Endometriosis is one of the most common ailments affecting women, but it is not a topic that is readily discussed in public.
The newly formed Barbados Association of Endometriosis and PCOS (Polycystic Ovary Syndrome) is seeking to raise awareness of the condition and provide support for the women who suffer from it.
Endometriosis is a chronic condition where tissue that resembles the lining of the uterus is found outside the uterus. It can be found in several areas of the body, including the fallopian tubes and ovaries, the lining of the inside of the abdomen, as well as the bowel or bladder.
Some common symptoms include heavy or painful periods, pain in the lower abdomen, pelvis or lower back, bleeding between periods, infertility or difficulty getting pregnant, and pain during and after sex. Some women also experience pain in the leg and in the area between the hips.
Doctors are not clear of the exact causes of endometriosis; however one of the theories is that the lining of the uterus does not leave the body entirely during the monthly period, but rather flows backwards through the fallopian tubes and into the abdomen. The tissue then embeds itself on the organs of the pelvis and grows. It is also believed that endometriosis is a hereditary condition.
Founder of the Barbados Association of Endometriosis and PCOS Julia Mandeville decided to set up a support system for women, after she was diagnosed in 2014.
“When I did my research and recognized that one in ten women had endometriosis, I recognized that’s a very high prevalence, and even though we have no idea of the frequency or the prevalence in Barbados, who is to rule out that we have a one in ten prevalence here?” Mandeville said.
“We just want to advocate for ladies that have those conditions, let them know there’s an organization there to help them, to support them in whatever feasible way we can . . . and to educate,” she added.
She told Barbados TODAY that an often overlooked aspect of the illness is the impact on productivity.
“If every month you are going through this situation where you have severe debilitating pain and you cannot get up to go through your regular routine, you could see where you can get the productivity loss,” Mandeville pointed out.
“You still also have to factor in actually diagnosing the condition. In Barbados, diagnosis is done invasively where you have one of two surgeries, I believe. You can have a laparotomy or a laparoscopy. I think the laparoscopy is usually the one that is done here, where you can have keyhole incisions within your pelvic region and you have an endoscope inserted so that the attendant can see whether or not the cells are present outside of the uterus. The laparotomy is basically when you just have the straight cut and you open up the pelvic region and you view from there,” she explained.
Once endometriosis is diagnosed, there is a range of treatment options available, ranging from hormone treatment to dietary changes.
Mandeville pointed out that many women who are diagnosed with that condition also suffer from chronic fatigue syndrome.
“You’re not lazy, your body is basically really fighting against itself and you get very, very, very tired. And it’s the type of tired that no matter how much sleep you get at that point in time, it really doesn’t address it. You go to sleep tired, you get eight hours sleep and you still wake up very tired. That’s actually something I struggle with a lot of the time,” she said.
According to Mandeville, while there is no cure for endometriosis, the association is looking to provide whatever moral support it can for the affected women, “because a lot of the time all you really do need is some understanding”.