This season we’re documenting the health, wellness and lifetime outcomes of Latinas between the ages of 20 and 40. 29-year-old Mariela "Ella" Vazquez was diagnosed with endometriosis at an unusually young age, and figuring out how to understand and address her physical symptoms became a lifelong journey. Journalist Julia Binswanger reports on Ella's personal experience understanding her body and her pain, and investigates why it can take adult Latina women so many years to receive a correct diagnosis after the onset of symptoms.
For more information, all episodes, and transcripts in English and Spanish visit us at 100latinabirthdays.com. Follow us on social media @100latinabirthdays.
100 Latina Birthdays is made possible by grants from the Healthy Communities Foundation, Woods Fund Chicago, the Field Foundation of Illinois, JB and MK Pritzker Family Foundation, and the Chicago Foundation for Women. Mujeres Latinas en Acción is the series' fiscal sponsor.
Learning to Live With Endo Pain,
Part 1
This season we’re documenting the health, wellness and lifetime outcomes of Latinas between the ages of 20 and 40. 29-year-old Mariela "Ella" Vazquez was diagnosed with endometriosis at an unusually young age, and figuring out how to understand and address her physical symptoms became a lifelong journey. Journalist Julia Binswanger reports on Ella's personal experience understanding her body and her pain, and investigates why it can take adult Latina women so many years to receive a correct diagnosis after the onset of symptoms.
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Virginia Lora: This is part one of a special two-part episode of 100 Latina Birthdays. To hear the rest of the story, be sure to listen to part two.
Mariela Vasquez: I grew up thinking I was crazy. I really thought I was crazy. I thought I was making up the symptoms in my head. I was like, "Oh my God, I'm a baby that can't take pain. If everyone's telling me some girls get it worse than probably what I have." I was like, "I'm a wimp. I can't take it." When I got sick, we just thought it's a stomach flu. It's period pains. I laugh now because I'm like, "Well, my pain tolerance is actually surprisingly really high."
Julia Binswanger: That's 29-year-old Mariella Vasquez. She goes by Ella. Her part of her childhood, she felt like a normal kid.
Vasquez: I was actually very healthy at a point in time and was very active, didn't have allergies to anything.
Binswanger: But when she was seven, she started having some mysterious health symptoms.
Vasquez: I started getting what they thought was bronchitis because it was just a lot of upper respiratory issues. They asked my parents, "Does anyone smoke at home?" They didn't. They're like, "Okay, are the other kids frequently sick?" They're like, "No."
Binswanger: Although she didn't know it at the time, according to Ella, those unusual symptoms were early signs of what was to come. At age nine, she began feeling an intense, sharp pain in her abdomen that wouldn't stop. A pain that kept her home from school throughout her childhood and that she's had to learn to deal with her entire life.
I'm Julia Binswanger. I'm a Chicago-based reporter. Ella lives in the windy city neighborhood of Rogers Park on the northeast side.
It's a diverse neighborhood right next to Lake Michigan and attracts a lot of immigrants and students thanks to its location and relatively affordable housing. About 20% of the population is Latino.
Ella's parents immigrated from Mexico before she was born. Her dad from Mexico City in the seventies, and her mom from Guanajuato in the eighties. She remembers the moment the pain started as a kid. It changed everything for her and her family.
Vasquez: It was three days of constant just throwing up, couldn't even hold water, and they're like, "Okay, something's wrong with her." They're like, "None of the homeopathic remedies are working."
Binswanger: Her parents gave her olive oil on an empty stomach. She drank ginger ale and ate bland meals. She saw a sobadera, which is a person that does healing focused body massages and did hot compresses on her abdomen with towels drenched in star anise tea. She also drank teas and a special mix of hot chocolate and sunflower seeds. The pain persisted. And when Ella's parents took her to a clinic, doctors couldn't figure out what was wrong with what they thought looked like a healthy kid. They wondered if she was exaggerating symptoms to get out of school. They gave her what she calls...
Vasquez: Medical grade Pepto-Bismol, that little pink liquid.
Binswanger: Ella says a string of doctors' visits followed. She would go in, explain her symptoms and get sent home. The pain kept getting worse. She told her doctors...
Vasquez: It feels like you're taking a dull blade, cutting me open with it, throwing vodka on the wound and lighting it on fire.
Binswanger: At one point she says that she was screaming because it hurt so much. Doctors told her...
Vasquez: "Okay, you need to calm down. You're being a little dramatic."
Binswanger: Ella told her parents she felt like the doctors weren't taking her seriously.
Vasquez: "But can't you see they're not helping me?" I was like, "I need help."
Binswanger: Next, Ella's parents took her to a hospital. New doctors ran tests, but again, nothing would come up. Everything looked clear. Again, they sent her home. And then a major physical change happened, one Ella thought might explain everything that had been going on with her body. Ella got her first period. She went to her mom to share the news.
Vasquez: "Oh, I think I know why I was in pain. It's my period. I just have my period earlier than other girls. That explains all the symptoms." And she's like, "Oh, well that makes sense."
Binswanger: Ella grew up in a one bedroom apartment with her parents and siblings. She's the youngest of three, a brother and a sister, and also three half siblings who are much older. When she started her period as a 9-year-old, she thought the mystery had been solved. Period cramps are common, after all. So Ella chalked up her pain to becoming a woman. Her mom tried to help again with home remedies, but from that point on, every two weeks, Ella would start feeling that same unbearable pain.
Whenever she explained the pain to the women in her family, they would say, "Oh, you're cramping." When Ella was 10, her symptoms intensified. Her periods became spotty and she started noticing blood clots. Deep purple bruising began to appear on her skin around her pelvis.
Vasquez: And you could see it on my stomach and you could see it in my abdomen area. And my dad at first thought that someone was beating me up at school and he's like, "Who's doing it?" And I'm like, "No one's hurting me."
Binswanger: At school, teachers thought something was amiss at home.
Vasquez: So they took me to the principal's office and they were like, "Are you being beat at home?" And I'm like, "What?" I'm like, "No, what are you talking about?"
Binswanger: Soon, Ella was in and out of the hospital. She couldn't hold down meals. Among the doctors was a gynecologist. One of the first doctors she says took her pain seriously and really wanted to figure out what was wrong—Dr. Roger Goldberg, head of obstetrics and gynecology at NorthShore University Health System.
Vasquez: He looks at the chart, looks up at me, sees a nine-year-old child, and he's like, "The math is not mathing here. What's happening?" And I look at him and at this point, I'm tired. I'm over it. And I'm like, "Look here." I was like, "What's your name?" And he tells me, and I call him by his first name and I'm like, "Look, Roger, either you're going to do something or you're going to take me out. Right now, kill me because I'd rather die than feel this." Which hearing from a nine-year-old I'm sure is not fun.
Binswanger: Ella was a precocious kid. From a young age, she spoke her mind with adults and medical professionals to advocate for herself when something felt off. Dr. Roger and a team of specialists ran a variety of tests, a CAT scan, an MRI and ultrasound. Ella says at this point, doctors suspect that her pain is related to her period. At the age of 10, she's quite younger than the patients they typically see. Ella fell out of place among adult women seeing a gynecologist.
Her doctors decided to do a minor surgical procedure called a laparoscopy, which lets them take a close look at her uterus. That's when they see it. For the first time, the tissue that lines the inside of Ella's uterus, her endometrium, isn't where it's supposed to be. The official diagnosis—Ella has endometriosis.
Vasquez: This is, mind you, 20 years ago now. So at the time even then, they believed that this just happened to women in their twenties and thirties and around the age that I am now.
Binswanger: According to Yale Medicine, on average, it can take adult woman two to four years to receive a diagnosis for endometriosis after the onset of symptoms. For teens, that average is six to 10 years, and there isn't much research into endometriosis in young girls. Children's Mercy Hospital in Kansas reports girls as young as eight can suffer from endometriosis, and nearly 40% of endo patients have symptoms before the age of 15. Endometriosis is a chronic condition that impacts roughly one in 10 women of reproductive age according to the World Health Organization.
Some doctors think the actual figure may be higher because endo pain, like in Ella's case, is easily misdiagnosed or disregarded as normal pain. Here's what happens in the body. The tissue that lines the uterus is called the endometrium. Every month, this tissue gets ready to house a fertilized egg by thickening up. However, if there's no fertilized egg, it breaks down and becomes a period. But sometimes instead of leaving the body, this tissue can migrate to other ovaries, fallopian tubes, abdomen, and pelvis. And although it usually stays in that abdomen and pelvic area, it can move to anywhere in the body. Here's Dr. Laura Douglass, an OB-GYN and gynecologic surgeon at UChicago Medicine.
Dr. Douglass: Endometriosis is when endometrial-like glands are found outside of the uterus. So normally endometrium is supposed to be on the inside of the uterus. You think of those cells as the type that during a patient's menstrual cycle, those are the cells that are shed. And so it's very abnormal to have those cells actually in abnormal locations inside the pelvic area.
Binswanger: If the endometrium isn't where it's supposed to be, it might irritate nearby organs and cause a lot of discomfort. What's more, endo pain can happen at any time, not just during periods.
Dr. Douglass: It is a very hard diagnosis because the same symptoms that patients have with endometriosis, it can mimic so many other things.
Binswanger: For doctors like Laura, diagnosing endo presents a unique challenge.
Dr. Douglass: There's not a specific test, there's not a blood test you can do, even imaging, an ultrasound, an MRI. It can see big things, but it's not going to see the subclinical disease or these very kind of superficial lesions that patients can have, so it's sneaky. It flies under the radar.
Binswanger: It can be hard for the patient experiencing the pain to know that something's wrong. Period pain, after all, is often considered normal.
Dr. Douglass: There's kind of this very sexist view of, "Well, that's just your uterus. You're a woman, you're emotional." And I think women too internally, they have horrible periods and most people for years have bad periods, and that's crazy to me. Anytime I have a patient, I ask them, "What were your periods like when they started when you were a teenager?" They're like, "Oh, they're terrible. I missed school." And I was like, "You have endometriosis. I can guarantee you, you're on the spectrum of endometriosis." It breaks my heart because it just doesn't have to be that way.
Binswanger: Endo is so hard to diagnose because it looks different in every patient. Here's Sydney Kush, a third year medical student at Northwestern University training to be an OB-GYN.
Sydney Kush: Some individuals they might actually experience no increased pain but have some of these other symptoms, for example. And then there are some people who they have just the heavier bleeding. There are some who can't even get out of bed during the week of their period.
Binswanger: Sydney is currently doing research as well as community projects with Cook County Health, centered around endometriosis and chronic pain and how they affect women of color. She says endometriosis has a history of being misunderstood by medical practitioners. Historically, mostly white male doctors.
Kush: Endometriosis has an incredibly racist beginning. It was originally defined as a condition that could only be had by well-off women, and when they said that they were really meaning white women and they were completely trying to exclude Black and Latino women from that conversation.
Binswanger: This belief came from a 1938 study written by Boston-based gynecologist, Joseph Vincent Meigs. And the idea took root. Gynecology textbooks dating back to the sixties spread the false information that endometriosis patients were mostly white women. This view didn't begin to shift until the seventies after a Black gynecologist named Donald L. Chapman noted that 40% of his Black endo patients were incorrectly diagnosed.
Kush: When Black and Latino women were coming in complaining of pelvic pain, that was something that wasn't even being considered until that definition had to eventually be eliminated. So considering that that was the basis for endometriosis in the healthcare system, we still have a lot of work to do in regards to equitable care for Latino women in this space.
Binswanger: Again, Yale Medicine reports that it's not unusual for it to take endo patients over a decade to receive a diagnosis.
Kush: Latino women are typically older when they are diagnosed. They're also less often diagnosed than their white counterparts. A lot of times, particularly the research I found it was with Latino women, but it's really with all women. Their pain is trivialized. It's normalized, it's brushed off to the side. Other people with the subjective experience of cramping that isn't that bad sometimes will compare or impose that subjective experience on someone who can't even get out of bed because their cramps are preventing them from living their daily life.
Binswanger: Dr. Laura Douglass has a similar opinion.
Dr. Douglass: Any patient population that is marginalized, I think, always has a harder time being heard or being seen or being recognized. Where you get care, who's accepting your insurance really impacts your ability to see potentially some specialist or physicians who have that skill set to give you the appropriate treatment or the appropriate diagnosis.
Binswanger: This misunderstanding of endo within the medical profession can result in delayed treatment and inadequate pain management for Latino patients. But there are other factors as well. Nationally, almost 20% of Latinas do not have health insurance and Latinas who are of reproductive age 15 to 44 are dealing with the largest disparity in coverage.
Dr. Douglass: We also have data that Latinas, non-white, patients aren't as believed from a pain standpoint. Women are not believed, right? You go into the ER and a man says they're in a lot of pain, they get pain meds and a woman says they're in pain and they don't. We have many, many examples of that.
Binswanger: Sydney agrees.
Kush: This is not just in endometriosis or in chronic pelvic pain fields, but in quite a few healthcare fields. There is just unfortunately a lack of inclusivity of minorities and under or uninsured women regarding how these populations are affected by these diagnoses.
Binswanger: If your period is causing you to stay home from school or is affecting your work and impairing your life, both Sydney and Laura say that isn't normal period pain.
Dr. Douglass: If mom's periods weren't bad, then the patient is gaslit, where they're like, "Well, it's not that bad. You're just very, very sensitive." They're kind of told also by their own family member and not in an intentional malicious way, but they're not sharing that experience.
Binswanger: Or when they do share that experience, bad period pain gets dismissed as normal.
Dr. Douglass: A lot of times you can kind of look to what mom was like, what your aunts were like, grandma. "I don't know. My mom said that her period was bad, and I guess this is just... I just miss school."
Binswanger: This gets tricky because endometriosis is genetic and can run in families. If your family or your doctor isn't taking your pain seriously, Laura says...
Dr. Douglass: Trust yourself. If you think there is something wrong, something is not right in your body, be persistent. Even if the first person tells you that this is normal, find somebody else. You know what's normal. If something is not right, be persistent. It will pay off.
Binswanger: After Ella received her endometriosis diagnosis, things didn't necessarily get easier. Laura says when it comes to treating chronic illnesses like endo, the goal isn't a cure, but rather to try to improve symptoms and quality of life as much as possible.
Dr. Douglass: With any chronic disease or diagnosis, it is challenging. And there's kind of that realization too that this is something that they will have to deal with for their reproductive lifespan, which is a long time.
Binswanger: After Ella's diagnosis, she had multiple surgeries to remove the endometrial tissue from places it didn't belong. As a pre-teen, she went on birth control to get her hormones better regulated. She was on multiple medications to help with her blood clotting, urinary tract infections and constipation. And she also had medication to help her side effects from her other meds. But her endometriosis...
Vasquez: It came back with a vengeance. And they're like, "We have to put her back into surgery because it's too much. Her body is just going and going and building more endometrium."
Binswanger: What's more, her ovaries began cysting. Often endo can trigger or is related to other issues and health problems, like pelvic irritation, pain during or after intercourse, bladder discomfort, constipation, diarrhea, nausea, vomiting, even infertility.
Dr. Douglass: The longer that you're in pain, regardless of what's causing it initially, increases your risk for other kind of pain problems or comorbidities.
Binswanger: Side effects like ovarian cysts are common and often harmless. Sometimes, however, the cysts can rupture or twist the ovary out of place, which causes severe symptoms like fever, vomiting, and signs of shock. This is a lot for any kid to handle. And as Laura points out, endo patients often have to advocate for themselves when it comes to their pain and treatment.
As a first-generation Latina and a young girl, Ella had to push for the level of care that she needed. For instance, her parents are from Mexico and speak Spanish as their primary language. This meant that when doctors were trying to explain what was happening to their daughter, they regularly needed help .
Vasquez: In the hospital, we had moments where there were translators here and there, but there's no translator on site.
Binswanger: And having an interpreter was often not enough.
Vasquez: And my parents are Mexican and I love them to bits, but they did not have a college education, so even their vocabulary is limited to some degree or was at that point in time. So I'm translating it to Mexican Spanish and two words that they will more easily understand because even with the translator, they would kind of hit a wall at times of like, "Okay, but what does that mean?"
Binswanger: One of the community projects that medical students, Sydney Kush works on is facilitating the translation of medical materials from English to Spanish.
Kush: Different words mean one thing in one language and they mean something in a different language. Sometimes you need that exact translation in order to ensure proper patient care. Making sure that patients are getting the right treatments, that they're understanding what their diagnosis is and how they can move forward in terms of management.
Binswanger: At age 11, Ella had to become an endo expert.
Vasquez: Not only did I have to learn a lot of medical language really young, I had to learn it in two languages really young. So that involved pre-internet days. So I would go to the library and I would be reading the dictionary. And I'm pretty sure the librarian was like, "What is she doing? She's a kid." So I would read the dictionary, look at the definitions, so then I could translate it and be like, "Okay, this is what this means. Now I can go home and tell mom and dad what it says on the document."
Binswanger: At this point, Ella's cysts were chronic. In addition to the mind-numbing pain she felt, she lost a lot of weight.
Vasquez: I think I was maybe 80 pounds just because of all the medicines and treatments and not really keeping things down even when I was in the hospital, even with medication,
Binswanger: Dr. Roger, who's been her doctor ever since entered her hospital room. Ella was getting sicker. A prior procedure had gone incorrectly, damaging her internally. Her cysts became aggravated and were getting exponentially worse.
Vasquez: He's like, "She has, at most, and I am being graceful, three months, but I give it three weeks with the rate that her body's been reacting to this illness."
Binswanger: Ella says the surgery had a hundred percent chance of saving her life if it went well, but there was only a six to 10% chance she would survive the procedure. Dr. Roger started to explain what the surgery entailed, but Ella stopped him.
Vasquez: And I was like, "Oh, don't tell me." And I was like, "I know legally, medically you have to do this and you have to explain it to me because I am of sound mind." But I know in my heart I was like, "And I can't explain it Roger. But I know in my heart if you tell me this, I will say no." I'm like, "Don't tell me." I'm like, "Just do whatever you need to do to keep me alive and I'll figure it out afterwards."
Binswanger: When Dr. Roger explains the procedure to her father, he refuses to sign consent papers.
Vasquez: And I'm just watching the reaction from the hospital about it, and I see my dad freak out on him. And he's like, "No." And he comes back into the room and he's like, "I'm not letting you do this."
Binswanger: Ella says she thinks that her dad was afraid that agreeing to the surgery would be signing his child's death sentence. But little Ella was determined to have the surgery.
Vasquez: And I look at my nurse and I was like, "Get me a lawyer." And she's like, "What?" And I was like, "Give me a lawyer. I will sign. My mom will witness." And my mom's just stiff, staring at me, and I was like, "I love you, but one of you is going to have to sign after I do, so it's going to have to be you."
Binswanger: Doctor scheduled the surgery right before her 12th birthday.
Vasquez: One thing, and it was so funny, not ‘haha’ funny, but just how many things one can block out in traumatic moments. These gorgeous ladies come in and they're like, "What's one thing you wish you could do in your life that you never got to do?"
Binswanger: The gorgeous ladies were from the Make A Wish Foundation.
Vasquez: And this is before I think the last Harry Potter book came out and I was like, "I never get to know what happens to Harry, Ron and Hermione." I was like, "I want to know what happens." So they bring me the book before it was officially released and I read it all in one day.
Binswanger: Before the surgery, Ella and her nurses talked about her grandmother who had passed away.
Vasquez: I was like, "I wish my grandma was here." My dad's mom. She used to braid my hair when I was little, and the reason my hair is such a mess and so wild is because I don't like people touching my hair because they don't do it right. They're not her.
Binswanger: Ella's favorite nurse braids her hair.
Vasquez: It was such a weepy moment. All my nurses were there, and then they're like, "Okay, happy birthday. We have to take you to the OR."
Binswanger: They put her under anesthesia.
Vasquez: They do the countdown, and I got to maybe seven.
Binswanger: Ella says at one point, while asleep, she feels as though she regains consciousness. She begins to float outside of her body and sees everything happening in the room.
Vasquez: Then I see myself laying there and I'm like, "Why is everyone looking so scared?" And I'm trying to find answers, not realizing I'm in spirit form at this point. Then I end up at the pearly gates. My dad's mom is there, my grandma, and she's braiding my hair. And I was like, "I don't want to go back down there." And she's like, "It's not your time." And I'm like, "No."
Binswanger: Ella came to abruptly. Doctors were using defibrillator paddles on her chest.
Vasquez: I literally fall back into my body. I wake up and I say my grandma's name.
Binswanger: She was flat lining. Her heartbeat had stopped and doctors brought her back to life, but she fell into a coma and would not wake up for another month.
Lora: To find out what happens when Ella leaves the hospital and how she learns to manage endo pain as a young adult, be sure you listen to the second part of this episode.
100 Latina Birthdays is an original production of LWC Studios. It is made possible by grants from Healthy Communities Foundation, Kellogg Foundation, Woods Fund Chicago, the Field Foundation of Illinois, Pritzker Foundation, and the Chicago Foundation for Women. Mujeres Latinas En Acción is a series fiscal sponsor.
This episode was reported by Julia Binswanger. Juleyka Lantigua is the show's creator, executive producer and editor. Virginia Lora is a senior producer. Fact-checking by Fendall Fulton, mixing by Anne Lim and mixing and sound design by Tren Lightburn. Michelle Baker is our photo editor. Kori Doran is our marketing associate. Cover art by Reyna Noriega. For more information, resources, photos, annotated transcripts of all episodes and Spanish translations, visit 100latinabirthdays.com.
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CITATION:
Binswanger, Julia, reporter. “Learning to Live With Endo Pain, Part 1.” 100 Latina Birthdays. LWC Studios, September 30, 2024. 100latinabirthdays.com.
Produced by LWC Studios.
