After years of severe pain and facing a wait of up to 21 months for surgery, a Montreal woman travelled to Romania to undergo treatment for endometriosis, paying about $20,000 out of pocket in hopes of finding relief.
Larisa Elena Petrec said her pain became unbearable earlier this year, when she experienced a sharp pain in her right ovary that left her unable to walk, laugh, talk or work.
“I’m in bed crying and dying every single day,” Petrec said. “So I made the choice to just look abroad and compare the prices, the doctors, their history, their experience, and criteria. And I just left.”
Doctors later discovered an endometrioma, a cyst associated with endometriosis, about the size of a grapefruit. Petrec said she was told she could face a wait of up to 21 months to have it removed.
She considered treatment options in Mexico and Turkey before ultimately choosing Romania. The medical costs were about $12,000, she said, with airfare, accommodation and food bringing the total to approximately $20,000.
Endometriosis is a chronic condition in which tissue similar to the lining of the uterus grows outside the uterus. It can cause severe pain and other symptoms, and diagnosis and treatment can be difficult to access.
Dr. Christopher Labos said several factors contribute to delays in diagnosing and treating the condition, including nonspecific symptoms, limited access to family doctors and the absence of a single definitive diagnostic test.
“We have not historically been very good at treating pain, especially women’s pain,” Labos said.
He added that delays can occur at every stage of the process, from accessing diagnostic imaging to booking surgery.
“The symptoms are nonspecific and can be easily confused with other problems,” Labos said. “There’s no single definitive test for endometriosis, so it’s not an easy thing to diagnose under the best of times.”
Katie Luciani, who advocates for people living with endometriosis, said the average delay to diagnosis is about 5.4 years, with some patients waiting decades for answers.
“We speak to people where it’s like 20 years, 30 years,” Luciani said.
An estimated two million people in Canada live with endometriosis, according to figures cited in the report. Luciani is calling for a national action plan similar to initiatives adopted in countries including France, Australia and Denmark.
“We need decision-makers and policymakers to come together and meet with folks that are living with endometriosis or suspected endo,” Luciani said. “Meet with the surgeons, the clinical piece, all sort of aspects of an endometriosis journey and really just listen and learn about these barriers to care.”
Petrec said her pain was often dismissed or normalized by health-care providers. She now shares her experience and information about endometriosis on social media to help others feel heard and validated.
“Just trust yourself, trust your gut, and do what’s good for you,” Petrec said.
Labos cautioned that seeking surgery abroad can carry risks, depending on the country and the standards of care available.
“You don’t have the same guarantees of quality of care,” he said. “Say what you will about our health-care system. At least here, we have fairly rigid standards.”
Although complications can occur anywhere, Labos said Canada has a strong health-care system once patients are able to access it.
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