She is one of many ‘desperate’ Canadians seeking help for endometriosis abroad. Why they should be careful

1:04
She is one of many ‘desperate’ Canadians seeking help for endometriosis abroad. Why they should be careful

Global News heard from dozens of women in Canada about the struggle to access endometriosis care, several of whom are now seeking or have sought care outside of Canada. This is part 2 of a three-part series on why women choose to leave their home countries for medical care. Part 1 was posted on Friday, August 30, and part 3 will be posted on Friday, September 6.

Krista Rodriguez has been fighting for over 24 years to get the healthcare system to take her pain seriously, but she doesn’t want to wait any longer.

The 39-year-old paralegal and immigration consultant from St. Catharines, Ontario, is exploring treatment options outside of Canada to get help for her endometriosis after feeling let down by the system.

“It’s pervasive; it affects every aspect of your life,” Rodriguez says.

She first experienced extreme pain from the condition when she got her first period at age 14. However, the pain lasted the entire month.

“When you’re that young, you don’t really know what’s normal and what’s not. I ended up seeking medical help and was constantly being teased and told that it was just my period and that I should just swallow it and take some Midol,” Rodriguez said.

Endometriosis is a debilitating chronic condition that occurs when tissue similar to the lining of the uterus abnormally grows outside the uterus to form lesions, cysts, lumps, and other growths. If left untreated, the condition can spread to other organs, causing obstructions and flaring up each month during menstruation.

Discover ‘Bittersweet’

According to the Endometriosis Network Canada, it takes an average of five and a half years for endometriosis to be diagnosed in Canada, but in Rodriguez’s case, the diagnosis wasn’t officially made until age 38, 24 years after the pain first started.

“It was a very mixed moment,” she says about the moment she finally received the diagnosis.

“I had been told I was a hypochondriac so many times that I even started to doubt myself. I thought I was crazy — they made me feel like I was crazy, that there was something mentally wrong with me, and that I was just some kind of hulking wimp who couldn’t get my period like every other woman.”

She says years of ignoring her symptoms by medical staff had a negative impact on her self-confidence and only made her condition worse.

She is angry and says that research into and treatment options for endometriosis lag behind those of other diseases.

“When you look at how this disease evolves over time, if I had had better treatment, if someone had listened to me earlier, maybe I wouldn’t have the health problems I have now,” Rodriguez says.

“Maybe if they had given me the partial hysterectomy that I asked for over and over again and was denied over and over again, I wouldn’t be suffering anymore. But on top of that, there is now endometriosis outside the uterus, which wasn’t there before.”

To make matters worse, she is currently unable to take medication due to a thyroid condition, so surgery is the only option.

‘I am absolutely desperate’ for treatment

Because the endometriosis has reportedly spread, Rodriguez needs a partial hysterectomy and excision surgery to remove the endometriosis from her body and relieve the pain. However, finding a qualified doctor is proving difficult.

Despite her case being considered more advanced, she says the wait time for an appointment with a surgeon is still 18 to 22 months, and that doesn’t even include the wait time for surgery.

“I am absolutely desperate. I am prepared to leave the country and I am prepared to pay if necessary, because I simply have no quality of life,” she says.

“I’m trying to do everything right. I waited for a surgeon, I did everything, I jumped through all the hoops and still I’m told I can’t get a consultation for two years. I’m going to do what I have to do to take care of myself.”

This prompted her to look to the Dominican Republic, where her husband is originally from and where they have family who can help her during her recovery.

“I’m lucky because I have family there, so I know where to go. I know the two best clinics in the country and I know people at the consulate,” Rodriguez said of her decision to go to another country.

“I feel comfortable because I can go out and look at these facilities and do research on some of these surgeons. Some of the surgeons that I’m interested in are surgeons in the U.S., but they’re American Dominican, so they go back and forth, and I feel a little more comfortable knowing that they have American credentials.”

She says the surgery, excluding aftercare, will cost between $6,000 and $12,000.

Still, she says the decision to seek treatment in another country is scary and not without risks, including navigating another country’s medical system and knowing where you can safely undergo surgery.

“I think you really have to do your research if you’re considering something like this and talk to people who have already had surgery,” she says.

The risks of travel: ‘You have to be your own strongest advocate’

Dr. Jamie Kroft, deputy chief of gynecology and obstetrics at Sunnybrook Hospital and associate professor at the University of Toronto, warns that patients should be cautious about booking treatment outside Canada.

Kroft says that while endometriosis is becoming more well-known, it is still stigmatized as a women’s issue and not taken seriously because it is only associated with menstruation.

“They just have to be very careful that they’re not being exploited in other countries that are charging a lot of money and may not even provide better or worse care than what’s available here in Canada,” Kroft said.

She also warns of caution when looking up information online, as not all information is correct.

“In other countries, the care model may be different. So I think it may seem like the only option is to go abroad, but there are many excellent endometriosis surgeons in Canada,” she notes.

Kroft points to organizations like the Endometriosis Network Canada, where people with endometriosis can find support and a list of health care providers who can treat the condition.

She says the condition can be treated medically without surgery, but it is important to detect it early.

In recent years, Kroft has seen waiting times for all surgeries increase due to the closure of operating rooms during the pandemic.

“We already had wait times for surgeries in our publicly funded health care system, and those wait times were made even longer by these closures,” she says.

The problem is further compounded by the fact that not every gynecologist has the proper training to treat this condition.

“There is a wide range of complexity for surgery for endometriosis, so some patients with simpler cases may be treated by general gynecologists. However, patients with more advanced severe endometriosis often require an endometriosis subspecialist, and those surgeons have longer wait times and are more difficult to reach initially,” Kroft notes.

Rodriguez believes that until there is change in the Canadian medical system, women should continue to push for their concerns to be taken seriously and not doubt themselves.

“You have to be your own strongest advocate and not allow the medical industry or people in your life to gaslight you. And think that you’re crazy because you’re not, and that your pain is real. And don’t let anyone tell you otherwise,” she says.