THE BURDEN OF ENDOMETRIOSIS ON WOMEN AND GIRLS IN UGANDA
Date Published:
THE BURDEN OF ENDOMETRIOSIS ON WOMEN AND GIRLS IN UGANDA
Background and introduction
Most women and girls of reproductive age in Uganda are experiencing severe symptoms of endometriosis. This is attributed to the fact that; the disease is diagnosed nine to ten years later after it has progressed to stage four (severe stage). The sufferers experience severe symptoms such as severe cramps during menstruation; prolonged heavy bleeding; diarrhea; vomiting; problems in emptying their bowels and urinating; bloating- bleeding through the umbilical and in the lungs; pelvic pain and painful sexual intercourse; swelling of the belly; develop free fluid (ascities) in the abdomen; among others. Moreover, some women with endometriosis experience debilitating pain that prevents them from going to work while the school-going girls are prevented from continuing with their education/school. Consequently, many women and girls have lost their jobs and dropped out of school respectively. In addition, most women and girls have had their quality of life decreased due to severe pain; experienced fatigue; depression; anxiety; and infertility and many have lost their uteruses. The associated prolonged heavy bleeding and painful sexual intercourse renders women unable to engage in consensual marital sex, creating rifts within families. The women are often ostracized and victimised for what is beyond their control.
Current Situation Analysis
Endometriosis affects roughly 10% (190 million of reproductive age women and girls globally. Presently, there is no known cure for endometriosis and treatment is aimed at controlling symptoms and improving quality of life. In Uganda, research and awareness on endometriosis is still limited. However, from what is available, about 80 per cent of endometriosis cases are initially misdiagnosed as urinary tract or pelvic infections. This often leads to under management (diagnostics and medication) and unabated symptoms. The general public and most front-line healthcare providers are not aware that distressing and life-altering pelvic pain is not normal, leading to normalization and stigmatisation of symptoms and significant diagnostic delay. Patients who could benefit from medical symptomatic management are not always provided with treatment due to limited awareness of endometriosis among primary healthcare providers.
Solutions/Interventions made by ECCU
In 2021, after experiencing the severe symptoms and challenges presented by endometriosis and based on the recognised need, the founder, together with a Ugandan medical doctor with specialist training in Emergency Medicine and vast experience in managing endometriosis, started Endometriosis Care Centre Uganda (ECCU). ECCU is an independent, non-governmental, and not-for-profit professional organization that seeks to intervene in the physical, emotional, and psychological wellbeing of women and girls with endometriosis in Uganda.
Specifically, the centre aims to; create awareness through increased access to reliable information; generate information on endometriosis in Uganda and its complications through research, documentation and publication; provide holistic interdisciplinary medical care to those affected by endometriosis; build the capacity of victims to cope with the effects of endometriosis and provide technical support to government, NGOs and other development partners with regard to relief and therapeutic intervention for women and girls with endometriosis.
Currently, we partner with hospitals and private medical practitioners with specialist training in Obstetrics & Gynaecology where clients are referred for specialized care and management. During 2023, a total of thirty-two (32) women were referred for endometriosis management to these hospitals and the number is expected to grow during 2024. Of these Seventeen (17) women referred were confirmed to have endometriosis and needed support in management of the condition while the rest presented with severe symptoms for diagnosis. Following referral and diagnosis, case follow-ups are carried out to ensure that the clients get the appropriate support needed. In addition, ECCU offers online medical counseling and psychosocial tele-counseling services to those experiencing anxiety and depression as a result of the condition. Psycho-education is also offered to the caretakers and families of the clients on the effects of endometriosis and how they can support the patients through the healing process and coping with the disease.
A report on our achievements was presented to the Department of Reproductive Health in the Ministry of Health of the government of Uganda to help them appreciate the magnitude of the problem. The department is to incorporate a comprehensive approach that involves the victim, caretakers and family to managing endometriosis. Accordingly, this approach should cater to the physical and psychosocial needs of women and girls with endometriosis, to capacitate the healthcare workers to handle diagnosis and management of the disease and the condition, to initiate the process to include endometriosis into the health management information system. We continue to encourage women and girls to seek early diagnosis and management of endometriosis. We believe early management will help the women and girls regain a good quality of life, and prevent them from losing their jobs and dropping out of school, respectively.
Our Wish
We note with great concern that the burden of endometriosis is worsened by the fact that it is not reflected in the health management information system of the Ministry of Health and there is no streamlined surveillance system in place for the condition. OUR WISH is to secure Ministry of Health recognition of endometriosis as a prevalent health condition that deserves attention, through awareness creation. However, our reach is limited due to a lack of resources to generate the awareness creation and support the women and girls with endometriosis need. We request the Wish Wall team to support our cause to achieve our dream of reaching out to more people who are suffering in silence and have no support system that can help them cope with their condition and the challenges it comes with. Your support will also help us to create awareness of endometriosis and its implications on the quality of life of women and girls as well as establish a support network for those affected. It is our humble request that the plight of women and girls will qualify to be written on the Wish Wall Foundation. This is our first wish to be expressed on this remarkable platform and we await for it to be granted. For more information, please refer to; www.endometriosiscarecentreug.org
The writer is the founder of ECCU and has been living with endometriosis for the last 13 years before receiving correct and accurate diagnosis of the disease in 2019. Prior to that, it was, “…you have bad cramps…it’s normal to have pain during your period…take pain killers…” In the real sense, her life was wasting away! That’s the basis for the passion and conviction to start up ECCU to provide the most needed services to other women and girls so that they can stand a better chance through early diagnosis and management of endometriosis.
Written by Juliet Anango; email. juliet.anango@endometriosiscarecentreug.org
Background and introduction
Most women and girls of reproductive age in Uganda are experiencing severe symptoms of endometriosis. This is attributed to the fact that; the disease is diagnosed nine to ten years later after it has progressed to stage four (severe stage). The sufferers experience severe symptoms such as severe cramps during menstruation; prolonged heavy bleeding; diarrhea; vomiting; problems in emptying their bowels and urinating; bloating- bleeding through the umbilical and in the lungs; pelvic pain and painful sexual intercourse; swelling of the belly; develop free fluid (ascities) in the abdomen; among others. Moreover, some women with endometriosis experience debilitating pain that prevents them from going to work while the school-going girls are prevented from continuing with their education/school. Consequently, many women and girls have lost their jobs and dropped out of school respectively. In addition, most women and girls have had their quality of life decreased due to severe pain; experienced fatigue; depression; anxiety; and infertility and many have lost their uteruses. The associated prolonged heavy bleeding and painful sexual intercourse renders women unable to engage in consensual marital sex, creating rifts within families. The women are often ostracized and victimised for what is beyond their control.
Current Situation Analysis
Endometriosis affects roughly 10% (190 million of reproductive age women and girls globally. Presently, there is no known cure for endometriosis and treatment is aimed at controlling symptoms and improving quality of life. In Uganda, research and awareness on endometriosis is still limited. However, from what is available, about 80 per cent of endometriosis cases are initially misdiagnosed as urinary tract or pelvic infections. This often leads to under management (diagnostics and medication) and unabated symptoms. The general public and most front-line healthcare providers are not aware that distressing and life-altering pelvic pain is not normal, leading to normalization and stigmatisation of symptoms and significant diagnostic delay. Patients who could benefit from medical symptomatic management are not always provided with treatment due to limited awareness of endometriosis among primary healthcare providers.
Solutions/Interventions made by ECCU
In 2021, after experiencing the severe symptoms and challenges presented by endometriosis and based on the recognised need, the founder, together with a Ugandan medical doctor with specialist training in Emergency Medicine and vast experience in managing endometriosis, started Endometriosis Care Centre Uganda (ECCU). ECCU is an independent, non-governmental, and not-for-profit professional organization that seeks to intervene in the physical, emotional, and psychological wellbeing of women and girls with endometriosis in Uganda.
Specifically, the centre aims to; create awareness through increased access to reliable information; generate information on endometriosis in Uganda and its complications through research, documentation and publication; provide holistic interdisciplinary medical care to those affected by endometriosis; build the capacity of victims to cope with the effects of endometriosis and provide technical support to government, NGOs and other development partners with regard to relief and therapeutic intervention for women and girls with endometriosis.
Currently, we partner with hospitals and private medical practitioners with specialist training in Obstetrics & Gynaecology where clients are referred for specialized care and management. During 2023, a total of thirty-two (32) women were referred for endometriosis management to these hospitals and the number is expected to grow during 2024. Of these Seventeen (17) women referred were confirmed to have endometriosis and needed support in management of the condition while the rest presented with severe symptoms for diagnosis. Following referral and diagnosis, case follow-ups are carried out to ensure that the clients get the appropriate support needed. In addition, ECCU offers online medical counseling and psychosocial tele-counseling services to those experiencing anxiety and depression as a result of the condition. Psycho-education is also offered to the caretakers and families of the clients on the effects of endometriosis and how they can support the patients through the healing process and coping with the disease.
A report on our achievements was presented to the Department of Reproductive Health in the Ministry of Health of the government of Uganda to help them appreciate the magnitude of the problem. The department is to incorporate a comprehensive approach that involves the victim, caretakers and family to managing endometriosis. Accordingly, this approach should cater to the physical and psychosocial needs of women and girls with endometriosis, to capacitate the healthcare workers to handle diagnosis and management of the disease and the condition, to initiate the process to include endometriosis into the health management information system. We continue to encourage women and girls to seek early diagnosis and management of endometriosis. We believe early management will help the women and girls regain a good quality of life, and prevent them from losing their jobs and dropping out of school, respectively.
Our Wish
We note with great concern that the burden of endometriosis is worsened by the fact that it is not reflected in the health management information system of the Ministry of Health and there is no streamlined surveillance system in place for the condition. OUR WISH is to secure Ministry of Health recognition of endometriosis as a prevalent health condition that deserves attention, through awareness creation. However, our reach is limited due to a lack of resources to generate the awareness creation and support the women and girls with endometriosis need. We request the Wish Wall team to support our cause to achieve our dream of reaching out to more people who are suffering in silence and have no support system that can help them cope with their condition and the challenges it comes with. Your support will also help us to create awareness of endometriosis and its implications on the quality of life of women and girls as well as establish a support network for those affected. It is our humble request that the plight of women and girls will qualify to be written on the Wish Wall Foundation. This is our first wish to be expressed on this remarkable platform and we await for it to be granted. For more information, please refer to; www.endometriosiscarecentreug.org
The writer is the founder of ECCU and has been living with endometriosis for the last 13 years before receiving correct and accurate diagnosis of the disease in 2019. Prior to that, it was, “…you have bad cramps…it’s normal to have pain during your period…take pain killers…” In the real sense, her life was wasting away! That’s the basis for the passion and conviction to start up ECCU to provide the most needed services to other women and girls so that they can stand a better chance through early diagnosis and management of endometriosis.
Written by Juliet Anango; email. juliet.anango@endometriosiscarecentreug.org
