Episode 7: Why did y'all offer this to me?

 

After nearly a decade of ER visits and dismissal from doctors, Samantha Denae was finally diagnosed with endometriosis. But then, she needed to figure out how to treat it. Over and over again she was told to get a hysterectomy. Black patients like Samantha are much more likely to receive a hysterectomy than white patients. But, why is that? This is the second episode in our two-part series about how race and class influence endometriosis diagnosis and treatment. We learn about how centuries of sterilization abuse and medical racism ignited the fight for reproductive justice, which continues on today.

Credits:

This episode was produced by Noa Fleischacker, Hannah Barg and Sararosa Davies, our Production Fellow. Our editors were Martina Abrahams Ilunga and Gabrielle Horton, make sure to check out their podcast, NATAL. We also received editorial support from Erisa Apantaku, Rebecca Magnan, Valeria Donoso, Sophia Lo, Daniela Tolchinsky, Judah Kauffman, Heather Guidone, Dr. Olga Bougie. Dr. Leonard Weather, Professor Julie Palmer, and Professor Zakiya Luna.

Our episode art this season is designed by Arielle Stein and our logo is from Gaby Escovar. Melissa Guller at Wit & Wire designed our current website. The music you hear is from Blue Dot Sessions.

Promo: Uninvisible Pod & Tight Lipped Zine “Opening Up”

Transcript

Episode 7: Why did y’all offer this to me?

Promo

Before we start, I want to recommend another podcast you might like. Uninvisible Pod is a show about chronic and invisible illness and disability. It’s an interview show hosted by Lauren Freedman, an activist, performer, and patient advocate. Lauren has had her own struggles with chronic illness and mental health and she’s interested in exploring different forms of healing. Every episode features conversations with a patient, caregiver or practitioner around a particular condition.

You can listen to Uninvisible Pod wherever you’re listening to this right now.

Episode

Noa: In our previous episode, we heard from Samantha Denae. For years, she struggled with heavy and painful periods. By age 18 she was in excruciating pain each month.

Samantha Denae: For the majority of my period, I have very heavy blood clots, like blood clots that are like the size of quarters...to the point where I had to always miss at least one day of school while I was having my cycle.

Noa: At age 24, after nearly a decade of dismissal and ER visits, Samantha was finally diagnosed with endometriosis. Endometriosis is a condition where tissue that’s similar to the uterine lining grows in other parts of the body. It causes chronic pelvic pain, digestive issues, pain with sex, and infertility. When she was first diagnosed, Samantha didn’t know a single other Black woman with endometriosis.

Samantha Denae: There’s not a lot of women that I’ve been able to find that look like me who have endometriosis. But I can’t be the only one. 

Noa: In our last episode, we learned about this long-standing myth -- that endometriosis is a condition only white wealthy women develop. And while this myth has been debunked multiple times, this history has made it much harder for Black patients to get diagnosed and treated for endometriosis.

Transition

Noa: This is Tight Lipped, a public conversation about a private type of pain. I’m Noa.

On this show we ask big questions about chronic vaginal and vulvar pain -- and pelvic floor dysfunction. We talk about painful sex. And shame. And the politics surrounding these conditions that we often keep secret. 

This is the second episode in our two-part series about how race and class have long influenced endometriosis care. Today we’re diving into Samantha Denae’s personal story. Samantha is 30 years old and she lives in Atlanta, Georgia. She’s a flight attendant by day, with a very full life outside of work, too. 

Samantha Denae: I work at my Dad’s restaurant on the weekends, it’s like two hours from Atlanta. I write books and movie scripts. I do a lot of stuff y’all. 

Noa: And she’s also one of many Black women living with endometriosis. 

Samantha Denae: I am a women’s health advocate, endometriosis advocate, period healthcare educator.

Noa: Today we’ll learn more about Samantha’s journey to manage her endo symptoms. We’re going to interrogate why Black patients are much more likely to receive a hysterectomy than white patients. Often, it’s the only treatment offered to Black patients with endometriosis. We’ll learn about how centuries of sterilization abuse and medical racism are still relevant. And how this dark history ignited the fight for reproductive justice, which continues on today.

In this episode, you'll hear us reference Black women, to be consistent with clinical research and data available on this topic. However, endometriosis can affect people of all genders and across the spectrum of gender identities, so you'll hear us refer to Black patients when not referring to data.

Transition

Noa: After learning that she might have endometriosis, Samantha tried a bunch of different treatments. She had laparoscopic surgery, which is when a doctor scrapes off the abnormal tissue. But the pain persisted. She tried a drug called Lupron, but that had horrible side effects -- leaving her exhausted, depressed, and struggling with hot and cold flashes. 

Samantha Denae: I will have night sweats. I will have to change my clothes in the middle of the night every night because everything will be drenched in sweat. 

Noa: And she lost her sex drive. Five months later, she got off of Lupron. Eventually, her doctor recommended trying birth control to manage her endo symptoms. 

She had actually tried birth control multiple times before -- back when she was a teenager, and before taking the Lupron. But when she’d taken it in the past, the side effects were hard to deal with. It caused breakthrough bleeding. Meaning bleeding in between periods. 

This time Samantha took the birth control pill, then the shot, and then the arm implant. Slowly her period started coming more frequently. It sometimes lasted for three weeks at a time. Then for a month and a half. Then for two months. 

Samantha Denae: And then my period went to 90 days. And it was 90 days for nine months out of the year. So I have a period for ninety days. It's not like my period was like light sometimes or sometimes didn't hurt, like it was heavy the whole 90 days. 

Noa: On average, a healthy period lasts about 3-7 days, so something wasn’t right here. 

Samantha Denae: I'm changing my pads, like every hour to every two hours. So I'm going through pads, like water. And pads are not cheap. And I have to buy like the 40 pack. And I'm going through the 40 pack in like two weeks.

Noa: It just kept getting worse. One time, she ended up in the emergency room thinking she needed a blood transfusion. They told her they didn’t know how to treat endometriosis. 

Samantha Denae:Like we can't help you we can give you some morphine. Sit here as long as you like with the pain medication until you're comfortable enough to go home. Like nobody had any answers for me.

Noa: Being on birth control, made Samantha’s period slightly more manageable. But as you might imagine, having a period that lasted for ninety days was disrupting everything in Samantha’s life. Especially her job. As a flight attendant, she would often fly five times in one day.  

Samantha Denae: I have to help you with your bag. I have to make sure everybody's buckled up, I have to do the safety demo. And then I have to pull out the cart and serve everybody. But if I sit down my pain is gonna kick my butt so bad that I'm not going to make it. So I don't have a choice but to keep walking up and down this aisle with a smile on my face, even though y'all don't know that I'm really dying inside.

Noa: There were times when Samantha just couldn’t fake it. She’d be stopped at an airport and have to call her manager. Once she was at the airport in Fort Lauderdale. She sat down in the middle of the floor at the gate.

Samantha Denae: It's like, Day 60 or 65 of my period and I'm like, I can't do this no more. Like, I've already been flying for probably like a week straight. So I need to go home. 

Noa: Samantha tried not to burst into tears. She felt like she might pass out. She just couldn’t take it anymore. But she dreaded coming off of birth control, since, without it, her period caused so much pain. As hard as it was, Samantha found it easier to deal with the 90 day period, than the painful period she’d had before birth control. 

Eventually the 90-day period became too much. It had taken control of her life. It was time to go off of birth control for good. Samantha didn’t know what to do next. According to the doctors she’d seen, her remaining options were drastic, with significant implications.

Doctors had told Samantha that pregnancy would help her endo symptoms.

Samantha Denae: Mostly I was told, as you get older, your period will get easier. Or once you have a baby, your period will become lighter. 

Noa: Samantha was in her early twenties. She wasn’t ready to have kids. As you heard in our last episode, pregnancy has often been seen as a cure for endo. 

Samantha Denae: This painful period that seems to be getting progressively worse as I get older. And the only way I'm going to be able to stop having a painful period is if I get pregnant and have a baby? 

Noa: Samantha was baffled by this. It felt counterintuitive. This was a step too far.

And, as it turned out a few years later, she learned that pregnancy wasn’t ever a real option for her. Endo can cause infertility issues, especially when it goes untreated for years. When Samantha was 28 years old, she had another laparoscopic surgery. During the procedure, the doctor used dye testing to check Samantha’s fallopian tubes. They wanted to see if there was anything that could block the egg from traveling to the uterus. When the doctor turned the lamp on, she couldn’t see any dye. Meaning, it was entirely blocked.

Samantha Denae: I was super heartbroken and I had to ask myself, like, why are you crying? Cause you said you didn't want any kids, but then I thought, no, Sam, you know, you really, you really want to have like at least one child in your life. I got sad because now all of a sudden I want to have kids. Then I felt like it was my fault that I had endo and that I couldn't have children .

Noa: Samantha was depressed for months and concerned about how it would impact her dating life and future relationships. She felt like she’d tried everything: laparoscopic surgery, Lupron, and numerous forms of birth control. And now she knew, she couldn’t get pregnant, even if she wanted to. There was one other option to treat her endometriosis that kept coming up: hysterectomy -- a surgery to remove her uterus.

Samantha Denae: You know, it's the weirdest thing, because they would say, well, you should try to have kids, but in the same breath they say, well, you should have a hysterectomy too. Every doctor I saw offered a hysterectomy. 

Noa: One of the first doctors Samantha saw early on tried to convince her, saying she wouldn’t have to worry about any more surgeries afterwards -- and she wouldn’t get her period anymore. But she knew it would come at a cost. Samantha explained that she wanted to try to still have children biologically, if she could.

Samantha Denae: Why did y'all offer this to me? And I'm only 24, 25. Hysterectomy that's just so final. Instead of listening to me, and saying, maybe we need to take this test, maybe we need to draw this amount of blood. Instead of doing all that you just want to take my womb. And say, that's the solution.

Noa: For all this talk about hysterectomies, the procedure isn’t even a cure for endometriosis. It’s sometimes recommended because hysterectomies stop your period, but that doesn’t mean that it will put an end to someone’s endo symptoms. Many people with endo continue having pain even after a hysterectomy. By definition, endometriosis is a disease that’s outside of the uterus, so just removing the uterus doesn’t solve the problem. It’s not a cure. Yet, for many Black patients, hysterectomies are the only option they are offered.

According to the Centers for Disease Control and Prevention, approximately 600,000 hysterectomies are performed each year in the US. A comparative study published in the American Journal of Public Health in 2009, found that Black women were four times more likely to undergo hysterectomy compared to white women -- even after controlling for factors like education, access to medical care, and geographic location. Other studies have found that the hysterectomy rate is twice or three times as high for Black women in the US compared to white  women.

Black patients undergoing hysterectomy are more likely to have complications, longer hospital stays, and high hospital charges. Hysterectomies are not only disproportionately performed on Black patients, they also exacerbate medical and economic disparities between Black and white women. Professor Whitney Robinson is actually looking at this very issue.

Whitney Robinson: Hysterectomy rates really peaked around 2001, 2002 and have been steadily declining. The rates were declining for everybody, but they were declining faster for white women than for black women. So even though there's a lot fewer hysterectomies, that disparity persists. 

Noa: Professor Robinson is an epidemiologist at UNC Chapel Hill’s School of Global Public Health. She studies racial differences in gynecology treatment, including why Black patients are more likely to have hysterectomies. According to her, social determinants of health, aka the conditions that shape where people live, learn, and work, play an important part. Access to healthcare is one of the factors.

Whitney Robinson: But there are some conditions where there's a variety of treatments that range from very invasive, like amputation or hysterectomy, all the way down to other treatments that might be less invasive, but maybe actually weirdly like more expensive because they're less likely to be covered or they take more communication where you have to really communicate with the patient and have them come back and try different things. Like it might be more time-intensive to do these less invasive things versus to say, let me just cut off the limb or take out the uterus, boom, we're done.

Noa: The big question that Professor Robinson’s research explores is the severity of symptoms in hysterectomy patients -- and whether or not the procedure was absolutely necessary and appropriate. 

Whitney Robinson: For some people, they should get a hysterectomy. Their symptoms are debilitating, nothing else is working for them. They want a hysterectomy, they need a hysterectomy and it's totally appropriate. And for some people it's like, why did that person get a hysterectomy? Something else should have been tried.

Noa: In other words, a hysterectomy is not a one size fits all solution. Especially not for endometriosis patients.

Whitney Robinson: And that's an issue of justice and access. And I think often the people who have the least money, the lowest quality insurance, the least access who might be, you know, marginalized, minorities, get the worst end of that, whatever it is. Sometimes the worst end is they rushed me into a hysterectomy and that wasn't even really my problem. 

Noa: And this leads us to a much broader systemic issue. 

Whitney Robinson: We have this really long history of not valuing the fertility of these women. There's this other strain of thought that's like reproductive justice centered that says, hey, there's a history of overuse and maybe that's still seeping into clinical practice.

Noa: What Professor Robinson is getting at is this long, dark history of white supremacy and population control under the guise of quote unquote women’s and reproductive health care. This might help us understand why Samantha and so many other Black endometriosis patients are only offered or even forced into getting a hysterectomy at higher rates than white patients.

But it also pushes us to learn more about the country's track record of sterilization abuse, and the reproductive justice movement that was born from it. We’re going to get into all of that after a quick break.

BREAK (PROMO)

Sarah: Hey everyone! It’s Sarah from Tight Lipped. I want to take a minute to tell you about an exciting new project at Tight Lipped, called Opening Up. Opening Up is a zine, or booklet, compiled from fifty contributors who shared their stories about living with chronic vulvovaginal and pelvic pain conditions. Their stories cover topics like stigma, secrecy, searching for diagnosis and treatment, mental health, and relationships. Head to our website, www.tightlippedpod.com to get your copy!

Transition

Loretta Ross: Well ever since the end of slavery, 1865. America has formed a narrative for itself, white America in particular, that there are too many Black and Brown babies, simply that. And so sterilization abuse has been a weapon of white supremacy from the beginning. 

Noa: That’s renowned feminist activist, Loretta Ross. She is a co-founder of SisterSong, a Southern-based advocacy organization and one of the leading organizations working for reproductive justice. Loretta is also a visiting professor at Smith College. 

Loretta Ross: I’ve been active in the women’s movement for about 50 years. I am a rape and incest survivor and a sterilization abuse survivor. I was sterilized when I was 23 and that’s about when I became active. 

Noa: Sterilization refers to any number of medical methods for birth control that leave a person permanently unable to reproduce -- including hysterectomies. Sterilization abuse is when a person is sterilized without their explicit consent. Or coerced into a sterilization procedure without understanding that it’s irreversible.

Sterilization abuse in the US was common long before Loretta and others became involved in the women’s movement. After the Civil War, Black men in the US won the right to vote. And, in reaction, government officials wanted to ensure a white majority and white dominance. They began implementing programs to control the size of the Black population.

By the early 1900s, the Eugenics movement gained momentum both in Europe and in the US. Eugenicists were interested in controlling groups they considered undesirable -- groups like low-income and poor folks, the disabled, and those with mental health illnesses. There was an aggressive, deliberate effort to prevent Black communities from growing. 

Loretta Ross: More than 22 states passed laws mandating the sterilization of Black women -- and other vulnerable women, women with disabilities or women who were considered unfit to be mothers, etc. Now, ironically, the Carrie Buck case by the Supreme court legalized sterilization as a practice because Carrie Buck was a white woman who was poor and a rape survivor. She was a housekeeper, she got impregnated by her boss's son. And because she was a rape survivor, they decided that she was mentally unfit and sterilized her. And that case made it all the way up to the Supreme court. 

Noa: The landmark 1927 case - Buck vs. Bell legalized forced sterilization across the US. Over the next fifty years, many Black patients and patients of color underwent unnecessary hysterectomies and other sterilization procedures. Sometimes these surgeries were called “Mississippi Appendectomies.” A term coined by activist Fannie Lou Hammer. Doctors prepared women for routine surgeries, like taking out the appendix. But instead -- or in addition to their routine surgery --  they’d sterilize them. Sometimes, medical students performed hysterectomies as practice. And, there were Black women who, if they didn’t undergo sterilization, doctors threatened to deny their medical care or have their welfare benefits taken away. 

For decades, these practices continued. And white women, in the women’s movement, didn’t address or give voice to the experiences of people who had suffered sterilization abuse. Black feminists didn’t see their lived experiences reflected in the agenda of the women’s movement. So, Loretta, and a group of other Black activists, founded SisterSong in the 1990s. That’s also when they coined the term “reproductive justice.” It was born out of an understanding that reproduction is not just biological, but is also shaped by political, social and economic forces. This framework addresses the embodied experiences of Black women and women of color, including the long history of forced sterilizations, and so many other forms of medical abuse.

Loretta Ross: Particularly after the end of slavery, but it didn't stop in terms of our modern standards. They had to bring a lawsuit to stop California prison authorities from sterilizing women as a condition of their incarceration. And literally telling them if you don't submit to this sterilization, we will stop visitation of your children. 

Noa: Unfortunately, sterilization abuse and medical racism is not a thing of the past -- it continues to be a problem today for citizens and undocumented people in America’s hospitals, and prisons. California made headlines, when researchers learned that from 1997 to 2013 approximately 1,400 people were sterilized in California prisons. 

And we see this ugly history rearing its head in endometriosis treatment. Samantha is familiar with the consistent pressure from doctors to have a hysterectomy. As she continued to navigate her own care options, she soon realized that there was a larger community of young Black women living with endo. And like her, many of them were looking for less invasive treatment. 

Samantha Denae: I guess it was when I started to do more research about like the medical society and how it is with Black women and how we’re being treated. I would hear it from other women who were going through the same thing and saying like they were getting offered hysterectomies right out the gate as well. And I just found that so, so troubling because we're all so young.

Noa: Samatha grew determined to find a solution. She eventually hit a point where she thought she might actually want to go through with the surgery after all. 

Samantha Denae: I did get to the place where I was, take the uterus, please.

I almost was starting to go into emergency rooms and like demanding, please just take it. Because I don't know what else I'm supposed to do and having a 90 day period is just not going to work for me for the rest of my life. 

Noa: She talked to her most recent doctor, a Black gynecologist who herself struggled with fertility issues. 

Samantha Denae: She was like you're young, you have like your whole life ahead of you. You don't know what could happen. So when I was, you know, please, please I just want to have a hysterectomy, I'm tired. She asked me a million times are you sure? When I got ready to schedule the surgery, are you sure that's what you want to do? Are you sure?

Noa: Right before Samantha had to complete the surgery scheduling process, she changed her mind. Her doctor’s questions sank in. She really didn’t want to have the hysterectomy. Instead, the two committed exploring other treatment options.

Now, at 30 years old, Samantha has tried just about every treatment available for endo. There are remaining options, like the highly advanced excision surgery, which can cost anywhere from a few thousand to well over ten thousand dollars, and it’s rarely covered by insurance. It’s not a cure, but it’s known as the best treatment available. 

Samantha Denae: I would have to pay an out of pocket expense and out-of-network deductible, which would be like almost $10,000 out of pocket. And the surgery is, you know way more than that. Everyone that I have met who has excision surgery they all say they are able to live their life. It's like giving your body almost kind of a fresh start.

Noa: For now, excision surgery is unattainable for Samantha, and many other Black endo patients who don’t have $10,000 sitting around for this one surgery.

But Samantha hasn’t given up. She’s turned to holistic treatments to manage her pain. She’s changed her diet and takes supplements, like folic acid and magnesium. She makes cold-pressed vegetable and fruit juices and she’s learned about different types of herbs. And, to an extent, it’s helped. While Samantha still has endometriosis, her pain and symptoms are much more manageable. 

Samantha Denae: I'm not cured, you know they don't have a cure for endometriosis, but I am healing from it, like I don't have flare-ups during the month, I have my period, I can use one pad for the whole day on my period, I minimally cramp. And then that's it. Like I don't go through some of the other symptoms that I was having beforehand.

Noa: Samantha is now an endometriosis advocate, working alongside other Black patients to address medical racism in the healthcare system. She educates high school students about identifying endo symptoms early. She co-hosts a podcast, called The V Dot, about endometriosis care for Black women. And, she works with an organization called Endo Black, which brings together Black women and women of color who have endometriosis. Along with other activists, she co-created the Black Women’s Health Coalition to raise awareness about racial bias and equity.

We’ve heard in this episode, and the previous episode, how Black patients face obstacles to care every step of the way. When trying to get a diagnosis, Samantha and others are still dealing with the remnants of the myth that Black patients don’t get endo. And when seeking treatment, they continue to be offered invasive quick-fixes, and even permanent ones like hysterectomies, which fail to solve the whole problem. Today, Samantha and her fellow endo advocates join Loretta Ross, SisterSong, and countless others in this larger fight for reproductive justice: which at its core is a fight for Black patients to have their pain taken seriously, for expanded treatment options, and for agency over their care, treatment and reproductive health.

Samantha and others in the Black endometriosis community can’t and shouldn’t bear the burden of this fight alone. You can learn more about ways to get involved and support the V Dot podcast, Endo Black, the Black Women’s Health Coalition, and SisterSong, in our show notes on tightlippedpod.com. We encourage you to donate and support the Black endometriosis activists who work every day for an end to medical racism, and access to effective treatment and compassionate care.

Credits

Thanks for listening! To learn more, check out the episode page on our website - tightlippedpod.com. This episode was produced by me, Noa Fleischacker, Hannah Barg and Sararosa Davies, our Production Fellow. Our editors were Martina Abrahams Ilunga and Gabrielle Horton, make sure to check out their podcast, NATAL, wherever you’re listening. We also received editorial support from Erisa Apantaku, Rebecca Magnan, Valeria Donoso, Sophia Lo, Daniela Tolchinsky, Judah Kauffman, Heather Guidone, Dr. Olga Bougie. Dr. Leonard Weather, Professor Julie Palmer, and Professor Zakiya Luna.

We’re also incredibly appreciative of the professionals who gave their time and expertise to this episode. Our episode art this season is designed by Arielle Stein and our logo is from Gaby Escovar. Melissa Guller at Wit & Wire designed our current website - you can check it out at tightlippedpod.com. The music you hear is from Blue Dot Sessions. 

We’re so grateful to have the support of our sponsors. This season is supported by the Dorot Fellowship Alumni Leadership Award, the National Vulvodynia Association and The Vagina Collective. 

Thank you so much and we’ll be back soon.

 
Hannah Barg