Welcome back to Fact Friday, our weekly look at new research on endometriosis and adenomyosis, broken down into plain language. This week we’re looking at a study that didn’t come from a lab bench or a clinical trial of a new drug. It came from simply asking people with endometriosis about their own experience of trying to get care. The answer, for hundreds of people, was that they left their own country to get it.

The study itself was carried out in Canada, so some of the specific numbers (wait times, costs, destinations) reflect the Canadian healthcare system rather than the NHS. But the pattern it uncovers (long delays, feeling dismissed, and eventually paying out of pocket for surgery with someone who specialises in the disease) will land as very familiar reading for the UK endometriosis community. UK charities and campaigns have been documenting exactly this picture closer to home: Endometriosis UK and Cysters’ most recent survey (over 3,000 responses from people diagnosed since 2015) found the average time to diagnosis in the UK has risen to around 9 years and 4 months, up from roughly 8 years in 2020, with Scotland at 10 years 2 months, Northern Ireland at 9 years 10 months, and Wales at 9 years 11 months. A separate UK survey run as part of National World’s “Endo the Battle” campaign (around 400 responses) found patients going private or travelling abroad because of lengthy waiting lists, with one patient estimating the total cost to their family at £400,000, and others reporting waits of 12–18 months for an MRI or two and a half years just for an ultrasound. That’s exactly why this week’s Canadian study is such a useful read for a UK audience: it puts hard numbers on a pattern many of you are already living through, and shows what happens when people in a similarly stretched healthcare system go looking for care elsewhere.

Endometriosis is a whole-body inflammatory condition in which tissue similar to the lining of the uterus (and the inflammatory processes that go with it) is found growing in other parts of the body, most often in and around the pelvis. It is not simply a “women’s reproductive” complaint confined to one organ: research increasingly shows it involves the immune system, the nervous system, and widespread inflammation throughout the body, and that the disease can generate its own oestrogen locally in its lesions rather than simply being switched on by circulating hormone levels. Adenomyosis, a related condition, involves similar tissue growing within the muscular wall of the uterus itself. Both can cause severe pain, heavy bleeding, fatigue, bowel and bladder symptoms, and a significant impact on daily life and fertility.

A team of researchers and clinicians, including representatives from The Endometriosis Network Canada, a patient advocacy organisation, set out to understand a specific and growing phenomenon: Canadians with suspected or confirmed endometriosis travelling outside Canada to get surgical care. This kind of travel for medical treatment is often called medical tourism, though for many of the people in this study, it was less a “tour” and more a last resort.

The researchers built an anonymous online survey and shared it through social media, specifically targeting adults (18 years and older) who were Canadian citizens or permanent residents, had suspected and/or confirmed endometriosis, and had either considered or actually obtained care for it outside Canada. The survey asked about demographics, their experiences with the Canadian healthcare system, what pushed them to look abroad, where they went, what it cost, and how satisfied they were with the care they received.

Out of 559 people who responded, 348 responses met the study’s criteria and were included in the final analysis. This makes it what researchers call a descriptive study: it doesn’t test a new treatment or compare groups scientifically; instead, it carefully documents and quantifies a real pattern happening in a community, using the direct accounts of the people living it.

The picture that emerged was strikingly consistent. Most respondents were aged between 25 and 44 (83.6%), and the group skewed toward people with higher levels of education and higher household incomes: a third reported household incomes of $150,000 CAD or more. That detail matters, and we’ll come back to it in the limitations section below, because it tells us something important about who can realistically consider this option and who might be left without it.

The headline numbers were these:

• 70.7% of respondents sought surgical endometriosis care abroad after being dissatisfied or very dissatisfied with the care they had received in Canada (a dissatisfaction reported by 80.5% of all respondents overall).
• 96 respondents (27.6%) went on to actually receive surgical care abroad, most commonly travelling to Romania (35.4% of those who went abroad) and the United States (33.3%).
• The two biggest reasons people gave for seeking surgery outside Canada were long wait times (cited by 82.3%) and a belief that Canadian surgeons lacked sufficient expertise in treating endometriosis, particularly more complex or deeply infiltrating disease (cited by 69.8%).
• Among those who did travel for surgery, 89.6% said they were satisfied or very satisfied with the care they received abroad.
• The average cost reported was $24,395.55 CAD in direct costs (things like the surgery itself, travel, and accommodation) plus a further $7,211.11 CAD in indirect costs (such as time off work) per respondent, a substantial sum for anyone to find, let alone while also managing a chronic illness.

In other words: this wasn’t a small or fringe group of people making an impulsive decision. It was a large, fairly consistent pattern of people who had tried to get help at home, felt that help wasn’t adequate or wasn’t coming quickly enough, and who then had to find significant sums of money to get surgery elsewhere, and who, once they did, largely felt it had been worth it.

If you have endometriosis or adenomyosis, or you’re a carer, partner, or family member of someone who does, this study is likely to land as validation more than surprise. The diagnostic delay for endometriosis is already well documented internationally, often stretching to many years between symptoms starting and a confirmed diagnosis. This study adds a new layer to that picture: even after diagnosis (or strong suspicion), getting to the right kind of surgical care, from someone with real expertise in excising deeply infiltrating disease, can be its own long and expensive battle.

A few things stand out as genuinely useful to know:

You are not imagining the gap in expertise. Endometriosis surgery, especially for more advanced or deeply infiltrating disease, is a specialised skill. Not every general surgeon who operates on the pelvis has the specific training or caseload to perform complex excision surgery well, and the study suggests many patients have picked up on this (accurately or not) and gone looking for surgeons who focus specifically on this disease. If you’ve ever felt that you needed to specifically seek out an “endo specialist” rather than see whoever was available, this study backs up that instinct as a pattern shared by hundreds of others.

Wait times are a real and measurable barrier, not just frustration. It’s one thing to feel like you’re waiting too long for care; it’s another to see, in a formal study, that over 80% of people who looked abroad for surgery cited wait times as a major driver. This kind of evidence is exactly what patient advocacy groups can use when pushing for better-funded, faster-access specialist endometriosis care within the public system.

Satisfaction was high once specialist surgical care was received. This is an encouraging finding, even if the path to it was difficult: when people did get to a surgeon who specialised in treating their disease, the overwhelming majority felt it had been the right call. That’s a strong argument for investing in more local access to that same level of specialist care, so people don’t have to travel internationally and pay tens of thousands of dollars to get it.

This is a resourcing and access problem, not a personal failing. If you’ve ever felt guilty or alone for “shopping around” for a better opinion, pushing back on a diagnosis, or saving up for private or overseas care, this study is a reminder that this is a widely shared experience shaped by how health systems are currently set up, not a reflection of you being “too much” or “difficult.”

Here in the UK, this isn’t a hypothetical. UK patients are already living the Canadian findings in parallel: Endometriosis UK and Cysters’ latest figures put the average UK diagnosis time at roughly 9 years 4 months (and longer still in Scotland, Wales, Northern Ireland, and for people from ethnically diverse communities, where the average was 11 years). Separately, National World’s “Endo the Battle” survey documented UK patients going private or travelling abroad for care because of NHS waiting lists, with real reports of multi-month waits just for imaging and, in at least one case, a six-figure family cost. Seen alongside this week’s Canadian research, it’s hard not to conclude that this is an international pattern rooted in how specialist endometriosis services are resourced, wherever you happen to live.

As with any single piece of research, it’s worth being clear-eyed about what this study can and can’t tell us.

• It’s a snapshot of a self-selected group. The survey was shared on social media and completed anonymously by people who chose to respond, meaning it reflects the experiences of a particular, engaged slice of the community (likely people who were active on patient support networks and comfortable completing an online survey) rather than every Canadian with endometriosis.
• The sample skewed toward higher income and education levels. As the researchers’ own data shows, a third of respondents had household incomes of $150,000 CAD or more. Travelling abroad for surgery costing over $24,000 CAD simply isn’t an option for most people with endometriosis, which means this study likely captures only the visible tip of a much larger problem: the people who had the financial means to act on their dissatisfaction. Many more almost certainly share the same frustrations with wait times and access but have no realistic way to seek care elsewhere.
• It’s specific to the Canadian healthcare system, not the NHS. Wait times, costs, and the specific countries people travelled to (notably Romania and the United States, both known for specialist excision surgery centres) reflect Canada’s particular healthcare structure. The exact pound-for-pound figures won’t map directly onto the UK, though the broader pattern of limited access to specialist surgical expertise is one the NHS is clearly grappling with too, as the UK diagnosis-delay and “Endo the Battle” figures above show.
• It’s a descriptive, self-reported study. It documents what people experienced and believed, including their perception that Canadian surgeons “lacked sufficient expertise”: this is a reported belief, not an independently verified clinical audit of surgeon skill levels. That doesn’t make the finding unimportant (perception strongly shapes where people seek care and how the healthcare system is judged), but it’s a different kind of evidence than, say, a trial comparing surgical outcomes directly.

• In a Canadian study of 348 people with suspected or confirmed endometriosis, over 70% who sought care abroad did so after being dissatisfied with local care, and more than a quarter went on to actually have surgery overseas, mainly in Romania and the United States.
• The two biggest drivers were long wait times and a belief that local surgeons lacked sufficient expertise in treating endometriosis, especially more complex disease.
• Average costs were substantial (over $24,000 CAD in direct costs alone), meaning this option is realistically only available to people with significant financial resources, which likely means the true scale of unmet need is larger than this study alone can show.
• Nearly 90% of those who did travel for surgery were satisfied with the care they received, suggesting the issue is genuine access to specialist expertise, not an unreasonable expectation.
• If you’ve felt you had to search hard for the “right” surgeon or push back on the care you were offered, this research suggests that instinct is shared by a great many people in the endometriosis community, and reflects a systemic access issue rather than any failing on your part.
• UK-specific figures tell a parallel story: average diagnosis time is now around 9 years 4 months nationally (longer in Scotland, Wales, Northern Ireland, and for ethnically diverse communities), and separate reporting has documented UK patients going private or travelling abroad due to NHS waiting lists.

Research on endometriosis doesn’t always come from a laboratory. Sometimes the most useful evidence is simply a careful, numbers-backed account of what the community is already living through: in this case, hundreds of people going to considerable lengths, and considerable expense, to get surgical care they felt they couldn’t access at home. For a predominantly UK audience, this isn’t a story about “somewhere else.” It sits alongside UK charities’ own data on near-decade-long diagnosis waits and patients here paying privately or travelling abroad for the same reasons: long NHS waiting lists and a feeling that local expertise in complex endometriosis surgery is thin on the ground. It’s a sobering read in some ways, but also a validating one: if accessing timely, expert endometriosis care has felt like an uphill battle for you in the UK, this research shows clearly that you are far from alone, and gives patient advocates here solid evidence to keep pushing for better-funded specialist endometriosis centres closer to home.

As always, this is one study, looking primarily at one country’s experience, and it isn’t medical advice. If you’re weighing up your own options for endometriosis or adenomyosis care (whether that’s through your GP, an NHS specialist referral, or privately), please talk it through with your own healthcare provider, who can advise on what’s right for your specific situation.