"It's like your body is fighting against you": a cross-sectional qualitative interview study of quality of life in U.S. Black women diagnosed with endometriosis

This study utilized cross-sectional qualitative semi-structured in-depth interviews to examine endometriosis related quality of life among adult Black women of reproductive age living with endometriosis in the U.S. A mixture of purposive and snowball recruitment methods were used to recruit interview participants using two online platforms. We first ran a Facebook advertisement campaign, published by the Emory Center for Reproductive Health Research in the Southeast (RISE) account, for two weeks spanning late August and early September 2021 (see Appendix A). We also leveraged Research Match, a research recruitment website that invites potential participants within an existing database to view our study recruitment advertisement information based on specific eligible health and demographic characteristics. Interested individuals were directed to a REDCap survey link to further assess eligibility for the study and provide contact information. Study eligibility criteria included self-identification as: (1) a Black woman; (2) between the ages of 18 and 45; (3) living in the U.S. and (4) diagnosed with endometriosis. Screening survey participants who met the eligibility criteria were contacted to schedule a study interview. This study was conducted in the U.S. In this country, endometriosis is normally diagnosed and treated by a gynecologist, obstetrician-gynecologist, primary care physician and/or reproductive endocrinologist. Laparoscopy is the clinical ‘gold standard’ through which an endometriosis diagnosis can be confirmed and treated, while clinical management of pain and other symptoms include hormonal birth control and pain medicine [ 23 – 25 ]. Endometriosis care can be costly even with access to health insurance – on average, endometriosis patients spend at least $26,000 USD more on healthcare costs in the 5 years before and after diagnosis than people without endometriosis [ 26 ]. Furthermore, provider availability might impact people’s ability to access timely and high-quality care for endometriosis; as of 2022, over half of U.S. counties do not have hospital-based obstetric care [ 27 ]. Interviews were conducted between September and October 2021 in a private Zoom meeting room at times convenient for the participants. Verbal consent was given by every participant prior to the interview. Interview discussions were facilitated by an in-depth interview guide (Appendix B) and focused in five areas: (1) knowledge and experiences of endometriosis; (2) impacts on quality of life; (3) experiences with navigating the healthcare system; (4) patient-provider interactions; and (5) perceptions on self-advocacy and resiliency. The discussions lasted 35 min on average (range: 20–75-minutes), were audio and video recorded, and transcribed by Landmark Associates, Inc. Upon completion of the interview, a $30 electronic VISA gift card was provided to each participant. Using a thematic data analysis approach informed by a blend of elements from the Braun and Clarke analysis framework and the Castleberry and Nolen model, data were analyzed in several stages [ 28 , 29 ]. Transcriptions were reviewed iteratively by M.D. as she completed interviews to inform assessment of meaning saturation. By 18 interviews, we achieved a nuanced understanding of participant reflections on endometriosis’ related quality of life, and no new themes were observed, consistent with empirical assessment of and guidance around effective sample sizes for saturation in qualitative research, particularly involving homogenous samples [ 30 ]. However, due to indication of participant ineligibility (i.e., not residing in the United States or no indication of endometriosis diagnosis) during interview discussion despite having indicated otherwise at screening, two interviews were removed from the final analytic sample, resulting in 16 total interviews. Next, M.D. developed a preliminary codebook using deductive and inductive strategies. Deductive codes were developed from the interview guide and inductive codes developed through reading the transcripts, familiarization with the data, and generating ideas from patterns revealed across the dataset. Advising research team members reviewed a document listing the preliminary codes and definitions for assessment of face and content validity in iterative feedback sessions [ 31 ]. M.D. then revised the codebook and coded extracts – initially of more granular units of data - throughout each transcript using the updated codebook via MAXQDA 2022 qualitative data analysis software [ 32 ]. At the completion of coding, M.D. generated themes by collapsing codes that were similar and disregarding codes that were not relevant to the goals of the research (Appendix C). M.D. then defined themes from reviews of coded data, produced a preliminary report of results, and presented them to W.R., S.N., and departmental colleagues as a form of peer debriefing for quality control [ 33 ]. The final number of themes and their descriptions evolved through this process, for example, to consider all themes (including the healthcare interactions and lessons learned) as related to (and categorized under) the quality-of-life domain umbrella versus only physical and psychosocial experiences. All authors identify as cis-gender women of color; four are second-generation American, one is first-generation American. Three study team members are Black women and two are Asian (Indian American) women. Two research team members live with chronic health conditions that affect their reproductive capacity, including endometriosis. Collectively, the authors comprised two academic faculty, one staff member, and two graduate students (during the time that most study activities were conducted), with professional expertise in public health, social science, sexual and reproductive health, maternal and child health, qualitative and mixed methodologies. Thus, the research team included both insider and outsider status and knowledge regarding the lived experiences of Black women living with endometriosis. The team also varied in career stage. From the study design to the dissemination phase, team members implemented strategies to encourage reflexivity. The research concept was motivated in part by M.D.’s experience with difficult menstruation, challenges in related healthcare navigation, and connected quality of life concerns; and her curiosity about whether and how her embodied and experiential knowledge reflected that of other Black women with endometriosis. M.D. also developed the research plan and data collection materials through iterative constructive review by individuals external to the current research team as part of a graduate school course, and through iterative discussion with two advising study team members. M.D. further conducted all interviews, with sensitivity to the importance of reciprocity in building rapport and trust with research study participants. Our team also employed reflexive discussions iteratively, throughout the study’s development – from design to analysis, which also allowed us to identify and mitigate potential biases.

All participants identified as women ( n =16), with a majority of participants ranging between the ages of 36–45 ( n  = 8). Participant geographic location varied across regions of the United States: Northeast ( n  = 3), West ( n  = 3), Midwest ( n  = 3), and South ( n  = 7). Additionally, participants identified different forms of endometriosis diagnosis: clinical diagnosis by a medical professional ( n  = 11), laparoscopy ( n  = 6), ultrasound ( n  = 4), MRI ( n  = 2), and other ( n  = 2). Table  1 provides further description of the participant demographics. Five main themes were identified from the interview data: (1) the physical symptoms of endometriosis, (2) psychosocial impacts of endometriosis, (3) approaches to navigating healthcare experiences, (4) self-advocacy and resiliency by any means necessary, and (5) lessons learned and a call to action. In the following descriptions of each theme, the interviewees were given pseudonyms to ensure confidentiality. Table 1 Study participant demographics Characteristic Total Participants N (%) Age 18–25 1 (6.25) 26–35 7 (43.75) 36–45 8 (50) Age of Diagnosis 18–25 6 (37.5) 26–35 7 (43.75) 26–45 3 (18.75) Region of Residence Northeast 3 (18.75) West 3 (18.75) Midwest 3 (18.75) South 7 (43.75) Completed Level of Education High School 1 (6.25) Some College 6 (37.5) Graduated College 3 (18.75) Graduate Degree 6 (37.5) Method of Diagnosis* Clinical 11 (62.5) Laparoscopy 6 (37.5) Ultrasound 4 (25) MRI 2 (12.50) Other 2 (12.50) Participants reported more than one method ofdiagnosis Study participant demographics Participants reported more than one method ofdiagnosis Physical symptoms of endometriosis varied widely across the sample, including: vomiting, pelvic pain, headaches, pain during sex, heavy bleeding, constipation, rectal pain, and blood clots. Many participants detailed early experiences as teenagers with indeterminate symptoms that were later identified as related to endometriosis. “I just thought I had really bad periods. Now that—well , now that I know that that was a huge sign. I just had horrific periods since the time that I was 12 , which is when I got my first menstrual.” - Casey26–35 years old. “I just thought I had really bad periods. Now that—well , now that I know that that was a huge sign. I just had horrific periods since the time that I was 12 , which is when I got my first menstrual.” - Casey26–35 years old. These physical symptoms were often intense, a result of chronic and debilitating pain, in areas of the body particularly in the uterus, but radiating to other areas, such as knees, limbs and stomach. They were often accompanied by additional symptoms (e.g. nausea, lightheadedness). Participants described the intensity of the pain as in the following example: “I was vomiting , like , had headaches , chills. I mean , it was like I had this—like , I was literally—it sometimes felt like my stomach was just going to burst open. And it’s like it was the most , like , painful bloating I’ve ever experienced. I started having this , like , intense , like , pressure where I felt like my stomach was gonna explode , and it was , like , so painful I could barely talk sometimes. I couldn’t , like , stand up straight.” - Andy , 26–35 years old . “I was vomiting , like , had headaches , chills. I mean , it was like I had this—like , I was literally—it sometimes felt like my stomach was just going to burst open. And it’s like it was the most , like , painful bloating I’ve ever experienced. I started having this , like , intense , like , pressure where I felt like my stomach was gonna explode , and it was , like , so painful I could barely talk sometimes. I couldn’t , like , stand up straight.” - Andy , 26–35 years old . These physical manifestations of endometriosis corresponded with psychosocial implications, as described in the following section. Across the sample, participants described juxtaposing feelings following diagnosis by a healthcare professional. On one end, participants described feeling concerned about their health, defeated and angry regarding the length of time that it took to arrive at a diagnosis and the serious health circumstances or events (e.g., “loss” of fallopian tubes, removal of ovaries, etc.) that they saw as potentially preventable with earlier diagnosis. “You know , like , I could’ve gotten the proper intervention early on , who would have known what to do. I would’ve known what the problem was my whole life. And so then I wouldn’t have had all this agony of , like , trying to have a baby and , like , the misery that comes with infertility and , like , and not knowing what’s wrong , and , like , why it’s not working. Um , like , I could’ve saved years of pain and all the weeks of my life—all the time that I’ve lost , all the things that I couldn’t do because I was in pain could’ve been avoided.” - Andy , 26–35 years old . “You know , like , I could’ve gotten the proper intervention early on , who would have known what to do. I would’ve known what the problem was my whole life. And so then I wouldn’t have had all this agony of , like , trying to have a baby and , like , the misery that comes with infertility and , like , and not knowing what’s wrong , and , like , why it’s not working. Um , like , I could’ve saved years of pain and all the weeks of my life—all the time that I’ve lost , all the things that I couldn’t do because I was in pain could’ve been avoided.” - Andy , 26–35 years old . On the other hand, participants also expressed relief and validation after their diagnosis, which marked a turning point in often long and confusing paths to diagnosis in which some women experienced limited releif or peace of mind related to their symptoms “I was happy that they had something called , um , endometriosis because I was just in a lot of pain and I just , I heard about it before , and I knew it wasn’t real bad. I thought it maybe had been cancer or something like that. And I was just happy that it wasn’t cancer basically and that I was gonna live , and I wasn’t gonna die , and it was something that was treatable - Didi , 36–45 years old . “I was happy that they had something called , um , endometriosis because I was just in a lot of pain and I just , I heard about it before , and I knew it wasn’t real bad. I thought it maybe had been cancer or something like that. And I was just happy that it wasn’t cancer basically and that I was gonna live , and I wasn’t gonna die , and it was something that was treatable - Didi , 36–45 years old . Psychosocial well-being encompasses mental, social, emotional, and spiritual dimensions of what it means to be healthy. Participants mentioned a range of impacts of endometriosis such as impact on their social life, mental/emotional health, intimate relationships, and their perceptions of themselves. Participants descriptions of the impact of endometriosis on social life often detailed adjustments to day-to-day life routines, canceled plans and interruption of important events during times of intense physical symptoms. These impediments were met with lack of understanding by social networks in cases, affecting social relationships. The term “silent killer” was used by one participant to describe how endometriosis symptoms are not obviously seen on the outside of the body, by others, affecting social dynamics. When women chose to socially interact despite their challenging physical condition, mental and physical preparation was required to interact with others. Alternatively, women chose to isolate during their worst “flares” at times, as described here: “I like to be a pretty active person. Like , I like to be social and interact with people and also be out in nature. And so, I felt as if , like , once those flares happened , I feel as if , like—I feel like a decent amount of my day is kinda taken away , or at least-or at least , like , I’ll be having a fun time , then it’ll be like , ‘Surprise , endometriosis.’ - Angie , 18–25 years old . “I like to be a pretty active person. Like , I like to be social and interact with people and also be out in nature. And so, I felt as if , like , once those flares happened , I feel as if , like—I feel like a decent amount of my day is kinda taken away , or at least-or at least , like , I’ll be having a fun time , then it’ll be like , ‘Surprise , endometriosis.’ - Angie , 18–25 years old . Additionally, many participants described their experiences with intrusion of endometriosis symptoms upon their intimate relationships. Women in the study shared that painful sex commonly impacted the degree of intimacy within their marriages, other committed relationships and casual sexual relationships. One interviewee shared: “I’m thankful that he’s [my husband is] patient , but there were times when it could be pretty painful [intercourse] intimately. And so , um , not being able to have those experiences , uh , sometimes I may have wanted to… [but] it kinda can put a damper on your relationship.” - Mandy , 36–45 years old . “I’m thankful that he’s [my husband is] patient , but there were times when it could be pretty painful [intercourse] intimately. And so , um , not being able to have those experiences , uh , sometimes I may have wanted to… [but] it kinda can put a damper on your relationship.” - Mandy , 36–45 years old . Participants relatedly described experiences with anxiety, depression, fear and hopelessness connected to their journeys with endometriosis. One participant goes into detail about the impact of her physical symptoms of extensive heavy bleeding on their emotional health. “So, it was like I’d have to make what I call super pads just to get through a period , then run to the bathroom , hoping I had enough time. It was-it was just that-that made me really kinda depressed , and I’d wanna stay home from school ’cause it’s like , what’s the point of , like , hoping I make it to the bathroom. And , and then at nighttime , I’d make like those super pads , where it’d be like eight pads put together.” - Toya , 26–35 years old . “So, it was like I’d have to make what I call super pads just to get through a period , then run to the bathroom , hoping I had enough time. It was-it was just that-that made me really kinda depressed , and I’d wanna stay home from school ’cause it’s like , what’s the point of , like , hoping I make it to the bathroom. And , and then at nighttime , I’d make like those super pads , where it’d be like eight pads put together.” - Toya , 26–35 years old . Another participant described their frustrations with having to plan their life around their period, even describing feelings such as depression and feeling left out by others who did not have to deal with the same burden of preparation or forego plans. “[I feel] frustrated and sometimes even depressed because I’ll sit there and be like why is it happening to me or , like , why is it that I’m the one that has the-the horrible periods and , like , everybody , they’re like they’re fine. They’re going to the beach. They’re doing whatever. And , like , for me , it’s like when is-when is my period coming? Oh no , I’m not gonna be available that day. Like , you’ll find me—I’m on the couch or in my bed with a heating pad for the whole day.” - Ike , 26–35 years old . “[I feel] frustrated and sometimes even depressed because I’ll sit there and be like why is it happening to me or , like , why is it that I’m the one that has the-the horrible periods and , like , everybody , they’re like they’re fine. They’re going to the beach. They’re doing whatever. And , like , for me , it’s like when is-when is my period coming? Oh no , I’m not gonna be available that day. Like , you’ll find me—I’m on the couch or in my bed with a heating pad for the whole day.” - Ike , 26–35 years old . Participants also remarked about feelings of loneliness related to weathering difficult symptoms in isolation and resulting from patterns of cancelation of or non-participation in social plans during periods of intense physical symptoms. Interviewees felt hurt when that experience was met with lack of understanding by members of their social circles, as reflected in the quote below. “It hurts you psychologically because you’re in constant pain, and nobody understands it. Um, you know, they’ll ju—“Oh, you just got cramps.” No, these aren’t cramps. These are somethin’ else, you know.”- Aliya, 36–45 years old . “It hurts you psychologically because you’re in constant pain, and nobody understands it. Um, you know, they’ll ju—“Oh, you just got cramps.” No, these aren’t cramps. These are somethin’ else, you know.”- Aliya, 36–45 years old . Further, participants discussed the impacts of endometriosis on their self-perception. Common topics of discussion included whether and how endometriosis symptoms and diagnosis altered women’s sense of their overall health, their health relative to others, and their body image. We heard shared feelings of frustration and even loss related to how women feel endometriosis has changed what used to be. “I used to think I was invincible. And , like I said , I was in , like , phenomenal health , and , um , I was invincible. And now I’m like I get a little bit scared of my body sometimes because , you know , while I think it’s still great , I feel like it could fail me , and I never know what’s gonna happen next. And so that kind of bugs me , um , because , like , you wanna check that box of excellent health. And I don’t. I’m like , oh , it’s in good health” - Rica , 36–45 years old . “I used to think I was invincible. And , like I said , I was in , like , phenomenal health , and , um , I was invincible. And now I’m like I get a little bit scared of my body sometimes because , you know , while I think it’s still great , I feel like it could fail me , and I never know what’s gonna happen next. And so that kind of bugs me , um , because , like , you wanna check that box of excellent health. And I don’t. I’m like , oh , it’s in good health” - Rica , 36–45 years old . Some participants mentioned how endometriosis has impacted their sense of womanhood, with respect to the degree to which their expectations around menstrual cycles, sexual activity, and fertility in particular met reality. “[Endometriosis] just it makes you kinda resent your body….Um , uh , it makes you—like I said , it makes you question yourself as a woman.” - Talia , 26–35 years old . “[Endometriosis] just it makes you kinda resent your body….Um , uh , it makes you—like I said , it makes you question yourself as a woman.” - Talia , 26–35 years old . Interactions with the healthcare system and healthcare providers also informed women’s expectations and interpretations of their reproductive experiences. Discussions of experiences with healthcare providers who diagnosed and contributed to management of endometriosis, many participants discussed missed opportunities for recognition of and care responsive to their early-stage symptoms by multiple parties. Healthcare professionals were among members of participants’ close networks mentioned in participant reports their symptoms were minimized as “something women just go through”. Other reports by participants included experiences with presenting for care multiple times with persistent symptoms, without a subsequent resolution, not being given diagnostic tests and being told that their needs didn’t rise to a level of concern for action. One participant was told to return when they were ready for conception, and if they “have a problem conceiving, come back and then we’ll worry”. Participants described disappointment in the time it took to reach a diagnosis. Even following diagnosis, participants described continued experiences with being dismissed, misunderstood, and dissatisfied with the quality of care that they received while trying to manage their condition, as reflected in the below experience: “But I saw a male doctor , and he was just , like , um , you know , “You’re only experiencing , like , this pain during your period.” “If you’re fine elsewhere we don’t have to do anything about it.” And I was like , that doesn’t seem right to me ’cause if my endometriosis is so bad , like , I don’t wanna wait until I’m doubled-over in pain in an emergency situation” - Dina , 36–45 years old . “But I saw a male doctor , and he was just , like , um , you know , “You’re only experiencing , like , this pain during your period.” “If you’re fine elsewhere we don’t have to do anything about it.” And I was like , that doesn’t seem right to me ’cause if my endometriosis is so bad , like , I don’t wanna wait until I’m doubled-over in pain in an emergency situation” - Dina , 36–45 years old . When participants did receive relief for symptoms, birth control was a commonly discussed form of treatment described across the interviews. Some participants successfully pursued birth control as a form of treatment for their symptoms. However, many participants shared the perception that birth control only masked their pain, referring to it as an “easy fix”, with a few participants desiring that a doctors look more deeply into additional forms of treatment. As one interviewee described: “And they’re so quick to throw the birth control pill at you and say here you go. Oh , it’s just here you go. Here’s the birth control pill. And I’m like , well , this isn’t working”. - Rica , 35–45 years old . “And they’re so quick to throw the birth control pill at you and say here you go. Oh , it’s just here you go. Here’s the birth control pill. And I’m like , well , this isn’t working”. - Rica , 35–45 years old . Another participant with a similar experience felt frustrated with medical provider inattention to her unique experiences with endometriosis management in assumptions that birth control would work for her just because it had worked for someone else. Some participants shared experiences with more egregious insensitivity and stigma around their endometriosis experienced within the health care system and enacted by health care providers. In one such example, a participant shared: “And so, he’s going through all the symptoms that I have. And he’s like , ‘Wow okay , so you have pain , ’ um , ‘you have all this pain , blah , blah , blah.’ And he says to me , ‘Oh , you’re married , ’ you know , all these regular questions. And he’s like , you know , he was like , ‘Wow , you’re really damaged. Your husband needs to put you back on the shelf.’ And he had a intern in there and she was like—yeah , I-I think an intern. She was , like , learning , you know. And she was like—she mouthed to me when he turned around , she said , ‘I’m so sorry.‘” - Casey , 26–35 years old . “And so, he’s going through all the symptoms that I have. And he’s like , ‘Wow okay , so you have pain , ’ um , ‘you have all this pain , blah , blah , blah.’ And he says to me , ‘Oh , you’re married , ’ you know , all these regular questions. And he’s like , you know , he was like , ‘Wow , you’re really damaged. Your husband needs to put you back on the shelf.’ And he had a intern in there and she was like—yeah , I-I think an intern. She was , like , learning , you know. And she was like—she mouthed to me when he turned around , she said , ‘I’m so sorry.‘” - Casey , 26–35 years old . Participants connected these negative experiences, from early dismissal of symptoms to bedside manner, to health outcomes – from delays in care, distrust in the health care system, and skepticism around the ability of the health care system to meet their needs. In contrast, participant discussions shone a light on positive interactions with medical professionals as well. Participants shared experiences with having questions answered, feeling cared for, and seeing their doctors go the extra mile for them. “Uh , I felt listened to. I felt heard. Um , there-there were a few appointments that I can remember still feeling like okay , well , … there wasn’t always an immediate solution , you know. But at least I knew that okay , well maybe there’ll be some resolution. Maybe , you know , something will be done. I’ll find out something… But feeling like there was a path…” - Mandy , 36–45 years old . “Uh , I felt listened to. I felt heard. Um , there-there were a few appointments that I can remember still feeling like okay , well , … there wasn’t always an immediate solution , you know. But at least I knew that okay , well maybe there’ll be some resolution. Maybe , you know , something will be done. I’ll find out something… But feeling like there was a path…” - Mandy , 36–45 years old . Participants were asked about their perceptions of self-resilience in the process of living with and managing endometriosis. Participants shared varied journeys, spanning difficulties of resilience to the necessity of it, as reflected in the following participant quote: “And so now I’m kind of trying to keep the mindset that-that’s what I need to do , um , but it’s hard , right , ’cause there are days where I just wanna just give up and not pursue anything. But I-but I keep thinking , like , I can’t do that because I don’t wanna be put in a situation where one day it gets really bad , and I’m , you know , I can’t work or whatever.” - Dina , 36–45 years old . “And so now I’m kind of trying to keep the mindset that-that’s what I need to do , um , but it’s hard , right , ’cause there are days where I just wanna just give up and not pursue anything. But I-but I keep thinking , like , I can’t do that because I don’t wanna be put in a situation where one day it gets really bad , and I’m , you know , I can’t work or whatever.” - Dina , 36–45 years old . In these discussions, participants provided detail about what aspects of their journey with endometriosis they see as embodying resilience. Key sentiments include that, “[endometriosis] has made me stronger”, “I didn’t stop fighting”, and being motivated by loved ones to fight for themselves. Along these lines, one woman shared: “I feel like-I feel like I’m resilient because I didn’t give up”. - Nia , 26–35 years old . “I feel like-I feel like I’m resilient because I didn’t give up”. - Nia , 26–35 years old . Participants were asked to describe their experiences with self-advocacy in the management of their endometriosis. The women in this study had a range of experiences with self-advocacy via self-driven actions taken for their health. Included among these were staying organized (e.g., by keeping a digital file folder with notes and documentation of doctor and even insurance company interactions), speaking up for themselves, finding the right doctor and doing personal research. Examples of the latter are shared by a participant below: “So , I use that system for everything. For my job , if I feel like my job doesn’t value me , then I look for somethin’ elsewhere. If I feel like , um , y-y-you know , m-my doctor doesn’t care about my needs or i-is-or is not-is not listening to my needs , then I have to go some elsewhere. So , um , always be your biggest advocate , um , and once you do that , you will find your right fit. And your right fit will work for you. They will be for you. Um , so , and if you have those three things , you will be successful , and you will find the right treatment plan for you. You will find , um , the right answers for whatever that is that you’re trying to do. Um , but you have to do your work for yourself as well”. - Talia , 26–35 years old . “So , I use that system for everything. For my job , if I feel like my job doesn’t value me , then I look for somethin’ elsewhere. If I feel like , um , y-y-you know , m-my doctor doesn’t care about my needs or i-is-or is not-is not listening to my needs , then I have to go some elsewhere. So , um , always be your biggest advocate , um , and once you do that , you will find your right fit. And your right fit will work for you. They will be for you. Um , so , and if you have those three things , you will be successful , and you will find the right treatment plan for you. You will find , um , the right answers for whatever that is that you’re trying to do. Um , but you have to do your work for yourself as well”. - Talia , 26–35 years old . Self-advocacy was collectively perceived as a double-edged sword amongst participants, with some women describing positive sentiments towards self-advocacy such as feeling empowered and having agency over their body. As one participant shared, “ It make me feel , like , good , like , I’m doin’ somethin’ right – for myself” - Kia , 26–35 years old . Other participants extended this notion and specifically spoke to how advocating for themselves may be better for the long run. On the other end, some participants described negative thoughts attached to having to advocate for themselves, such as tiredness with having to explain themselves and detail their – sometimes decades long – history multiple times over a series of doctor visits. Some participants additionally shared frustration around the complexity of self-advocacy around managing a chronic condition, as illustrated by the following: “I would say frustrated because , like you know , it’s like you always keep getting into these hurdles. Like just when you think that you fixed something , it’s like something else comes up in the mix. Um , but at the same time , it’s also… like , alright , I gotta get it done. Nobody else is gonna do it for me. And , you know , just go out and do it , basically , you know?” - Ike , 26–35 years old . “I would say frustrated because , like you know , it’s like you always keep getting into these hurdles. Like just when you think that you fixed something , it’s like something else comes up in the mix. Um , but at the same time , it’s also… like , alright , I gotta get it done. Nobody else is gonna do it for me. And , you know , just go out and do it , basically , you know?” - Ike , 26–35 years old . When asked about lessons that participants learned about themselves in the management of endometriosis, many participants reiterated recognition of their own resiliency as a lesson learned. Although living with endometriosis affected women’s quality of life, they learned how to navigate the challenges presented by endometriosis. Similarly, despite the impact that endometriosis had on many participants’ body image, it also gave some women an appreciation for the strength of their body. Accordingly, one participant describes: “And I feel like being a woman who has endometriosis is kinda like my body is still a marvel. Like I’ve learned to still be amazed at all that my body does , even with the issues and the problems. Like , I can still probably have children. Like , I have learned to kind of respect my body more , even though it’s doin’ this thing to me every month , I’m still very amazed , like , at what a woman’s body can do. Like , a lot of respect for my body has been earned”. - Toya , 26–35 years old . “And I feel like being a woman who has endometriosis is kinda like my body is still a marvel. Like I’ve learned to still be amazed at all that my body does , even with the issues and the problems. Like , I can still probably have children. Like , I have learned to kind of respect my body more , even though it’s doin’ this thing to me every month , I’m still very amazed , like , at what a woman’s body can do. Like , a lot of respect for my body has been earned”. - Toya , 26–35 years old . Socially, given the aforementioned “silent” nature of the endometriosis experience, living with the condition taught some women not to judge other people by what is visible alone. Finally, endometriosis contributed to growth in communication for some participants, as one interviewee described their experience of having to communicate these issues with their romantic partner over time. “It’s been , like , a year since my diagnosis , I’m a lot more communicative with my partner , and he’s very understanding of what’s going on and is very respectful… I think that that’s helped a little bit with [my] self-perception , but when I first started out , there was that insecurity” - Angie , 18 to 25 . “It’s been , like , a year since my diagnosis , I’m a lot more communicative with my partner , and he’s very understanding of what’s going on and is very respectful… I think that that’s helped a little bit with [my] self-perception , but when I first started out , there was that insecurity” - Angie , 18 to 25 . To close the interview, participants were asked to describe what advice they would give to those who do not know much about endometriosis; this included healthcare professionals and Black women in a similar health journey. Advice to healthcare professionals focused on the importance of believing in and listening to patients, understanding of patients’ pain, and pursuing treatment for patients that is holistic and culturally sensitive. Along those lines, one participant expressed: “Don’t-don’t say it’s-it’s-it’s in their head. Um , you know , just listen because what-what-what harm is it gonna do to listen and look into it? Even if it’s only , um-even if it’s one doctor’s appointment , that could make a difference. You know , listen and-and-and don’t disregard a person ever.” - Mandy , 36–45 years old . “Don’t-don’t say it’s-it’s-it’s in their head. Um , you know , just listen because what-what-what harm is it gonna do to listen and look into it? Even if it’s only , um-even if it’s one doctor’s appointment , that could make a difference. You know , listen and-and-and don’t disregard a person ever.” - Mandy , 36–45 years old . One participant suggested that collaboration between the endometriosis community and healthcare professionals could be fruitful for improvement upon the healthcare quality and treatment success: “So, what they need is someone from the endo community to get in contact with the people doing the conferences so they can have a little conference , you know , presentation or seminar at these medical things , so that the OBGYNs and even the hematologist and the PCPs are more aware of endo. Because it’s not—I’ve talked to a lot of doctors , you know , in other specialties”. - Jo , 36–45 years old . “So, what they need is someone from the endo community to get in contact with the people doing the conferences so they can have a little conference , you know , presentation or seminar at these medical things , so that the OBGYNs and even the hematologist and the PCPs are more aware of endo. Because it’s not—I’ve talked to a lot of doctors , you know , in other specialties”. - Jo , 36–45 years old . To fellow Black women living with endometriosis, participant advice included: advocating for yourself, listening to your body, self-education, and finding the right doctor. The below participant excerpt well illustrates the latter: “do your own research. Um , and then , not only that , to do , you know—uh , find your fit with your doctor. Um , the first doctor , you know , you meet , you don’t always have to go to —you have to shop around for them too —you are hiring them as well. You know what I’m sayin’? So , never forget that. You never have to just settle with a doctor either , um , because that’s a relationship that you buildin’ as well. So , …I treat everything , every big thing in my life like a relationship , including jobs , doctors , um , anything. Um , if you don’t treat me right , if you don’t listen to me , if I feel like you don’t have my best interests , if you don’t value me , we can’t work.” - Talia , 26–35 years old . “do your own research. Um , and then , not only that , to do , you know—uh , find your fit with your doctor. Um , the first doctor , you know , you meet , you don’t always have to go to —you have to shop around for them too —you are hiring them as well. You know what I’m sayin’? So , never forget that. You never have to just settle with a doctor either , um , because that’s a relationship that you buildin’ as well. So , …I treat everything , every big thing in my life like a relationship , including jobs , doctors , um , anything. Um , if you don’t treat me right , if you don’t listen to me , if I feel like you don’t have my best interests , if you don’t value me , we can’t work.” - Talia , 26–35 years old .

Endometriosis impacts an estimated 10% − 15% of women of reproductive age worldwide [ 1 , 2 ]; in the United States (U.S.), its prevalence ranges from 6.5 to 11%, affecting approximately 6.5 million women of reproductive age [ 3 , 4 ]. The chronic condition is characterized by the presence of endometrial-type tissue outside of the uterine cavity, which presents in signs and symptoms that include but are not limited to heavy menstrual bleeding, chronic pelvic pain, dysmenorrhea, pain during sexual intercourse, and infertility [ 5 – 9 ]. Endometriosis can have significant impacts on emotional well-being, affect intimate relationships, social functioning, and work life [ 10 , 11 ]. Despite endometriosis’ prevalence in the U.S. as well as the severity of its physical and psychosocial impacts, access to diagnosis and treatment is inequitable, with Black communities often facing multilevel barriers to care rooted in structural racism. Endometriosis has been routinely underdiagnosed, underreported and under researched among Black people with uteruses. 1 Black women are less likely to be diagnosed with endometriosis than white women likely due to issues such as provider bias and dismissal of Black patients’ symptoms [ 12 – 15 ]; in a nationally representative sample of U.S. women of reproductive age, 8.56% of women diagnosed with endometriosis identified as Black while 71.81% identified as white [ 4 ]. Within this context, Black women in the U.S. might rely on self-advocacy and self-management to obtain needed care, a practice sometimes described among Black women navigating reproductive health care as empowering but also emotionally taxing and resource intensive [ 16 , 17 ]. Nonetheless, peer-reviewed research centered on documenting Black people’s experiences seeking and navigating endometriosis care is limited, highlighting the need to address this gap [ 18 ]. Overall, managing the strenuous physical and psychosocial symptoms of endometriosis amid a context in which access to comprehensive and culturally responsive care is compounded by structural racism can negatively impact Black women’s quality of life. The concept of quality of life is defined by the World Health Organization as “individuals’ perception of their position in life in the context of the culture and value systems in which they live, and in relation to their goals, expectations, standards, and concerns” [ 19 ]. Applying a quality of life lens to endometriosis research can help elucidate the multi-level complexities of living with this condition, including impacts at the individual (e.g. self-identity, perceived physical and emotional health), interpersonal (e.g. peer, family and intimate relationships), and institutional level (e.g. provider – patient relationships), and it has been previously studied among various populations of women experiencing endometriosis, though none have focused on Black women [ 10 , 20 , 21 ]. As such, assessing the multiple dimensions of quality of life of Black women living with endometriosis could address an important gap in the literature. A comprehensive exploration of Black women’s experiences with endometriosis and its impacts on their quality of life could contribute much needed knowledge and perspectives, and help elucidate future research and clinical implications to address Black women’s needs and priorities living with endometriosis in the U.S. As such, this study sought to examine quality of life perceptions in Black women diagnosed with and living with endometriosis. We focused on adult Black women of reproductive age [ 22 ], given that the presentation of endometriosis signs and symptoms and their implications may be most acute during this period in the reproductive life course. We also explored the patient-provider relationships Black women discuss as they manage their endometrial symptoms and treatments, and the roles of resiliency and self-advocacy in their management of their condition.

This study provides much needed insight into U.S. Black women’s experiences with endometriosis, offering a comprehensive exploration of the impact of this condition on their quality of life and of their journeys navigating healthcare and symptom management. Further work is needed to continue to document Black women’s experiences and perspectives and to inform future clinical practice that is culturally relevant, accessible and adequately addresses pain and other endometriosis symptomatology. Notably, this study’s findings echo Black women’s experiences across reproductive health care contexts in the U.S., thus underscoring the urgency of addressing the multi-level manifestations of structures of racism and oppression on Black women’s sexual and reproductive health.

This qualitative research study explored the experiences and quality of life of U.S. Black women diagnosed with endometriosis. Additionally, it sought to explore their navigation of the healthcare system and perceptions of self-advocacy and resiliency in the management of their endometriosis. We find that participants reported interconnected physical and psychosocial impacts of endometriosis, which were often compounded by negative healthcare experiences and delays in obtaining a diagnosis. In living with and seeking care for endometriosis, many participants evoked feelings of resiliency and strength, while also recognizing the toll of having to self-advocate to obtain care and manage their symptoms. In line with other literature assessing the healthcare experiences of women of color with endometriosis [ 18 , 34 – 36 ], participants in our study reported facing delays in obtaining a definitive diagnosis, delays which were frequently tied to providers’ dismissal and invalidation of their symptoms and concerns. These experiences, alongside other instances of negative interpersonal interactions with providers, contributed to poor quality of care, echoing documented evidence on inequities in the quality of sexual and reproductive health care experienced by Black women [ 17 , 37 , 38 ]. These findings point to the need for comprehensive and culturally responsive care and support for Black women with endometriosis, including person-centered clinical interactions [ 39 , 40 ]. Saliently, considering that structural racism has historically impacted Black women’s experiences within the reproductive health care system and perpetuates health inequities overall [ 17 , 36 , 41 ], future research should comprehensively explore the multi-level manifestations of medical racism in Black women’s health care experiences and overall quality of life when managing endometriosis in the U.S. Black women in our study perceived resilience and self-advocacy to be challenging but essential in caring for themselves and their condition. While some participants shared the empowering aspects of claiming agency over their care, they also spoke to the challenges of constantly having to self-advocate and be resilient when navigating healthcare settings on top of the daily management of their endometriosis symptoms. This complexity underlying self-advocacy in Black women’s reproductive health care experiences has been previously documented; other qualitative studies have found that Black women’s efforts of self-advocate across reproductive health care contexts in the U.S. are often a protective response in reaction to having been dismissed and unheard in previous medical encounters [ 16 , 17 ]. The calls to action and advice to others shared by our participants – e.g. prompting providers to listen to their patients and adequately respond to their reported symptoms, encouraging other Black women to trust their bodies and critically engage with providers – are strategies similarly described in other studies, thus underscoring the urgency of supporting community-led advocacy efforts to improve reproductive health care for Black women. Organizations such as EndoBlack are examples of Black women-led movements to advance health equity and quality of life for Black women, and future research efforts on endometriosis should be informed by their expertise [ 42 ]. Our in-depth interviews revealed the multi-pronged impacts of endometriosis on psychosocial aspects of quality of life for Black women; social isolation, adverse mental health outcomes, hindered intimate relationships, stigma and changes to self-perceived identity have been documented across a wide range of populations of women experiencing endometriosis [ 6 – 8 , 10 , 43 – 51 ]. However, studies focused on understanding these aspects among women of color are limited, highlighting the relevance and novelty of this study’s contributions to the endometriosis literature and the need to further build the evidence base on Black women’s psychosocial experiences living with endometriosis. Furthermore, it is necessary to consider the intersection between physical and psychosocial aspects endometriosis and their joint impact on quality of life – quantitative studies have found statistically significant correlations between physical pain, emotional distress and decreased quality of life among endometriosis patients [ 52 – 55 ]; future research should specifically explore these interconnections among Black women living with endometriosis, with a focus on incorporating theoretical or analytical frameworks that critically consider their experiences within a context of structural racism and oppression. Several limitations and strengths are important to consider in interpretation of study findings. We did not collect data on all key sociodemographic characteristics that could impact Black women’s lived experiences with endometriosis and access to care (e.g. ethnicity, health insurance status, immigration status, socioeconomic background), and we did not purposively sample across these important intersecting experiences, thus the findings likely do not capture the full range of experiences among Black women with endometriosis in the U.S. Additionally, this study does not report on the experiences of people across the gender spectrum who experience endometriosis but do not identify as women [ 56 , 57 ]. Participants were also recruited through online platforms (Facebook and ResearchMatch), which may have excluded individuals without internet access or those not engaged in online health communities, potentially skewing the sample toward more health-literate or advocacy-oriented individuals. Lastly, although reflexivity and positionality were addressed, all interviews were conducted by a single researcher. This could introduce interviewer bias in how questions were posed or probed. Considering its limitations, this study also posed various strengths. This is one of few studies that centers the voices of U.S. Black women living with endometriosis, addressing a critical gap in reproductive health research. The study was designed and conducted by a diverse team of women of color, including Black women and individuals with lived experience of chronic reproductive conditions. This insider-outsider perspective enhanced cultural sensitivity, reflexivity, and trustworthiness in data collection and interpretation. The study also goes beyond clinical symptoms to explore psychosocial impacts, healthcare navigation, self-advocacy, and resilience. This multidimensional lens aligns with the WHO’s definition of quality of life and offers a more complete picture of the burden of endometriosis. Finally, the study employed established qualitative analysis frameworks (Braun & Clarke; Castleberry & Nolen), iterative coding, peer debriefing, and reflexive practices to ensure analytical depth and credibility.