A Victoria woman is travelling to Kelowna this week, where she hopes at long last she may be diagnosed for the condition that has, at times, immobilized her with “excruciating pain.”
For more than a decade, 23-year-old Zoey Swadden has dealt with what she believes is endometriosis. She has seen more than two dozen doctors in less than a year without a diagnosis, she said.
“I experience a lot of shooting pains up to about my diaphragm. I get umbilical pains as well. It’s demobilizing,” she explained.
“I want to work, I want to be in school right now but I can’t — I would just be setting myself up for failure.”
Swadden is among the estimated one million British Columbians without a family doctor. Years of visits to clinics and emergency departments have not produced the referrals she needs for an MRI or surgical pelvic exam, she told Global News ahead of her journey.
Endometriosis is a medical condition in which cells that are similar to the lining of the uterus grow outside the uterus. It most often appears on the ovaries, fallopian tubes and surrounding tissues, but can appear anywhere in the body.
It affects more than half a million Canadians and causes infertility in some cases, while the associated chronic pelvic pain can lead to other complications.
Swadden said she has a gynecologist, whom she has not been able to reach in more than a month, and visits to the hospital have produced little more than a handful of blood tests and advice to return home and take Advil. Last week, she said she visited the hospital in so much pain she was “unable to walk,” but was told to leave because another patient needed her bed.
“It’s never taken seriously enough,” she said. “It’s been really hard to take all these experiences and just keep trying to tell myself, ‘Just keep going, just keep going.’
“It’s at the point where I really want to just stop and give up, but I know I can’t do that if I want this to be gone, if I want to get better.”
Swadden is not alone. According to a 2020 study published in the Journal of Obstetrics and Gynaecology Canada the average patient is around 28 years old when they’re diagnosed, and they often experience a diagnosis delay of more than five years.
She said she’s travelling to Kelowna in the hopes its hospitals will produce better results than those she has visited on Vancouver Island. If Kelowna fails, she said she will visit Trail, followed by Alberta, where physicians in Calgary and Edmonton have reportedly agreed to take her on as a patient.
“I know I shouldn’t have to leave the province, but if that’s where I’m going to get the help, that’s where I’m going to get the help.”
Her last resort, she added, is a trip to Seattle to see a doctor who specializes in endometriosis. While she doesn’t have much money, she added, she’s willing to take out a loan for the travel and removal procedure, which she estimates will cost about $30,000.
In an interview, Health Minister Adrian Dix said the ministry will “look at assisting the person in this case,” noting that the need for a referral is a “practical problem” that can be addressed.
“I think it’s important to do that,” he said. “In a broad sense, I think it’s important to do what we’re doing, which is increase the capacity of the system to support people.”
The province is working to resolve overhead cost and the fee-for-service issues with existing family doctors, he added, and attract new domestic and international physicians. Since he became minister, he said 38,000 new staff have joined B.C.’s health care system, including 600 new doctors.
“Frequently for a variety of reasons, they’re not choosing the full-service family practice option,” he acknowledged. “I absolutely agree we need to do more.”
British Columbia is dealing with health-care challenges that stem from the previous BC Liberal government, along with “large numbers” of new residents in need of a doctor, he said. The minister also cited recent improvements, including record numbers of new registered nurses, and “more primary care appointments, more emergency room visits, more surgeries, and more diagnostic care than ever before.”
Meanwhile, Swadden said her pain has increased dramatically since November. For the past seven months, she said the condition has impacted her mental health, as she loses “hope” in the medical system and the possibility of feeling better.
“There have been many days in the last month-and-a-half that I’ve felt like my body is shutting down and it’s scaring me,” she said. “It’s not just scaring me, it’s scaring my partner and a few family members.”
It’s been difficult on her partner, she added, who has taken time off work to care for her. The couple has now packed for a month-long trip to find a diagnosis.