Nelson’s Emma Weiland has suffered the severe pain of endometriosis since she was 12. But it took until she was 18 to get a diagnosis, despite many visits to many doctors and emergency rooms.
Lack of diagnosis, misdiagnosis, not being taken seriously, multiple surgeries — these are common experiences of women with the disease.
All through high school this athletic and academically gifted young woman suffered monthly debilitating pain.
“At every dance competition, every soccer competition, finals, it was always there, all that pain,” she says. “I continued to accept it.
“I went to dozens of hospital visits before I was taken seriously, because ultrasounds and other tests came back with nothing abnormal. They finally did a CT scan. In June of last year I went in for emergency surgery because they thought I had ovarian torsion.”
This turned out not to be the case, but during the surgery they found she had endometriosis. “We had never heard the word before,” she says. “We had never had any information about it.”
That surgery supplied a diagnosis but not a cure. There is no cure.
One in 10
Endometriosis affects one in 10 women, according to the U.S. Department of Health. That’s a shocking number for a disease most people have never heard of.
Tissue similar to the lining of the uterus grows in other parts of the body, most commonly in the pelvic area, causing pain, infertility and organ dysfunction. Its cause is unknown and research has been limited.
Endometriosis was found on Emma’s bowels, Fallopian tubes, appendix, bladder, uterus, and rectouterine pouch.
During recovery over the summer she enrolled in business courses at the University of Victoria, but things did not go well there.
“I came back for Thanksgiving and Mom took one look at me and said something is wrong. I had lost about 15 pounds and I was falling apart physically. I was lucky if I could make it from my room in the basement up to the kitchen. Some days I would go the whole day without eating because I could not get up.”
She was spending much of her time in a wheelchair.
Weiland withdrew from school and put herself on a waiting list for excision surgery at B.C. Women’s Hospital. Excision surgery (more advanced than the surgery she received in the summer) is considered the gold standard treatment (but necessarily not a cure) for endometriosis. Weiland says there are fewer than five doctors in Canada who perform it.
“I was told I would have to wait up to a year. At this point I still have not received an initial call about an appointment.”
‘Doctors who don’t believe you’
Frustrated by the wait time, her family took her to a specialist, Dr. Ken Sinervo in Atlanta, who performed the surgery in January with a month’s notice.
Without excision surgery, sufferers are traditionally given drugs, hormones, ablation therapy, or a hysterectomy. Those are considered palliative management.
“If we had followed what was recommended as a treatment plan she would still be very sick,” says Emma’s mother, Deborah Weiland.
Emma says it would be worse than that.
“I would not be here today,” she says. “I would have committed suicide. This disease not only affects you physically but when you are in the hospital and talking to these doctors who don’t believe you and don’t recognize your illness or know how to treat it, it becomes so exhausting that you cannot imagine living it any more, it is not worth it. So without my parents and especially my mother advocating for me and travelling and finding someone to do proper surgery, I would not be here.”
Mental health effects
Deborah, who has done thorough research on endometriosis while her daughter has been coping with it, says the disease doesn’t just affect the body.
“It affects your hormones, which affects your mental state. So many women are battling mental illness created by this disease.”
Emma says she’s feeling well now, six months after the excision surgery. The surgeon told her the recurrence rate is 10 per cent.
“As far as I am concerned, I have a brand new life. I can’t do a work shift of eight hours but can work up to four hours. I still definitely still have surgical pains and cycle pains, but it is not even comparable [to before]. Every day is better.
“I have to pace myself right now. My new body is trying to catch up with my personality because I do need to take breaks. I am at about 50 per cent of what I would usually be able to to do. But I was at two per cent before my surgery.”
Not taken seriously
Emma plans to devote herself full time, in collaboration with her mother, to form and run the Endometriosis Organization of Canada.
Their first project is Demystifying Endometriosis at the Capitol Theatre on Saturday, an event that will include a screening of the documentary Endo What? and a discussion with Emma about her experience.
Emma says the message of the video aligns with her own opinion: that misogyny plays a big part in the lack of research, scarce resources and scant medical knowledge related to endometriosis. It’s a women’s disease, so it has not been taken seriously, she says.
There are already a few support organizations in Canada, Emma says, but their new group will take support further by focusing on education and advocacy.
“We want to bring advocacy and education into schools and colleges so people can become their own advocates.”
‘A very lucky person’
Emma wants to do this because she’s privileged to have been able to travel for her surgery.
“Most women spend all their money on painkillers and appointments. So I am very lucky to be only 19 and to have had excision surgery and to be able to advocate for myself and others. That is only a dream for so many women I have met.
“So many women reach out, but in a week’s time they are in a flare or in the hospital or getting another surgery. It is heartbreaking to watch. It is too debilitating to be human. You lose your humanity. You lose who you are.”
Tickets for Demystifying Endometriosis at the Capitol Theatre on Saturday at 7 p.m. can be obtained in person at the Capitol Theatre box office, by phone at 250-352-6363 or online at capitoltheatre.ca.