Current Research on Endometriosis: An Interview with Lilian Aragão, M.D.

“They can do anything they want, have an improvement in their life’s and not feel pain anymore. I think they should keep these things in mind because some women who get the diagnosis endometriosis feel very bad about it. It’s a benign disease that can be treated and the quality of life can be very good.” 

Teresa Götz: Hi Lilian, could you introduce yourself briefly for us and tell us how you came to work on endometriosis?

Lilian Aragão, M.D.: I’m a Brazilian gynecologist and obstetrician. I was trained in a public hospital and specialized in minimal invasive gynecology and urogynecology. During my master studies, I did work on endometriosis. Then I started to work with patients with endometriosis and started specializing in this area. Right now, I’m more into clinical and scientific work in endometriosis, although still engaged in minimal invasive gynecological surgery. 

Teresa Götz: Thanks. What fascinates you most about the topic? What is your main motivation?

Lilian Aragão, M.D.: Well, endometriosis is already a fascinating disease, right? It’s very complex, very multifactorial. We still need a lot of studies to discover the etiology, pathology, different treatments, and effective treatments for the disease. It is very intriguing, this disease. That’s why I study endometriosis and try to have some new information to treat the patients better every day. And maybe develop some new ideas on how to discover something that can improve patients’ treatment and diagnosis. Especially diagnosis, because we know that it’s very hard sometimes for the patient to get a diagnosis.

About Lilian Aragão, M.D.

Lilian Aragão is a medical doctor with the Hospital Federal Cardoso Fontes in Rio de Janeiro in Brazil. She specialized in minimal invasive gynecology and urogynecology and started working on endometriosis during her master studies. She currently works on researching digital health apps for the Brazilian context and believes that working together to create a community around endometriosis is key to improvements and a better quality of life.  

 

Teresa Götz: Yes, I think you said it. We need a lot of research, and we need to improve the diagnosis. It’s very important that you do the research you are doing. Can you summarize your latest research for our patients in a few words?

Lilian Aragão, M.D.: Endometriosis is a disease that has lots of symptoms. It sometimes differs from other pathologies, like gastrointestinal symptoms, pelvic pain diseases that are not endometriosis, or vascular diseases. We need to do different diagnoses. We have had this special case where a patient had all the symptoms of endometriosis, especially abdominal wall endometriosis. She already had a history of surgery for ovarian endometrioma.

It was very clear to us that she had abdominal wall endometrioma because she had symptoms like draining menstrual blood in the skin. She got an MRI where we saw this nodule on the abdominal wall near the cesarean scar. Her symptoms were very characteristic of endometriosis, so we took her to surgery because she showed no improvement through medical treatment. When we got the pathology results back after the surgery, it read hidradenitis suppurativa, which is an inflammatory skin disease.

That was very surprising for us, so we made this poster for the endometriosis congress because we wanted to alert people that this is a disease that can mimic endometriosis. We need to be aware when we see some skin disease that is bleeding and think about hidradenitis suppurativa, too. 

We tried to find the relation between menstrual period and hidradenitis, and we found that hormones stimulate certain glands in the skin, which enhances the inflammation of these glands. That’s why they drain blood in the menstrual period. 

Teresa Götz: Was this the first study about this topic or are there already studies on this?

Lilian Aragão, M.D.: Yes. We haven’t found any case reports about it. I think it is really new. We haven’t seen studies talking about the similarity, about symptoms of both diseases. It was very interesting because we never heard about it, it was the first time for everyone. It’s a rare case also because hidradenitis is a rare disease. That’s why we probably haven’t seen it before.We have to alert the clinicians that we had this condition, and we have to be alert about it.

Teresa Götz: Now we are at the forefront of the research, a new and never-done research. What do you think are the greatest challenges in the field of endometriosis? 

Lilian Aragão, M.D.: First, I think it’s an early diagnosis. We have a culture, I think globally, that people believe it is normal to have pain during their period. It’s very hard to demystify this culture of pain in menstruation. Women start thinking very late that it’s not normal to feel pain and translate that to their diagnosis.

Some clinicians don’t give the right attention to the symptoms of a patient. Sometimes they don’t do the right diagnosis, the right examination. They just do a regular ultrasound scan and not a specialized one to then say “No, the ultrasound is fine, it’s normal. You don’t have endometriosis.” 

We know that sometimes endometriosis is around the uterosacral ligament, or other sites that can’t be seen in regular ultrasounds. I think we also have to educate physicians so they pay attention to symptoms that could be related to endometriosis. That is the hardest thing, that we are not achieving to have good treatment and diagnosis of the disease.

Also, we have some studies about biomarkers that are very interesting. To establish a biomarker that is specific for endometriosis will be very hard. I think because of the multifactorial etiology of the disease, it’s still a very long path we are facing.  

Teresa Götz: That said – it’s a global issue we are facing. Whether it’s in Brazil or Germany, we all have the same issues with diagnostic delay and stigmatization of menstruation.

Lilian Aragão, M.D.: Right. It was very interesting to participate in Limburg because I had the opportunity to talk about endometriosis centers all around the world. We face the same problem. It was of comfort for me to know that it’s not only my country that faces problems with treating endometriosis patients.

It’s not a nice thing, but it’s of comfort to know that we have a long way to be better in this kind of stuff all around the world. We can help each other. We can exchange ideas or experiences and put them to work in other countries. That’s very nice. 

It’s also nice that we are trying to do develop apps that will go global, so everyone can use and access them. This is very important also because it’s an instrument that we can use to try to improve the lives of these women. It’s very interesting that we have contact with people from other countries who are into scientific programs. It’s very much worth it. 

Teresa Götz: What are your future research goals?

Lilian Aragão, M.D.: Well, my scientific program is about quality of life in endometriosis. I usually go follow this path, but I’m also very interested in trying to do some studies about early diagnosis. I now intend to do research that tries to use endometriosis apps in the youngest women who face dysmenorrhea and plastic symptoms of endometriosis.

I try to screen them for the disease. Patients who don’t have their diagnosis yet but probably have an idea that they do have endometriosis. They can fill the symptoms they have into the app, which could then maybe lead them to a clinician earlier.

Teresa Götz: This app, is it from your institution and is it specific for Brazil? 

Lilian Aragão, M.D.: No. We don’t have a Brazilian app yet, that would be the second step of the scientific program. First, we are trying to use or translate some apps that already exist. We include young women to use it and see how they continue to investigate the disease.

If it’s worth it, if the app is a good thing for them to try and discover endometriosis, we’ll probably try to create one or participate in an international app to have an app on endometriosis in Portuguese, in Brazilian. 

The first part of an app evaluation is translating some steps of the app and seeing how women respond to it. To see if it’s worth it to do it, to see if it’s interesting for helping people with their diagnoses. You created an app, so you know it’s not easy. You need to have medical improvement, you need to have the technology and the people to create the app. You have to test it.

It’s not an easy path to create something like that. I think first we have to do scientific studies. It will be easier to create an app after we tested the existing ones and saw if it’s worth it to have these technological instruments for helping people with endometriosis. 

Teresa Götz: You already touched on it, but what do you think are the biggest advantages of digital apps for endometriosis? 

Lilian Aragão, M.D.: First, nowadays it’s very easy for people to have access to an app. Even people that have a hard economical or financial situation, that are not very rich. They have access to a phone with apps and can enter and download the app for free. Sometimes these women don’t have easy access to health in general.

Especially in public health in Brazil, we face late appointments with doctors, people wait for three or four months to have an appointment. This could also help people to start thinking about symptoms and about the possibility of diagnosis. Maybe get them to try reaching an examination. 

I think it’s very easy for people to have digital influence. They have digital information helping these women to seek health support. A woman could go to the app and see if her symptoms are somehow related to endometriosis, if there is a treatment for her. She can get lots of information that can help her. She would depend on the doctor to tell her about the best treatment and prescriptions, but she would have support about the information.

This will help these women to be more confident and less stressed and depressed about the disease. I think this is great because we live in a digital world now. We cannot run from this. People who work in health have to use this as a instrument to work with the internet and have a digital influence. 

Teresa Götz: That’s right, I completely agree. Is there anything else you would like to share with those affected by endometriosis? Do you maybe have a message for them? 

Lilian Aragão, M.D.: I have a message that I usually talk about with my patients: endometriosis is a hard disease, especially when it comes with the pain. But it’s not the end. They must try to live their lives. With the right treatment and with the right instructions, they can live a normal life. They don’t need to worry about the disease so much when they have good treatment and a specialized doctor that can see then frequently.

They can do anything they want, have an improvement in their life’s and not feel pain anymore. I think they should keep these things in mind because some women who get the diagnosis endometriosis feel very bad about it. It’s a benign disease that can be treated and the quality of life can be very good.

Teresa Götz: There is hope.

Lilian Aragão, M.D.: There’s a lot of hope, especially with good people in scientific programs searching for better treatments and diagnoses.

Teresa Götz: And good doctors treating the patients. Those were my questions to you, thank you so much. Do you want to say something else that’s important we haven’t spoken about yet?

Lilian Aragão, M.D.: I think I would like to say that people should try to talk more about it, especially on the internet. Especially about the good stuff – we talked earlier about having hope and not hearing so many sad stories about it. If people can talk with women about there being good treatment, someone getting pregnant with endometriosis.

Referring to good doctors who treat endometriosis other people can also reach out to. I think this is the path. When we have a society that works together to be better and to help others, that is great. That’s what we need. If you can do that for another person, I think that is the way to make improvements in endometriosis.

Teresa Götz
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