Tami Ellis and Leah Haynes, co-founders of Endometriosis Events (Courtesy: Dev Banfield)
Dozens of advocates gathered in Queen’s Park for the Unite for Endometriosis: Political Action Rally over the weekend, organized by Endometriosis Events.
Endometriosis is a chronic pain disease that impacts about one million people in Canada, as per The Society of Obstetricians and Gynaecologists of Canada. The condition can involve multiple organs throughout the body and is characterized by symptoms like severe chronic, irregular vaginal bleeding, and infertility.
There is also often a delay in diagnosing endometriosis, with those suffering with the condition often waiting more than five years for doctors to determine the cause of their symptoms. There is currently no cure for the disease, and the symptoms are managed by a host of medical interventions, including different medications and surgeries. However, due to factors like a lack of specialists and long waitlists, many people living with this condition experience periods of time without medical assistance.
Demonstrators carried signs with messages like “Endometriosis is a social justice issue” and “No one should have to go into debt getting medical care in another country,” highlighting the reality for many people living with endometriosis.
Saturday’s rally focused on raising awareness of endometriosis, and a petition that will be presented to the provincial government calling for better endometriosis care, funding, and education in Ontario. That petition has garnered thousands of signatures and will be tabled by Dr. Jill Andrew, PhD, MPP for Toronto-St. Paul’s. Andrew was also one of the rally speakers.
“We’re not doing this because we want to mooch on the system, we’re doing it because we need help, we need to be believed,” Andrew said, adding that those living with chronic pain never get used to it, rather, they learn to live with it.
READ MORE: ‘It feels like a slow and painful death,’ A glimpse into living with endometriosis
“We created a petition with MPP Dr. Jill Andrew, and we had a lot of asks on that petition, to raise more awareness, more funds, more education for endo warriors,” Tami Ellis, co-founder of Endometriosis Events, told Now Toronto.
Ellis lives with endometriosis and was diagnosed in 2017.
“[I] had three surgeries. It affects people mentally and physically, and more work needs to be done. There needs to be a cure and there need to be more doctors aware of this as well,” Ellis continued.
“Right now, unfortunately, endometriosis is not talked about as much as it needs to be, just like other menstrual health conditions,” Leah Haynes, co-founder of Endometriosis Events, said.
“It’s impacted my life both physically and mentally. It definitely has cost me time with friends and family,” Haynes explained, adding that she has to plan different life events and special occasions around her menstrual cycle.
“Of course, it affects my work and ability to do different things and be a productive member of society. So, I think this is important work that needs to be done and a conversation that needs to happen as well.”
She also shared something she wishes more people knew about the disease.
“Our pain is real when we say it is.”
“Endometriosis took away everything that I wished I could be as a child, all of my hopes and dreams,” a rally attendee named Penny shared, adding that they are scheduled to have a hysterectomy in the coming weeks to manage their symptoms.
“I have been in the hospital every single month, every single period,” they continued, adding that they’ve been fighting to have their pain recognized and heard for years.
