Endometriosis affects one in 10 women, including Nelson’s Emma Weiland (left). She and her mother Deborah Weiland (right) want to raise awareness about a disease they say doesn’t get enough attention or research. Photo: Bill Metcalfe

Endometriosis affects one in 10 women, including Nelson’s Emma Weiland (left). She and her mother Deborah Weiland (right) want to raise awareness about a disease they say doesn’t get enough attention or research. Photo: Bill Metcalfe

VIDEO: B.C. woman talks about the most common and dangerous disease you’ve never heard of

Nelson’s Emma Weiland lives with endometriosis

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.

Official Trailer – ENDO WHAT? from ENDO WHAT? on Vimeo.

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.

Like us on Facebook and follow us on Twitter.

Get local stories you won't find anywhere else right to your inbox.
Sign up here

Just Posted

Hope Secondary School. (Emelie Peacock/Hope Standard)
Third COVID-19 exposure at Hope Secondary Nov. 24

School district has lowest rates of exposure in all of Lower Mainland: superintendent

Meaghan Esmeijer delivers fully packed diaper backs to the maternity floor of Chilliwack General Hospital as part of the Southside Church ‘Love them Both’ program. (Submitted photo)
Chilliwack’s Southside Church spreads Christmas cheer with ‘All is Bright’ day

The fifth annual community outreach event happens Nov. 28 with activities throughout Chilliwack

Shane Goodvin had just bought a house with wife Laura Major when he started experiencing severe back pain. That led to a diagnosis of pancreatic cancer, and the father of five children is now in rough shape. (Submitted photos)
GoFundMe set up for Chilliwack man fighting pancreatic cancer

Shane Goodvin has five children and a loving wife, and he’s worried about their future

RCMP detatchments across the UFVRD are participating in Stuff the Cruiser this year. Last year, Agassiz’s detachment gathered more than 1,000 pounds of food and $1,500 to benefit the local food bank, which surpassed that year’s expectations. (File Photo)
Agassiz ‘Stuff The Cruiser’ event canceled this year

The annual tradition of giving and love continues with the Agassiz RCMP… Continue reading

A man wearing a face mask to help curb the spread of COVID-19 walks in downtown Vancouver, B.C., Sunday, Nov. 22, 2020. The use of masks is mandatory in indoor public and retail spaces in the province. THE CANADIAN PRESS/Darryl Dyck
B.C. records deadliest day of pandemic with 13 deaths, 738 new COVID-19 cases

Number of people in hospital is nearing 300, while total cases near 30,000

(File photo)
Alberta woman charged after allegedly hitting boy with watermelon at Okanagan campsite

Police say a disagreement among friends at an Adams Lake campsite turned ugly

Court of Appeal for British Columbia in Vancouver. (File photo: Tom Zytaruk)
B.C. woman loses appeal to have second child by using late husband’s sperm

Assisted Human Reproduction Act prohibits the removal of human reproductive material from a donor without consent

B.C. projects targeting the restoration of sockeye salmon stocks in the Fraser and Columbia Watersheds will share in $10.9 million of federal funding to protect species at risk. (Kenny Regan photo)
13 projects protecting B.C. aquatic species at risk receive $11 million in federal funding

Salmon and marine mammals expected to benefit from ecosystem-based approach

Join Black Press Media and Do Some Good
Join Black Press Media and Do Some Good

Pay it Forward program supports local businesses in their community giving

Cannabis bought in British Columbia (Ashley Wadhwani/Black Press Media)
Is it time to start thinking about greener ways to package cannabis?

Packaging suppliers are still figuring eco-friendly and affordable packaging options that fit the mandates of Cannabis Regulations

File photo
Surrey RCMP investigating death threat against Surrey councillor

‘On Monday morning I received a threat on messenger that basically said to put a bullet in me,’ Councillor Jack Hundial told the Now-Leader

Krista Macinnis displays the homework assignment that her Grade 6 daughter received on Tuesday. (Submitted photo)
B.C. mom angry that students asked to list positive stories about residential schools

Daughter’s Grade 6 class asked to write down 5 positive stories or facts

Barrels pictured outside Oliver winery, Quinta Ferreira, in May. (Phil McLachlan - Black Press Media)
B.C. Master of Wine reflects on industry’s teetering economic state

Pandemic, for some wine makers, has been a blessing in disguise. For others, not so much.

Most Read