Dartmouth resident Chelsey Karbowski has known since her preteen years that the pain she experienced each month wasn’t normal.
She describes it as a sharp, stabbing pain that feels like “someone is trying to claw your insides out of your body.” Intense and often unpredictable, it would make her sick to her stomach, leave her unable to walk, and on some occasions, cause her to black out entirely.
“If you don’t have someone there with you, it’s really scary,” she told Global News. “I had episodes of passing out even in high school because the pain was so bad.”
Despite the severity of her symptoms, Karbowski wasn’t diagnosed with endometriosis until her mid-twenties. It wasn’t until last year, she added, that a doctor took her seriously enough to recommend a surgical treatment.
Endometriosis is a medical condition in which cells that are similar to the lining of the uterus grow outside the uterus, most often on the ovaries, fallopian tubes and surrounding tissues. It affects more than 500,000 Canadians and causes infertility in some cases, while the associated chronic pelvic pain can lead to many other complications.
According to a 2020 study published in the Journal of Obstetrics and Gynaecology Canada, however, the average patient is around 28 years old when they’re diagnosed, and they often experience a diagnosis delay of more than five years.
Karbowski said many of the doctors she approached dismissed her pain or recommended paths to reduce menstruation-related pain that didn’t make sense to her, like having children or a chemically-induced menopause in her twenties.
“‘Just lose weight and that will help alleviate some of the pain … It’s just what women have to go through, it can’t be that bad,’ is what a lot of male doctors would say,” she explained. “I find it even worse when it comes from female doctors.”
Last week, the IWK Health Centre confirmed it will soon house a new clinic whose goal is to improve the health-care experience of endometriosis patients by streamlining services they typically access.
Billed as the “first dedicated multidisciplinary endometriosis and chronic pelvic pain” clinic in Atlantic Canada, it will offer gynecology, anesthesiology and physiotherapy all in one place and — if all goes well during recruitment — counselling and other specialized services.
“I certainly know there’s a demand for this type of care,” said Dr. Elizabeth Randle, an obstetrician and gynecologist at the IWK Health Centre who will work in the new clinic when it opens this summer.
“Trying to get my patients that I currently see in to access these services through a more piecemeal, siloed strategy that we’re currently providing — it is challenging.”
While endometriosis is difficult to diagnose, Dr. Randle said more education is needed in medical schools, among doctors, and in the public to ensure fewer cases go undiagnosed and fewer patients are left in pain well into adulthood.
In the Halifax area alone, more than 800 patients were referred to the IWK’s gynecology clinic for pelvic pain within a year, she said, and more than 500 visits were made to the emergency room.
“(This clinic) will give them a more comprehensive approach to try and manage their chronic pelvic pain from all aspects of how it’s affecting their quality of life … and give them tools so they can continue to manage chronic disease process once they’ve been discharged from the clinic as well,” Dr. Randle explained.
According to the IWK, chronic pelvic pain is responsible for an estimated $1.8 billion in annual heath care costs in Canada, due to physician and emergency department visits, medications, surgeries, and hospital admissions.
Karbowski said she thinks the clinic will be a “phenomenal” addition to the region, as many sufferers of endometriosis aren’t able to access local care. She also said its specialized nature means patients are less likely to have their pain dismissed so “they don’t have to spend their lives fighting” for treatment.
Brenna Shannon, who also has endometriosis, agreed the clinic is “severely needed.” In 2016, she co-founded a Facebook group called ‘Undo Endo’ to connect with other patients, share their experiences and swap tips for navigating the diagnosis.
It now has more than 380 members, many of whom report similar experiences of “falling through the gaps” in the system, said Shannon.
“People who have lost referrals, people who wait a year to see a gynecologist to hear pretty much nothing — a suggestion they go the birth control pill perhaps,” she explained. “Usually if you’ve waited a year to see someone, you’ve tried the birth control pill.”
Endometriosis patients encounter a host of obstacles in their search for treatment, said Shannon, including finding knowledgeable doctors who believe them, and accessing clinics with the expertise to perform the surgeries most often used to keep endometriosis at bay.
“Establishing the clinic ensures that we’re not going to have to go back, it’s a permanent step and we can move forward from there,” she told Global News, adding that there’s still much work to do to close “the gap” in services.
The multidisciplinary approach of the IWK’s upcoming clinic is vital, she added, because not every patient finds the same treatment effective. She said she hopes having the word ‘endometriosis’ in the clinic’s title may also encourage more general practitioners to refer patients who have symptoms, and that eventually, the clinic has a full compliment of knowledge doctors who can help.
Editor’s Note: This story was updated at 7:45 p.m. AST to correct a misspelled name.