Current Research on Endometriosis: An Interview with Rachael Wood

Teresa Götz: Could you please introduce yourself briefly?

Rachael Wood: I’m Rachael Wood. I lecture and research at the University of Canterbury in New Zealand. A key part of my research group is looking at endometriosis and trying to understand how it’s able to invade.

Teresa Götz: How did you come to research endometriosis?

Rachael Wood: I blame my graduate student 100 percent for that.

A big part of my work has always been modeling diseases using cell cultures. I was approached by a mechanical engineering student who really wanted to look at what endometriosis was. I thought, “Okay, let’s see what we can do.” I helped her with a project and that has now turned into her PhD thesis.  Especially when we started talking to patients, I realized very quickly that this is not research that I can leave behind, because you can’t forget what they went through. It looks like I’m in this for a long time now.

Teresa Götz: Would you say this is your main motivation?

Rachael Wood: There are several reasons. One of them is the widespread suffering that many women experience due to endometriosis. It is a condition that affects many people. It is also a topic that, for one reason or another, has not received the attention it truly deserves. There is still a lot we don’t know about it. It is amazing that we have known what endometriosis is since 1912, but our knowledge remains limited. Yes, we have started talking about it, and that’s good, especially in the last decade, people have heard the word endometriosis before, but obviously now we’re working to understand it and research what will really help patients.

Teresa Götz: What, in your opinion, is the greatest challenge in the field of endometriosis?

Rachael Wood: I think probably the biggest challenge is that there is no reliable and easy way to diagnose it. These women come in with pain and the doctor can’t just say, “Oh, that’s it.” They’re pushed through different treatments and options. The doctors don’t give them any credence. You hear that a lot. By making the path to diagnosis so difficult, these women must live with pain much longer than they should. And, of course, we don’t have any real treatment either. I just think it’s appalling how many women go to the doctor with pain and aren’t listened to. To be honest, it’s just awful. I think in New Zealand, on average, they go to four and a half GPs before they get a diagnosis. There’s clearly evidence around the world that patients must go to multiple doctors because they’re not believed.

Some people need a lot of courage to go to the doctor and talk about these kinds of problems. If they’re put off, it takes them a lot longer to see the doctor again, and during that time they’re in pain. I think a big problem is that women go to the doctor with pain, and they are not believed.

Teresa Götz: Yes. I think it’s crazy and I say it’s the same in every country too. In Germany, it’s the same.

We also see that it is slowly getting better, the awareness is getting better in the last few years. It’s not much, but it’s something.

Rachael Wood: We have only recently started collecting this data, so I don’t know what the trends are here. We have recently been working with Māori, the indigenous people of New Zealand, and the Pasifika, who are also a significant part of our population. We talked to them about their experiences with endometriosis, and just under half of our Māori patients were accused of drug seeking behaviour when they sought help for their pain. I wouldn’t be surprised if that happens in other places in the world.

Teresa Götz: I read it also in black women and it is more often neglected. People used to say it was a disease of white women, rich women who don’t have many children.

Rachael Wood: It’s difficult because yes, they have said historically it’s a white woman’s disease. Then they say, oh, there’s not the same prevalence in people of color or black people and so on, which is often because they haven’t been properly assessed. How much of those ‘low numbers’ it is due to not listening to them and not believing them when they come forward with pain.

It’s interesting because we noticed a trend in our Māori and Pasifika patients that was very apparent in these focus groups (compared to our original mixed groups where we didn’t collect data on ethnicity) because their pain wasn’t listened to until they had difficulty getting pregnant. It’s also disturbing how many women are told, “Just get pregnant.” You add a whole new level of heartache to them because they’re already dealing with enough with their chronic pain and a lot of people with endometriosis have problems with fertility.  That’s pretty messed up.

Teresa Götz: Could you summarize your work or explain a bit for our readers?

Rachael Wood: As part of my initial research, we ran focus groups with endometriosis patients to help us identify where we should focus our efforts. They are the people who have lived through this condition and therefore we wanted their perspective for our research approach.

It was very interesting with our Māori and Pasifika groups. They said that it takes much longer for them to be diagnosed and therefore they wanted priority to be placed on developing a better diagnostic method because they obviously suffer more in their longer wait.

We currently have an ethics for a study to talk to a rainbow cohort. We’re about to start recruiting for that because, again, we’ve heard some awful stories about what they’ve been through. We’ve also gotten ethical approval for a study with primary care physicians because we need to help from both sides, which is we need to help the patients, but we also need to make sure that we’re equipping our physicians with the right tools because it’s pretty easy to say, “Oh, the doctors should have known.” A study in France found that only 25% of general practitioners felt they knew enough for their day-to-day practice. I also work with primary care physicians to give them the tools they need to help patients.

What we’re trying to focus on now is comparing endometriosis to cancer because we know that endometriosis is invasive. It is a hormonally driven disease; we have hormonally driven cancers, and we know how they behave. We’ve talked to cancer researchers and done invasion comparisons to figure out, “What’s the difference between this and cancer?”

I think if we start thinking of endometriosis as cancer, maybe society will take it a little more seriously. We know hormonal cancers change the stiffness of the tissue. We know that the cancer cells make their environment stiffer so they can invade, and that helps the cancer progress. There is strong evidence that this is the case in endometriosis. We’re trying to characterize that environment, to look at the stiffness of the endometriosis tissue in patients to see how the stiffness of the environment affects the behavior of the endometriosis cells and whether there’s something that we can target in changing the stiffness to at least prevent the spread.

That is something that we know is used in several cancers. There are treatments that target the changes in the environment of the cells. We’re trying to figure out if that’s something that happens in endo and if it’s something that we can characterize and target. That’s the theory we’re pursuing right now. We’re trying to figure out how the environment is modulated to support the invasion and what barriers we can put up to prevent that. What we’ve seen so far is that it behaves very much like cancer. It just doesn’t seem to have that dangerous metastatic aspect that kills you.

Teresa Götz: You’re using what we already know about cancer and trying to adapt it to endometriosis to see if there are similarities. I have talked to other scientists, and they are also researching the similarities between cancer and endometriosis. I’m just thinking about an interview for patients right now. That can lead to some anxiety. What can be a good message? Why shouldn’t patients be anxious about comparing it to cancer?

Rachael Wood: That’s why I say non-fatal cancer. The diseases that spread will have very similar characteristics. We can learn from the invasive diseases that we know about, like cancer, and therefore apply what we know about other diseases.

Teresa Götz: Thank you. You have explained it very well. It is a good example of something that is not dangerous, but also has some similarities. Thank you.

I think in this complex area it is good that you work together in a multidisciplinary team. Who is part of your team?

Rachael Wood: I am an engineer. We are an international team. Our staff in the U.S. is very knowledgeable about tissue characterization. I have worked a lot with cell disease modeling. The collaborators in Australia have a lot of experience with endometriosis, and they are some of the people with whom we developed endometriosis cell lines.

Teresa Götz: I think it’s smart to help each other and pool resources and knowledge.

Rachael Wood: We want to make sure that our work can complement each other and we can work together. In a world where there is so little endometriosis data, the more data that is available, the better.

Teresa Götz: What are your future research goals?

Rachael Wood: We are just starting to characterize this tissue. This has been planned for a while, but it’s just getting started. We’re looking at mechanical characterization, and we’re looking at the effects of estrogens and other hormones and how they affect inflammation. We’re doing a lot of invasive testing in 2D and 3D and changing conditions, mainly to see if we can make the environment less stiff because we’re doing a lot of our culture on plastic, which of course is not representative of the body.

It’s very well documented that the type of culture has a big impact on the cells. We are experimenting a lot with this. We hope to create a 3D model of the healthy environment and the endometriosis environment and culture healthy and unhealthy cells to see how they interact with those environments. That’s the key aspect essentially.

We will continue to work on this and share with our patients. When you think about how many hormone treatments they get just to try to treat the disease, it’s obvious that hormone treatments aren’t sufficient, and they have all kinds of side effects.

We must make sure that we engage with them and make sure that any solution or idea that we have is really what they want, because after all, they are the ones getting it, not us.

Teresa Götz: That’s a good suggestion for my next question. What do you think of digital self-help, like we have with the Endo-App? What do you think of it in general?

Rachael Wood: As far as the sense of community, I think that’s very important. And if it’s just keeping track of your own health, symptoms, and development, that’s invaluable.  To our focus group, we asked what advice you would give to other endo patients. The most common answer was, “Keep a symptom diary,” and they found that that was helpful in getting the help they needed.

Most people have a cell phone these days if it’s something simple that can help them.

Teresa Götz: Exactly, our Endo-App contains a symptom diary and an activity diary. We also hope it can help the doctors, for example, to show that the medication is not working. I’ve been taking this medication, but the pain hasn’t changed or anything. That’s one aspect. There are also exercises, for example, for relaxation or prescriptions.

Rachael Wood: It’s a good option to have something that you can easily track.

Hopefully, that empowers them. Our patients said that keeping a symptom diary helped them access treatment.

Teresa Götz: That’s right. One last question: Do you have a message for the patients?

Rachael Wood: Don’t let other people tell you if your pain is normal or abnormal, you know your body best.

Your pain is legitimate, and don’t let others tell you it’s not because they don’t live with it. Support yourself. Get someone to help you and get them to listen to you.

Teresa Götz: I think it’s a good message to seek support, you’re not alone. Thank you for the interview and I wish you all the best for the future.

Teresa Götz