Endometriosis is invisible, neglected disease: Experts

Access to early diagnosis and effective endometriosis treatment is critical, but it is limited in many settings, particularly in low- and middle-income countries

Endometriosis is invisible, neglected disease: Experts

HYDERABAD: Endometriosis can end a patient's career and can also hamper their lifestyle and education, according to Dr Vimee Bindra, Endometriosis Excision Surgery Specialist, Co-Founder Endocrusaders, and founder of the Endometriosis Foundation of India.

Endometriosis affects around 10 percent (190 million) of reproductive-age women and girls worldwide, with more than 25 million affected in India. Endometriosis currently has no known cure, and treatment is often directed at symptom management. Access to early diagnosis and effective endometriosis treatment is critical, but it is limited in many settings, particularly in low- and middle-income countries.

Endometriosis symptoms include chronic pelvic pain, severe dysmenorrhea, deep dyspareunia, pain during defecation or urination, loin pain, irregular bleeding, constipation or diarrhoea, decreased fertility, and chronic fatigue.

Numerous and severe symptoms, chronicity of the condition, side effects of medicines, and diagnostic delays all have a substantial impact on women's entire quality of life, including professional performance, and place great expectations on treating physicians.

Consequently, illness symptoms, particularly endometriosis-related pain and exhaustion, can disrupt the development and realisation of long-term goals such as a professional career and make it difficult to meet the demands of work. About 40 percent of women with endometriosis report impaired career growth due to endometriosis, and about 50 percent experience a decreased ability to work due to their chronic disease.

"The quality of working life is a major aspect of the quality of life overall, which in turn is the most important predictor of the total cost of disease. About 66 percent to 75 percent of the total costs of endometriosis arise from reduced ability to work and not from direct costs of treatment. Being able to work in a desired occupation may not only have a strong impact on a woman’s financial situation and her perception of and attitude toward daily work, but it can also be an important health factor. Unsatisfactory work and limited possibilities for change are associated with increased levels of headache, fatigue, and depression," says Dr Vimee Bindra.

Frequent sick leaves and reduced work productivity can put affected women under greater observation by superiors and under greater pressure to deliver full performance. The rather intimate and gender-specific nature of the most common endometriosis symptoms tends to make affected women feel embarrassed.

Hence, a better understanding of endometriosis and its impacts on any aspect of life, including professional activity, not only by medical professionals but also in society and politics, would help affected women and their families reduce the negative consequences of the disease, says Dr Vimee Bindra.

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