Sinai Health is redefining endometriosis care in Canada: Heather’s journey shows why it matters
Heather was 13 when she started experiencing extreme pain related to her period. She recalls how once, while she was working her part time job, she passed out because of the pain and was rushed to the hospital in an ambulance. At first, physicians thought her appendix had ruptured. But after a number of tests, they sent her home.
She was told, “It’s nothing to worry about. Some girls have more painful periods than others. This is totally normal.”
Heather spent the next two decades going in and out of doctors’ offices and hospitals with escalating symptoms – and no answers. Bleeding so heavy it soaked through her clothes. Pain so intense she had to stay home from school and, later, work. Cramps that extended into her spine and down her legs, making it difficult for her to stand.
Even after ultrasounds showed that she had large cysts in her pelvic area, everything was dismissed as normal. “Lots of women have cysts. They’ll resolve themselves,” she heard.
It wasn’t until 2017 that she would find the diagnosis she had looked for all these years – endometriosis. But her diagnosis was just the beginning.
Sinai Health is leading the way to address gaps in endometriosis diagnosis and treatment
Endometriosis is a condition that occurs when tissue similar to the lining of the uterus starts to grow elsewhere in the body – most often in and around other organs in the pelvis. This complex condition affects approximately one in 10 women of reproductive age. It can cause chronic pain, impact fertility and significantly affect a person’s mental health.
On average, women wait five years – and sometimes much longer – to receive a diagnosis. But even after being diagnosed, it can still be difficult for those living with endometriosis to access appropriate care because of historic gaps in research and funding for the condition.
That’s what physicians like Dr. Olga Bougie, a gynaecologist at Mount Sinai Hospital and Head of Research in Endometriosis and Pelvic Pain at Sinai Health, are hoping to change.
Dr. Bougie is part of a team of physicians who specialize in advanced gynaecologic surgery and complex endometriosis. Bringing together multidisciplinary expertise, they focus on early and accurate endometriosis diagnosis, surgical management of advanced disease and chronic pain treatments.
As one of the only places in Canada with specialized, interdisciplinary pelvic pain expertise, Sinai Health’s Pelvic Pain Clinic is at the forefront of advancing endometriosis care for women across the country.
“We know that navigating an endometriosis diagnosis in Canada, and around the world, can be incredibly challenging,” says Dr. Bougie. “Medical care for endometriosis can become quite complex. I’m proud that there’s a concerted effort at Sinai Health to start to move the needle and help more individuals get the interdisciplinary care that they need.”
Early diagnosis can make a huge difference in a patient’s quality of life, as specialists have more options to manage the disease before it progresses.
Finding compassionate care and expert support in a critical moment
When Heather first met Dr. Bougie, she was in a hospital in Kingston. Dr. Bougie was working there at the time and was brought in to help manage Heather’s care because of how far her condition had progressed.
For Heather, meeting Dr. Bougie was a breath of fresh air after spending so long having her symptoms ignored. “It’s not just a job to her,” says Heather. “I wasn’t just another number or another patient. When you’re with her, there’s just a sense that you're going to be okay.”
When Dr. Bougie transitioned to her role at Mount Sinai, Heather chose to stay under her care, opting to make the long drive from Kingston rather than give up the understanding and support that she had found after so long.
Heather had several surgeries to help manage her pain. But over time, her condition became even more complex. Large cysts, known as endometriomas, formed on her ovaries. These cysts had gotten so big that they caused her abdomen to expand, making her look like she was six months pregnant. The pressure and pain in her abdomen made it difficult for her to stand. It also made it difficult for her to hold her bladder or to get intimate with her partner.
After careful consideration, Heather and her health team arrived at the difficult decision that she needed to have a complete hysterectomy – removing the ovaries and uterus to reduce the risk that the cysts would continue to grow. The choice was particularly gut-wrenching because it meant that Heather had to let go of her dream of having a child.
As she lay in the room waiting for the surgery to begin, she remembers Dr. Bougie’s quiet presence offering her comfort.
“As they were hooking me up and getting me ready for the procedure, she had her hand on my forearm, just gently soothing me,” says Heather. “I’m forever grateful to her for being there at that moment. She knew that I was heartbroken to have that surgery. And she just made sure that I never felt like I had to navigate it alone.”
How is donor support improving endometriosis care?
In October 2025, the Friedrichsen Cooper Family made a $5-million gift to Sinai Health in support of endometriosis research and care – the largest donation to this area in Canadian history. Inspired by their own family’s lived experience with endometriosis and motivated by Sinai Health’s reputation for excellence, the gift will make it possible for Dr. Bougie and others on her team to address the historic gaps that exist in endometriosis care.
This funding is fuelling essential research to establish better guidelines for patient care and discover innovative solutions that can improve diagnosis and treatment options for patients like Heather. In addition to allowing Sinai Health to create a new Research Director role for the clinic, now held by Dr. Bougie, the gift helped establish the Friedrichsen Cooper Chair in Endometriosis and Complex Pelvic Pain, held by Dr. Nucelio Lemos, an advanced pelvic surgeon and neuropelveologist who brings international expertise to the clinic.
This investment is also funding fellowship training for physicians, to attain the surgical skills necessary to treat advanced stages of endometriosis. Led by Dr. Jonathon Solnik, Head of Gynaecology and Minimally Invasive Surgery at Sinai Health, this will expand capacity to treat patients and disseminate this surgical expertise across Canada. It will also leverage the power of technology to kick-start the development of a new AI-powered tool to help clinicians and patients more accurately identify pelvic pain conditions, aiming to shorten the long diagnostic journeys many patients face.
These efforts are part of Sinai Health’s broader commitment to close historic gaps that exist in women’s health research and care. Efforts that are only possible thanks to generous investments made by our community of supporters.
Navigating surgical menopause and finding a new normal
The months after the surgery were difficult. While Heather no longer experienced the pain caused by the cysts, she was going through surgical menopause – a rapid onset of menopause caused by the sudden removal of organs that influence hormones like estrogen.
Thankfully, Heather was able to access menopause care at a clinic in her community, to help her manage this new set of symptoms she was experiencing. Support she thinks is crucial for anyone who is navigating a similar situation. That’s why she wanted to share her story in support of Sinai Health’s efforts to advance investments into women’s health research and care at every stage of life. She knows for many women, this kind of support can be life-saving.
“I’m just really grateful. I think I've been fortunate in the care that I have received, and I’m encouraged to see people paying attention to a condition that affects so many people,” says Heather. “It just makes me wonder... why has it taken this long for us to get the support we need?”
You can help make sure women like Heather don’t have to suffer in silence
Endometriosis remains widely misunderstood, underdiagnosed and underfunded. But the team at Sinai Health’s Pelvic Pain Clinic is committed to helping people like Heather get the care that they deserve.
Fuelled by donor support, Sinai Health is helping advance endometriosis and pelvic pain research, strengthen clinical care, and build a more coordinated, patient-centred approach – one that integrates pain management, fertility care and research innovation. Donate today to help us get there.
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