'I was very much dismissed': Sask. woman battles severe pain that comes with endometriosis

Chelsea Fataki has been experiencing severe pelvic pain since she was a child.

"The pain went down throughout my legs, into my feet, lower back, and surrounding my hips," Fataki explained.

"I would just have this widespread, severe cramping pelvic pain that would leave me lying in the fetal position. It was enough to make me faint at times, or vomit."

She recalled going to the hospital for this pain when she was only five years old. As she grew older, the pain continued.

She competed in gymnastics and her pain was again brushed off as simply stiffness in her legs from the sport.  

At ten years old, doctors told Fataki her pain was just something she had to get used to as part of her menstrual cycle.

The cause

The pain Fataki was feeling was being caused by a condition called endometriosis. Fataki was diagnosed at 16.

Endometriosis is a condition where uterine lining grows on the outside part of the uterus. It can also grow in other places in the pelvis. Like in a regular menstrual cycle, the lining sheds but it has nowhere to go. It can be extremely painful.

"I had doctors turn me away, send me home to bite a blanket and cry into my pillow at night. Many doctors said, 'this is the way cycles are for women. You just need to kind of grow into it; it's going to get better as you age.'"

"Others were just plain cruel and made reference to things about my character that were completely not true. I was very much dismissed as a child."

Even after being diagnosed, Fataki said she still had trouble getting doctors to take her pain seriously.

"Even then, doctors in the emergency room still had trouble being able to treat and manage that pain because they questioned whether or not it was that severe … they would question if I was telling the truth," she said.

Relatively little is known about endometriosis, and the options for managing it are birth control, surgery to remove the tissue or a hysterectomy. Fataki had a laparoscopy done to try and manage the pain but said it was unsuccessful. Eventually, she chose to have a hysterectomy.

"That was one of the hardest calls I've had to make," Fataki said.

During that surgery, they found the endometriosis had spread to nearly all of the organs in her pelvic cavity. She's currently awaiting more surgery. Fataki said she is hoping legislation is altered to grant endometriosis patients disability status, due to the severity of the pain and the fact that there is no cure.

'Chelsea's story is not unique'

Dr. John Thiel is Fataki's doctor and the department head of obstetrics and gynecology at the University of Saskatchewan.

Thiel said medical educators have done a poor job of teaching physicians about pain.

"Unfortunately, Chelsea's story is not unique," Thiel said.

"We're certainly trying to address that now in the way that we teach medical students and residents; we're spending considerably more time in helping to manage pain."

Thiel said part of the challenge for Fataki was that her symptoms appeared at a young age, and the teaching at the time was that endometriosis didn't appear that early.

"We don't know why women get endometriosis, we don't know why some women have very minimal disease but absolutely incapacitating systems and some women have quite advanced disease … but no real history of pain. So our understanding of the disease process is very limited," he said.

"But we do know is that when it does cause ongoing pain for someone like Chelsea, it's important to listen."