In the runup to International Women’s day as celebrations and messages poured in from all fronts stating undying support and goodwill for women across the world a thought struck me. This month also happens to be the Endometriosis month and support for women with Endometriosis is to be totally missing. There seems to be a dichotomy, a disparity in what the world seems to be expressed in comparison to what women in the real world were experiencing.
The World Health Organisation states the key facts on its website.
• Endometriosis is a disease where tissue similar to the lining of the uterus grows outside the uterus, causing pain and/or infertility, it affects roughly 10% (190 million) of reproductive-age women and girls globally
• It is a chronic disease associated with severe, life-impacting pain during periods, sexual intercourse, bowel movements and/or urination, chronic pelvic pain, abdominal bloating, nausea, fatigue, and sometimes depression, anxiety, and infertility.
• The variable and broad symptoms of endometriosis mean that healthcare workers do not easily diagnose it and many individuals suffering from it have limited awareness of the condition. This can cause a lengthy delay between the onset of symptoms and the diagnosis
• At present, there is no known cure for endometriosis, and treatment is usually aimed at controlling symptoms
• Access to early diagnosis and effective treatment of endometriosis is important but is limited in many settings, including in low- and middle-income countries.
• There is a need for more research and awareness raising around the world to ensure effective prevention, early diagnosis, and improved management of the disease.
When the excitement around Women’s day is over, most of us will forget that millions of women are still struggling with severe pain and have no empathy at home or in the workplace. They still have to continue caring for their family, their jobs, and their life and the various expectations placed on them. For some women who experience serious and chronic physical or mental health conditions, one of their most daunting challenges is obtaining the belief and validation of healthcare providers, family members, and friends. Women’s experiences in our group (Women with Wings) reflected a form of implicit bias, discrimination, and disempowerment that women have faced for centuries. Many recounted experiences with clinicians who shamed or scolded them for their physical and mental health issues, made humiliating remarks about their bodies and weight, and attributed their health issues to “poor self-management and a personal failure to be amenable to “cure”
Women with Wings- Endometriosis Support Group decided to change this narrative this year. We reached out to women, men, healthcare professionals, and people on the street and asked them if they would join us to raise awareness around Endometriosis. And we heard a resounding YES. Almost everyone had a friend, a family member, or an acquaintance who has similar problems and was not yet diagnosed or was undergoing treatment. We put together a program to raise awareness by joining hands with various like-minded partners and are organizing an ENDORUN in five cities, Delhi, Mumbai, Pune, Hyderabad, and Kolkata. The run will help mobilize support for women suffering from endometriosis but more importantly will provide a voice to those who are unheard, to those suffering in silence from excruciating pain and stigma. The run will kickstart a dialogue to understand how we can close the gap between the onset of symptoms and diagnosis, bring reliable and correct information to women who desperately seek it as they move from villages and small towns to cities in search of treatment, and galvanize a momentum to enforce gold standards in treatment and diagnostics. It will strive to remove taboos around infertility and help women seeking treatment ask the right questions.
Investing in Women’s health pays rich dividends. Investing in Women with Endometriosis has the following benefits and will help women and families address this difficult problem with ease
Endometriosis has significant social, public health, and economic implications. It can decrease quality of life due to severe pain, fatigue, depression, anxiety, and infertility. Some individuals with endometriosis experience debilitating endometriosis-associated pain that prevents them from going to work for or school. In these situations, addressing endometriosis can reduce absence from school or increase an individual’s ability to contribute to the labor force. Painful sex due to endometriosis can lead to interruption or avoidance of intercourse and affect the sexual health of affected individuals and/or their partners. Addressing endometriosis will empower those affected by it, by supporting their human right to the highest standard of sexual and reproductive health, quality of life, and overall well-being.
