“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.

The post The missed disease: improving access to care for endometriosis appeared first on Your Health Matters.

It was an event that captured the collective attention of 900 of the world’s leading gynecologists. On May 16, 2019, three surgeries performed at Sunnybrook were videocast live to a medical conference in Montreal – a Canadian first.  

Over three hours, this international audience at the annual meeting of the Society of Endometriosis and Uterine Disorders (SEUD) witnessed Sunnybrook’s leading approaches to operative hysteroscopy, laser treatment of endometriosis and hysterectomy. A team of surgeons wore microphones and headphones, allowing conference moderators to direct audience questions in real time to doctors in the three operating rooms.

“We were able to answer questions on our techniques and ways to reduce patient complications,” says Sunnybrook surgeon Dr. Grace Liu, part of the SEUD organizing committee. “Thanks to positive audience feedback, this could set a new precedent for future videocasts from other hospitals.”

More than 50 Sunnybrook staff from various departments worked together for almost a year to make the videocast happen.

“It was a team effort within Sunnybrook and with the event producers, to organize the technical and logistical aspects for this broadcast,” says Doug Nicholson, assistant manager in digital and visual communications at Sunnybrook. “Events like this help share the advances happening here.”

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