, and it can take even longer to find treatments.

Why don’t we have better diagnostics and treatments for this disease? Because women’s reproductive health is woefully understudied and underfunded. Let’s be honest, there’s also an unfair “ick” factor; one of the best sources of biological material for studying women’s reproductive health is menstrual blood. Due to its stigma, menstrual blood has rarely been studied in detail.

Especially now, when women’s reproductive health has been thrust into the national spotlight, it is time to speak out and investigate 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 explore and define the cellular, metabolic, genetic and epigenetic diversity of healthy uteri. These profiles could be compared to uteri in the setting of infertility, dysmenorrhea (painful menstrual cramps), uterine infections (such as the carcinogenic human papillomavirus and chronic endometritis), uterine fibroids, perimenopausal changes and uterine cancer. And this biological sample can be easily collected without invasive surgery, using specially designed menstrual cups or external menstrual pads.

Since 2013, my colleagues and I have focused on the study of menstrual blood. We set up the Research OutSmarts Endometriosis (ROSE) study at the Feinstein Institutes for Medical Research to learn how menstrual blood could be collected and used to study endometriosis and develop an early, non-invasive diagnostic test that these women have desperately need. Over 2,000 participants joined the ROSE study (including women with diagnosed endometriosis, healthy controls, and people awaiting diagnostic results). Teens can also participate. We have made great strides in the study of menstrual blood that could one day lead to an FDA-approved diagnosis and more effective and tolerable treatments that could stop or even prevent disease.

Due to chronic pain, many adolescent girls and young women with endometriosis miss school, preventing them from reaching their full potential. As they age, these people find it difficult to get promotions or keep their jobs, due to excessive sick leave. Without a job, they lose their much-needed health insurance, and without insurance, their pain goes unchecked. Some have told me that they are unable to have or maintain intimate relationships. Their overwhelming pain, which can last for days each month, is ignored, minimized and misunderstood. I would not say that these girls and women suffer in silence. They speak, but their suffering is ignored.

Currently, the only drugs available for endometriosis are hormones or hormone therapies, which can cause weight gain, trigger hot flashes, and force patients into menopause. These drugs only treat the symptoms; they do not stop the progression of the disease. Some patients with endometriosis say that these hormonal treatments are worse than the disease.

Does pharmaceutical companies’ neglect of this common disorder stem from an unintended gender bias that puts women’s health at risk? To treat endometriosis and other female reproductive diseases, we need more buy-in and less stigma.

Through the earnest efforts of various collaborative researchers from academia and industry, and committed study participants, menstrual blood will become a clinically useful resource for better understanding uterine health and uterine dysfunction, as well as for diagnostic purposes. It will no longer be seen just as waste – something to throw away every month – but as a biological specimen vital to 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 put finances into perspective, since 2008 the National Institutes of Health has allocated about $176 million to fund endometriosis research. Compare that to the $2 billion for ulcerative colitis, which affects about 1% of Americans.

While diagnosis based on menstrual blood and therapies targeted to the uterus may take a few years to develop, there are things we can do right now. We need to better educate the health care community and make them aware of women’s health issues. Based on the misdiagnosis and underdiagnosis of endometriosis and other uterine health problems, enhanced training is warranted for those attending medical, nursing, and physician assistant schools so that trainees become more informed and understand that pelvic pain is real and must be carefully studied in each patient.

We must raise the level of science, improve diagnostic capabilities, provide better treatments and provide equitable care for all. And to do that, we need to normalize the conversation about menstruation and menstrual blood, in the clinic, in our homes, and in our society.

About Hubert Lee

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