Current Research on Endometriosis: An Interview with Dr. Jodie Avery

“I hope that we can help with the diagnosis and that we can help women in remote areas who don’t have access to surgeons and other professionals to have access to a better diagnosis.” 

Charlotte Weber: Could you please introduce yourself briefly?

Dr. Jodie Avery: Yes. My name is Dr. Jodie Avery and I’m a senior research fellow and program manager for the Imagendo project at the Robinson Research Institute in Adelaide at the University of Adelaide in South Australia. I’m an epidemiologist, but I also do a lot of clinical trial management, and I also do a lot of social research. That’s my background. 

Charlotte Weber: How did you come to do research on endometriosis and diagnostic imaging in particular? 

Dr. Jodie Avery: I have always been very interested in women’s health, especially polycystic ovary syndrome. I spent a lot of time at the Robinson Research Institute, which is an institute that looks at mothers and babies, but also women’s reproductive lives. I worked there for a long time trying to look at things like the quality of life of women with chronic diseases.

In 2019, I was asked to support Professor Louise Hull because she had this amazing idea to find a new non-invasive way to diagnose endometriosis. She came up with this idea after looking at 15,000 different studies as part of some Cochrane systematic reviews that she led on biomarkers for endometriosis. She looked at all these papers that looked at imaging for endometriosis to find the best technique. 

That was the basis for the first Cochrane review on imaging that she did. She found that other markers for endometriosis, such as biomarkers in urine, blood, and endometrium, did not have the same accuracy, sensitivity, and specificity as imaging. She felt that ultrasonography seems to be the best method, but can we make it better?

About Dr. Jodie Avery

Dr. Jodie Avery is a is a social researcher with a background in radiology. Currently she works as s senior research fellow and program manager for the Imagendo project at the Robinson Research Institute in Adelaide at the University of Adelaide in South Australia. 

Dr. Jodie Avery

She had the idea that perhaps we could increase the diagnostic accuracy of imaging by combining ultrasound and MRI using artificial intelligence to increase the likelihood of endometriosis diagnosis in women, perhaps avoiding surgery. 

So if we knew what we were dealing with up front before surgery, because of the imaging, we wouldn’t have to do so many unnecessary surgeries and we would be prepared if we needed things like bowel surgeons in surgery.  

We collected  MRIs and ultrasounds from hundreds of women who donated their scans to the project, and then we followed up on their surgery reports to find out their actual diagnosis on the old gold standard method. 

We’re also doing a prospective study where we’re recruiting women who are going to have surgery in the next six months. We give them a free MRI and, in some cases, a free transvaginal ultrasound, but it must be a specialized endometriosis ultrasound because you can’t diagnose endometriosis with a normal pelvic ultrasound.

You need a trained sonographer who knows what they are doing to do the right ultrasound. We’re trying to get a lot of women to do that, and we’re doing it in Adelaide, Australia, and in Sydney, and we’re just starting to do it in Melbourne, Australia, and we’re also going to do it in Canada with Dr. Matthew Leonardi. Dr Leonardi is a world-renowned sonologist and surgeon, and we are also talking to some other groups in America.

When we finish this first phase of the study, we really need a lot of data from the United States and Europe, because the regulatory agencies need worldwide data, not just from Australia. 

Charlotte Weber: That’s a great idea. Do you have a big team or how long did it take to develop artificial intelligence? Because that sounds complex.  

Dr. Jodie Avery: The Robinson Research Institute is collaborating with the Australian Institute for Machine Learning, and we have several computer scientists working on the project. One is Dr. Hugh Wang, a postdoctoral fellow, and then there’s Yuan Zhang, a graduate student who did a lot of the amazing work that we were able to present at one of the big computer vision conferences in Columbia a couple of months ago.

She won the award for best presentation of the entire conference with her results from that study, which is promising. The algorithms she is developing start with one of the signs of endometriosis, the sliding sign, which indicates obliteration of the Pouch of Douglas. Then we move on to looking at rectal lesions, and then we look at other markers, the common markers that are also used in ultrasound exams.

We’re gradually building out the algorithm to increase the accuracy. We have a team of gynaecologists, sonologists and radiologist helping guide the project, and we also have a team of graduate students, and research assistants helping recruit and collect the data.

Charlotte Weber: What does artificial intelligence tell me? Whether I have endometriosis or not, or what type or stage of endo.   

Dr. Jodie Avery: Right now, it says what is the likelihood of an endometriosis diagnosis compared to a surgical diagnosis. They look at things called sensitivity and specificity, and we need to do what’s called a diagnostic test accuracy study. In the second phase of the study, we will compare the algorithm with the actual results of surgery, using statistics.

The algorithm itself can show what’s called the area under the curve, which is a statistical technique that tells you the probability of having endo disease or not. Right now, we’ve focused initially on sclerosing the Pouch of Douglas. Once we move on, we’ll have to say whether the tool can define each of these markers or whether we have a separate algorithm for each of these markers.

We are not there yet, but we can tell if someone has deep endometriosis.The algorithm will tell you that you have endometriosis before you undergo the surgery.

Charlotte Weber: That’s great. There are so many young women who undergo surgery without knowing what’s going to come out of it and whether it’s worth it. Surgery is a big deal no matter what the technique of the surgery is, so that’s a big job. Once you get through the first part successfully, you have many more goals for the future, and then you can move on and get more specific. That’s a great idea and a really good way to support the diagnostic time that’s needed. The other poster you had was a little different. It was the general practitioner’s perspective. How did you come to explore that?

Dr. Jodie Avery: Part of the decision we made as part of the grant was to talk to physicians, particularly at the primary care level. In Australia, if you have a problem, you go to your primary care doctor first.

Charlotte Weber: This varies from country to country. 

Dr. Jodie Avery: Those who use the public, free health care system often must wait a very long time to see a doctor, get an appointment with a specialist, and then go in for surgery. For them, the wait can be as long as six and a half years. From the first signs of their endometriosis to surgery.  

You go to the general practitioner, and they might say all women have period problems. You go home and you don’t really get an answer. Then you go back, and you say, “I still have a painful period, I still have pelvic pain, I still have painful sex. They say, okay, maybe you have irritable bowel syndrome or something else. Go have a baby, see if it gets better then, all these things.

They may end up getting a referral to a gynecologist. Then they must go on a waiting list until they can have surgery. We now want to find out why this happens and why general practitioners don’t realize that it’s not normal for a woman to suffer from period pain.  We’re trying to figure out why the doctors don’t know what’s going on. 

We’re researching and talking to doctors to find out what exactly they know about endometriosis because they may only get two or three hours of teaching about it when they’re at university, and we want to find out if we can give them more information.

We’ve traveled to rural areas in South Australia and talked to doctors as part of their continuing education programs. Before we do that, we do a little survey to find out what their barriers are to learning about endometriosis. Is it because they don’t understand the disease? Are they not getting enough education?  

We’re just going to find out the general barriers, and then we’re going to explore those further in face-to-face interviews to find out exactly what the barriers are and what we can do to help physicians delay diagnosis and see what their referral patterns are.

Whether they’re sending women for a necessary transvaginal ultrasound, whether they’re sending them for an MRI, or whether they’re not doing any diagnostic testing and just sending them directly to the gynecologist. That’s something we want to explore on a larger scale. 

Charlotte Weber: What do your results so far tell you? What do you think is the main reason for the delay? Is there something they just don’t know enough about, or?  

Dr. Jodie Avery: Yes, I think they don’t know enough about it. They also normalize it a lot because they’re just not educated enough at university about it. I think the best thing we can do is try to give them as much information as we can.

Charlotte Weber: Have you come across any digital self-help for patients or educational apps for doctors that might help?   

Dr. Jodie Avery: We have another program in our group, the EndoZone. Professor Louise Hull developed it with the help of Dr. Beck O’Hara. They developed the EndoZone website, which was co-created by women with endometriosis, physicians, and medical professionals. It’s had over 50,000 visitors. There is a page on self-management, a page on surgical techniques and referral pathways, and things like that.

Patients, physicians, and other interested parties can visit this website, which is a comprehensive resource for everything related to endometriosis in Australia. That seems to be very helpful as well. I think doctors are the biggest barriers when it comes to understanding and awareness of endometriosis.

The fact that there aren’t enough gynecologists to go to, and they don’t know what diagnostic tests women really need. I think those are the biggest barriers that have come out of our research. 

Charlotte Weber: In Australia, if I’m a patient and I have a problem, whether it’s my head or my foot or anything else, I must go to the GP first, and only if he or she says, okay, you need to go to a specialist, then I get to do that.    

Dr. Jodie Avery: If you want to go to a medical specialist, like a gynaecologist or a gastroenterologist, you need a referral. But if you just want to go to see an allied health practitioner like a psychologist, podiatrist, or dentist, you can go right there. Gatekeeper system. 

Primary Care Doctors get an average of 7.5 minutes for each patient. I think we need more resources to give women the opportunity to get a longer appointment if they have a problem, because that’s the only way they can get the appropriate care that they need. 

Charlotte Weber: Yes, that’s true. Is there anything else that you would like to share with those affected?   

Dr. Jodie Avery: Well, one of the most important things we want to do is make sure that we can tell women that they can be diagnosed by endometriosis ultrasound, and the ESHRE guidelines say that. You can get the diagnosis, but it must be done by a specialized ultrasound unit.

There are a few in Australia, not so many overseas, not so many in America, but the profession is growing. They don’t necessarily need surgery, unless the sonography does not find anything, then they may need surgery. That’s what the ESHRE recommendations say. Hopefully, if we start looking at the quality of ultrasound exams, we can eliminate the reasons for a lot of surgery. 

There are also a lot of things they can do themselves, like pelvic floor exercises and things like that. That’s important. I don’t have endometriosis myself, but I work with a lot of people who do, and they are very knowledgeable about the different ways to deal with the situation. I hope that we can help with the diagnosis and that we can help women in remote areas who don’t have access to surgeons and other professionals to have access to a better diagnosis. 

Charlotte Weber