Bajan highlights Endometriosis on global stage

Julia Mandeville is the Co-Founder of the Barbados Association of Endometriosis and PCOS. Recently, Mandeville had the pleasure of being featured on the Today’s Show in the United States of America where she discussed some of the challenges that women of colour have with endometriosis. Endometriosis is a condition where cells similar to those found in the lining of the uterus are found elsewhere in the body, typically causing severe pain and it is also associated with infertility. It affects approximately 200 million women and girls of reproductive age worldwide.

Speaking to Barbados TODAY Mandeville said that as a PhD student at George Mason University her research team, led by Dr. Jhumka Gupta, partnered with Endo Black Inc, to conduct research on the disparities in the types of access to health care Black women with endometriosis face.

“It was to highlight the work that Endo Black is doing in the United States of America.

“As a PhD student, I reached out to Endo Black to see if we can partner on a research project to research the disparities in the types of access to health care Black women with endometriosis experience specifically in the US.

“While the research focused on the US, we realised that there is also an opportunity for us in the region to learn more about endometriosis and women of colour as we currently do not have a designated centre of research for endometriosis,” she said. She added that because of this the research that is available does not cater to the specific experiences that Black women with endometriosis have especially in the Caribbean.

“The majority of the data that focuses on endometriosis would come from predominantly non-Hispanic white regions such as the USA and the UK. Thus a lot of the information is not representative of how endometriosis impacts other racial/ethnic groups. Because of the advocacy Endo Black Inc is doing in America we have a community of Black women with endometriosis and who are advocating and seeking to advance health equity within this space and that is what the research is going to be based on,” she said.

Mandeville, who is a former student of Harrison College and The University of the West Indies, Cave Hill Campus, said that while living in Barbados she was diagnosed with endometriosis after she had two ruptured ovarian cysts.

“I have always had debilitating periods since I started menstruation, and nothing would help with the pain. The first two to three days were always awful, and I could never function properly at school. In 2014 I was diagnosed with endometriosis after presenting to doctors with two ruptured ovarian cysts.

Back in 2014 I had never heard of endometriosis, and I believed painful periods were normal. I tried different pain killers and birth control pills to aid in my pain management and nothing helped, in fact they sometimes made the pain worse. After having the ruptured cysts, I was told I may have endometriosis and would need to have a laparoscopic surgery to confirm. I had the surgery in 2014, two months after that consultation,” she said.

Mandeville with fellow Co-Founder Dawn Williams and other founding members, decided to launch a book which was created as a means to educate, destigmatize, lend credibility and support to the many members of the Barbadian population affected by disorders like endometriosis. The book is called “Invisible, Not Imaginary – A collection of Stories about Strength and Resilience for Caribbean Girls”

“The book Invisible Not Imaginary is still being well received as we use it as a teaching tool so that persons are sensitised about this painful condition that one in ten women in the world face. The BAEP team also continues to do outreach with community and religious organisations virtually as well as on our social media platforms @endoandpcosbb,” she said.

This year the theme for Endometriosis month is Working Together For A Better Outcome. Mandeville said that this theme came about organically from conversations with their membership.

“We were discussing what is it we really need in the short and long term. As we know, there is no cure for endometriosis, and we may be a way off from that discovery. However, what we do know is that persons have had improved outcomes with good social support and quality medical care and intervention.

“So, in the short term, we want to cultivate a space for that to be a reality in Barbados. Additionally, we also need to look at what can be done for sustainable improvements in outcomes for those who have endo and will potentially be diagnosed with endo in the future. In that space, we need to have conversations about relevant and applicable policies and interventions that are developed for those in Barbados,” she said.

As Endometriosis month ends on March 31st 2022, Mandeville and the Barbados Association of Endometriosis
and PCOS want to encourage persons in Barbados, the region, and the world that endometriosis is more than a reproductive health issue.

“While this condition is associated with painful periods and infertility – both of which are important issues that should be address more widely in society, in addition to this endometriosis has been found on and in several major organs of the body and can have many far-reaching physical implications.

Everyone’s experiences with endo will differ but the mental health toll is also something that needs to be recognised. Stigma and taboo associated with chronic pain, infertility, and menstruation, make it that much harder for persons to speak out about their concerns and lead to a poorer quality of life. As endometriosis is chronic, the journey is lifelong.

Having a good support system as well as access to the care you need to treat and manage your endometriosis, makes a significant difference in how we can improve outcomes for those who have it,” she said. (Write Right PR Services)