Health Committee on Nov. 29th, 2023

[Marcus Powlowski, Liberal, Thunder Bay—Rainy River, ON]

Thanks for getting a whole stream of doctors here. For many years, I was an emergency doctor, and I worked in developing countries. I'm certain I have a certain bias about this.

As I recall, in medical school, we had a one-hour lecture on endometriosis. It seems rather bizarre that, now that I'm in Parliament, I'm hearing more about endometriosis than I ever did in medical school.

[Voices]

Oh, oh!

[Marcus Powlowski, Liberal, Thunder Bay—Rainy River, ON]

In my mind, I see endometriosis as a bit of a diagnostic quagmire. When somebody who has chronic pelvic pain and dysmenorrhea comes in, there's a workup and you do an ultrasound. Already, as you said, this can be a problem, because it depends on who's doing the ultrasound or the MRI. Even that may not be reliable. However, say you do an ultrasound, MRI or laparoscopy, and they have endometriosis. How do you know that's the cause of the pain? You've told us some people can have quite severe endometriosis and have no pain at all.

Again, I'm admitting my bias from the population I used to see. It seems to me it wasn't that unusual to see a woman with chronic pelvic pain who'd been diagnosed as having endometriosis or an irritable bowel, or they were NYD. They'd seen a gynecologist. They'd had an ablation and nothing changed. You wonder whether it was endometriosis at all.

Were those people under-treated? Is it being over-diagnosed when you have ultrasonic or laparoscopic evidence of endometriosis, but in fact that isn't the cause of pain? Can you talk a bit about diagnostic ability, and the false positives and negatives?

[Dr. Andrew Zakhari]

Thank you for the question. Maybe I'll jump in here.

It speaks to the complexity of endometriosis. As was mentioned before, a lot of times it starts off with endometriosis and painful periods. If left untreated for a long time, that will evolve into pain that's not just during the period, but also between periods. Now suddenly you've gone from having an endometriosis-only patient to having an endometriosis and chronic pelvic pain patient. The two are related and similar, but they're not identical.

That's why treating endometriosis is so difficult. At some point you can't just be treating the endometriosis; you have to treat the chronic pain as well, which then means you need a multidisciplinary team. You need to set up with probably physiotherapy, which can help manage the pain. You need a chronic pain centre. You need a multi-faceted approach using all sorts of different techniques to manage pain, whether it be cannabis, acetaminophen or anti-inflammatories and the whole gamut, while trying to avoid narcotics and their complications.

A lot of times, when we're consulting with patients for surgery, we'll tell them that we can guarantee that we can remove the endometriosis, check their tubes, take out the cysts and do that sort of thing. We can never really guarantee that we can cure the pain.

Often we will improve the pain. Sometimes we'll cure the pain, but sometimes we don't. We set expectations very clearly with patients at the outset. Often we're very happy with the outcomes, but they're not always perfect.

[Marcus Powlowski, Liberal, Thunder Bay—Rainy River, ON]

If you're saying it starts off with endometriosis and then can become chronic pelvic pain, how do you know that's the case? How do you know it wasn't endometriosis to begin with and it just happened to be incidental endometriosis?

[Dr. Andrew Zakhari]

It's sort of a chicken and egg situation. Once you're faced with a patient who has both, it's hard to say whether this is a chronic pain patient who developed endometriosis later in life or an endometriosis patient who got diagnosed and treated so late in the process that it developed into chronic pelvic pain.

[Marcus Powlowski, Liberal, Thunder Bay—Rainy River, ON]

I'll refer to our chair. I spoke to him. He is a former litigation lawyer. We talked about the diagnosis of endometriosis. Apparently he was involved in a few cases where a diagnosis of endometriosis was made and later it turned out that there was a more sinister cause of the pain.

How much of a problem is it that, where pain gets attributed to endometriosis when perhaps at one point they've had an ultrasound or a laparoscopy showing that they have endometriosis. Then four or five years later, they're having pain that's attributed to endometriosis and it turns out to be something else?

[Dr. Andrew Zakhari]

I'd say that the reverse situation is probably much more common, where you have patients whose pain is attributed to normal menstrual pain when really it's missed endometriosis. I think that's much more common than having someone with endometriosis who has a secondary pain diagnosis.

[The Chair, Liberal, Sean Casey]

Thank you, Dr. Powlowski.

Ms. Larouche, you have the floor for two and a half minutes.

[Andréanne Larouche, Bloc, Shefford, QC]

I don't know if I will have another turn to speak, Mr. Chair, so I will be as quick as possible.

This evening, a number of witnesses have talked about a national endometriosis strategy. Australia, France, Ireland, Wales and Scotland were mentioned as examples. Yet Canada does not have the same political framework as those countries, specifically in terms of the division of powers. For example, Quebec is responsible for the recognition of credentials and the management of health systems. Ottawa is responsible for procurement. The federal government can also invest in health care research.

Like other witnesses, Dr. Mattatall talked about funding. In Canada, the funding comes from health transfers which, since the 1990s, have been gutted.

How could we benefit from the experience of other countries that have that kind of national strategy, while working within our framework, which can be different?

[Dr. Catherine Allaire]

Will my answer be interpreted into English?

[Andréanne Larouche, Bloc, Shefford, QC]

Dr. Allaire, you talked about what happened in B.C. and the fact that certain provinces have already launched some interesting initiatives.

Please go ahead, if you wish.

[Dr. Catherine Allaire]

As you said, not all countries can be directly compared to Canada, of course.

That said, we looked carefully at the program in Australia. We even met some people from Australia who came to spend some time with us and talked with them a lot. Their political system is quite similar to ours, including federal health transfers.

So I think if we were to look at a program more closely, it should be theirs. I know the health sector is very complex in Canada, but we can still draw fairly strong parallels between the two countries' systems.

[The Chair, Liberal, Sean Casey]

Thank you, Ms. Larouche.

Next is Ms. Mathyssen, please, for two and a half minutes.

[Lindsay Mathyssen, NDP, London—Fanshawe, ON]

We haven't spoken much.... I'll leave it to whoever wants to address it, but we haven't really referred to multi-organ endometriosis. I wanted to talk to and hear from the witnesses about the dangers, how that goes undiagnosed, of course, and all the things related to that.

[Dr. Dong Bach Nguyen]

Thank you for your question.

As you know, when endometriosis becomes severe, it can start invading the adjacent organs, whether it's the bladder, the bowel, the diaphragm or even the pelvic nerves. The symptoms the patients will present are slightly different, depending on the organ that is injured. Surgery becomes that much more complex, because if it requires that we remove part of ureter or the bladder, then urologists have to be involved. If it involves removing part of the bowel, then the bowel surgeon needs to be involved. When people have recurrent pneumothoraces—air that goes inside the chest because of endometriosis going into the diaphragm and the lung—then you need a thoracic surgeon involved as well.

This is why there's the need for these centres that have all of these people under their umbrella, which we call multidisciplinary care, to be able to tackle this disease.

[Lindsay Mathyssen, NDP, London—Fanshawe, ON]

That's a huge and significant cost if we don't address the situation when they—

[Dr. Dong Bach Nguyen]

Absolutely, and countless times we have had referrals of patients who have undergone resection of the bowel nodule, thinking it was cancer and finding out it was endometriosis, and they have been sent to us to treat.

Again, it's taking care of something that was treated differently, because treating cancer is not the same as treating endometriosis. You need to have margins. You remove a much larger part of the bowel, and the symptoms' improvement is not that great if you removed that nodule but left all of the endometriosis behind.

This is where awareness coming in is important, but also, if we have better diagnosis and we're able to realize that the endometriosis—the bowel nodule—comes from there, we're able to better treat the patient.

[The Chair, Liberal, Sean Casey]

You have 30 seconds, if you want them.

[Lindsay Mathyssen, NDP, London—Fanshawe, ON]

I know you did additional studies in Europe. What were your experiences there and how do they compare with Canada? What can Canada learn?

I'm not sure if you can answer all of that in the 15 seconds you have left.

[Dr. Dong Bach Nguyen]

Thanks.

I trained in a centre that did a few hundred bowel surgeries a year. In France, care has been very centralized toward centres that they call “of excellence”, where they have all these multidisciplinary approaches. What's really beautiful about the process is that there's a pathway for every patient. When they come in, they expect to have such imaging, they expect to see the surgeon and they have the fertility specialist right next door. For the surgery, everything gets combined and they're all in the same vicinity.

This is possible in academic centres here in Canada as well. It's a model that we can definitely reproduce—and we have with the opening of our centre, so we're very happy about that. We're not the only ones in Canada; many people here have done an excellent job as well.

I think all of these are attainable goals as long as the government sees the importance of investing in this.

We alluded to the provincial and federal governments having different roles in all of this, but I think if the provincial sees the importance, the province will necessarily follow.

[The Chair, Liberal, Sean Casey]

Thank you, Dr. Nguyen.

Next is Ms. Vecchio, please, for five minutes.

[Karen Vecchio, Conservative, Elgin—Middlesex—London, ON]

Thank you very much. I just want to build on from where Lindsay started.

Thank you very much to our witnesses for all of the incredible work you have done.

Dr. Nguyen, looking at this, you are also a co-author of something called “Bowel surgery for endometriosis”. I assume this is where we start talking about the adjacent organs that are being impacted.

From what we've heard, the delay in diagnosis can create a lot of other issues. If you could provide for me some timelines.... We started this conversation an hour and a half ago. It's six months to be seen and a year for surgery. There are all of these things and the time frame is very difficult.

When would we start seeing the adjacent organs been impacted by endometriosis? When we talk of one in 10 women having endometriosis, what are those statistics when it comes to secondary organs?

[Dr. Dong Bach Nguyen]

That's a very good question.

It's hard to know, because many women with endometriosis are very asymptomatic. That even means that people who have horrible disease—when we enter the pelvis, they have stage four endometriosis—may be asymptomatic. They may have no symptoms.

That being said, if we look at studies, probably 15% to 20% of endometriosis cases are more severe, so they're stage three to four. Among those people, it's hard to say when they first developed the severity of the disease, because often, we catch it when it's already severe or when it's superficial. We don't have enough data to follow and see what the timeline is that it takes for someone with superficial endometriosis to develop something more severe.

Every person is different. Endometriosis in some women recurs very quickly after surgery, versus other people, who don't see it recur. I think all of this points toward the need to have more funding for research so that we can elucidate these answers and give better care for patients.

[Karen Vecchio, Conservative, Elgin—Middlesex—London, ON]

We've all spoken a lot about pelvic pain today. I'm sure that many of us women in this room have had what we would see as cramps, muscular cramps.

When you talk about this pelvic pain, is it similar to the cramping that one would get during a period or the severity of that type of cramping?

How would someone know the difference between pelvic pain and five-day pain during their period?