Unable to get treatment here, N.S. woman with endometriosis to leave province

The simple act of wearing jeans is a win for Michelle Avery.

The Halifax woman has endometriosis, and for years battled pain so severe she couldn't wear anything tight around her waist.

An expanded wardrobe is just one small way Avery's life is returning to normal, thanks to surgery she received from one of Canada's leading endometriosis specialists in June.

"It's like night and day," said Avery. "This time last year, my daily pain was around nine out of 10. These days I'd say it's about a three out of 10."

But Avery couldn't get the surgery she needed in her home province.

She travelled to Ottawa for three weeks this summer because there are no doctors in Nova Scotia who treat the most difficult endometriosis cases. There's also no cure for the painful condition that affects one in 10 women, so Avery is now preparing to leave the province for good to get the care she needs.

"It breaks my heart to say that I couldn't find the same quality of care here," she said. "I felt unheard and treated like a number."

Endometriosis is when tissue that's similar to the lining that's found inside the uterus grows outside the uterus. It can take women up to a decade just to get a diagnosis.

"I was pretty much spending my life in bed," said Avery. "I had constant ... pain that walking made worse, sitting down made worse. Trying to go anywhere in a car, the pain was just unbearable."

Avery had surgery in Halifax in June 2018, but that didn't stop the pain. In fact, it got worse, she said. 

So she set her sights on Ottawa where Dr. Sony Singh oversees one of the few centres of excellence for chronic pelvic pain in Canada.

He was able to cut out the deeply infiltrating endometriosis, and also performed a hysterectomy to remove something Avery didn't initially know she had — adenomyosis, where the lining of the uterus grows into the muscle of the uterus itself.

While Avery's surgery was covered by insurance, she estimates it cost her between $3,000 and $4,000 to travel and stay in Ottawa.

IWK trying to open chronic pain clinic

Endometriosis isn't considered a sub-specialty anywhere in Canada, and therefore falls within the scope of gynecology in Nova Scotia.

Gynecologists can and do treat women with endometriosis in this province, "and it would be very select cases that would benefit from Dr. Singh's expertise or other leaders in endometriosis surgery across Canada," said Dr. Elizabeth Randle with the IWK in Halifax.

She's trying to start the Maritimes' first multidisciplinary chronic pain clinic. This summer, she and a colleague received funding so they can do a feasibility study.

The clinic would be a "one-stop shop" for women battling the condition, said Randle. They'd be able to see a pain expert, gynecologist, physiotherapist and counsellor all in one place.

It would also offload "some of the burden that's being placed on primary-care physicians at this point in time to try and manage chronic pain syndromes that are, you know, a little bit beyond their scope," she said.

If the clinic is approved, it's still years away from opening, said Randle. That's too late for Avery, who said she's planning to move to Ottawa in the new year to be close to her surgeon.

"My family is here, my friends are here, everything I've ever known is here and I don't want to leave, but I have to put my health first," she said.

A spokesperson for the Department of Health and Wellness said in an email that treatment for endometriosis is already available in Nova Scotia by gynecologists.

According to the co-founder of an endometriosis support group in Dartmouth, N.S., called Undo Endo, Avery is not alone in looking for care outside Nova Scotia.

Brenna Shannon, who was diagnosed with endometriosis in 2006, said she regularly hears from women who decide to travel to the U.S. or elsewhere in Canada for treatment. Many more wish they could, but can't afford it, she said. 

"I am definitely hearing a lot of people frustrated. Part of it because of the broken health care system we have here," she said. "Part of it because just navigating the system itself is a huge thing even just to get to a gynecologist who knows something about endometriosis is such a struggle." 

Shannon and Avery are urging other women with endometriosis to fight for better care, whether that means keeping copies of health records, writing down symptoms or joining a support group.

"It was a fight to get what I needed, and I felt like I had to be more aggressive than I ever would have," said Avery.

Her perseverance paid off, but she knows the hard work isn't behind her. There are still physiotherapy appointments to attend, and the fear that the pain will return.

But for now, Avery is enjoying life by spending time at family barbecues and walking in the woods.

"It's like a piece of my life has been given back to me," she said. 

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