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The missed disease: improving access to care for endometriosis

Written by Marie Sanderson

It’s an all-too familiar scenario for Dr. Jamie Kroft: meeting a patient with endometriosis who has spent years without a diagnosis and appropriate care.

“This is a very serious disease that often causes intense pain, leading to missed work, as well as a negative impact on relationships and mental health,” says Dr. Kroft, a gynaecologist who specializes in minimally invasive surgery at Sunnybrook.

Endometriosis occurs when tissue similar to the lining of the uterus grows outside of the uterus, causing pain and infertility. It’s estimated that ten per cent of patients who identify as women have the condition, with an average time to diagnosis of nine to ten years.

“Roughly 10 years to receive a diagnosis – it’s not acceptable,” says Dr. Kroft. “On top of that, many don’t understand that endometriosis can impact major organs.”

When Johana Kouadio met Dr. Kroft, she was feeling hopeless. The 35-year-old mother of two had spent 17 years with heavy painful periods, so debilitating that she regularly missed work as an early childhood educator. Doctors over the years prescribed her with pain medication and a drug that stopped her periods.

In late 2019, Johana couldn’t breathe properly and was experiencing terrible pain in her shoulder. This was happening every time she had her period. She went to a local Emergency Department, where staff ordered a chest X-ray. They found blood in her lungs. Her undiagnosed endometriosis had spread to not only her lungs, but her heart, kidneys, bowels and bladder.

She was referred to Dr. Kroft, where Johana says she cried because “I finally found someone who listened.” Dr. Kroft recalls their first meeting, and remembers the relief her patient experienced when she had clinical affirmation of the toll endometriosis had taken both physically and emotionally.

After two years of taking medication to prevent periods, Johana said she was ready to have another child. Surgery was the best option to optimize her chances of getting pregnant.

Since Johana’s disease had impacted major organs, Dr. Kroft assembled what she calls an all-female “a dream team” for a combined thoracic and gynaecology surgery in the summer of 2022. The surgery was the first of its kind in Toronto and took ten hours. Dr. Negar Ahmadi, a thoracic surgeon, operated on Johana’s lungs and pericardium, while Dr. Kroft took the lead on the gynaecology portion of the surgery.

Dr. Jamie Croft and the all-female surgical team who cared for Johana

Johana is now in a very different place. “I have zero pain and I’m happy every day,” says Johana, who hasn’t missed any work since the operation. “If you feel pain, it’s not okay. Something is going on in your body. Stop listening to others that say it’s okay.”

Dr. Kroft is now working closely with St. Michael’s Hospital and Mount Sinai Hospital to form a central intake clinic for patients with endometriosis in the Toronto area. The clinic would improve access to a first consult, so patients can receive specialist care sooner, ultimately improving quality of life and pain management.

“I don’t want another patient in front of me who has needlessly suffered for years,” she says.

About the author

Marie Sanderson

Marie Sanderson is a Senior Communications Advisor at Sunnybrook.

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