Against all odds: A journey of persistence through chronic pain

At nearly 50 years old, Niki Grace understood her body well enough to know something wasn’t right. Having spent the last eight years grappling with the excruciating effects of endometriosis, the Australian expat and rehabilitation personal trainer knew pain, but in March 2021, her condition became unbearable. “I had nerve pain running all down my legs,” she says. “It was like someone was trying to rip my pubic bone out.”

She was at her wit’s end by the time she met Dr. Yoav Brill, a highly regarded obstetrician/gynecologist (OB/GYN) specializing in complex endometriosis at Oak Valley Health’s Markham Stouffville Hospital (MSH). She begged him to perform laparoscopic surgery to remove her ovaries. “I was just bawling my eyes out,” Grace recounts. “I said to him, ‘I have no quality of life right now.’”

Endometriosis is a chronic inflammatory disease of the female reproductive system. It’s driven by the hormonal cycle, with no cure. Tissue similar to the lining of the uterus, known as the endometrium, grows in other parts of the body. The condition is characterized by debilitating pain in the pelvic region; however, that tissue can attach or burrow into virtually any organ, creating scar tissue that could impede the organ’s ability to function. 

A recent study estimates that one million Canadians are affected.

A misunderstood disease

Despite its prevalence, many family practitioners, nurses and even gynecologists have a limited grasp of this condition and how it can manifest. On average, it takes more than five years for those affected by endometriosis to get a diagnosis, which inevitably delays treatment. Those years may be filled with terrible pain. Even after diagnosis, finding an effective treatment can be a haphazard guessing game to find what works.

“The complicating factor is that it’s considered a gynecologic disease,” explains Dr. Brill, one of the few OB/ GYNs working at a community hospital with access to innovative technologies for surgeries. “As a gynecologist, I’m trained to deal with the uterus, the fallopian tubes and the ovaries. Once it’s in the bladder or the ureter, or the nerves or the bowel, it’s kind of outside my normal experience in surgery. But surgeons in other specialties have little training or experience with endometriosis.”

On top of that, because this condition primarily affects reproductive-aged women, anyone outside that definition—whether they’re too young, too old, trans or nonbinary—is usually ignored or their symptoms are discounted or minimized.

Taking pain seriously

That’s the scenario Grace found herself in when the symptoms first manifested in her early 40s. She tried treatment after treatment—laparoscopic surgery to remove tissue, hormone replacement, medically induced menopause and a total hysterectomy—with little success. Her last gynecologist didn’t believe her when she described the extent of her pain, even after two surgeries.

“I was told I must be faking this, it must be me, I must be just too sensitive to pain,” Grace says of those traumatic appointments. When the pain continued to worsen, she implored her family doctor to refer her to another gynecologist. That’s when she first saw Dr. Brill.

“It’s the classic endometriosis story,” he says, referring to the cycle of a patient in pain, failed medical treatments, more conservative surgeries, second opinions, different approaches to treatment and, eventually, more advanced surgeries.

Too old to matter

By 47, Grace’s age was a complicating factor as she was naturally experiencing perimenopausal symptoms in addition to her endometriosis. Several years of alternative treatments and pain management went by until things took a turn for the worse and the pain became unbearable.

Dr. Brill consulted with his peers; it turned out that the endometriosis had invaded her sacral plexus, the bundle of nerves found at the back of the pelvis that controls the lower body. The surgery to dissect the tissue wrapped around those nerves was complicated, and Grace opted out because of the very real risk of paralysis or death. She was back to square one.

“Endometriosis is already an orphan disease in reproductive-aged people, where many gynecologists don’t get the surgical training to deal with difficult cases,” notes Dr. Brill. “But you now have Niki, who is perimenopausal—she’s an orphan among orphans.”

Pain-free at last

That was when she found herself back in Dr. Brill’s office, asking him to perform laparoscopic surgery to remove her ovaries and see whether any endometriosis remained from previous surgeries. The operation was scheduled for December 2021.

What he found was far more extensive endometriosis than anyone could have anticipated. The tissue was everywhere—all over her pelvic wall, attached to her bladder, wrapped around her ureter, and burrowed into the vaginal stump that remained after her hysterectomy. Most notably, it had created so much scar tissue around her ovaries that they weren’t visible.

The operation required hours of fine dissection of tissue from Grace’s organs, none of which would have been possible without the hospital’s CO2 laser, funded with the generous support of the community through the Markham Stouffville Hospital Foundation. The laser is the device of choice for many gynecologists that specialize in endometriosis because of the precision—fractions of a millimetre—that makes it possible to dissect tissue from a patient’s organs. Its presence, however, and the high-level expertise it requires, are rare in community hospitals.

“It’s very important that community hospitals are able to diagnose and manage cases of endometriosis,” notes Dr. Brill, because for most people, it’s untenable to travel into downtown Toronto for multiple appointments and surgeries. He credits Oak Valley Health for identifying a need to treat this disease in the community and MSH Foundation for raising the money to purchase the equipment to do so.

Continued progress

Last year , MSH surgeons performed nearly 22,000 surgeries. Ongoing updates to surgical equipment and technology are imperative to keep up with the need. As well, keeping pace with medical advances and community support is vital.

Grace’s surgery was a success, giving her a pain-free existence for the first time in eight years. However, she knows it might return. “The best thing I’ve ever heard anyone say to me is when Dr. Brill said, ‘If you start to feel pain again, it is not in your head.’ That meant the world.”

That validation is needed in an area of medicine where pain is often normalized. “This is not something that just affects people in their 20s and 30s; people in their 50s can also suffer,” adds Dr. Brill. “And we need to keep our minds open and treat these people with the respect they deserve, and try to get them the treatment they need.”

For more information, visit mshf.on.ca.