Endometriosis: Silent, Yet Deadly
Endometriosis affects one in ten women around the world, yet little is known about the cause of this debilitating condition which can also render its sufferers infertile. I spoke to experts and victims to shed light on a neglected and potential killer of women in their prime.
Adelaide Damoah is an artist of Ghanaian-British heritage. However, she has not always been a full time artist. Damoah was doing well in her career in the pharmaceutical industry until endometriosis, a much misunderstood and little-known medical condition forced her to take a break. Compelled to give up her profession due to the incapacitating condition she was battling, Damoah redefined herself through her art when her illness became the basis of a mind-blowing series of heartfelt paintings, depicting her pain in a kaleidoscopic form. The negativity of her experience became the catalyst for her artistic expression. Today, Damoah is making a name for herself in the art world with her unusual artwork, which she also uses to raise awareness about endometriosis.
However, many women are not fortunate enough to be in Damoah’s position. Based in the UK, she has access to some of the best healthcare in the world, providing treatment that will help reduce the crippling pain endometriosis inflicts on its sufferers.
In other parts of the world, the stark difference is that they are still waking up to the devastating effects of endometriosis. Described as a condition where tissue similar to the lining of the uterus (the endometrial stroma and glands, which should only be located inside the uterus) is found elsewhere in the body. Its lesions can be found anywhere in the pelvic cavity, ovaries, and fallopian tubes and in rare cases, inside the vagina, bladder, even in the lung, spine and brain of its sufferer. Its most common symptom is pelvic pain but it could also have devastating implications for those affected, including infertility. At present, it is estimated 30 to 40 percent of women affected by endometriosis may not be able to have children.
Dr Krina Zondervan, a genetic epidemiologist and fellow at the Wellcome Trust Centre For Human Genetics (WTCHG) and The Nuffield Department of Obstetrics and Gynaecology (NDOG) Oxford, England. She is currently leading a multidisciplinary research group working on understanding the epidemiology of endometriosis: its prevalence and impact across the world. Zondervan said: “In many countries, the condition is hardly recognised and many women never get a diagnosis. We know very little about the onset of endometriosis. What we have seen is that women who are more exposed to menstrual bleeding over their reproductive life time seem to have a slightly increased risk of endometriosis.”
Lone Hummelshoj is the chief executive of the World Endometriosis Research Foundation (WERF.) Founded in 2006, the WERF is based in the UK and the first of its kind in the world. It is currently working with 32 centres in 20 countries including, Egypt and Nigeria on the African continent. Its aim is to foster research into endometriosis in order to improve knowledge and treatments in the hope that one day, no woman is crippled or prevented from having children by the disease. It also anticipates a time when endometriosis can be prevented.
A former sufferer, Hummelshoj explains that she suffered for 22 years and it took 11 years to get diagnosed and five surgical procedures to rid her of endometriosis. While there are no known causes for endometriosis, she adds that one of the reasons it takes a long time to diagnose the condition is because “many women do not realise for cultural or societal reasons that distress with menstruation for example is abnormal. Discomfort is ‘normal’ but ‘distress’ is not. This means that most do not seek immediate medical help until the use of over-the-counter medicine has been exhausted. The second delay at primary level is that primary physicians dismiss menstrual distress or other cyclical pain and forget that the pain could be due to endometriosis. Hence, there is an added diagnosis delay before women are referred to a gynaecologist.”
According to Hummelshoj, in most countries, developed or not, endometriosis is still not well known at all and many millions of women suffer in silence and do not know that there may be treatments. Professor Hany Abdel-Aleem works at the Department of Obstetrics and Gynaecology, Assiut University Hospital, Egypt. He is a collaborator with the WERF and a participant in a new study recently commenced by the Foundation to assess the direct and indirect effects of endometriosis on society and women. He says to his knowledge, there is no documentation in Egyptabout the number of women who suffer from endometriosis. Hence, its prevalence among women in the country is unknown. However, he encounters women with the condition when investigating infertility and cases of chronic pelvic pain
Dr Bukola Fawole is a consultant obstetrician and gynaecologist at the University College Hospital, Ibadan, Nigeria. Like Abdel-Aleem, Fawole is also a collaborator with the WERF and champions the Foundation’s research in the country. He said: “The study is the first research initiative in Nigeria and the principal goal is to sensitise colleagues about endometriosis.” Fawole says endometriosis has not received sufficient research attention among the African population and there is lack of understanding about the existence of endometriosis in Nigeria. “The reason is primarily that of ignorance on the part of healthcare providers. The training here does not give due cognisance to the condition. It is sad to note that many a woman with the chronic pelvic pain for instance would have passed through several doctors (while) being treated for pelvic infection.”
He adds that there is lack of support for women affected by endometriosis in Nigeria. Due to the lack of understanding of endometriosis in women, misdiagnosis is rife in most cases. Dr Fawole gives the example of “a 17 year old, who had acute lower abdominal pain and went to a private practice; she was misdiagnosed and one of her ovaries, removed. However the pain persisted until endometriosis was later diagnosed by his team. Its social impact on her life is that she was forced to quit school and encouraged to get married by her family as part of intervention for the debilitating pain.”
At present, most researchers agree that endometriosis is exacerbated by oestrogen. Hence, treatments currently available for the disease aim to manage the production of oestrogen in the sufferer’s body in order to relieve her symptoms. Though the WERF is currently undertaking a study to determine the socio-economic cost and impact on the lives of endometriosis suffers, Hummelshoj says the foundation understands that “some women with endometriosis either cannot work or need to reduce their working hours. Chronic pain also has an effect on relationships, and we do hear that relationships break up due to the illness the woman suffers from.” Dr Fawole adds that “Where infertility is involved, marriages may break up and social life may be none-existent.”
Hummelshoj, Zondervan and Fawole agree that the emotional, mental and physical pain endured by sufferers of endometriosis cannot be measured because “emotional and mental pain is so personal and it varies from woman to woman.” But they hope the study by WERF will shed more light on this area.
Zondervan says in order for women in different parts of the world to gain a better understanding of their situation, they need to be informed and empowered with the right information. She added: “We need to raise awareness first, and then train gynaecologists with the specialist skills required diagnosing and surgically treating the disease.”
Zondervan’s point of view is reiterated by Fawole who believes the best way of helping women inAfrica to understand the disease is by “Essentially creating awareness among the populace and to sensitise them about the common symptoms that may be suggestive of the condition, so they can seek care. African scientists must also begin to take interest in the condition and align with colleagues outside the continent in research into the condition. Ultimately, our health systems will have to invest in health technology that will avail our women the necessary care for this condition.”
This article first appeared in the July edition of the New African magazine.
Images: Adeliade Damoah by Ola Shobawale
Artwork by Adeliade Damoah.
Hummelshoj, Zondervan and Fawole by WERF.