Endometriosis Awareness takes place each year in the month of March, and is aimed at raising awareness of a disease which affects roughly 190 million women and girls of reproductive age worldwide.
Endometriosis is a disease characterized by the presence of tissue resembling endometrium (the lining of the uterus) outside the uterus. It causes a chronic inflammatory reaction that may result in the formation of scar tissue (adhesions, fibrosis) within the pelvis and other parts of the body, such as the fallopian tubes, ovaries and organs neighboring the uterus including the bowel and the bladder. On rare occasions, it may be present in distant organs such as the brain, lungs and the skin.
Endometriosis is 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 (WHO). Endometriosis can affect anyone with a uterus who has periods. Currently, endometriosis has no known cure, and the treatment provided is aimed at managing the symptoms.
Endometriosis is associated with significant social, public health and economic challenges. Girls with severe pain oftentimes miss school, which can have a negative impact on their studies, and further escalating education inequalities. Some adult women with endometriosis also miss work during their period days owing to the debilitating pain, fatigue and anxiety. This can affect their work performance. Additionally, painful intercourse associated with endometriosis can negatively affect the sexual health of women with the condition, which may affect their relationships.
Unfortunately, endometriosis in most cases takes long to be diagnosed. It takes roughly 12 years to get a proper diagnosis for cases. Some of the factors contributing to late diagnosis, especially in Africa, include:
- The prevalent silence and taboo around the topic of periods. This causes many girls and women to suffer in silence regarding complications that accompany their periods, leading to delayed healthcare.
- Lack of awareness about warning signs in menstruation. Extreme, chronic pain during periods is often dismissed as ‘normal period pain’, with women and girls being told not to make a fuss about it because every other woman endures similar pain.
- Lack of access to health facilities where women with severe period pain can access services and where possible, receive endometriosis diagnosis and management services.
- Lack of specialized training among healthcare workers in identifying and managing endometriosis.
- High cost of treatment drugs and surgery for managing the condition.
- Insufficient research and data on endometriosis that can inform policy making and change.
IPPF Africa Region (IPPFAR), through its programs works at addressing the endometriosis challenge in various ways. These include:
- Creating awareness about menstrual health and encouraging people to embrace open conversations around it. Through peer educators and informed by the Comprehensive Sexuality Education (CSE) curriculum implemented in schools by its Member Associations, young people are informed about all aspects of the menstrual cycle, including the signs and symptoms that characterize underlying problems.
- Involving boys and men in menstrual conversations. This is because they are instrumental in addressing stigma and supporting women during menstruation. Boys can be supportive of girls during their menses, while men can help women access treatment at health facilities and seek more information about endometriosis. Our programs involve boys and men in breaking the silence and shattering the taboos on menstrual health conversations.
- Conducting continuous training for clinicians in IPPFAR’s Member Associations and affiliated clinics on all aspects of reproductive health, to ensure that they can recognize any problems and provide an early diagnosis for cases such as endometriosis.
- IPPFAR’s Member Associations provide services at subsidized costs. For those who cannot afford the costs at all, waiver systems are provided for. This enables girls and women to receive endometriosis diagnosis, care and management services, including those in marginalized and low-income areas.
- Helping women and girls access menstrual products, more so for those who cannot afford them. Member Associations work with partners towards this end, such as in Kaduna State, Nigeria.
- The Member Associations collect and avail data to various stakeholders, including Government ministries. This data is instrumental in the development of policies around sexual reproductive health, including menstruation.
- Involvement in advocacy activities that call on Governments and stakeholders to give more priority to women’s sexual reproductive health issues.
IPPF Africa Region remains committed to raising awareness on endometriosis and enhancing access to information and affordable related services for all those who need them.
By Maryanne W. Waweru, Communications Officer, IPPF Africa Regional Office.