Why endometriosis remains largely unaddressed in Nigeria, by experts
• Group traces 40 per cent of infertility cases to gynaecological disease • Endosurvivors recount their ordeals, create awareness
AS the struggle for survival in the present economy continues, basic needs are now mostly unaffordable, even as the burden of basic menstrual hygiene products overwhelm many women today due to affordability concerns, while consequently increasing period poverty in Nigeria.
With little or no awareness of endometriosis, a gynaecological disease affecting 10 per cent of women globally, thousands of women continue to suffer in silence, both the physical and psychological trauma that is associated with the disease.
While most Nigerians continue to attribute infertility to spiritual problems and resort to prayers instead of seeking for medical attention, the public and most frontline healthcare providers are still not aware that distressing and life- altering pelvic pain is not normal.
Endometriosis is a disease in which tissue like the lining of the uterus grows outside the uterus and this can cause severe pain in the pelvis and make it harder to get pregnant; it can start at a person’s first menstrual period and last until menopause. It is a complex disease with variable and broad symptoms therefore making it difficult for healthcare providers to easily diagnose it. According to the World Health Organization ( WHO), the cause of endometriosis is still unknown and there is no known way to prevent it. It has no definite cure yet, but its treatment is mostly aimed at controlling the symptoms or, in some cases, surgery. Many knowledge gaps exist, and there is need for non- invasive diagnostic methods, as well as medical treatments that do not prevent pregnancy.
Endometriosis which most times, comes with chronic pains can affect girls/ women throughout their reproductive age and sometimes afterwards and some of the common symptoms of the disease are severe or chronic pain in the pelvis especially during their menstrual cycle, heavy bleeding during or between periods, bloating, nausea, fatigue, depression or anxiety and trouble getting pregnant.
There is a lack of multi- disciplinary teams with the wide range of skills and equipment needed for the early diagnosis and effective treatment of endometriosis especially in low and middle- income countries such as Nigeria. Access to specialised surgery for those who need it is sub- optimal and largely expensive, while tools to screen and accurately predict patients and populations who are most likely to have the disease are lacking.
Period poverty remains largely unaddressed in Nigeria with over 37 million women/ girls who can barely afford their monthly sanitary products. The rise in sanitary products has escalated over the roof in recent time, driving a lot of women and young girls to start using unhygienic products during their periods like tissue, rags amongst others which ultimately leads to infections and in worse cases infertility.
To commemorate International Women’s Month and raise awareness on Endometriosis and the importance of early diagnosis, Endosurvivors International Foundation ( ESIF) organised a five kilometre walk in Lagos, which was tagged; “Walk& Cycle4endo” to educate the public on the disease. Through the programme, ESIF is advocating for improved quality of care for patients and providing support to endometriosis patients in Nigeria.
According to the organisation, Endometriosis is a leading cause of infertility all over the world and about 35 to 40 per cent of infertility cases may be caused by the disease in Nigeria. Some of the members of ESIF and survivors of Endometriosis spoke to journalists and recounted their ordeal and experiences prior to diagnosis and their current pain management treatments.
Nkiru, a 27- year- old survivor and a member of the ESIF narrated her experiences with the disease and how she emerged a survivor. She told The Guardian about the misdiagnosis she had at first, accompanied with a couple of surgeries before a proper diagnosis was made.
She said: “Normally our period comes with pain but the first time I experienced severe pain was 2013 and it was unexplainable, and I was taken to the emergency unit. They first realised I had a cyst that was almost ruptured, and I had to undergo an immediate surgery. I had never heard of endometriosis and in the space of one year, I had another cyst; I had my first surgery in September and another by July and that was when they realised I had endometriosis.”
Nkiru, who also highlighted the negative impact of the disease on her professional life. “I work in an office and whenever I am menstruating, everyone would know; from the security man to everyone in my office. So, I will take like two days off from work to go to the hospital and coming back from the hospital usually feels like thongs are placed around my belly and most times I won’t let anything, not even clothes, touch my belly.”
Speaking about the impact it has made in her personal life, Nkiru said “it affected her love life, and she lost a relationship due to the constant crisis that came with having endometriosis. She said, “I lost a relationship because of endometriosis, I think he left me because I was always having a crisis, and everyone was scared that I won’t be able to have children.”