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It is estimated that one in every 10 South African women will be diagnosed with endometriosis. According to the World Health Organisation (WHO), this condition affects roughly 10% (190 million) of reproductive-age women and girls globally.
March was Endometriosis Awareness Month, celebrated globally, to create awareness of 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.
According to WHO, endometriosis is a disease in which tissue similar to the lining of the uterus grows outside the uterus. It can cause severe pain in the pelvis and makes it harder to get pregnant. Endometriosis can start at a person’s first menstrual period and last until menopause.
The cause of endometriosis is widely unknown and there is no known way to prevent it. There is also no cure, but its symptoms can be treated with medication or, in some cases, surgery.
“Endometriosis has significant social, public health and economic implications,” says WHO in a statement. “It can decrease quality of life due to severe pain, fatigue, depression, anxiety and infertility. Some individuals with endometriosis experience debilitating pain that prevents them from going to work or school.”
Among others, common symptoms include:
- Painful periods - Pelvic pain and cramping can start before menstruation and last during.
- Pain with intercourse - pain during or after sex is common with endometriosis.
- Pain with bowel movements or urination
- Excessive bleeding
- Infertility
“Painful sex due to endometriosis can lead to interruption or avoidance of intercourse and affect the sexual health of affected individuals and 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.”
Lindsay Adams, the founder of #AgainstPeriodPoverty, an organisation aimed at educating girls about menstrual health, had a full hysterectomy at the age of 50 owing to endometriosis. “I had to do a lot of research about the condition. There [are] so little resources out there.”
Adams had known since her 20s that she would not be able to conceive due to a diagnosis regarding her womb but thinks now in hindsight she may have been misdiagnosed. “What I have learnt in my research is that it can take up to 10 years for symptoms to show, so there can be a lot of misdiagnosis.
“I was married, and we were trying to conceive and then I got checked. I was told I could not have children. When the decision was made for me to have a hysterectomy it was not a difficult one for me to make.”
This was the best course of action for Adams and the severity of her condition.
She recalled having debilitating abdominal pain, accompanied by heavy bleeding for an extended period. She would be bed-ridden for the duration of her period, lasting seven days or more.
“In 2019, I was so weak my husband said he was taking me to the hospital, but I said I would go the next day. He insisted and we went to the hospital. My blood count was so low they booked me in immediately. A doctor felt my abdomen and immediately said he needed to call a gynecologist.”
During that same hospital stay, she was officially diagnosed, and the hysterectomy was scheduled. Unknowingly, she had been living with the condition for years.
“This started out of the blue. My periods were never this painful. It happened later in my life.”
While there is a consensus by professionals that reproductive-health awareness is found lacking in communities, Adams said this cannot be a contributory factor to the high number of cases recorded globally.
“It is not that women are not taking care of themselves. There is no known cause and there is no cure either.”
