All About Endometriosis with guest Dr. Mathew Leonardi

Welcome to The Egg Whisperer Show. Today’s guest is Dr. Mathew Leonardi. He is going to talk to us all about endometriosis. He’s one of the world’s experts in this topic. He’s an advanced gynecological surgeon and sonologist, at McMaster University Medical Center in Hamilton, Canada. He is also simultaneously finishing his PhD at the University of Sydney, focusing on the utility of ultrasound and the diagnosis and surgical management of endometriosis.

Mathew is a nationally and internationally recognized leader in gynecological surgery and ultrasound and an avid researcher. He was appointed as the World Endometriosis Society Junior Ambassador in January of 2020 and a founding member of The Next Generation Committee of the International Society of Ultrasound and OBGYN. He is currently contributing to the Clinical Practice Guidelines on Endometriosis for the Society of OBGYNs of Canada. And, he’s an associate editor for Reproduction & Fertility, and on the editorial board of The Journal of Minimally Invasive Gynecology.

Dr. Aimee: Thank you for joining me, Dr. Leonardi.

Dr. Mathew Leonardi: Thank you so much, Aimee, The Egg Whisperer. It’s a great honor to be here. You’re very complimentary, calling me a world expert. Thank you.

Dr. Aimee: I know you’re very passionate about what you do. I want your message about the importance of testing and getting the right answers when it comes to endometriosis sooner than later out there for the world. That’s what we’re going to talk about today, the latest and greatest about endometriosis, and there is no one better than you.

You self-identify as an endometriosis expert. Can you explain to us what that is so that the audience has an understanding of what we’re talking about before we get into the rest of your amazing work?

Dr. Mathew Leonardi: A lot of people who are listening to your show probably already understand the complexities around endometriosis. Endometriosis is a nonmalignant or benign gynecologic condition that is chronic in nature. It affects probably up to 10% of people who are born with female reproductive organs, so it’s a really common condition, and it’s really complicated. It’s kind of like gynecologic cancer, but it’s not cancer.

It has a massive effect on people’s lives to the point that their personal lives, their professional lives, their fertility goals are compromised. It is a condition, it’s a disease that requires a really large amount of knowledge and skill clinically, imaging-based, surgically, and because we also don’t know very much about it, academically. It really is a disease we still have so many mysteries about.

I self-define as an endometriosis expert. There are a number of people around the world that also self-define as that. There’s no real credentialing to become an endometriosis expert. Really, it translates to you have an immense curiosity about the condition and an immense interest in helping people with it.

Dr. Aimee: What led you to focus your work and research on the world of infertility?

Dr. Mathew Leonardi: Essentially, when I was a resident at the University of Toronto, I fell in love with gynecology and I fell in love with ultrasound. Those two worlds did not really collide very well. Of course, in the realm of obstetrics or in the realm of REI and infertility there is a lot more integration of ultrasound, but general gynecology doesn’t really implement it.

So, I tried to bridge those two worlds. I did international electives in the United Kingdom and in Australia, and I was exposed to people who bridged this world around gynecology, broadly speaking, and ultrasound. This is where I learned about the concept of a sonologist. I fell in love with this world of the two and I decided to go abroad to Australia to do training.

Of course, my main passion is in endometriosis, but endometriosis is a very common cause of infertility, so there is a very close draw between the two. Now, I’m not a fertility specialist, I don’t do assisted reproductive technologies myself, but I participate significantly in the work-up of those individuals and sometimes in the surgical treatment of those individuals who are seeking fertility as well. That’s where I sort of entered this world.

Dr. Aimee: I feel like more OBGYNs need to hear how endometriosis can be and will be for a lot of people a fertility-threatening condition. That’s why what you’re doing is so important. I’m glad that we’re able to bring attention to it today.

Much of your work, as you’ve described, involves both sonography and surgery to help patients with endometriosis. Your approach is unique. I hope that it’s going to become commonplace, but right now it is unique in our field. How do you use the two technologies together?

Dr. Mathew Leonardi: It’s unique in North America. It’s not as unique in Europe, I would say. There are many different residency programs and consultants who practice in the realm of OBGYN around the world who actually do integrate ultrasound into their clinical practice. They have machines in their office, they see their patients, they scan their own patients. They don’t have that same radiology sphere for ultrasound that we do in North America.

In Canada and the United States, there is quite a large divide between gynecologists and radiologists, and there’s not really that much dialogue between the two. Truthfully, there have been lots of deficiencies in our own imaging potential for gynecologic conditions and endometriosis in North America.

As a sonologist, I both perform and interpret ultrasound for my patients, those who have pelvic pain, infertility, or bleeding, other gynecologic entities. One of the unique things is I give them the immediate feedback. I turn the screen to the patient, and I point at the disease entities or their structures when they’re normal and I tell them, they’re involved in the ultrasound. After they are all cleaned up and dressed, we sit down and we combine the clinical information that I’ve acquired from them, the physical examination, and the ultrasound information, and we come up with a personalized approach for that patient — every person is different — and it’s on the spot.

So, I agree, I want this to become the new standard in North America. It is going to take a long time for that to happen, but there are certain qualities of ultrasound that will allow it to happen. Ultrasound machines are getting smaller, they’re getting more affordable. The learning curve for an OBGYN to learn gynecologic ultrasound is actually not that long because they understand the patients, they understand the pathology, and they understand things in different ways because they operate as well.

Radiologists, as great as they are, broadly speaking, don’t operate on these patients, they don’t have the same intricate knowledge of the pelvis anatomy and the pathology that we do as OBGYNs. So, that learning curve is relatively short.

One thing that I’m actively doing is integrating ultrasound into the education for the residents at McMaster University. I’m also speaking across the country as best as possible to encourage trainees to be open-minded to learning about ultrasound and starting to consider integrating it. There are barriers, but we just have to tear those down.

Dr. Aimee: Absolutely. We should start a hashtag movement #PelvicUltrasoundPlease. I consider it, and I probably do about 30 scans a day. The thought that a patient can come to me after trying for seven years for me to find an endometrioma, that just shouldn’t happen. She should have known with all those pelvic exams and pap smear appointments that she had years ago.

Dr. Mathew Leonardi: Totally.

Dr. Aimee: You have a famous quote that I love, and I’m going to share it with everybody. “Surgeons should not be surprised by what they find in surgery. Patients should not be surprised to learn of surgical findings when they awake.”

How can staying open to findings and remaining curious change the experience for doctors and for patients?

Dr. Mathew Leonardi: This has definitely become one of my most used sayings. It has because as a gynecologic sonologist and surgeon, I have really understood that I can reduce my intraoperative surprises, really. What I anticipate getting into, I get into. What I tell the patients pre-operatively and post-operatively matches.

Of course, nothing is perfect in medicine, so occasionally there are some minor surprises, minor details. Most of the time, what I tell a patient we’re going to do, we do. Therefore, they truly do make informed consent around their surgical procedure that they’re undergoing.

You could even take one step back and say that information that’s provided to the patient before surgery might even allow them to make other decisions that are not surgically related. Maybe decisions around their fertility plan or their medical management. Not everybody has surgery.

This concept, to me, is clear because I do ultrasound. Probably to you as well, as somebody who has eyes on the end of the probe. For gynecologists who don’t do ultrasound, they again have been exposed to some inadequacies in gynecologic imaging, and they are aware that surprises are a reality in gynecology.

One of the things that I recall from my training, and it still comes up from time to time, is how difficult it is to decide how long you’re going to book a surgery for in gynecology, particularly when it is endometriosis related. It’s like a guessing game. You might think it’s going to be complex, and it’s not. You might think it’s going to be simple, and they have bowel endo. With the combination, you have a better ability to do that.

I think people who are working in this sphere would like this idea. They don’t want to be surprised. I think the concept just has to be sold to them that it is possible. Certainly, from a patient standpoint, there’s no convincing me that a patient wants to go in, not know what’s going on, and then be woken up.

In particular, when it comes to endo and severe endo, there is no reason, in my opinion, that people should be having a laparoscopy and advanced disease is found at that time anymore. With advanced imaging principles, with ultrasound or MRI, we can absolutely and very reliably identify deep endometriosis, severe adhesions in the cul-de-sac, other forms of advanced disease where the ovaries are morbidly adherent to the pelvic sidewalls. These should not be surprises anymore. When they’re surprises, this really means that the gynecologist has not adopted those advanced imaging principles yet. We have to get there.

Dr. Aimee: I love it. How does surgery help patients with endometriosis?

Dr. Mathew Leonardi: That’s a great question. Surgery, of course, is thought to be used as a therapy to treat the disease, but right now surgery is also a diagnostic tool for a lot of people because they don’t have access to good quality imaging. One of the things that I talk about a lot and I teach my trainees and my patients is that it’s actually quite difficult to discern what the therapeutic value of a surgery is when the diagnosis is tied to the actual intervention, the excision, the ablation, whatever the actual surgery is.

Just today, I saw a post on one of the big Facebook groups about a patient who underwent surgery for endometriosis. She said in this post, “I have never been happier.” She received a diagnosis. Post-operatively, she woke up and she was told she had endo. To me, this is quite strange. It’s not strange in that people are happy to receive an understanding of why they have suffered. Nobody wants endometriosis, though, so it’s not a reason to be happy. But this patient should have not needed surgery to feel that validation, that should have come long before. This patient who woke up and said, “I’ve never felt happier,” how are we actually going to assess the true effect of that surgery on her symptoms when it’s intrinsically tied to the diagnosis?

For me, I still believe that surgery is effective to help people with pain, absolutely. Fertility is definitely a little bit more controversial, but in my heart of hearts, I do feel that surgery is effective for treating patients who have infertility associated with endometriosis. The literature in that regard is a lot more controversial.

Dr. Aimee: I agree with you. I think that there certainly are patients that are helped by surgery. I’ve had patients who have done transfers and they don’t work, then we pivot and we do a laparoscopy for endometriosis that we think that she has, and then she gets pregnant after that laparoscopy. But it is controversial, you’re definitely right.

I love bringing new technologies to my practice. That’s kind of why I do this show and I bring guests like you on. I’ve been following you on Twitter, and I just love all of the images that you share to teach everyone out there who is also following you. I would love for you to talk about what your novel technique is. I know you have a similar interest in disseminating novel techniques beyond academic centers, so can you talk a little bit about your new ultrasound technique that might be useful in those with infertility?

Dr. Mathew Leonardi: Yes, absolutely. In my time in Sydney, when I was working in the private ultrasound world for Professor George Condous, we did a lot of sonohysterographies and a lot of tubal patency assessments. When the fallopian tubes were determined to be patent, the fluid of course travels into the pelvis, and it started to settle into the cul-de-sac, into that rectouterine pouch area.

When it was there, I started to explore that area. I started to look at the peritoneum, the lining of the pelvis, I started to look at the uterosacral ligaments, I started to look at the dynamic nature of the bowel in that space, and I started to see these very minor features that were irregular. I thought, “What are these things that I’m actually seeing here? Is this endo? Is this adhesions? Is this previous pelvic inflammatory disease?” We didn’t really know.

When you come back to the population that this test is being done on, it was infertile patients. We know that patients with infertility have a very high prevalence of endometriosis, potentially up to 50%. Superficial endometriosis is the most common subtype of endo, so it’s these patients who I believe are left with this classification of “unexplained infertility.”

In this patient population, I started to look at that space. Eventually, what we realized is we could see superficial endometriosis. Direct visualization of superficial endometriosis on ultrasound had not ever really been described. Soft markers for it have been, which means features that could suggest endometriosis but not actually directly visualizing it.

Professor Condous and I and our team in Sydney devised this concept called Saline Infusion SonoPODography. For those in North America who are not familiar with the POD, the Pouch of Douglas, it’s the other word for cul-de-sac or rectouterine pouch that’s used in certain places in the world. SonoPODography means putting fluid, saline, into the Pouch of Douglas and then looking on ultrasound. We have done a prospective study where we enrolled patients who were undergoing surgery for endometriosis, did this test on them and determined that we can with a relatively high accuracy see superficial endometriosis, about 80% was our accuracy. It was amazing, because superficial endometriosis had never been seen before on ultrasound.

For these patients, we’re starting to think we can introduce this clinically. The perfect population for this is the infertility population, for two reasons. One, high prevalence of disease. Two, they’re already undergoing sonohysterography and tubal patency tests. All you have to do is after the tubes are assessed, change the direction of the probe and look into the Pouch of Douglas. So, it’s really relevant for this population.

One of the things that I’m going to be doing now that I’m back in McMaster is that prospective study in this specific population.

Dr. Aimee: I’m just now thinking I can have my patients get their HSG done at the imaging center and then pop over here afterward for their ultrasound and there should be fluid there for me and I’ll be trying the same thing.

Then I also thought I’ve already titled your new book Pelvic Ultrasound Please by Dr. Mathew Leonardi.

Dr. Mathew Leonardi: That’s excellent. Thank you, Aimee.

Dr. Aimee: I’ve heard you also talk about the microbiome. It’s a very hot topic right now, so I’d love if you could talk a little bit about how microbiomes play into infertility.

Dr. Mathew Leonardi: For sure. The reason that I got into the microbiome was based on my interest in diagnosing the condition of endometriosis. We thought that there might be a specific signature of the microbiome that patients with endometriosis have compared to those without endometriosis, so we could look for the microbiome features on a lab test and identify who has endo and who doesn’t based on the patterns.

For those of you that are listening today, there’s a couple of things that are really important to know. The first thing is that there is a microbiome in the reproductive tract. Most people think about the microbiome as gastrointestinal and that’s the extent of it, but there is a microbiome of the reproductive tract, and there are people in the world that are working in this vicinity doing great work identifying the normal microbiome.

If you think about it, the vagina is connected to the outside world, the vagina is connected to the cervix, which is a channel to the uterus, the uterus is a channel to the pelvis, which is the fallopian tubes, so technically there is a direct link between the outside world and a pelvis that has open fallopian tubes. So, there is a microbiome, that’s the first thing.

The second thing is that there is a relationship between the microbiome and estrogen. Dysbiosis or an abnormal microbiome may change estrogen levels in patients. Endometriosis is an estrogen-dependent condition, so that might have an implication on the disease development.

There are lots of theories around why endometriosis exists. There’s not enough time to get into all of them, but certainly there are immune factors at play. Is the microbiome affecting those immune factors either directly or through the estrogen link? We don’t exactly know. This territory of microbiome and endometriosis or microbiome and fertility or infertility unrelated to endo is going to be a space that people need to watch in the coming years, I think.

The study that we did was firstly a review study. This is where we did identify, based on the literature published, that there are a few specific bugs that are off, that are different in patients with endo. For those that are keen, please do have a look at the article, it’s called Endometriosis and the Microbiome: A Systematic Review. We’re also working in this space academically, doing a study on it as well, but that’s to be seen.

Dr. Aimee: We’ll make sure to have a link to the article that will go with this podcast. For those who are listening on iTunes, just go to the comments and click on the article to read it there.

What are some of the biomarkers we might look for to diagnose or monitor disease?

Dr. Mathew Leonardi: Great question. The answer is, unfortunately, right now, none.

A lot of people know that there is some connection between endometriosis and CA-125. CA-125 is a blood biomarker that is more so related to ovarian cancer than endometriosis. But CA-125 can be elevated in people with endo, people with fibroids, people with other pelvic pathology, so it’s not a very specific test for endometriosis. Personally, I do think that it generally has more harm than good, because when people have an endometrioma and a marginally elevated CA-125, people start to get a little bit anxious.

This again comes back to the limited ability of us to discern things on ultrasound, or at least currently where things are at. If you have uncertainty on your ultrasound report, you have an elevated CA-125 and an ovarian mass, you’re going to be worried about a cancer. Then we start to refer people to the gyne-oncologist and these patients go down a path that’s very anxiety-provoking, and often for nothing.

So, I really don’t encourage people to use CA-125, but I think it can still be used in a research setting to try to identify patients who have the superficial endometriosis subtype.

Personally, I think biomarkers are not going to be so helpful in diagnosing deep endometriosis or ovarian, because ultrasound can do that reliably. Really, what we need to do is introduce education and teaching for people to start doing those tests. Biomarkers are going to be useful for those who do not have very easily visible disease on scan but have symptoms.

CA-125 could be a potential player. There’s another one, VEGF, that has some hope. That’s because endometriosis is connected to the development of new blood supply called angiogenesis, and VEGF has a connection to that process. So, there are a couple that are hopeful, but none that are ready for primetime.

Dr. Aimee: What about genetic tests, are there any genes that you’ve seen that could tell someone if they have an inherited an increased susceptibility to endometriosis?

Dr. Mathew Leonardi: It’s a good question. We do know that there seems to be a predisposition to endometriosis when female relatives have had it, but as far as I’m aware, there is no genetic testing as of yet that’s going to tell us that.

One of the areas that I’m working on with my colleagues, Dr. Jocelyn Wessels and Dr. Lauren Foster, is to look at the microarrays of patients’ inflammatory markers. Certain inflammatory markers are going to be elevated in patients with endometriosis. So, we’re getting closer to the basic science, smaller nitty-gritty work. It’s really not my specific area, these are my colleagues that are leading the way on that and I’m contributing. We’re starting to look at the smaller and the smaller and the smaller to try to understand.

It could be in the future something that’s possible, but right now nothing that I’m aware of.

Dr. Aimee: I agree. There have been companies out there that have proposed gene tests for endometriosis, but it doesn’t seem to be ready for primetime quite yet.

I understand you’re also researching other alternative management strategies, like physiotherapy, medical cannabis, and psychotherapy. How do they work with patient care?

Dr. Mathew Leonardi: Yes. This is really the new world for me. When you go to med school, you don’t learn very much about complementary and alternative management strategies. I think we had one lecture. Then you go to residency, and you still don’t really learn very much. I was introduced of pelvic floor physiotherapy I think as a fifth-year resident. At that point, it still seemed extremely fringe. Then I went and did my fellowship and really started to see the utility of that physiotherapy in patients with endo.

My relationship that I have developed with Dr. Mike Armour, who is essentially a quite holistic health specialist in Sydney, he has opened my mind to the utility of things that are not traditional, not what our med schools and residencies teach us. He does acupuncture for patients, he has taught me a lot about cannabis, so it really opened my mind.

Now, in real life, in my clinical practice, I refer almost every one of my endometriosis patients who has pelvic pain to a pelvic floor physiotherapist. The pelvic floor muscles are intrinsically connected to the endometriosis process, they become a huge source of the pain. We cannot look at endometriosis exclusively as a lesion, a spot of endo. It’s bigger than that. We have to treat the lesion, we have to excise it or treat it medically, or both, and we have to integrate the allied health professionals, so physiotherapy is a big piece.

I integrate diet into my care, because lots of our patients have gastrointestinal symptoms, bloating, bowel movements that are abnormal, they have pain with bowel movements. Dietary modifications are very helpful.

More and more that network of allied health professionals is growing. For me, at the end of the day, if a patient finds something that works well in a multimodal approach, that’s amazing. We know how hard endometriosis is to treat, so if we can find more things that work, wonderful. Nothing is ever going to take away from us as traditional western medicine doctors, but we need to be more open-minded to this.

Right now, the work that is being done academically is more in the realm of understanding what people are using, how they’re using it, why they’re using it, and eventually we’ll be able to start to understand the true efficacy of the various interventions by doing randomized control trials or high-quality cohort studies. But right now, nothing like that is actually happening at my center.

Dr. Aimee: I like that you used the word fringe. I had a patient the other day, I was recommending something along the lines of what you said, and she said, “That just sounds weird.” I’m like okay, I’m the weird fertility doctor, that’s fine, I’ll take it.

Dr. Mathew Leonardi: Weird to me translates to forward-thinking, outside the box, trying to find solutions that maybe have not really been considered. So, that’s a compliment.

Dr. Aimee: Thank you. Is there anything else that you’d like to add to today’s discussion for our listeners?

Dr. Mathew Leonardi: One of the things that I really try to encourage my patients is to advocate for themselves. Endometriosis and, in general, gynecological conditions are not really that well researched, they’re not really that well supported with resources in clinical settings, gynecology departments are never as big or well-funded as cancer departments. We need to speak up as a group of people who are either the patients or who are the providers.

Advocacy is really important. I’ve seen through social media that the patient can really drive forward the agenda by being a voice. So, I really encourage people to be an advocate for themselves in their own clinical care, but outside of that as well. Be an endo warrior, do participate in any research opportunities you can, use your voice to make change. That’s how I think together we’ll be able to continue to push forward this field of medicine which really does need a lot of pushing forward.

Dr. Aimee: I agree. Thank you for that. Where can people find you and your work?

Dr. Mathew Leonardi: Lots of places. I have a website, MathewLeonardi.com, so you can check me out there. I’m also on Instagram, @DrMathewLeonardi, on Twitter @MathewLeonardi, Facebook, and I have recently started to put up some of my talks on YouTube. If you pop my name into the search bar on YouTube, you’ll be able to find some of my educational material there, again, really trying to give people in the lay population the knowledge, the tools, so that they can start to advocate for themselves with their own doctors wherever they are in the world.

Dr. Aimee: Thank you for joining us. And thank you for all of you who are listening. We hope to have you back on The Egg Whisperer Show, Dr. Leonardi, talking about endometriosis and all of your research in the near future. Thank you for joining us.

Dr. Mathew Leonardi: Thanks so much. Pleasure to be here.

Catch more of me and topics like this through The Egg Whisperer Show. Episodes are live-streamed on YouTube, Facebook, Twitter, IGTV and Apple Podcasts . Sign up to get my newsletter. Tune in to The Egg Whisperer Show on YouTube. and Sign up for The Egg Whisperer School.