Guest Post by Heather Guidone, CWC, Surgical Program Director, Center for Endometriosis Care
The Center for Endometriosis Care was honored to present at the Society for Menstrual Cycle Research’s 20th Biennial Congress in early June, an event featuring the world’s leading professionals including physicians, nurses, psychologists, sociologists, anthropologists, women’s and gender studies scholars, and many others – not the least of whom was Honoree Gloria Steinem. Tasked with identifying public health challenges and barriers to including menstrual cycle disruption/disorders as key components of women’s health, and explore ways by which to overcome these critical gaps in pelvic health, we tried to drive the point home as to how largely ignored endometriosis is:
“If menstrual health is the neglected house on the block, then endometriosis is the basement.”
We explored and investigated the shortfalls in endometriosis, in that, yes, endometriosis is a disease of menstruation – but it is also true it has far deeper impact on a woman or girl’s life and places a significant public health burden on our society. Endometriosis isn’t merely about painful menses. The disease is a debilitating, costly illness linked to chronic pain, impaired fertility, and significantly reduced quality of life.
Endometriosis affects menstruators and non-menstruators alike (post hysterectomy, post menopause, etc.), and remains fraught by significant diagnostic delays, high treatment failures and consequent recurrence – all of which pose formidable challenges to practitioner and woman alike. Unfortunately, many women and girls are not taught what is ‘normal’ and what may be indicative of a problem; largely, ‘period taboos’ stifle the conversations we should be having about signs and symptoms of the disease.
Moreover, research remains sorely lacking in priority and offers little bench-to-bedside translation; there remains an acute need for coordinated investigation into pathophysiology, precision treatment, association with co-morbid conditions and prevention/cure. Women are too often told the pain is in their head; still others espouse ancient, mythical notions of hysterectomy and pregnancy as cure. None of this is true, and such sentiments are a monumental disservice to those suffering. Sadly, even well-meaning clinicians – not just lay society and the media – remain ignorant of the damaging effects the disease imposes on girl’s and women’s physical well-being, sexual function, fertility and general welfare, creating a vicious cycle of ineffective treatment.
It has been said by some that endometriosis is a disease of the ‘modern age’; that women and girls have brought the disease upon themselves by delaying childbearing in lieu of careers and academic goals. This is completely untrue, as we have seen accounts in the Ebers and Kayun Papyrus’ of what could easily be today translated as endometriosis. There are also rumored cave drawings and Egyptian hieroglyphics depicting uterine pain. As years progressed, we eventually came to a better understanding of endometriosis and the significance of pelvic pain – but this still hasn’t changed society’s view of menstruating women. Menstruation – particularly menstrual pain – remains largely belittled, marginalized, ignored, medicalized and dismissed. It may not be a menstrual hut, but we’re certainly still sending girls away today in the metaphorical sense – away from timely diagnosis and effective intervention for this disease.
Why should we care about painful menstruation? Women bleed, women hurt. Right? Wrong. This disease is not about painful periods. It’s about a debilitating illness that takes tremendous personal and societal toll:
- Drastically reduced overall quality of life
- Severely compromised academic/professional opportunities
- Critically impaired sexual, mental, physical, emotional functionality
- Negative/far-reaching impact on relationships
- Significant loss of productivity
- Erroneous “in your head” diagnoses may lead to emotional/psychosocial issues
- Dependence/addiction accusations
- Often unnecessary/ineffective/repeated medical and/or surgical treatments up to and including hysterectomy do little to help, yet contribute to vast and gratuitous healthcare expenditures