Endometriosis is a disease so debilitating it can wreak havoc on the physical and mental well-being of women all over the world
A pain so searing the simple task of getting out of bed becomes a chore. Unable to move, you lay there, immobile, never knowing if the pain will lessen or ramp up. Hoping that if you position yourself a certain way the crushing pain will dwindle to something bearable. Alone you cry, trying to remedy the situation via a concoction of self-administered methods and prescribed medications — all to no avail. As the suffering progresses you begin to lose hope, asking yourself why doctors continue to doubt your symptoms, assuring this as normal and turning you away.
Endometriosis is a disease that affects one in 10 women and can present itself in four levels of severity. It occurs when the lining tissue of the uterus, similar to the endometrium, grows outside of the organ. The exposed tissue thickens, breaks down, and bleeds inside the body with no way of escaping, causing inflammation resulting in bouts of extreme pain and in many cases possible infertility.
Maria-José Arauz is one of the many people who deal with the disease. Before her diagnosis, Arauz dealt with symptoms related to endometriosis for five years. After visiting multiple specialists, she continued receiving the same conclusion: that her pains were related to menstruation and there was nothing that could be done. “They were good doctors, I mean they weren’t bad doctors with bad reviews, […] they’re just not prepared to treat people with endometriosis so most of them told me to take Advil.” Though she waited for nearly half a decade before getting diagnosed, Arauz says it usually takes some women even longer to receive a definitive diagnosis.
Dr. Sarah Maheux-Lacroix is a gynecologist who specializes in research and clinical care for endometriosis at the CHU de Québec Laval University research centre. Maheux-Lacroix believes that medical negligence that women like Arauz face derives from the complexity in identifying endometriosis in the body to provide a proper diagnosis. “The gold standard to diagnose endometriosis is surgery. The fact that it requires surgery is one of the factors that can contribute to a delay in diagnosis.” Maheux-Lacroix says the only way to avoid misdiagnosis is to spread awareness on both a medical and societal level. “There are some doctors that are good in women’s health and others that are not, so I think we need to talk about it more.”
“For me to get all of that was a really hard process because I had to fight and advocate for myself, I had to show that my life wasn’t normal and that all the pain I was having and the anxiety I was living due to this wasn’t normal,” Arauz said.
“I wasn’t functioning like a normal person.”
Endometriosis affects women living with the disease at different levels. It can vary in four stages of severity that define the extensions of lesions in the pelvis. Some may be at a stage four and asymptomatic, while others can be at stage one and experience high sieges of pain imminently impacting their quality of life.
Women experience pain caused by endometriosis usually when they’re about to begin their menstrual cycle. The pain forced Arauz to plan around her disease instead of freely living her life. “There are days I can’t cook or can’t eat. I cannot work, I have to cancel all my plans. It’s like I have to plan everything according to the day I have my period,” Arauz said.
“I’m on the floor crying in pain and at the same time I’m vomiting from the pain as well.”
The disease can be very extensive in the abdomen and pelvic regions creating a slew of many other complications. “It can affect fertility, it can also lead to chronic pelvic pain, and can create cyst ruptures that can cause acute pain that would require emergency surgery,” Maheux-Lacroix said.
Other complications that Maheux-Lacroix noted include torsion of an ovarian cyst, and possible infections that can lead to detrimental health problems. “Endo can invade some structures such as the rectum and urinary tract system and could affect the function of the kidneys and bowels.” According to her research, there are likely different types of endometrioses that affect women differently.
Being diagnosed with breast cancer a few months after her endometriosis diagnosis in 2019, Arauz noticed a difference in care when comparing her cancer treatment to her experiences with endometriosis. “I got my treatments on time, I had a really good follow up, but I can’t say the same thing for endometriosis. Endo doesn’t kill you like cancer does, but it can kill your quality of life,” Arauz said.
“I actually find that the pain that I went through with endometriosis was worse for me than breast cancer treatment.”
More Funding for Research Is Needed
According to EndoAct Canada, the disease costs the country $1.8 billion per year. Though much more research is needed, Maheux-Lacroix believes that funding only happens when diseases are a societal concern. “As a society we decide that we want to focus on cancer or we want to fund diabetes so it’s the lack of discussion and because it’s taboo there’s that lack of discussion.” However, she’s hopeful that desensitizing the disease will eventually further funding and development for proper solutions. “It’s political and there are plenty of priorities and unfortunately endo is definitely not one but I think people are ready to hear about the disease and put more money to properly study it. It deserves to be studied a lot more.”
On Jan. 28, EndoAct Canada started the #ActOnEndo campaign to raise awareness for endometriosis. Their goal is to contact all MPs in the house of commons to advocate for the federal government to develop an action plan for people living with the disease. Since the campaign started, executive director of EndoAct Canada Kate Wahl says that the campaign is off to a strong start and they would love to contact all 338 MPs to spread the message. “We have a tracking sheet of MPs that have been contacted by advocates in the community. The last time I looked at it we’re sitting around 70 MPs in the first week,” Wahl said. “It really just speaks to the importance of this to people living with endo to see action and leadership from our elected officials on the issue.”
More research and awareness is needed to spread the message so that more women can be efficiently and effectively treated, to avoid years of suffering and receive the proper treatment they so desperately need.
Visuals by Miao De Kat @miao_dekat