Endometriosis: an invisible and neglected disease that affects 180 million women. – Women Deliver

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April 30, 2018 Dr Chrysoula Zacharopoulou, Founder of Info-Endometriose Info-Endometriose

Endometriosis: an invisible and neglected disease that affects 180 million women.


Menstruation is an experience shared by women across the world yet is viewed differently depending on the culture and community. But what is one common theme spanning most cultures? The stigma and embarrassment around discussing a woman’s “time of the month.”

Contrary to popular perception, menstrual health is not just a “women’s issue” but an issue of gender equality and social justice.

While progress has been made to advance gender equality and to improve health outcomes for girls and women, there are still many “invisible” health issues with both emotional and economic implications for millions. And the silence surrounding endometriosis is the perfect example.

Endometriosis is a chronic gynecological disease affecting 1 in 10 women and girls of reproductive age across all countries and socio-economic groups. It occurs when tissue that typically lines the inside of a woman’s uterus instead grows on the outside of the uterine wall.  Often painful and potentially debilitating, symptoms include painful periods, chronic pelvic pain, discomfort/pain during sexual intercourse and bowel movement, and even infertility.

Despite over 176 million diagnosed cases of endometriosis, there is still no cure and not enough research to drive the progress that is needed to improve health outcomes for those affected.  In fact, it often takes up to 10 years for endometriosis to be diagnosed likely due to the lack of awareness among physicians and women themselves who experience menstrual pain.

And with the stigma and shame around discussing one’s period, girls and women often remain silent through the pain rather than asking questions and seeking the medical care needed.

There are often sexist attitudes to consider – beliefs that women’s pain is “normal during menstruation” or that women who complain about discomfort during sex or their periods are “hypochondriacs or hysterics.”

The ripple effect of endometriosis goes far beyond a woman’s discomfort – it impacts her fertility, her sexuality, her ability to be productive in professional and social settings and beyond.

The economic burden of endometriosis is high and similar to other chronic diseases such as diabetes. The difference, however, is in the minimal investments made by governments, businesses, and the medical community to cure or treat this often forgotten illness.

The global community has an urgent responsibility to make the investments needed to help these girls and women who suffer from an “invisible” and unjust disease. Specifically, the global community can take the following actions:

  1. Provide menstrual health and Comprehensive Sexuality Education programs in schools. This can help to increase adolescent awareness of endometriosis and encourage shifts in gender norms and perceptions about women’s health more broadly.
  2. Support government and organization campaigns to promote national and international awareness of endometriosis. Carrying out information campaigns on the social and economic impact of endometriosis can change the way women manage their health, well-being, and working life and the way they are treated by society.
  3. Educate and train the medical community to ensure early detection and adequate treatment. Health training varies greatly from country to country, giving rise to significant health inequalities. Acknowledging women’s sexual and reproductive health and specific illnesses in health programmes geared towards health professionals in each country is crucial in the effort to advance gender equality.
  4. Integrate endometriosis into reproductive, maternal, neonatal, infant and adolescent health policies and programs. Not including it in policies and programs, will lead to continued lack of awareness, diagnostic delays, and inappropriate/inadequate treatment and referral of patients – particularly in resource-limited settings.
  5. Encourage global recommendations for the treatment of endometriosis. The hormonal treatment currently used my many causes abnormal periods and is often taboo/inaccessible.
  6. Coordinate a worldwide epidemiological and socio-economic study about endometriosis and its consequences. This is a critical step toward raising awareness about this unknown illness, collecting essential data, and collating the necessary evidence on the social, health, and economic implications of endometriosis.

Significant changes are needed to shift general perception about women’s health and about menstruation-related pain more specifically. Without doing so, the status of this disease, and of the women who live with it, will continue to go unaddressed, further perpetuating gender inequalities.

And with an illness affecting millions, now is the time to invest in research and solutions to bring endometriosis out of the shadows and to the forefront of the global health and gender equality movement.

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