Options Beyond the Knife for Endometriosis
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Options Beyond the Knife for Endometriosis

Melissa:

It's her house built for women's health, and we're talking about innovations that are shaping the future of women's health care, answering under research topics, and at the end of the day, fueling a better quality of life for women. I'm Melissa D'Elia, and after years of frustration, venting to my mom, and trading horror stories with friends, I'm so excited to see awareness and investment actually transforming how our bodies are understood, how we're diagnosed, and how women are cared for. In each episode, we share stories from real women like you, your mom, your sister, friends, and we interview experts who are tackling women's health challenges head on.

Anonymous:

I went to my gyno and told her I was having extreme pain during sex. Like, literally, I felt like I was being torn open. And I thought I was just little and he's too big. And my gyno was like, you're probably just expecting pain. So here's some lidocaine, rub that on, then have sex.

Anonymous:

So I would use lidocaine, numb myself, and shove a dilator inside me for thirty minutes a day because that's what I looked up online to do. That I have to push a little in and wait for the pain to subside, push a little more in and wait for the pain to subside. I had gone back to the guy now and she was like, how's the sex? And I was like, so great. Okay. I can almost get him fully in. He can move ever so slightly inside me and I barely cry. And she goes, oh, no. No. That's that's not right. How's the pill treating you? Well, before I had extremely bad cramps and really heavy periods so the pills really mellowed that out. She's like, Okay, honey. You probably have endometriosis. Unfortunately, you cannot diagnose that without surgery. I'm going to give you to the best endometriosis specialist I know. He is fantastic.

Anonymous:

So I went and I met him. First thing he said was, I know why you're here but I want to hear why you're here. Tell me. I got my period when was 16 and like a year later, I started having extreme cramps like literally to the day. And then my cramps just kept escalating from there. Motrin stopped working. I was to have to take Pamprin Max strength so I could like sit up and drive to work. I used to be so light headed from the blood loss.

Anonymous:

I told him, I was like, I'm so worried that like I'm just a whip. He was like, Yeah, everyone who comes in here thinks they don't have endometriosis, think they're being overdramatic. He's like, So you women need to start believing in yourselves because you are in pain and unfortunately there's no cure. He told me I'd have to be on hormones, like you know, just hormonal birth control the rest of my life essentially to slow down the endometriosis because it's going to grow back. I was very fortunate to be believed immediately.

Anonymous:

So yeah, and I'm doing much better now. I have no pain during sex. Crazy experience to enjoy myself and not sob. I'm doing better. So hallelujah.

Melissa:

So that was a firsthand experience from somebody who went through being diagnosed with endometriosis and obviously the brutal symptoms that she dealt with for many years before the diagnosis. On this show, we talk about women's health issues and in a lot of cases they are topics that have been left behind. But there are people who are going after these gaps in information, the questions that haven't yet been answered, and I'm obsessed with finding them. I'm obsessed with finding the people who are trying to discover these answers. And that's the really good stuff.

Melissa:

Digging in with the professionals who are actually working to improve women's health. They're delivering solutions and hopefully finding cures. And they're joining us to share how we got here, what we know today, and really what they're trying to solve. In this expert interview, we're going to a place where medicine has been slow to catch up. Again, the disease is called endometriosis.

Melissa:

If you haven't heard about it, and we're going to talk about the pain that's been dismissed, even though it's estimated that one in ten women have endometriosis. And we're exploring those symptoms, these symptoms that were waived off as normal because it takes seven to ten years on average to diagnose this disease as a result. Our expert interview is with Doctor. Italise Flores. She's a six time PhD professor at Ponca Health Sciences University and chief scientific officer at NeuroHealth.

Melissa:

Her own personal diagnosis is actually what led her to a career pivot before most people were even paying attention to the disease. Now she's bringing decades of research to developing new methods for diagnosing and treating it. Idhaliz, thank you so much for joining us today.

Dr. Flores:

I'm so pleased to be here. Thanks for the invite.

Meliss:

It's so nice to see you. And, of course, as I mentioned last time we talked, the beautiful art in your background, I think it's amazing how that is connected to your work.

Dr. Flores:

This piece of work here by doctor Pedro Santiago depicts two women. One here, is obviously fertile. There's another woman by her who is obviously going through, infertility. This painting is called endometriosis, and that's the disease that I study in my laboratory. It's a condition that can cause infertility as this painting depicts.

Melissa:

I was actually at a conference recently and there were people in the room. It was a women's health conference that didn't know what endometriosis was. Where is it in your body and what is the actual disease?

Dr. Flores:

So endometriosis is defined as endometrial like tissue that is growing outside the uterus, affecting organs in the pelvis primarily, including the uterus, fallopian tubes, ovaries, but also the bladder, the GI tract. So this presence of tissue where it's not supposed to be is gonna be causing inflammation, prostaglandins, and a whole lot of pain, infertility, and the impact on the quality of life as you can imagine.

Meliss:

I'm picturing when you see mushrooms that are growing outside of a tree.

Dr. Flores:

It's a good analogy actually. And then they can grow as lesions are superficial, some are actually invasive and actually cause another important symptom of endometriosis, which is pain with sex called dyspareunia and also ovarian cysts that damage, the ovaries causing infertility.

Meliss:

Where did your career start and how did your experience lead you to where you are today?

Dr. Flores:

So I was born in Puerto Rico. I went to the University of Puerto Rico and I started my career as a microbiologist. Then I went to The US to pursue a PhD in molecular genetics and microbiology. This is where I learned I could apply so many of these molecular biology techniques to studying different diseases and conditions, not only infectious diseases. But it wasn't until my own diagnosis of endometriosis when I discovered that I would be really, it would be really important for me to apply all these techniques to studying the disease that was actually affecting me and some people around me.

Melissa:

Gosh, it's crazy to think that it's 2025 and endometriosis is still something that we're wrapping our heads around. What was that experience like for you thirty years ago?

Dr. Flores:

So imagine waking up in the emergency room in a hospital with many doctors looking at you and telling you, we don't know what you have. You came here with excruciating pain. You actually collapsed in your apartment. But we ruled out everything from, I don't know, any inflammatory disease, infections, appendicitis, and that it has happened twice. Then at the third time, imagine being told, oh, you have a mass in your ovary.

Dr. Flores:

It might be cancer. We need to do emergency surgery. I mean, this is how frightening this all was. And then waking up after emergency surgery, hearing for the first time the word endometriosis. I was only 28, but now I had to deal with this disease or this diagnosis I knew nothing about.

Dr. Flores:

So as a scientist, as often scientists do, I went to PubMed to try to look into the literature. There was very little research done on this disease. The only way to diagnose it was via surgery. There were no effective treatments, only hormones that may help with symptomatology, but still are not curative. So, I was drawn back.

Dr. Flores:

I was like, what is this disease and what can I do about it as a molecular biologist? And this is how it all started.

Melissa:

And you were doing something that hadn't been done. How did you address getting support for the work?

Dr. Flores:

So I have to be honest and tell you, was hard. Even colleagues, they would say, but why would you devote your lab, your career to a disease that nobody knows about? So I had to persevere and start looking for other resources, not only NIH, but also a foundation. Only $60,000,000 of funding from NIH were allocated to endometriosis. That's only $2 per person. So that was very frustrating at the beginning, the lack of research funding.

Melissa:

Were there gaps in the research that frustrated you the most?

Dr. Flores:

Yeah, to me, and one hundred and seventy six million women that are estimated to have endometriosis. Yeah, I mean, the biggest concerns, I mean, at least for me, I mean, it took so many years since my adolescence where I was experiencing like severe cramps, severe menstrual pain, nobody had told me that this was, you know, there was something wrong with me. So I have devoted many of these twenty years in my laboratory just to look at biomarkers in blood, in serum plasma, or urine, or even menstrual fluid. We need some way to non invasively diagnose this disease. And the other area where it's really challenging and has been very frustrating is treatment.

Dr. Flores:

Usually the treatments for endometriosis are, oral contraceptives or other types of hormonal, treatments. Unfortunately, hormones cannot be taken by all women and we desperately need some treatments that are non hormonal. Let me tell you something else. These treatments are contraceptives. And many women with endometriosis, actually thirty to fifty percent, want, you know, are infertile or have problems getting pregnant and might want to get pregnant.

Dr. Flores:

So they have to be put in this scenario where they have to choose quality of life because of the pain I'm suffering or actually trying to get pregnant and have my family. It's quite frustrating.

Melissa:

I think that a lot of people today, whether it's themselves or just other people that they know can relate to fertility struggles. But to pile that on top of, you know, all the unknowns related to endometriosis, it's even more daunting. What types of evidence are you seeing that could shift how we understand endometriosis and treat it?

Dr. Flores:

So luckily, in the last couple of years, research on endometriosis have been improving, and there's more and more interesting understanding this disease. And it has been nurtured by research from other fields, such as cancer, etcetera. And now, of these tools we're applying, and we're understanding things like some of the mechanisms that cancer use to survive and grow, endometriosis might also use them. And now there's also an understanding that this is not only a disease of the pelvic area. We know that endometriosis lesions can appear in other organs like the lungs, even the brain in rare cases. So this would explain the systemic inflammation and the systemic symptoms that are quite debilitating, including things that you couldn't link to endometriosis, such as fatigue, and also involvement of other organs beyond the pelvis.

Melissa:

It's pretty astonishing to think that even now we're just learning where the tissue is growing. You mentioned the only way to effectively diagnose it is through laparoscopic surgery. Is that invasive and potentially costly?

Dr. Flores:

We shouldn't do a surgery just to diagnose the condition. Diagnosis could be done with symptomatology. It could be done with biomarkers and through just a blood sample. And then that would allow us to help patients navigate this process.

Meliss:

And so those biomarkers or tests, will they be done at home?

Dr. Flores:

Even right now, there's some commercially available tests for endometriosis that are direct to consumers, meaning you can buy them at the pharmacy or order them and you can test yourself. We rather have our test be a complement to the doctor's visit. Remember, endometriosis, it is a complex disorder. It will require, the interpretation of a physician in the context of the patient's symptomatology and circumstances. Right?

Dr. Flores:

So we would, prefer that our test, is done either in a hospital setting, of course, or, preferably, in a gynecological office setting.

Melissa:

I think that most people, I mean, I personally, even if I'm digesting information directly, appreciate having a medical professional as my partner in diagnosing what's going on with my body. Switching gears a little bit, one of the things that we like to do on this show is highlight how crucial it is to study biological differences between women and men. Can you talk about the importance of the diversity in your subjects?

Dr. Flores:

Yeah, absolutely. So yes, endometriosis does, impacts women predominantly. There have been some very rare cases of men. Mostly because they're under the influence of, estrogen therapy. So there might be some, they call them like fetal tissue remnants that may activate and behave like endometrium. But these are obviously very rare cases. So, yeah, I'm all for diversity. I'm Hispanic Latina, of course. So I am pressing that the inclusion of women of Latin American heritage, of, you know, African American heritage will be also part of the research that is being conducted. For example, there's been a lot of, efforts on understanding the genetics of endometriosis, and there are just beautiful studies being conducted, around the world. But 98% of the participants are of, you know, European heritage. It's so important that we ensure that people from different races, ethnicities, geographical locations, cultures even, participate in this type of research? Otherwise, how can we even make sure that whatever findings and advancements we're finding would apply to everyone? And we want this research to be equitable.

Meliss:

Genetics are much more than just your family heritage or a few generations back. So super impressive, and thank you for all your work that you've done on the research side. We originally met through the sprint for women's health out of the NIH, which funded a select number of companies. You and your team are the scientific glue between a consortium of related companies. Can you talk about how they collaborate and what each of them brings to the table?

Dr. Flores:

The master plan of involvement, not only NeuroHealth, which, discovers new ways to diagnose endometriosis in blood, but also companies that have innovated in this space by creating solutions and tools. If we are able to match biomarker levels with specific symptoms, some patient subtypes, patient phenotypes with lots of data points and using the newest technologies of artificial intelligence, that will really move the needle. I was convinced that is the way to go. But not only that, but this platform is so unique and so innovative that it will not only help define these biomarker levels, link them to particular phenotypes, but will also help to identify which hormonal treatments, and in the future, other types of treatments are best, are most efficacious and with less side effects for particular patients.

Melissa:

It's good to hear implementation of technology across the projects. How are you testing these new products on humans?

Dr. Flores:

Yes, we are actually recruiting for this trial. So basically we're asking women with endometriosis, but also women without endometriosis will be also very helpful because we want to be able to compare these two groups of women. We ask individuals who might want to participate to answer a very short eligibility survey. If they do, we will follow-up to answer more in-depth questions. There we're we need information about their symptoms and and also important to follow-up throughout a couple of months, ideally six months. And we're gonna do that through an a mobile app that very easily will track all this, symptomatology and circumstances in the women's life that we can then track and correlate, in real time with what's happening with the biomarkers. And these will help us in their path, in their journey to get the precise treatment that will function for them.

Melissa:

Thank you so much for your work. It really is incredible that you took that leap when other people weren't paying attention to it. And while I'm sorry that you had to deal with that pain years ago, you really are making a difference for the future of other women that hopefully won't have to, deal with such a scary situation. To close our conversation, we'd love for you to give a shout out to another innovator in the women's health space.

Dr. Flores:

Only one? I have a few. Now very quickly.

Meliss:

We hear that often. Special shout out to Drs. Annelyn Torres and Caroline Appleyard. They're my colleagues and cofounders of Sur180 Therapeutics. It's a company that is researching new non hormonal treatments for endometriosis here from Ponce, Puerto Rico.

Meliss:

If people want to follow your work and follow the consortium, what's the best way to do so?

Dr. Flores:

So the consortium has presence in LinkedIn, The EMMA Consortium. They can follow me also in LinkedIn, Idhaliz Flores. And I will welcome anybody's questions or comments. This is my passion, has been my focus for twenty years, and I hope to continue for many more years to come.

Meliss:

Thank you, Idhaliz , and thank you for your entire team's work.

Dr. Flores:

Thank you.

Melissa:

Thanks for listening. And I hope you're able to share this podcast and what you learned with others who care about women's health. Whenever I get frustrated about health concern or struggle, I always remind myself that I have more information than my mother did and way more than my grandmother's. These innovations are so important and we can't stop talking about them because those conversations result in progress for generations to come. I'd also really love to hear your stories. The stories that end in hallelujah and the bummers.

Melissa:

If you're comfortable, you can leave a voice message by going to her-house.com and clicking your stories. Again, that's her, the dash symbol, house.com, and your stories. Everything is a 100% anonymous and always will be. I wanna hear about your period, your doctor's visits, your PCOS, pregnancy, giving birth, what happens after birth, being postpartum, raising your daughters, caring for your mothers.

Melissa:

I wanna hear about sexual health, mental health, weird symptoms, your immune system, and seriously, any differences that you recognize between women and men, because we are different down to the chromosomes that encode the entire maps of our bodies. People are researching these topics and we're going to find them.