Understand endometriosis through awareness raising and education

By Fatima Kathrada (BPharm), University of the Witwatersrand (Johannesburg) Lecturer, Pharmacist, Researcher & Women’s health advocate 

Endometriosis affects roughly 10 per cent reproductive-age women.

The month of March that sees International Women's Day (IWD) and Women's History Month (WHM) also sees a further moment for awareness raising and action - Endometriosis Awareness Month.

What is endometriosis?

Endometriosis, a gynaecological condition characterized by endometrial-like lesions outside of the uterus, has variable clinical presentations.

Despite the serious impact endometriosis can have on the quality of a woman's life, it alarmingly takes on average eight years from its onset of symptoms for a woman to be diagnosed with endometriosis, and as many as six out of every ten women remain undiagnosed.  

Some of the most common misconceptions about the condition include the normalization of severe period pain. This normalization pattern of dysmenorrhoea (often referred to as menstrual cramps) and other menstrual pain symptoms cause women, particularly adolescents, to avoid seeking medical attention leading to delays in diagnosis and progression of the condition with further negative impacts on quality of life and fertility. Too much stigma surround a women’s menstrual cycle and the associated painful symptomology. A patient's own knowledge gap may lead to delayed diagnosis. Historically, healthcare professionals are the primary sources of health education. However, the rise of technology, internet and social media has enabled a shift in knowledge sources to a more individualized approach to symptom recognition. 

Diagnostic delays, misdiagnosis and overlooking 

Delays in diagnosis are also due in part to a lack of proper insight on the presentation of endometriosis on the part of medical professionals. Numerous studies show physician reluctance in including endometriosis as part of their differential diagnosis particularly when patients presented with back pain and gastrointestinal symptoms, rather than the standard gynaecological symptoms. Furthermore, patients who presented with common symptoms such as dysmenorrhoea, often do not elicit further evaluation by medical professionals indicating the normalization of menstrual pain on the part of the medical professionals too. Endometriosis is not the only overlooked cause of dysmenorrhoea, others causes include adenomyosis, fibroids, and ruptured ovarian cysts. An additional cause of the diagnostic delay of endometriosis is the requirement of a surgical diagnosis as the only reliable method of diagnosis. This compounds the obstacles to diagnosis for patients and medical professionals leading to diagnostic delays. 

The prevalence of primary dysmenorrhoea may be exaggerated as many women believe they are merely suffering from primary dysmenorrhoea. Despite the high incidence of menstrual pain, there is an underlying social assumption that period pain is normal and just something women deal with. This mind set fosters powerlessness as if it is just part of womanhood. 

Education and awareness raising is key

Providing education to women, driving awareness campaigns is essential in ensuring women are better informed and equipped to make smarter, timeous, informed decisions about their health. By educating women, the powerful menstrual mythology that keeps them in pain needlessly is brought to light to break the stigmas surrounding them. 

To address the gaps in knowledge among healthcare professionals, further specialized inclusion of such conditions in curriculum in necessary as well as funding for research in these highly under-researched and underfunded areas. 

'Normal' is not always normal

The widespread belief — shared by the medical system and the public alike — that menstrual pain is 'normal' poses a barrier to the prompt diagnosis of endometriosis and creates a public health crisis. 

Women, step forward and help yourself, friends and family members to better understand endometriosis, its symptoms, its causes and its treatment. Importantly, seek help.