Endometriosis Patients in Nova Scotia Push for Better Care Options

Women in Antigonish, Nova Scotia, are advocating for improved medical options for endometriosis, a chronic condition that affects approximately one in ten reproductive-age individuals. The local support group, which meets at the Peoples’ Place library, serves as a vital platform for sharing experiences and coping strategies. Member Vanessa Zwicker emphasizes the importance of feeling “valued, heard, and seen” in a society where discussions about endometriosis are often limited.

Many women in the group have faced significant challenges in accessing timely and effective treatment. Cairista MacIsaac, a patient and women’s health advocate, highlights the frustration of waiting three to three and a half years to see a gynecologist, with additional lengthy delays for surgery. “This is just something to supplement until there’s actually effective changes,” she states, reinforcing the need for systemic improvements in healthcare access.

Understanding Endometriosis

Endometriosis is characterized by lesions similar to uterine lining tissue that grow outside the uterus, resulting in debilitating pain, heavy menstrual bleeding, and potential fertility issues. Dr. Craig Morton, an obstetrician-gynecologist based in Saint John, N.B., explains that the condition is often misdiagnosed, leading to years of suffering for many patients. MacIsaac, who has lived with endometriosis since age 13, recalls being dismissed by doctors, receiving only birth control as a solution.

She reflects on the normalization of pain and heavy bleeding, stating, “Why do we keep normalizing pain? These are things that are impacting young women’s lives.”

While endometriosis is typically viewed as a women’s health issue, research from the U.S. National Library of Medicine has shown that it can also occur in men. The lesions can spread to various organs, leading to severe complications. MacIsaac notes that the disease is not merely a reproductive disorder but rather “a whole-body disease” that can manifest in different ways, including rare cases where it affects the brain and eyes.

Surgical Treatment Options

In Nova Scotia, treatment options primarily include two surgical techniques: ablation and excision. Excision surgery is considered the gold standard, as it removes the lesions entirely rather than just treating the surface. Dr. Morton explains that excision results in less inflammation and a lower likelihood of recurrence, advocating for minimally invasive approaches that restore patients’ anatomy.

MacIsaac shares her personal experience with surgery, having to travel to the IWK Health Centre in Halifax for ablation, which did not alleviate her pain. Ultimately, she raised funds to undergo excision surgery in New York, costing her C$28,000 in total, including travel and accommodation expenses. “I’m very fortunate that I was able to have this surgery, but my story isn’t a success story that I navigated the system successfully,” she states.

Access to Surgery and Resources

According to the Nova Scotia Department of Health and Wellness, endometriosis care is managed by about 45 general gynecologists across the province. Patients with complex cases are typically referred to specialized centres like IWK Health, where minimally invasive procedures are performed. However, MacIsaac notes that expertise for treating lesions outside the pelvic region is limited, creating barriers for patients seeking comprehensive care.

Dr. Morton acknowledges that access to excision surgery is low not only in Nova Scotia but also in neighboring provinces. He emphasizes the challenges of managing surgeries that require collaboration among multiple surgical disciplines, which can complicate scheduling and operating room availability.

The health department states that referrals for out-of-province surgeries can only occur after exhausting all other treatment options and require approval from a medical consultant. While endometriosis treatments are available within the province, MacIsaac argues that this often does not meet the needs of patients with complex cases.

As patients like Zwicker continue to manage their conditions, the hope remains that future advancements will lead to better accessibility to necessary surgical options. With her condition being monitored, she expresses a desire for more accessible treatment in Canada as she may eventually require surgery for her diaphragmatic endometriosis. “I’m hoping that by the time I have to get excision surgery, there will be options available,” she says.

The collective efforts of these women, along with medical professionals, highlight the urgent need for systemic changes in endometriosis care. Through advocacy, support, and shared experiences, they strive to ensure that future patients will receive the comprehensive care they deserve.