Black Women’s Response to the Dismissal and Normalization of their Chronic Pelvic Pain

Female Chronic Pelvic Pain (CPP) is defined as 6 months of cyclic or noncyclic pain localizing to the anatomical pelvis that frequently alters pain sensitization mechanisms in the central nervous system [ 22, 25]. While CPP can be associ - ated with a range of conditions arising from pelvic organs to musculature, it is also associated with several gynecologic conditions, such as endometriosis, fibroids, PID, and adhe - sive disease. Given that nearly 1 in 4 women globally suffer from CPP, being aware of the etiologies and knowing how Sydney Love Cush [email protected] 1 Feinberg School of Medicine, Northwestern University, Evanston, USA

Background Female Chronic Pelvic Pain (CPP) is a common, complex, and multifactorial disease that is associated with a number of non-gynecologic and gynecologic conditions. The physical symptoms associated with CPP can contribute to emotional distress, ultimately affecting a woman’s quality of life. It is imperative now more than ever to further investigate how stereotypes and racial and gender disparities operate in CPP diagnosis and management for Black women, which was the ultimate goal of this study.

A qualitative design was implemented that focused on one-on-one semi-structured interviews with 4 categories: General Understanding, Diagnosis Experience, Social and Economic Barriers, and Treatment Stage. The study had a total of 30 participants that self-identified as Black and were between the ages of 18–65. Thematic analysis and consolidation revealed 3 prevalent themes. Results/Discussion First, Black women have an understanding of and subjective familiarity with their CPP diagnoses reveal- ing knowledge may not be a limiting factor to receiving care. Secondly, the interviews revealed themes of “dismissal” and “normalization” of pain that appeared a total of 70 times across several social and medical contexts. Finally, a novel theme of “self-advocacy” emerged. Black patients feel a necessity to fight for recognition and adequate medical care. This, along with the known emotional distress linked to chronic pain contributes to increased mental load for these women.

Overall, this study is a call to action for increased empathy in the provider-patient relationship, eliminating ste- reotypes in healthcare treatment, and emphasizing mental and emotional states in pain management. Received: 14 April 2025 / Revised: 17 November 2025 / Accepted: 19 November 2025 © The Author(s) 2025 Black Women’s Response to the Dismissal and Normalization of their Chronic Pelvic Pain Sydney Love Cush1  · Alithia Zamantakis1  · Magdy Milad1  · Linda Yang1  · Taylor Keys1  · Oluwateniola Brown1  · Melissa Simon1 1 3 Journal of Racial and Ethnic Health Disparities trainees who hold false beliefs about the biological differ - ences in pain between patients based on race [ 20]. Stereo- types about Black people having “thicker skin” -- which has roots in slavery– can interfere with pain management strategies for Black patients promoting health discrimina - tion and endangering health [20]. Further, Black women are still diagnosed with endometriosis and CPP less often than their White counterparts [ 3, 4, 12] and have lower referral rates to pelvic pain specialists 35, despite having significant pain severity and interference, and an equal willingness to try medical, surgical, and alternative therapies[28]. There are also well-researched gender-related disparities in the management of pain between men and women. In the ED, only 38% of women receive any kind of analgesic for pain complaints compared to 47% of men, demonstrating that female pain is often overlooked and undertreated [15]. The collective contribution of multiple marginalized identities, such as race, gender, and class, and their effect on bias is known as intersectionality, a term coined by Kim- berlé Crenshaw [5]. As a result of intersectionality in health- care, Black women are at the brunt of the conjoined effects of both racial and gender disparity described above, making it exceedingly more difficult for their pain to be validated and managed appropriately. Further, the intersectionality of race, gender, and class in institutions such as hospitals can classify Black women as lacking “competence” when it comes to their care, which is merely an imposed social standard [7]. It crucial for clinicians to not only adopt an intersectional lens when considering CPP in Black women [24], but to remember that there is no correct presentation of chronic pelvic pain; no patient is more deserving of care based on their behavior or descriptions of their condition [7]. While the International Federation of Obstetrics and Gynecology and the International Pelvic Pain Society have committed to universal health coverage for gynecologic care, there has been little research done in this area and few advances to make this goal realized 34. Even less has been done from the point of view of Black women experiencing the effects of racial and gendered biases. As a result, this study aims to document the knowledge and subjective expe- riences of Black women diagnosed with CPP to elucidate barriers, stigma, and discrimination in the CPP diagnostic and management processes that may be present due to bias.

Study Design From January 2022 to June 2024, we recruited self-iden - tified Black women who presented chronic pelvic pain in the setting of fibroids, endometriosis, adenomyosis and other CPP diagnoses. Patients were included if they were between the ages of 18–65, assigned female at birth, Eng - lish-speaking, and managing CPP for 3 months or longer. Patients were excluded if they were pregnant, incarcerated, or had cognitive impairment as their designations as pro - tected populations necessitate additional protections and IRB procedures that go beyond the scope and resources of the present study. Patient recruitment followed a three-pronged approach. First, we developed paper fliers with study information to be displayed in the Minimally Invasive Gynecologic Sur - gery (MIGS) and Reproductive Endocrinology and Infertil- ity (REI) departments at Northwestern Memorial Hospital. Second, MIGS physicians identified prior patients meeting the inclusion criteria, and an investigator (SLC) connected with potential participants via phone. Lastly, MIGS physi - cians introduced the study to new patients coming to their clinics for an investigator (SLC) to interview during their appointment. Participants were recruited using purposeful sampling [28, 29] with ages ranging from 18 to 65 years. This was to ensure a diverse range of perspectives, while maintaining representation of the patient population with the highest prevalence of these conditions. Finally, each patient was rewarded with a $25 gift card for their participa- tion, funded by the discretionary research funds provided by the attending physician overseeing the study. The incentive was approved by the Institutional Review Board and was intended to compensate participants for their time. We conducted semi-structured interviews to understand the experience with their CPP, their perceptions of their management, barriers to care, and experiences of racism and/or sexism in the context of seeking care for their CPP. We iteratively developed an interview guide with input from a multi-disciplinary team of experts that treat various condi- tions associated with Pelvic pain. Interviews were completed in person and/or by phone, based on patient convenience. We originally planned to interview 30 women with the option to recruit beyond these numbers if thematic saturation was not reached at this sample size. This study was approved by Northwestern University’s Institutional Review Board (STU00219565). Data Analysis We conducted a thematic analysis, which allowed us to sys- tematically organize and identify patterns across the inter - views. Patients were contacted via phone number in the electronic medical record or during their visit to the North - western Complex Gynecology Office in Chicago IL [ 6, 23, 30] Verbal and written informed consent was obtained. Each interview followed an interview guide (Table 1) modified 1 3 Journal of Racial and Ethnic Health Disparities depending on the participant’s answers. Interviews ranged from 10 to 137 min for an average of about 74 min and were conducted from October 2023 to December 2024. Partici - pant demographics, particularly age and insurance status, were collected after interviews via the electronic medical record under IRB-approved access. Participant ages ranged from 20 to 56 with an average age of 38, and roughly 2/3 (63%) had private insurance vs. public (27%) or no insur - ance (10%). Researchers (SLC, AZ) developed a codebook based on the interview guide that acted as a framework for stan - dardized identification of repeated concepts, known as “codes,” across interviews [6, 23, 30].Interviews were then de-identified, transcribed, and input into Excel where the researchers manually extracted lines of transcript that evi - denced each code. Related codes were grouped to estab - lish major themes that were organized by “relevance,” which was determined both quantitatively and qualitatively. Table 1 Interview guide questions Category Question Subquestion/Probe General Understanding What is your current diagnosis that gives you chronic pelvic pain? What do (fibroids, PCOS, endometriosis, etc.) mean to you? Before treatment/management, what did you know about endometriosis, if anything at all? What are the most important things you have learned about endometriosis regarding its cause and mechanism in the body? Are you aware of the risk factors that are associated with endometriosis? Path to Diagnosis When did you first start feeling symptoms of endometriosis? Can you describe what these symp- toms felt like and their severity? Before seeking medical intervention, what did you originally believe these symptoms were? When these symptoms first appeared, how long did it take (in days, months, years, etc.) for you to go to the doctor’s office? What made you seek treatment for endometriosis? Was endometriosis the first diagnosis that you received? If not, what were other potential diagnoses that were in the running? How long did it take from the time you started feeling symptoms until you were diag- nosed with endometriosis? Before your diagnosis, how was your pain perceived by you, healthcare providers, and family members? Social and Eco- nomic Barriers Did you experience any barriers that prevented you from receiving medical care for your symptoms? If so, can you describe these barriers? How did you manage to resolve these barriers, if at all? In general, what social barriers did you face in receiving endometriosis care? In general, what economic barriers did you face in receiving endometriosis care? Have you experienced any stigma when trying to find care for your endometriosis? If so, explain. How can structural racism affect your or other Black women’s access to endometriosis care and outcomes? Treatment Phase How are you currently treating your endometriosis? Have you found these current treat- ments easy to manage? How did you decide which therapies to utilize in your endometriosis? What are your perceptions of each treatment technique? (Surgeries, medicines, alter- native therapies, etc.) What methodologies (Surgeries, medicines, alternative therapies, etc.) have you tried in the past to manage your symptoms? Which of these did you find beneficial? Which of these did you find ineffective? Which of these, if any, did you think aggravated your symptoms? 1 3 Journal of Racial and Ethnic Health Disparities Throughout some of the interviews, including these above, participants were using terminology and language not typi - cally expected of any layperson. From discussing correla - tions with fertility to accurately defining the definition of fibroids to even explaining the predominant theories on the pathophysiology of endometriosis, these women are operat- ing on a level close to or matched by a healthcare provider within the field of women’s health. Subjective/Experiential Familiarity with CPP In addition to demonstrating familiarity with empirical defi- nitions and research on CPP, participants often recognized their own symptoms through shared experiences with others facing similar conditions. One participant (19), for example, in response to being asked about how she learned the risk factors of her adenomyosis, stated, “Through my mother… She had very difficult periods and a very rough time with the three pregnancies that she had that were successful. I’m glad to be here, but it was very much so an accident and I did not give her an easy pregnancy whatsoever. And even then she was showing signs, but they didn’t know what it was.” Another participant (24) echoed a similar sentiment, “So I knew a little bit because my mom had fibroids like…. So we try to be pretty open about like medical stuff that’s going on. So I knew that it was something that was causing her pain and something that she had to get removed with surgery. That’s all I really knew about them.” Both participants highlighted, in the absence of a medical diagnosis, the importance of shared familiarity with CPP. Similarly to these participants, others discussed seeing their female family members struggle with CPP diagnosis firsthand. As a result, they were easily able to quote some symptoms, and treatments experienced by their mothers, sisters, and aunts before even experiencing it themselves. Subjective understanding works in tandem with objective understanding because it can help patients differentiate between normal and pathologic symptoms of menstruation, which is an established barrier to swift CPP care [ 8]. Fur- ther, prior familiarity with these diagnoses provides patients with a solid educational background that can better inform their management decisions [11, 13]. All in all, the theme of Correct Diagnosis Understand - ing (Objective Understanding) came up 33 times while Awareness of CPP condition (Subjective Understanding) appeared 51 times throughout the 30 interviews. This is Quantitative “relevance” was determined by the frequency that that theme appeared across interviews, while qualitative “relevance” was meant to identify themes that were novel to the existing literature.

Black Women Truly Understand CPP Diagnoses Across interviews, participants spoke at length about famil- iarity and knowledge regarding their CPP diagnoses. This was demonstrated by participants reporting facts or experi - ences that align with accepted definitions and diagnoses of CPP in the medical literature. Knowledge was discussed in two ways by participants: (1) understanding of CPP diag - nosis and (2) subjective/experiential familiarity with CPP diagnosis. Understanding of CPP Diagnosis Participants frequently mentioned risk factors, etiologies, or outcomes of CPP diagnoses, that have been well-established in current literature. One participant (25), when asked about what she has learned about her diagnosis stated, “And that’s pretty much what I know. Like some folks think it’s caused by retrograde menstruation. Which is low-key kind of crazy because I don’t know that they can go in reverse. But who knows?” This participant outlined the current leading theory on the etiology of endometriosis and demonstrated an understand- ing of the disease matching current healthcare profession - als’ knowledge. Another participant (21) mentioned, “So there are a lot of risks. I mean, the biggest one is like infertility for me. I’m interested in having kids. That has been a barrier for me to have kids with hav - ing fibroids. I think another concern is just that they’ll come back [after you] have them removed.” Similarly, a separate participant (9) echoed, “I’m told that they’re very common in Black women. But I’m also told that like non-Black women, up to 70% get them…I know it could, it could interrupt fer- tility…everything I've done is to kind of preserve… well, it absolutely is to preserve fertility” Both participants were familiar with the potential chal - lenge that fibroids may have on fertility and pregnancy. 1 3 Journal of Racial and Ethnic Health Disparities until the symptoms changed or worsened. Here, it is clear that there is a conflation of normal and pathologic pain occurring which contributes to patients pushing their pain “to the side.” Provider Reception of Pain In this context, we included all quotes from participants that demonstrated their concerns about being ignored by a nurse, physician of any specialty, or other healthcare provider that they interacted with during their CPP diagnosis and man - agement journey. Unfortunately, this category exhibits the highest frequency of instances of both dismissal and nor - malization with a total of 37 quotes categorized under this subtheme (Table 4). Many participants discussed how CPP affected everyday functioning difficulty participating in work, school, or other activities, which demonstrates sever- ity. However, despite this, their symptoms were still not met with concern, or even belief. One participant (16) discussed “I had an IUD perforate in my uterus, and nobody ******* believed me for a year and a half… I had no quality of life. I was not able to go to work. I was not able to go to school and I was delirious from blood loss….” Further, the responses show several instances of providers chalking up the CPP symptoms as a normal part of menses, menopause, and/or puberty; one provider even discussed this from a religious perspective. Participant (12) shares. “I was told, and I quote. It hurts [me] so bad because “Eve ate the apple.” By a white family practice person that did my paps. That's what she told me.” Most concerningly, this subtheme demonstrates that par - ticipants are aware of stereotypes that providers use against them when determining the level of attention and concern put towards their CPP and exploring appropriate manage - ment options. Participant (30) says. “I was constantly fighting… The medical industry assumes that Black women’s skin and everything is tougher and thicker. And there is a history behind that… we were cut open and experimented on based on falsehoods. So that some of the doctors, even of my own skin tone, were kind of just dismissive of it and it hurt.” All responses from all three subthemes demonstrate that Black women face their symptoms being ignored in every context. That, along with the use of racial stereotypes that important because oftentimes, education regarding particu - lar diagnoses and their associated symptoms can make the difference between seeking/not seeking care, especially in minority populations, and influences treatment decisions [8, 11, 13]The saturation of these themes within the inter - views demonstrates that the Black women in this study are well educated on these topics even when there is not much information available online [19], indicating that education about CPP diagnoses such as endometriosis, fibroids, and adenomyosis is likely not the only barrier for Black women receiving timely care. CPP Dismissed and Normalized Although aspects of CPP were well understood by the participants, there was still apattern of dismissal and nor - malization of Black women’s experiences related to their CPP diagnoses. The themes “dismissed” and “normalized” appeared a total of 70 times across all 30 interviews, and were divided into 3 subthemes: Social/Familial Reception, Personal Reception, and Provider Reception of the Partici - pant’s CPP: Social/Familial Reception of Pain In this context, we included all quotes in which participants’ pain symptoms and concerns were ignored by family mem- bers, friends, coworkers, or other individuals they engage with during their everyday lives. Table 2 lists a total of 10 responses that fit this subtheme. Participants discuss an array of negative responses to their pain from coming up with explanations other than menses, to being told to eat chocolate, it’s just a bad period. Several participants recall emotional harm done by this minimization. On the whole, their CPP is not met with urgency or concern, resulting in expressed emotional harm from the participants. Personal Reception of Pain This context included all examples in which the patient dismissed or normalized their pain, which while present, is not very commonly found, only appearing a total of 9 times across interviews (see Table 3). One participant (27) mentions. “I just thought it was just a part of [menses], like I just thought ‘oh, I’m just going to be cramping really bad and bleeding really bad like for this little time.’ But then it started getting to the point where it was like when I was having [periods], like multiple times a month. And I'm like, I thought it was only one time. What's going on?” This sentiment echoes other participants; they assumed that their pain was normal and therefore didn’t seek help 1 3 Journal of Racial and Ethnic Health Disparities Perceived Need for Self-Advocacy in Health Care Settings The final significant thematic finding discovered during the interviews and qualitative analysis was “self-advocacy,” appeared a total of 16 times across interviews, led to emo - tional distress and hurt for many of the women interviewed. Emotional and physical states of wellness are known to be well intertwined, and as a result can play a detrimental role in a patient’s holistic well-being [11]. Participant (11): So I didn’t think that was normal, right? And I’d always had painful periods, and I was always told it was normal. My mom would tell me oh, I had painful periods at your age too. Oh, just take ibuprofen. Go take a hot bath. Have some chocolate. You’ll be OK. Right? But very suddenly it was in maybe 2017 I just started bleeding every couple weeks, sometimes every other week, and I was thinking. Participant (11): It was completely new to me and I talked to my parents about it. My mom said ‘Oh, you’re probably just sleeping wrong.’ I’ll get you a foam mattress pad and probably that’ll make it better and just…it felt a little dismissive, but like I don’t. I don’t think sleeping in a funny position at night would cause you to have bleeding more frequently. That’s what happened as well. Yeah. Yeah, I forgot about that. Participant (11): Because the pain was that severe at that point, well…I just said at that point, repeating myself a little bit, but yeah, the pain was so severe and it was messing with my job and my mom was in the car and she was agreeing with the gynecologist that I should go see a therapist and a psychologist and just like, are you serious? You believe this lady? When it’s my body, I’m telling you what’s going on? I’m your daughter. And you’re agreeing with some stranger that you’ve never met before about what’s going on with me. And I was just– upset. Very, very upset. Participant (11): And so I kind of wish, he said that to my mom a little bit because she’s still treats me that way with recurrence of symptoms that I have that I happen to mention to her. And just like reminds me of that time back in 2017 and I told you I didn’t like that. That wasn’t very good, but maybe that’s just my mom. I don’t know. Maybe she just tries to say, oh, it’s probably not a big deal, so I don’t have to worry about it. Maybe. Participant (11): Yeah, I don’t. I don’t know why the male gynecologist, gynecologists that I’ve seen have treated me way better than the women. But that’s interesting. That is I would always think it would, or I always thought that it would be the opposite because it’s just like, oh, you have similar parts you can kind of relate, right? But No, in my experience they were more dismissive. Not only the doctors, but my friends and my family too, because I’ve had friends and we were talking about issues and they’re just like oh, that’s normal. Why did you get surgery for that? Why are you even treatment for that? It’s just. It’s just a period. It’s just what do you and meanwhile, like I tell my male I don’t. I don’t just go right away telling my male friends like my period issues. Researcher: So to clarify what you’re saying, you’re saying that. Even people in your life are like ohh yeah, it was just a bad it’s just bad period pain. Participant (15): Yeah, just bad period pain. Not really knowing or understanding what it is or what it stems from, or what it could be, you know. More than just a bad cycle or just cramping. Participant (16): Over like my whole life and my family didn’t really explain periods and take me to the doctors. And then when I saw doctor, they then explained in full. So I basically was in a cloud but not understanding what was happening or why. But even have the capacity to ask that it was just happening. Participant (16): Well my I was raised by my grandmother. Who really didn’t believe in doctors. And I feel like she’s a little bit narcissistic. So she was just like man, I used to have really bad periods too and would like step over me and then go back to doing whatever she was doing. So like, you know. Just be like. Yeah, I get what you’re going through, but like, there wasn’t the bridge of, like, take this person to the doctors. They have something wrong. Participant (16): When my mother did get involved, I don’t even blame her for not understanding what was happening because it was a generational thing where like now, like, I feel like my mother had, like, a lot of health problems that were dismissed. And so I feel like that made her unable to care for herself, therefore unable to advocate for me because. She does advocate when she has the knowledge, but like if you don’t even know something’s a problem. Participant (19): And my mom felt very bad because she was. She’s trying to like, you know, tough me through it. She’s like, no, it’s fine. You’ll be OK. Just stick it out and I’m like. This is bad like I’m in a ball curled up on my like I don’t sleep in my mother’s room unless I’m like dying. And so I’m cold, like in a ball on her bed. Like, no, this is this is bad. And so that’s kind of when I. Knew. This should not be as bad as it is, especially now that I’ve had sisters and their periods were easy like. I’m like ‘what? What? What do you mean? You should be in pain right now.’ And like they still go out and do stuff and everything. But no, that that first period was like, you know, this is weird and it only got worse and it would, like, get worse, plateau out. And we, which I was like, OK, it’s crappy, but I’ll handle it. And then it would get worse again and it plateaus up. My uterus does not like me whatsoever Table 2 Social/Familial reception to patient CPP 1 3 Journal of Racial and Ethnic Health Disparities believed from my doctor. So I knew I had to do my own research. I knew I had to….” In this response, the participant discusses how she felt com- pelled to investigate her diagnosis herself because her pro - viders were not knowledgeable about endometriosis and “refused” to give [her] diagnostic imaging. Just like this participant, several others turned to the internet for information, which this participant (21) echoed: “I have again advocated for myself. I have been very intentional about the doctors that I have, who have my best interests so…It’s just, yeah, I do my research. I was recommended to Doctor M. But like, I also looked him up. I also looked at his reviews. When I which, in this study, includes examples and responses of any time participants’ actions and words were used to try to leverage themselves to get a better outcome for their pain. The first example is the previous participant (30), who uses the phrase “I was constantly fighting…” when discussing her time in the doctor’s office, painting a picture of obliga - tory combativeness that she feels she must take on to have her concerns heard. Another participant (3) mentions “Without having access to scholarly articles…I am very far from a medical student but I felt like I had to [do endometriosis research]. Yeah, there wasn’t any - body else who was going to do it for me. So I had to do it for myself…Unfortunately, the medical-indus - trial complex is not built for me. And I wasn’t being Table 3 Individual reception of pain Participant (1): UM. For me, Sort of overlooked it. I knew that I had very, very heavy period. I knew that in the first two days or so, like I had cramps, but I’ve heard of people that had cramps to the point that like they would be crying and throwing up. And I I never had that. And so what I perceived like my pain as my pain. It was like if I wasn’t like crying and like doubled over and throwing up and I really wasn’t in a lot of pain or I was, but it you know it wasn’t like the worst pain. I could be in. Researcher What? What did you think about your pain? Participant (2): I thought it was normal or, you know, just the. Researcher: Sure. And did other people, like healthcare providers, family members like kind of go along with that story or were they the ones who encouraged you to kind of get help? Participant (2): No, I didn’t really talk to family members about it and healthcare people kind of brushed it off like it wasn’t A big deal. Researcher: Ok And…and my last question is before you figured out what was going on in regards to the scar tissue and your uterus kind of folding in on itself how was your pain perceived by you like? What did you think your pain was? Participant (3): It was just hurting real bad and I just got tired of it. Like it was mental and it was stressful. Researcher: And so where did you originally believe that these symptoms were? You just thought they were bad periods, Participant (6): Just bad. That’s what I’ve been told all my life that I just had. Bad periods. Participant (9): Because I was like ohh it could be, but most everything we’re talking about, I honestly thought was normal. The only thing I knew wasn’t normal is legit to pushing my stomach to the side to go to sleep at night. That’s when I knew it wasn’t normal, but everything else I just kind of took as normal…And didn’t. Ijust didn’t really know it was a problem, but then moving. Yeah, my sleep, my sleep was a problem too. So I was aware of those symptoms, but I didn’t know. I didn’t fully know the impact because again, with my fibroids, it grew overtime. It was something I didn’t know I had. So I again, I just, I really did take everything as normal except for the actual like moving my stomach a certain way to fall. Asleep. And then not being so sorry, I I don’t know if I said, but I’m a stomach sleeper. Naturally I’ve been. My whole life. That that I couldn’t sleep on my stomach so. So about a year and a half before they got removed, I had to start sleeping on my side. I would still try and. Sleep on my. Stomach. But then I would wake up because I was in pain or discomfort. So like it just I couldn’t train myself to, like, fully sleep on my side. So it just. It that I knew was a problem. So that’s the only thing I can say that I understood was a completely direct impact. Of the hybrid. OK. Researcher: OK. OK. And then what about you? How did you perceive your pain? Participant (13): Well, since it wasn’t as intensified as it was, once I came back home, I was just, you know, doing the Motrin. But then at that time, you know. I have to also equate it to. I have two little kids running around, but I have three children and I have two little kids running around. So you know, you got to keep up, you know, gotta stretch, get your muscles ready. But you gotta keep up these little toddlers. It really it wasn’t really that bad. Like I said, it has intensified once I moved back. Researcher: No. OK. And so now we’re going to talk a little bit more of your diagnosis, which I kind of touched on like the kind of the beginning of when you first started feeling the symptoms, what did you originally believe that they were when you started feeling them as a teenager? Participant (26): I just thought it was. The menstrual cycle. Like and then my mom, she would give me, like, Advil and stuff like Tylenol. But that would never really like help. So. Participant (27): I just thought it was just a part of it, like I just thought oh, this just will come here. I’m just going to have. I’m just going to be cramping really bad and bleeding really bad. Like for this little time. But then it started getting to the point where it was like when I was hav- ing them, like multiple times a month. And I’m like, I thought it was only one time. Like, right? What’s going on? Participant (29): Umm, so the pain for me, I was just kind of curious as to, you know, what could it be? Could it be the fibroids? Could be something else? And it was actually my husband that was very much like, uh, this isn’t normal. And I was, I was also normalizing like, well, if it is the fibroids, sometimes they hurt. I haven’t had that, but you know, it’s a normal thing. And he was like, you know, whether it’s supposed to hurt or not, whether it’s normal to hurt or not, it shouldn’t hurt. It’s not supposed to hurt. 1 3 Journal of Racial and Ethnic Health Disparities Participant (6): I do because I just felt like sometimes my doctor would be like blowing it off like I had, I asked for a hysterectomy from her like way before this maybe three years before that, like I just was. Like you could you know my kids of age. I don’t need anything in my body, but I couldn’t take the pain anymore. Like having cramps really bad and bleeding for seven to 10 days. But she would just blow it off. Oh, you’re young, you’ll be OK. And I’m like, no, I know my body, I don’t. I want this to stop. Like, this is ridiculous. And my mom had a hysterectomy for the exact same reason. And I know my mother had endometriosis, so I’m like it. I know it’s a part of our family, so I don’t need. And then I end up changing doctors and my other doctors like you. Participant (8): That, yeah, they should have put the catheter in the first time I think when I said that, hey, I can’t pee and I got to pee. I think that’s when they probably should. They should have listened, you know, it was a bad idea like, where’s this urine going? If I can’t pee? Participant (8): It was one time, though I did. I started to feel like nobody was hearing me and just but that was over communicating through like the computer and stuff like I was. I was concerned about the Lupron I was concerned about my periods. I’m like, I’m not filling up a pad. What’s happening is. I forgot all about that, but my clots were so big that it wouldn’t stay in the pad, which then I come out and I’m bleeding out of my clothes. So I was trying to tell them I’m like, why is this happening? Like, but they can’t tell me what has happened. And I know one nurse was like, you got to go to the ER if you’re bleeding… Participant (11): I guess it’s…It was just dysmenorrhea. Yeah. I don’t think she really believed me in that in that first appointment and because I was telling her everything that I was talking about with my friend and of course I did the Google searches and whatnot and some providers don’t really like hearing that you do Google searches on your own. They’re just like, oh, you consulted Dr. Google and you think you know everything, huh. And it’s just like. No, I’m not coming at you with that sort of attitude or anything. Like she would treat me like some sort of hypochondriac. But it’s just like I have concerns. These are my symptoms, this is what I’m reading…maybe help me, but she’s just like it’s just a little bit condescending. After I told her that she said, oh, and how did Google suggest that you treat that and I’m just like I don’t know, birth control pills and she’s like, that’s right. I’m going to prescribe you some birth control pills. So that was the end of that appointment and I picked up a prescription for oral contraceptives for the next month. Participant (11): OK, so I was in a chemical menopause for four times in total and I’ve I felt not so great emotionally. The last time I did it because…I don’t know why but my…I was back at school at that point and my it was just making me incredibly, incredibly depressed. And I’m just like I can’t take this anymore. I’m in a lot of pain. Maybe I need another surgery. And so I went and asked him that gynecologist, 4th one. I just realized after saying it earlier but he thought that it was my bladder… And I was thinking. I guess I’m having some bladder symptoms like is painful when it’s full, sure, but it’s not just my bladder. I I think it’s, you know gyne- cologic again can you help me out but he didn’t really seem to take me too seriously when I when I brought it up, yes. Participant (12): And it would never go away. And then, like I said, I didn’t stop. Planning to almost. An adulthood, and I was told, and I quote. It hurts him so bad because “Eve ate the apple.” By a white family practice person that did my paps. That’s what she told me. Researcher: And was fibroids the first diagnosis that you received once you started going to your own doctors? Participant (12): No, no, no. That’s the first one. When I was 21, she told me it was because “Eve ate the apple. That’s just what was supposed to happen.” So I didn’t get a diagnosis then I think I got. It. I worked four or five years as a new grant nurse. I moved to Houston, TX, and I got a new OB and I was tell- ing her my issues and she was the first one to dive into it and tell me I had fibroid. Participant (13): OK, so once the bleeding increased in 2017, I went back to my gynecologist in Nashville and he was just like, well, you know, you getting older, so, you know. It’s OK. You know your fibroids. I don’t see your fibroids. You know, causing the extra bleeding. But you know you getting older. I’m like, OK, you know like oh, well, I’m getting older. I don’t believe I had an IUD in Nashville, I think I didn’t get my ID place back here when I moved back here with Doctor Belafonte my who was my gynecologist before I left Chicago. So I just came right back to the same to all my same providers. Researcher: OK. And so then that’s when you started going in. Your doctor said, oh, it’s because you’re getting older. And then you went to your doctor here and it was that Doctor that said I actually think it might be something else. Participant (13): Exactly. Patient (13): Right. Yes. OK. And in Nashville, they’re very dismissive. Participant (13): Which is why I was like, I think “am I too young for fibroids,” Because remember what I told you I had two small ones after my second child. But like, nobody like kept up with the size or measured them or anything like that. And when I mean, I dismissed in Nashville when I was giving birth and my heart rate went out of out of control out of whatever it is I was getting and I was complaining about it. They just gave me airs like “Just breathe, just breathe.” And then when they are done, nobody is thinking what happened. They came in here with a my bad and they left the room. Participant (13): So that’s when that came. As far as communicating with my gynecologist there. It was just like no Tylenol like, I was never put on medica- tion for it to fibroids in Nashville. It was always warm compresses. Take a Motrin, take a Tylenol. Everything was always related to getting older. Participant (15): So that’s how I was diagnosed initially prior to that, just having painful cycles, it would be, oh, just get on some birth control to just stop your cycle. So you won’t have to experience the pain is what I was told prior to that. And then I had an experience where I was in so much pain. I want to Advocate Christ and I could barely walk. I was in pain. So I’m like, if I’m coming to the hospital, can barely walk in a severe pain I’m talking to the doctors, I am on my cycle and they kind of dismissed it as though like and it was a female doctor. Like, oh, you know, there’s just something women go through and they kind of just prescribe me they did only prescribe me pain medication. Participant (16): But I think it has cost me truly years of my life and I’ve gotten, like, severely medically gaslit. So it’s been very unenjoyable. But I’ve definitely it’s just been me like very much like pursuing. OK, what is another option like trying to be creative with the one brain cell that I have left that is not tired, like, you know, what is the next option like this? Like, you know, doctors have to go through their minimum 4, like years of medical school before, like, getting a specialty. Like there are all of these things that can go wrong with their uterus, with your body, with their hormones. Like, there has to be, like, a reason that I’m living like this because, like everyone else around me is not. Researcher: Have you experienced any stigma when trying to find care for your pain? Participant (16): Oh yeah 100%. I feel like. I was. Highly stigmatized by one of the primary care doctors at Northwestern, it was a very unenjoyable experience. I’ve been having like pain on my lower right side. And like I feel like because people can’t figure out what the pain like came from. They don’t necessarily take me super seriously. So I was like in an appointment and like, I was talking about my pain. And like, you know, they were pressing down to feel if I had a hernia and I didn’t have one. I mentioned the fact that, like I had been seen by like the previous doctor a lot and I had like my IUD was slightly perforating through my uterus. They couldn’t find those notes and didn’t necessarily believe me. Table 4 Provider perception of pain 1 3 Journal of Racial and Ethnic Health Disparities Participant (6): I do because I just felt like sometimes my doctor would be like blowing it off like I had, I asked for a hysterectomy from her like way before this maybe three years before that, like I just was. Like you could you know my kids of age. I don’t need anything in my body, but I couldn’t take the pain anymore. Like having cramps really bad and bleeding for seven to 10 days. But she would just blow it off. Oh, you’re young, you’ll be OK. And I’m like, no, I know my body, I don’t. I want this to stop. Like, this is ridiculous. And my mom had a hysterectomy for the exact same reason. And I know my mother had endometriosis, so I’m like it. I know it’s a part of our family, so I don’t need. And then I end up changing doctors and my other doctors like you. Participant (16): And like the Doctor who was like the nurse practitioner that was helping me, he went to get his superior and she was like asking me failed mental health questions. Like if I’ve ever been psychiatrically helped, like all of these things. And I felt like they did not believe my pain. That made me feel deeply uncomfortable. My doctor’s notes just look really see from that appointment like it says I’m depressed. I’m like, I wasn’t depressed. I never said I was depressed. You know, like they said, my scans were from a hospital. Like a different hospital than like what I was talking like there was just so many different things. And you just don’t see anything to speak to that, like, everything in my patient notes just like. Like, I feel like was gaslighting me, saying I was depressed when I wasn’t saying I like had anxiety when I wasn’t saying I was treated for things I didn’t have. And I said I was uncomfortable, like in the moment and they just were, like, blowing me off, not listening to me. And now that’s just in there, like Dr. Justin something. And I don’t know another doctor. I think they’re like listed as my primary Care now. I saw them once. I talked to Northwestern about it. I have to go through a whole like process which harms me more to get that taken off of there. Participant (16): But like the rheumatologist was not taking me super seriously because I was testing low for it. And he’s like, you know, you’re testing low. I’m not going to take you super seriously, but I’m like, I’m very symptomatic. Can you help me? And his answer was no, he does not take me super seri- ously about it. Participant (16): They could see that I’m dehydrated and like my kidney results and whatever, and I’m just like, yeah. And like, you know, my rheumatolo- gist is not taking me super seriously. And I’m like, oh, well, if your rheumatologist says this, then that might be the best course of action. I’m like, I’m telling you, the last doctor I saw like, you know is not taking me seriously, but I’m very symptomatic and they’re like, OK, well, why don’t you refer to that doctor on your care or we’re going to go based off of what he says. And if he says it’s nothing, then we’re saying it’s nothing. So it’s just like, OK, well, one doctor can harm you and ignore your problems… Participant (16): And then it stops multiple. So if my primary sends a referral here. You know. Then you go wherever and they’re like, oh, your primary care doesn’t see a real problem. You know, you’re testing a low positive. So that’s maybe just a fluke. Come back and you’re sick. You know, I’m sicker. Then I go somewhere else. And they’re like, oh, well, we see that there’s a chain of people who say that you don’t have a problem, so even though it says you’re dehydrated, I have, they said I had pelvic inflammatory disease and I had a UTI and then I had a whatever a UTI that has a yeast infection, and then I had a bacterial infection and then it showed that I was hydrated, but they’re like, oh, well, you know, like your last couple of doctors said everything was fine. So like, everything might just be fine. And I’m just like, so even though I’ve had all of these tests, but no doctor is listening. It’s like each person that dismisses me acts on a little bit more of me being the. Just in the future and I’m like, how do I get care? Researcher: Say more about that [doctor being confused] Participant (19): Because I didn’t have my stomach issues. For so long. I kind of got good a little bit it wouldn’t recognizing when doctors are like. We don’t, we don’t know, but we like, want to know, but we don’t know. And so we’re gonna start handing you things. We’re kind of like here. Take this. That and we’re OK. We’ll take this. And it’s different than like, oh, you have this condition. We’re going to do with trial and error type of thing. They were defi- nitely blind at several points with being. And so. When I saw my other gynecologist. Because I think my mom took me to her first. Participant (19): Back by the second one, I was like uh. What is this? And she said maybe it’s actually your period. The breakthrough bleed, maybe that was earlier or whatever. Maybe this was actually your period. And I was like, OK, whatever. And I was up here for a neurology appointment. And the third one started. And I I immediately sent her a message like, hey, it’s here again and she’s like actually this is your period and like I don’t know what this is anymore, I don’t know what this is. So it was that when you when I think if you’ve gone through this enough, you start to notice when they’re like. We don’t know, but we they don’t want to tell you that they don’t know, of course. Or they don’t want to assume that it’s the worst. Because you’re young. Participant (22): The closest scenario I’ve had with that is with pain tolerance, so the first fibroid surgery that I had, although it was laparoscopic I had sort of a mini lap. Incision to remove the contents of the myomectomy that I had in 2020 and at Loyola Hospital where I spent an overnight stay. After that procedure, I found the nurses. White female nurses, or at least one in particular, to not be very. Empathetic or just kind of skeptical to the amount of pain that I was experiencing she even. Said to me that, hey, I have, 60 year old women who have, walked the same evening after this and sort of just. Made me feel as if I was either faking my pain or not really acknowledging the fact that I could be in pain. It took a nurse shift like the next one of coming in and seeing that, my heart rate was high in terms of just spiking sitting in bed because I was in a decent amount of pain. Before. Or. They would acknowledge that I was experiencing the pain that I that I Said I was. Participant (23): A lot of doctors told me that it was just puberty. A lot of doctors said. Like this is, you know, you’re just a woman and this is a thing that happens to women and it’s just cramps. You’re just having painful cramps. I heard a lot like, you’re too young….Be like experiencing pain as bad as you’re telling me. Which is I guess, why I feel like people felt like I was being dramatic about it. Because I I would always bring it up to the. Doctor. It would like when at the end, they’re like, is there anything else you want to talk about? I would tell them about it and they’d be like, oh, that’s still happening. We’ll take birth control. Or here’s another ibuprofen prescription and see you later. Participant (23): And I also felt like, especially when I was younger. When I would like tell the adults around me what was going on, if I went to the doctor and the doctor was just like it’s just puberty, you’re fine. I feel like the adults around me would be like I knew you were being dramatic. And they wouldn’t like, say that, you know, but they would. It’s like a look or just a a tone in their voice that made me feel like, well, OK, now, now that the authority figure has told them that nothing’s really wrong with me, I guess. I guess there’s nothing I can do because. Nobody else believes that. Yeah. Participant (25): And then. In terms of the cramping, she didn’t really have anything to offer? And so, because the cramps went away, I think like 2 weeks later or something like that. I don’t really think about it, but when they came back in July and they never went away. So two weeks after so July 26, 2023 I went to the ER because they were so bad that I couldn’t focus on anything else. I mean was just horrible pain. You know they palpated my belly. And did all this but they basically were like nothing’s wrong with you so go ahead and ohh I’d also been experiencing bloody stools too. Just a couple but I called the nurse on the back of the Blue Cross Blue Shield. Table 4 (continued) 1 3 Journal of Racial and Ethnic Health Disparities to ensure that she would be safe in his hands. Another strat- egy is discussed by another participant (9) here: “My pain is minimized. I have done a lot of work to make myself be seen…I talk about my advanced met him, I asked questions. So like there’s a lot that goes into it….” Instead of researching her diagnosis, this participant’s ver - sion of self-advocacy was to heavily research her provider Participant (6): I do because I just felt like sometimes my doctor would be like blowing it off like I had, I asked for a hysterectomy from her like way before this maybe three years before that, like I just was. Like you could you know my kids of age. I don’t need anything in my body, but I couldn’t take the pain anymore. Like having cramps really bad and bleeding for seven to 10 days. But she would just blow it off. Oh, you’re young, you’ll be OK. And I’m like, no, I know my body, I don’t. I want this to stop. Like, this is ridiculous. And my mom had a hysterectomy for the exact same reason. And I know my mother had endometriosis, so I’m like it. I know it’s a part of our family, so I don’t need. And then I end up changing doctors and my other doctors like you. Participant (25): And they were like no girl. Go to the ER. So I did. The ER wasn’t super, wasn’t super helpful. So anyway oh. I happened to have a primary my regular physical schedule the next day. Went to the physical and, she palpated my belly and inserted the speculum and it was extremely painful. I wanted to cry. And she was like, OK, this is likely a gynecological she’s probably not a GI issue. So you should. See a gynecologist. So I went back to the same gynecologist who I saw in April, who hadn’t been super helpful like she was just basically like she was really trying to push me. To go on birth control. The birth control giving something I’m not super comfortable with right now just because birth control (combined contraceptives) in my past has…I’ve been suicidal when I was on birth control. It’s also caused a decrease in libido, vaginal dryness and. And weight gain. Participant (25): I didn’t leave that appointment feeling great, and I let the practice know. And the practice gently told me to find another practice since I was so dissatisfied. I have located for myself and just was doing some research about endometriosis specialists in Chicago. Which is how I found this complex gynecology at Northwestern and how I found Dr. Yang. And that’s what I called and made an appointment. Oh, and the other thing was that doc that gyne- cologist had seen before I wanted an ultrasound. And she refused to give me one. And afterwards, I forgot I forgot to document her refusal. And I felt so bad about, like, so shamed at that later. But anyway, yes because she said, oh, since you had a CT scan through it yesterday or two days ago or whatever it was… Participant (25): OK. Yeah. Family members were, you know, obviously concerned. The healthcare providers were kind of I just…Well, my primary care doctor, I don’t think she knew what was going on. But she was concerned. But she was like, I don’t know, girl like you need to go talk to somebody about this stuff. Yeah, but otherwise until I met Doctor Yang, like the gynecologist that I saw. And in April and July, just was not helpful at all. I just felt like she didn’t believe me. I felt like she thought I was making stuff up or potentially a hypochondriac. And I’m like, no, like, why would I? For a while. I just thought to myself like maybe I am making this stuff up, you know like I am. Participant (25) You know, just because I my experiences weren’t being validated by medical professional and I was like maybe psychosomatic because I also have experienced sexual assault. Like maybe it’s result of that. I don’t know, but I was. I just remember when. They told me I had endometriosis I started crying because it made me feel like. I wasn’t making things up. I wasn’t making up my pain. It felt very bad with anything and I was I felt really grateful that doctor Yang. Listened to me. In terms of, like believing me that I was experiencing so much. Participant (26): It wasn’t percieved. You did was like, ohh you’re in. Saying, OK, you know, like that comes with [menses], you know. And I was like, well, is it anything that I can take or do to kind of, you know, take the edge off of it? And it was nothing but what they tell me try Tylenol. And I explained to them that I already tried, it’s not working and it’s like.. Researcher: OK. And before your diagnosis, how was your pain perceived by you already talked about you, but how was it perceived by healthcare provid- ers and then also family members that you told about? Participant (28): Dismissive, dismissive. Participant (28): My doctors were so dismissive of it. So like I said, when I started to kind of do my own research, um. I am, I remember. I’ll, I’ll tell you about it. And experience that I had in Graduate School and I was actually at the time celibate and I was having such painful periods and I went to a doctor. I didn’t have insurance at the time because I was doing a work study. I had an internship for the program that I was in. And when I was at school and Graduate School full time, so I was like, you know what, I went to USC for Graduate School in California from California. So they this USC was like, ohh, well, you know, there’s like a student insurance you can utilize and you can always go to like the student health care clinic and have all of your care there. So like, cool. Participant (28): So I established care completely. With the USC healthcare clinic and I remember telling my primary care doctor, hey, you know, I’m having these really painful periods. I’m not really sure what to do about them. And so she was like, let’s, let’s get you planned with an OB. So I, I had the. Conversation with the OD and the OB shoes, the black woman herself. And she was just like, ohh, you just mean she takes some medication. Then you need to protect yourself during having sex. And I was like, what? I’m not even having sex. Like you’re completely like missing the point of what I’m trying to tell you. And so I kind of have an attitude where I’m like, I’ll just fire you. I don’t wanna have contact with you anymore. I don’t feel supported by you. Don’t feel safe. She gave me a bag of condoms. And was like, godspeed. That’s literally how she treated me. Participant (30): I was talking to doctors previously before I went to the current hospital at. They just thought, oh, it’s just. Of period. That’s what that is. And I described to them and I explained to them, period pain should not be where it’s paralyzing me to the point that I can’t go to work while I have to go to school or I. Off of work where? Sitting at the toilet or sitting. The toilet for 30 to 45 min. In excruciating pain. This should not be like this. Participant (30): When I describe to them the pain with a health care professionals, they dismissed it. When during my late teens, early 20 s, they thought it was just part of the pain itself. They did. They just prescribed me, which is over the counter medicines. And like using the hot water bottle. They were kind of dismissive and passive about it because. Participant (30): Like now, like for sure right now, based on the history behind black people and like pain tolerance, which is evidently false as hell, it’s extremely false. But with that, the issues is that it was still passive, even within my own community, because I went to see PCP before coming to Northwest- ern to get this like that. It was just a myth, dismissed like it was just like, oh, this just part of the pain you’re going to deal with from pain. Table 4 (continued) 1 3 Journal of Racial and Ethnic Health Disparities normalizing symptoms can contribute to delays in diagno - sis, prevent women from seeking health services, and ulti - mately result in poor management and poor outcomes [26]. Our study establishes that this same pattern exists for Black women with CPP in the US. However, one significant find- ing from this study is that health literacy and understanding of their diagnoses was not a significant factor in why Black women were not receiving appropriate care. Rather, the normalization and dismissal of pain experienced by Black women in this cohort is instead tied to racist medical stereo- types and the choice by providers to ignore the experiences of Black women. Further, we emphasize the importance of self-advocacy, and its role in Black women’s struggle for access to medical resources. While this is a novel theme for medical literature, this concept was first discussed in Tressie McMillan Cot - tom’s essay “Dying to be Competent.” As in this study, the essay argues that Black women are forced to demonstrate and prove their “knowledge” as a mechanism to be helped or merely validated in healthcare settings [ 7]. Examples of this are abundant in our interviews, from conducting online searches for diagnoses and providers to mentioning advanced degrees during appointments. Black women face numerous challenges in navigating the healthcare system and obtaining adequate care. Existing studies have linked chronic pain to emotional distress, psychiatric issues, and feelings of helplessness [ 32] The dismissal and normaliza - tion of pain, coupled with the need for self-advocacy, adds emotional labor during medical visits, increases stress and mental load, and steepens the already uphill battle to finding relief from what may be a lifetime of pain.

This study has some limitations. First, the sample comes from a purposeful sample of patients from one academic research institution in Chicago, Illinois. Further, the demo - graphic data collected on the participants in this study is limited to age and type of insurance, which is only a rough proxy for socioeconomic status [27]. Education and income level were not outright documented.Therefore, the par - ticipants of this study may not be representative of Black women across the country. This is important when con - sidering information in relation to barriers to care. While familiarity with and knowledge about CPP diagnoses were prevalent in this study’s population, we must not exclude information access as a barrier to diagnosis and treatment for the population of Black women as a whole. We also recognize that selection bias can occur during every step of the research process. We attempted to mitigate this by using multiple forms of recruitment and multiple interview modalities for participant convenience. However, degrees or education to kind of elevate my, I guess, social status to make it seem like I’m not someone who can just be passed over. I’ve also asked better ques - tions and follow up in a way that I didn’t before….” In this example, the patient discusses some of the “tactics” she uses to prevent being dismissed in the healthcare set - ting, as a way to make her seem more important and “wor - thy of attention,” as this same participant mentioned later in the interview. While this only appears in just under 30 instances throughout the interview, this is a novel theme that outlines a change in behaviors and the way that Black women act in the healthcare space as a mechanism for equal treatment. Black women are aware of the way that their identities could play a role in their lack of treatment and feel obligated to “take matters into their own hands” as a last-ditch effort to circumvent it.

Our study reveals that the challenges Black women face in accessing appropriate care for CPP stems not just from a lack of health literacy or poor understanding of their gynecologic conditions. Rather, these barriers arise from racialized and gendered biases that serve to normalize and dismiss their pain. Additionally, the need for self-advocacy in healthcare settings serves as an additional barrier. This study is one of the first to examine Black women’s subjective experiences with CPP with findings highlighting instances of dismissal, medical racism, and the resultant necessity for self-advo - cacy regarding pain, which has been identified in perinatal settings [ 31]. Our analysis illustrates that Black women’s experiences of severe symptoms –often impacting their daily physical and social functioning --are frequently dis - missed as mere concessions to be made or habits that must be changed [14]. Discriminatory racial biases have been used to inform decisions about healthcare for Black women, both histori - cally and contemporarily [9]. These biases have shaped the way that Black women have been perceived and treated by healthcare providers, at times leading to less-than-ideal out- comes [17]. While the dismissal and normalization of pain have been documented previously, this study specifically addresses how these experiences manifest for Black women with CPP, and links established stereotypes to these themes. Our data reveal that these stereotypes can shape how Black women’s pain is perceived by healthcare professionals. Previous research demonstrates the stigma regarding endometriosis pain. In a study completed in Latin America and the Caribbean, researchers found that dismissing and 1 3 Journal of Racial and Ethnic Health Disparities prefer that their sexual health provider be of the same race and gender if available and have high rates of satisfaction and trust in their care when this concordance occurs [2, 33]. Interestingly, one of our participants, in contrast to existing literature, noted that she has received biased treatment from providers of color. This highlights that increasing diversity among our healthcare workforce may be critical to further improving the experiences of Black women seeking care for CPP, but it is not a cure-all. Further, this patient’s expe- rience emphasizes the need for improved bias training as outlined above. Lastly, there is data that demonstrates the benefit of patient narratives in clinical pain assessment and genito-pelvic pain therapy [ 1] It is imperative that subjec - tive experience as well as mental and emotional stressors be incorporated into pain care alongside medical and surgi- cal interventions to create a more holistic treatment model, especially for patients who already experience devaluation in the healthcare space. By prioritizing these strategies, the healthcare system can begin to dismantle the barriers Black women face and foster equitable, compassionate care for all individuals experiencing CPP.

We extend our deepest gratitude to all the remarkable women who participated in this study. It has been a privi - lege to hear your stories and amplify your voices. By contributing to this research, you have not only helped advance our understanding of endometriosis, fibroids, and other chronic pelvic pain diagnoses but also empowered future generations to address disparities and create a more inclusive and equitable healthcare system. Author Contributions Sydney Love Cush : Conceptualization (lead); formal analysis (lead); investigation (lead); writing–original draft (lead); writing-review and editing (equal). Alithia Zamantakis : Methodology (lead); formal analysis (supporting); writing—review and editing (equal). Magdy Milad: Supervision (supporting); resourc- es (equal); writing—review and editing (equal). Linda Yang: Super- vision (supporting); resources (equal); writing—review and editing (equal). Taylor Keys: Writing-review and editing (equal). Oluwa- teniola Brown: Conceptualization (supporting); writing—review and editing (equal); resources (equal); supervision (supporting). Melissa Simon: Conceptualization (supporting); resources (equal); writing— review and editing (equal); supervision (lead). Funding This study was partially supported by discretionary research funds provided by Dr. Melissa Simon. The funding source had no role in study design, data collection, analysis, or manuscript preparation. Declarations Ethical Approval The study protocol was approved by the Institutional Review Board of Northwestern University (STU00219565). Consent to Participate Informed consent was obtained from all the subjects involved in the study. Disclosures The authors have no conflicts to disclose. Competing Interests The authors report no potential conflicts of interest. we acknowledge that physician recruitment and fliers in the MIGS and REI offices led to lower recruitment of those with less healthcare engagement. Further, because we interviewed participants about previous healthcare and personal experi - ences, our data is subject to recall bias and may include some inaccuracies. Lastly, we chose to exclude pregnant women, those who were incarcerated at the time of interviews, and those with cognitive impairments. These exclusion crite - ria limit the diversity of our study population, particularly among those who experience unique barriers to care.

and Future Steps The findings of this study highlight the urgent need to address the systemic inequities that Black women face in managing CPP within healthcare. Given our data, some solutions lie in decreasing the immense mental load associ- ated with expressing pain and receiving treatment for pain amongst Black women, which is often compounded by societal biases and the minimization of their symptoms. A foundational step involves fostering a clinical environment that validates patients’ experiences and treats their reports of pain with the seriousness they deserve. This requires a cultural shift within the medical community, emphasiz - ing empathy and trust in the patient-provider relationship, which has been shown to improve health outcomes for patients with chronic conditions [10, 21]. Further, this work adds to the conversation surrounding the use of racial stereotypes surrounding the pain experience of Black patients [ 6], which can lead to under-treatment/ management of pain. As a result, widespread anti-racism interventions can be implemented nationwide, with a focus on understanding systems of oppression and the history behind stereotypes, along with encouraging administrative and leadership buy-in [18]. A particular focus on remedying implicit bias specifically encourages strong relationships between Black patients and their providers. Beyond individual attitudes, systemic solutions are essen- tial. Hospitals, clinics, and health professions schools must implement comprehensive bias training programs, such as interactive modules or scenario-based workshops using real patient experiences and barriers to care, to help providers recognize and combat stereotypes that may unconsciously influence care decisions. While evidence of the efficacy of these trainings is mixed, the presence of data supporting the use of implicit bias trainings suggests that when imple - mented according to evidence-based practices, these train - ings can result in meaningful changes for patients [16]. Moreover, current literature discusses the potential ben - efits of racial and gendered concordance in gynecologic care. Previous studies have identified that Black women 1 3 Journal of Racial and Ethnic Health Disparities 14. Gilmour Jean A., et al. The impact of endometriosis on work and social participation. Int J Nurs Pract. 2008;14(6):443–8. h t t p s : / / d o i . o r g / 1 0 . 1 1 1 1 / j . 1 4 4 0 - 1 7 2 X . 2 0 0 8 . 0 0 7 1 8 . x. 15. Guzikevits Mika, et al. Sex bias in pain management decisions. Proc Natl Acad Sci U S A. 2024;121(33):e2401331121. h t t p s : / / d o i . o r g / 1 0 . 1 0 7 3 / p n a s . 2 4 0 1 3 3 1 1 2 1. 16. Hagiwara Nao, et al. 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