What does it feel like to have something happening to your body that you just don’t understand?
“Headaches, migraines, sleepless nights, bloating, fatigue, gas,” Denise Campbell says of the early symptoms that gave her a clue that something was wrong. “This was before I even had my first menstrual cycle. I was missing school and went to several doctors’ appointments, but no one had answers.”
The Toronto woman went through years of pain and uncertainty before a diagnosis of endometriosis, a complex disease that is often overlooked and misunderstood.
What is endometriosis?
Endometriosis is a condition that affects about one in every 10 girls and women (and unmeasured numbers of trans and non-binary people), where tissue that’s similar to the endometrial tissue that lines the uterus, grows in other locations inside the body, like the ovaries, fallopian tubes, bladder or bowels. . During menstruation, the tissue bleeds just like the regular lining of the uterus, except it has no way to exit the body, so it pools inside the tissue and leads to pain, inflammation and scarring. The result is often chronic pelvic pain, nausea, excessive menstrual pain and infertility.
Symptoms, though, also mimic other disorders like ovarian cysts, pelvic inflammatory disease and irritable bowel syndrome (IBS) which causes bouts of diarrhea, constipation and abdominal cramping. IBS can accompany endometriosis, further complicating the diagnosis, according to the Mayo Clinic.
Campbell was just 14 when her symptoms started. She also experienced severe, sharp pain around her belly button that sent her to hospital for emergency surgery to remove her appendix.
“I thought my appendicitis would be the connection to what I was going through, but that was just part of it,” she says. Symptoms would come and go, until things got worse at the age of 35, when she started having shortness of breath and bleeding from her belly button.
A regular physical exam at her doctor’s office led to an x-ray that showed a collapsed lung, a large mass in her belly button, and what turned out to be a tumour in her lung that finally confirmed endometriosis following a biopsy.
“It’s debilitating,” says Campbell, now 42 and still struggling with symptoms including fatigue, brain fog, nerve and hip pain after several surgeries. She’s on extended sick leave from her job as a case worker with the Ontario Disability Support Program. (Estimates suggest endometriosis costs the Canadian economy at least $1.8 billion each year because it impacts the productivity of reproductive age women.)
“Almost every hour of every day is different for me. I get up in the morning and sometimes I feel okay, but by 11 p.m. or 12 p.m., I’m exhausted,” says Campbell. “I feel like I ran a marathon and all I did was maybe brush my teeth and shower. And I’m thinking, ‘How do I pace myself? What can I do?’”
Campbell’s treatment plan includes vitamins and supplements, as well as physiotherapy exercises to help with pain management and reduce the tightness in the muscles and tissues surrounding her pelvis. She is also on hormone therapy to reduce the growth of endometriosis tissue. Still, she’s “exhausted.”
‘The pain wasn’t normal’
Advocates like Philippa Bridge-Cook, PhD, a molecular biologist in Toronto who chairs the Endometriosis Network Canada’s (ENC) board of directors, says it wasn’t until she was in her 20s that she realized that not being able to function during her period and the amount of pain she experienced wasn’t normal. It took five doctors to get the diagnosis of endometriosis — a delay complicated by the fact that the disease is associated with infertility. Bridge-Cook had been getting pregnant without difficulty but experienced several miscarriages.
“I’m lucky because I was really able to do my own research and be my own advocate,” she says. “I had a very supportive family around me. I had friends and I have the financial resources to access things like physiotherapy that aren’t paid for by the government.”
She’s determined to spread awareness and help others.
“There are a lot of people struggling,” says Bridge-Cook, who, after many failed treatments, followed by surgeries is now living an active life and has three children. “They haven’t found the right doctor or their pain is still being dismissed by their doctor, they can’t access the treatment, or get a diagnosis, and even if they do get a diagnosis, they can’t get the treatment they need afterwards — either because they can’t afford it or it isn’t available.”
These are the reasons why Campbell joined the ENC’s board of directors in 2021: to advocate for access to treatment and build support networks for people affected by endometriosis.
“When you’re around people who totally understand where you’re coming from, what you’re dealing with day to day, it can save your life,” she says.
In 2021, the Ontario government designated March Endometriosis Awareness Month, encouraging open conversations and better education so that people can get faster diagnosis and treatment. Campbell sees knowledge of the condition as a win for patients, their families and healthcare providers.
“We’re able to recognize it, celebrate and bring awareness,” she says, expressing hope that the conversation flows into schools so that young people can also learn about the disease — something that would have made a difference in her early days of fear and frustration.
While no other provinces or territories in Canada have an official awareness month for endometriosis, Campbell says there are a lot of people who are interested in working together to create change, including the federal government which has made a commitment to supporting women’s sexual and reproductive health.
“I think we’re poised for a big moment where we can make the government aware of the burden that people with endometriosis have and make them understand that with investments into education and research, there’s a great possibility to improve the situation for people with endometriosis,” she says.
Dr. Sony Singh and his team at The Ottawa Hospital’s Shirley E. Greenberg Women’s Health Centre have also been working on pioneering change for people living with endometriosis. Many wait seven to 10 years to access the care they need because of lack of awareness, lack of good imaging like ultrasound and magnetic resonance imaging (MRI) scans, and lack of understanding of the disease by both patients and healthcare providers, he says.
“Endometriosis can involve almost every organ and every body system, so we try to look at the patient holistically,” says Singh. “I’ve developed a clinical practice that focuses on surgery, but also looks at the patient in terms of developing a complete management plan that looks at chronic pain as well.”
He’s also established a fellowship program for obstetrician graduates to join his team for one or two years to learn the more advanced approaches to treat women’s health issues, including endometriosis. Graduates in the last 15 years have taken what they’ve learned and work across the country and abroad in leadership positions to offer critical early diagnosis and care.
But in light of these developments, has there been much improvement in the treatment endometriosis today, compared to what we have seen in the past?
“The past can be defined by a word — alone — both for the families and those who were affected, but also for many providers who worked in this area,” says Singh.“The future offers hope and hope is what our patients look for. Irrespective of what their journey will look like and whether we can help their pain, their situation, or fertility, giving them that glimmer of hope and support is what matters.”
The most significant step forward has been diagnosis, he says, especially with imaging like MRI and ultrasound that is accessible and minimally invasive so that endometriosis can be identified without the need for surgery.
“There is no ideal medical treatment or perfect surgery, because there are risks to everything we offer, he says. “But in the meantime, there are options. And it’s important to look at all the options to make sure that it’s right for them, because there’s no one perfect treatment for any individual.”
For more information on endometriosis, support and resources contact Endometriosis Network Canada (ENC).
Karen Hawthorne in a Toronto-based freelance writer. She can be reached here.
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