Uncovering endometriosis: Sask. conference brings painful condition out of the dark

Pain remained a steadfast companion for Laura Millions Cone from her childhood into adulthood.

It wasn't until she was in her early 20s that she got a name for that pain: endometriosis.

Millions Cone is the co-founder of a Saskatchewan support group and an organizer of the Third Patient Conference on Endometriosis and Pelvic Pain in Saskatoon on Saturday.

Education leads to recovery

She said education is key to making sure endometriosis patients get the best treatment in the shortest amount of time.

"I have spoken with people personally after the conferences and they have sent me messages and emails and telephone calls just saying how grateful they are," she said.

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"How this thing or that thing rang so true to them and it led them to a direction where they could start healing in a different way and start treating their pain and their disease in a different way."

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.

Pain from a young age

Millions Cone started experiencing extreme pain as a young girl.  At the age of 12, she passed out from pain trying to walk home from school.

After years of emergency room visits, tests, doctors who didn't take her seriously and unrelenting pain, she learned of her diagnosis in her early 20s.

"Knowing what is going on and why this stuff is happening has helped, but it also creates a burden just in itself," said Millions Cone.

Finally, a diagnosis 

"The diagnosis is heavy, whether or not you have the word I guess, but once you have the word, yeah, you're stuck with it."

Even with the diagnosis, which she said was given "flippantly", she said the seriousness of the condition was not initially communicated to her.  

Millions Cone said she was originally told she would still be able to have children, something she had always wanted, but she has been unable to.

"It's devastating, and it's something that I mourn continually each day and it's made me have to look at my life in a completely different way," she said.

The little things

Driven by her own experiences, Millions Cone started trying to find a way to promote education about endometriosis.

Supported in part by her doctor John Thiel, who is also head of obstetrics and gynecology at the University of Saskatchewan, she co-founded a support group which now has more than 400 members across the province.

She said Saturday's conference is one way to get the best treatment for patients in Saskatchewan.

"Even if it's sometimes just small things I know that it's life-changing for all of these patients and all of the people that attend because it's life-changing for me too," said Millions Cone.