Lagos State University College Of Medicine (LASUCOM) multipurpose hall student hostel complex Ikeja played host to the much talked endometriosis conference on Thursday, September 13 2018. organised by Endosurvivors International Foundation (ESIF) under the leadership of Miss Olivia Nwankudu. According to her “it is estimated that about 176million women in the world have endometriosis. If all of them were to form a country, the EndoNation will be the 6th largest country on earth tagging closely after our beloved country Nigeria which has an estimated population of 180 million”.
She further Stated that It is a common clinical tenet that 1 woman out of 10 develops endometriosis. In other words, 10% of the entire female population may have endometriosis. For a disease so prevalent, it is worrisome to find that there is little awareness about endo, so much so that it takes an average of 10 to 12 years for a woman living with endometriosis to get a diagnosis in Nigeria and several parts of the world. ESIF is committed to bringing an end to this infamous delay in diagnosis.
To address this lack of awareness among the public and medical communities, ESIF took a bold step in organizing the first ENDOMETRIOSIS CONFERENCE held in Nigeria.
In a presentation tagged “Endometriosis 101” by Dr Temitope Odetayo a Senior Registrar representing the Acting Head, Department of Obstetrics and Gynaecology in the Lagos State University Teaching Hospital/College of Medicine (LASUTH/LASUCOM), he explained that endometriosis affects girls and women of reproductive age. It is the presence of the endometrium (tissue lining the uterus) in areas outside the uterus; sometimes on the ovaries, appendix and distant sites like the lungs. He commented that in his practice, he has seen several women with umbilical endometriosis which was erroneously thought to be a rare form of endometriosis.
The highlight of this conference was an expository talkshow anchored by Olivia Nwankudu, featuring six women living with endometriosis and guest panelists: Professor Bosede Afolabi; the Head, O&G Department, Lagos University Teaching Hospital (LUTH) and Dr. DadaOlu Shonibare, the Director of South-West Zone, Nigerian Educational Research and Development Council (NERDC). Motomori, 39 one of the survivors on the panelstated that she has only twenty (20) days every month to be productive (one-third of her life goes unaccounted-for as she grapples with severe, debilitating pain attributed to endometriosis every month).
Damilola, 29 has to be hospitalized every year. Fluid accumulates in her chest and abdomen during her period, leading to inexplicable pain. Fluid was drained twice from her pleural cavity at 8 months interval and from the peritoneal cavity at 4 months interval (due to ascites)- all because of endometriosis.
Omoyeni, 39 has spent huge sums of money on medical treatmentand a failed surgery which has now exacerbated the pain. She says the financial cost of treating the disease is as long as its name ENDOMETRIOSIS.Yeni had to become a businesswoman, abandoning her dreams of getting a white collar job, because she cannot keep up with the demands of paid employment due to the distress of this disease. Yemisi, 34 only wished she knew in her teenage years that the severe menstrual cramps were a red flag indicating an imminent chronic, incurable illness which has now resulted in her seeking fertility treatments…several years later!
Funke29, was misdiagnosed several times because endometriosis did not even cross the minds of the physicians she had seen as a young girl; even though all the symptoms were present. Fola, 28 has to keep to herself a lot of times, unwilling to make commitments because unrelenting pain might stand in the way of her fulfilling commitment to clients and friends.
These are a few of the harrowing tales of survivors which were shared with an eager audience comprising gynaecologists, general practitioners, nurses, health educators, medical students, nursing students, secondary school students, teachers, religious leaders and several journalists.
There was no dry eye in the audience as these women shared the pain of living with endometriosis and its negative impact on their lives, fertility and productivity. It is not surprising that even though these ladies were from different backgrounds and geographical locations, they are united in the same ordeal- a quest for improved health care for women dealing with this disease and a passion to raise awareness about a medical condition that has stolen so much from them.
Professor Afolabi urged general practitioners to not delay in referring adolescents presenting with a history of severe menstrual pain and chronic pelvic pain because it is better for endometriosis to be suspected, diagnosed and treated earlier than later.
Dr. D.O Shonibare,a renownedhealth intervention/programs evaluation expert encouraged the ladies to keep up the work with focus groups and organize educational programs that will not only raise awareness about endo but equip people with relevant information they need to deal with endometriosis. While it is important to seek government assistance with such projects, he challenged them to strengthen informaland formal groups that can tackle the issue of endometriosis awareness- because “education, not income is the best predictor of a long life”.
