B.C. woman talks about the most common and dangerous illness you have ever heard of – The Golden Star



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Emma Weiland, of Nelson, has suffered the severe pain of endometriosis since she was 12 years old. But it took them until age 18 to get a diagnosis, despite many visits to many doctors and emergency rooms.

Lack of diagnosis, wrong diagnosis, not being taken seriously, multiple surgeries – are common experiences of women with the disease.

Throughout high school, this athletic and academically gifted young woman suffered a debilitating monthly pain.

"In all the dance competitions, all football competitions, finals, have always been there, all this pain," she says. "I continued to accept that.

"I went to dozens of visits to the hospital before being taken seriously, because the ultrasound and other exams returned without anything abnormal. They finally did a CT scan. In June of last year I went to do emergency surgery because they thought I had ovarian twist. "

This turned out not to be the case, but during the surgery they found that she had endometriosis. "We had never heard the word before," she says. "We've never had any information about it."

This surgery provided a diagnosis, but not a cure. There is no cure.

One in 10

Endometriosis affects one in 10 women, according to the US Department of Health. This is a shocking number for a disease that 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 organic dysfunction. Its cause is unknown and research has been limited.

Endometriosis was found in the intestines of Emma, ​​Fallopian tubes, appendix, bladder, uterus and cul-de-sac.

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

During the summer recovery, she enrolled in business courses at Victoria University, but things did not go well there.

"I came back for Thanksgiving and Mom looked at me and said something was wrong. I had lost about 15 pounds and was collapsing physically. I was lucky if I could get from my room in the basement to the kitchen. Some days I would spend the whole day without eating because I could not get up.

She was spending much of her time in a wheelchair.

Weiland retired from high school and placed 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 not necessarily a cure) for endometriosis. Weiland says there are fewer than five doctors in Canada who do it.

"I was told I would have to wait up to a year. I have not received an initial call about a query at this time. "

"Doctors who do not believe in you"

Frustrated by the waiting time, her family took her to a specialist, Dr. Ken Sinervo in Atlanta, who underwent surgery in January a month in advance.

Without excision surgery, patients traditionally receive medications, hormones, ablation therapy or hysterectomy. These 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 do not believe in you and do not recognize your illness or know how to treat it, it becomes so tiring that you can not imagine living in it. more, not worth it. So without my parents and especially my mother advocating for me and traveling and finding someone to do proper surgery, I would not be here. "

Effects on mental health

Deborah, who did a thorough research on endometriosis while her daughter has dealt with it, says the disease does not only affect the body.

"It affects your hormones, which affects your mental state. Many women are struggling with the mental illnesses created by this disease. "

Emma says she's feeling fine now, six months after the excision surgery. The surgeon told her that the recurrence rate is 10%.

"As far as I'm concerned, I have a new life. I can not work eight hours, but I can work for up to four hours. I still definitely still have surgical pains and cycle pains but it is not comparable [to before]. Every day is better.

"I have to walk with me right now. My new body is trying to reach my personality because I need to take breaks. I am in about 50% of what I would normally be able to do. But I was two percent before my surgery.

Not taken seriously

Emma plans to dedicate herself full-time, in collaboration with her mother, to form and direct the Endometriosis Organization of Canada.

His first project is Demystifying Endometriosis at the Capitol Theater 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 video's message is in line with her view: that misogyny plays a major role in the lack of research, scarce resources, and scarce medical knowledge related to endometriosis. It's a women's disease, so it was not taken seriously, she says.

There are already some support organizations in Canada, says Emma, ​​but the new group will support even more by focusing on education and advocacy.

"We want to promote advocacy and education in schools and colleges so that people can become their own advocates."

"A very lucky person"

Emma wants to do this because she has the privilege of being able to travel to surgery.

"Most women spend all their money on painkillers and appointments. Therefore, I am very lucky to be only 19 years old and to have undergone excision surgery and to be able to defend myself and others. This is just a dream for so many women I've met.

"Many women arrive, but within a week they are in an outbreak or at the hospital or doing another surgery. It is heart breaking to watch. It is very debilitating being human. You lose your humanity. You lose who you are.

Tickets for endometriosis demystification at the Capitol Theater on Saturday at 7:00 p.m. can be obtained personally at the Capitol Theater box office, at 250-352-6363 or online at capitoltheatre.ca.

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