Endometriosis: Creating community through pain

Kristina Kasparian has lived with debilitating pain for more than 18 years. For 16 of those years, she had no idea what was causing it.

Kasparian was suffering from a whole slew of symptoms, from painful cramps, to joint pain, difficulty breathing, chronic fatigue, anemia and digestive issues. She was diagnosed with irritable bowel syndrome and acid reflux, but she knew there was something else wrong.

She went from doctor to doctor, but felt dismissed. A few years ago, she finally found a specialist in Toronto who was willing to help. Through surgery, he officially diagnosed her in 2016 with endometriosis.

"He was the only doctor who even felt it just by examining me that something was wrong. [My] uterus wasn't even moving — it wasn't mobile, it was all stiff," said Kasparian.

Endometriosis is a condition where the lining of the uterus grows outside of the uterus, instead of inside. It is often characterized by severe pain and infertility. One way to definitively diagnose it is through a surgery called a laparoscopy — a surgery where a small camera is inserted through an incision near your navel.

In Kasparian's case, her symptoms had gotten so severe by the time she was diagnosed, that the tissue and swelling had grown all the way into her abdominal cavity — her pelvic wall, diaphragm, liver and intestine.

Since her diagnosis, Kasparian, who is now 33, has been going through multidisciplinary treatments. Last year, when she was suffering through one of her most painful days, she decided to channel that pain into writing.

She wrote pages and pages about her journey and decided to share her story, and the stories of others, through an online community she created called Alba: A New Dawn.

Now a year later, the Instagram page has more than 1,000 followers from all over the world. Women are encouraged to share their own struggles with endometriosis, infertility issues and women's cancers — and their stories are then shared to the page.

"The goal is really to start talking about things that are pretty private and embarrassing for some or difficult to talk about because there's so many taboos surrounding these conditions," Kasparian said.

Illustrator and textile designer, Magali Robidaire, has been touched by the project from the start. She was diagnosed with endometriosis after she suffered an ectopic pregnancy.

She eventually had five miscarriages.

Through sharing her story on Alba, she realized she wasn't alone.

"In my own personal experience, I realized that I felt completely alone when I was diagnosed with endometriosis, when I had all my miscarriages, and when I interact with these other women, I realize that it's something no one talks about," said Robidaire.

As an artist, Robidaire decided to join the Alba community to share her personal story — and her artwork. All art sale proceeds go towards research of endometriosis and women's cancers.

Dr. Fady Mansour, a gynecologist and obstetrician at the McGill University Health Centre (MUHC), said endometriosis is difficult to diagnose because experiencing some pain during a woman's period is normal. Also, symptoms can vary greatly from person to person.

"Some women will have no pain but problems getting pregnant. Some women will have a lot of pain but no problems getting pregnant, and then some women can have everything," he said, adding that it isn't unheard of for an endometriosis diagnosis to take up to 10 years.

Kasparian said she was surprised to see how many women from around the world have been sharing similar stories on her online support community.

"You realize how many aspects of the story repeat themselves and how many women feel isolated and dismissed and, so the impact of not knowing what's wrong with you and not being able to find someone committing to finding that answer is really isolating and devastating."

Kasparian now hopes to take her efforts from the virtual world into classrooms and conference rooms, where she hopes to spread awareness about endometriosis, so that they might be able to recognize the signs more quickly.