She’s one of many ‘desperate’ Canadians seeking endometriosis help abroad. Why they must be careful
Global News had heard from dozens of women across Canada about the struggle to access care for endometriosis, several of whom are now seeking or have sought help outside of Canada. This is Part 2 of a three-part series on why women are choosing to leave their own country for medical help. Part 1 was posted on Friday, Aug. 30 and Part 3 will be posted on Friday, Sept. 6.
Krista Rodriguez has spent more than 24 years fighting for the health-care system to take her pain seriously, but she does not want to wait any longer.
The 39-year-old paralegal and immigration consultant from St. Catharines, Ont., is researching treatment options outside of Canada to get help for her endometriosis after feeling let down by the system.
“It’s all-pervasive; it impacts every single aspect of your life,” Rodriguez says.
She first started feeling extreme pain brought on by the condition when her period started at 14, but the pain would last all month long.
“When you’re that young, you don’t really know what’s normal and what’s not. Then, eventually, I started seeking medical assistance and was continuously gaslighted and told that it’s just my period and suck it up and take some Midol,” Rodriguez says.
Endometriosis is a debilitating chronic condition that occurs when tissue similar to the lining of the uterus implants abnormally outside of the uterus to form lesions, cysts, nodules and other growths. When left untreated, the condition can spread to other organs, cause obstructions and flare up each month during menstruation.
‘Bittersweet’ finding out
The Endometriosis Network Canada reports that the average delay in diagnosing endometriosis in Canada is five and a half years, but in the case of Rodriguez, she was only officially diagnosed at 38 — 24 years after the pain first started.
“It was a very bittersweet moment,” she says of finally getting a diagnosis.
“I had been told so many times that I was a hypochondriac, that I actually even started to doubt myself. I thought I was insane — they made me feel like I was insane, like there’s something mentally wrong with me, and that I’m just some sort of colossal wuss who can’t take a period like every other woman does.”
Women experiencing pain from endometriosis.
By Fasai Sivieng
For years, she says the dismissal of her symptoms by medical staff really negatively impacted her self-esteem and led to her condition only getting worse.
She is upset, saying that research and treatment options for endometriosis are behind compared with other diseases.
“If you look at how this disease develops over time, if I would have had better treatment, if somebody would have listened to me earlier on, then maybe I wouldn’t have the health problems that I have today,” Rodriguez says.
“Maybe if they would have given me the partial hysterectomy that I’ve asked for time and time again and been denied over and over and over again, then I wouldn’t still be suffering. But on top of that, now there’s endometriosis outside of the uterus, which there wasn’t previously.”
To make matters worse, she is not currently able to take any medication because of a thyroid condition leading to surgery being the only option.
‘I’m absolutely desperate’ for treatment
Because she says the endometriosis has spread, Rodriguez needs a partial hysterectomy and excision surgery to remove the endometriosis from her body to relieve the pain, but finding a doctor qualified has proved hard.
Despite having what is considered a more advanced case, she says she is still being told the wait time to meet with a surgeon is 18 to 22 months, and that does not include the wait time to get the surgery.
“I’m absolutely desperate. I’m willing to leave the country, and I’m willing to pay if I have to because I just have no quality of life,” she says.
“I try to do everything right. I waited for a surgeon, I did everything, I jumped through all the hoops, and still, I’m being told that I can’t even get a consult for two years. I’m going to do what I need to do to take care of myself.”
This has led her to look at options in the Dominican Republic, where her husband is originally from and where they have family that can help her during her recovery.
“I’m lucky because I have family there, so I know where to go. I know what the top two clinics are in the country, and I know people in the consulate,” Rodriguez says of her decision to go to a different country.
“I feel comfortable, being able to view those facilities and research some of these surgeons. Some of them 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 bit more comfortable, knowing that they have American credentials.”
She says the surgery, not including aftercare, will cost between US$6,000 and US$12,000.
But still, she says the decision to seek treatment in another country is scary and not without risks, having to navigate another country’s medical system and know where the safe places to get surgery are.
“I think that you really, really, really have to do your due diligence when you’re considering something like that and speak to people who have already been operated there,” she says.
The risks of travel: ‘You have to be your own strongest advocate’
Dr. Jamie Kroft, the deputy chief of gynecology and obstetrics at Sunnybrook Hospital and an associate professor at the University of Toronto, warns that patients need to be cautious about booking treatment outside of Canada.
Kroft says that while endometriosis is becoming more well-known, there is still a stigma attached to it being a women’s issue, and it is not taken as seriously because it’s associated with a period.
“They just have to be really careful about not being taken advantage of in other countries that charge a lot of money and may not actually provide any better or maybe worse care than what is available here in Canada,” Kroft says.
She also urges caution when researching things online, noting that not all information is accurate.
“In other countries, the model of care can be different. So, I just think that it can seem like the only option is to go outside of the country but there are a lot of excellent endometriosis surgeons within Canada,” she notes.
Kroft points to organizations like the Endometriosis Network Canada to help those with endometriosis find support and find a list of health-care providers able to treat the condition.
She says it is possible to treat the condition medically without surgery but that the key is catching it early.
In recent years, Kroft has seen wait times for all surgeries grow because of the shutdowns of surgeries during the pandemic.
“We already had wait times for surgery in our publicly funded health-care system, and those wait times grew even longer because of those closures,” she says.
The issue is made worse by the fact that not every gynecologist has the training to treat the condition.
“There is a wide variety of complexity for surgery for endometriosis, so some patients with more simpler cases can be managed by general gynecologists. However, patients with more advanced severe endometrium often need an endometriosis subspecialist, and those surgeons have longer wait times and are harder to get into initially,” Kroft notes.
For Rodriguez, until things change in the Canadian medical system, she says women need to keep pushing for their concerns to be taken seriously and not doubt themselves.
“You have to be your own strongest advocate and don’t allow the medical industry or people in your lives to gaslight you. And to think that thinking that you’re crazy because you’re not, and your pain is real. And don’t let anyone tell you differently,” she says.
