{"paper_id":"4486a814-d134-45ac-8adc-cce832adc996","body_text":"Journal of Racial and Ethnic Health Disparities\nhttps://doi.org/10.1007/s40615-025-02765-3\nto approach the condition clinically is of major importance \nto the obstetrician/gynecologist.\nThe symptoms and effects of CPP on a patient’s life are \nextremely complex. Some of the presenting symptoms of \nCPP include dyspareunia, dyschezia, dysuria, and dysmen -\norrhea but given that the causes are often multifactorial \nand heterogeneous, there can be a unique combination of \nsymptoms and the potential for overlapping pain diagnoses \n[25, 32]. Chronic pain has been well-established as a con -\ntributing factor to emotional distress, the development of \nanxiety and/or depression, and feelings of loss of control \nand helplessness [2]. All of these effects are a potential det-\nriment to a patient’s everyday functionality in professional \nand social contexts and can damage and strain the patient’s \nrelationships.\nIt is also important to discuss how disparities and biases \nplay a role in the current healthcare system. Recent stud -\nies have shown that there remain medical professionals and \nBackground\nFemale Chronic Pelvic Pain (CPP) is defined as 6 months of \ncyclic or noncyclic pain localizing to the anatomical pelvis \nthat frequently alters pain sensitization mechanisms in the \ncentral nervous system [ 22, 25]. While CPP can be associ -\nated with a range of conditions arising from pelvic organs to \nmusculature, it is also associated with several gynecologic \nconditions, such as endometriosis, fibroids, PID, and adhe -\nsive disease. Given that nearly 1 in 4 women globally suffer \nfrom CPP, being aware of the etiologies and knowing how \n \r Sydney Love Cush\nsydney.cush@northwestern.edu\n1 Feinberg School of Medicine, Northwestern University, \nEvanston, USA\nAbstract\nBackground Female Chronic Pelvic Pain (CPP) is a common, complex, and multifactorial disease that is associated with \na number of non-gynecologic and gynecologic conditions. The physical symptoms associated with CPP can contribute to \nemotional distress, ultimately affecting a woman’s quality of life. It is imperative now more than ever to further investigate \nhow stereotypes and racial and gender disparities operate in CPP diagnosis and management for Black women, which was \nthe ultimate goal of this study.\nMethods A qualitative design was implemented that focused on one-on-one semi-structured interviews with 4 categories: \nGeneral Understanding, Diagnosis Experience, Social and Economic Barriers, and Treatment Stage. The study had a total \nof 30 participants that self-identified as Black and were between the ages of 18–65. Thematic analysis and consolidation \nrevealed 3 prevalent themes.\nResults/Discussion First, Black women have an understanding of and subjective familiarity with their CPP diagnoses reveal-\ning knowledge may not be a limiting factor to receiving care. Secondly, the interviews revealed themes of “dismissal” and \n“normalization” of pain that appeared a total of 70 times across several social and medical contexts. Finally, a novel theme \nof “self-advocacy” emerged. Black patients feel a necessity to fight for recognition and adequate medical care. This, along \nwith the known emotional distress linked to chronic pain contributes to increased mental load for these women.\nConclusion Overall, this study is a call to action for increased empathy in the provider-patient relationship, eliminating ste-\nreotypes in healthcare treatment, and emphasizing mental and emotional states in pain management.\nReceived: 14 April 2025 / Revised: 17 November 2025 / Accepted: 19 November 2025\n© The Author(s) 2025\nBlack Women’s Response to the Dismissal and Normalization  \nof their Chronic Pelvic Pain\nSydney Love Cush1  · Alithia Zamantakis1  · Magdy Milad1  · Linda Yang1  · Taylor Keys1  · \nOluwateniola Brown1  · Melissa Simon1\n1 3\n\n\nJournal of Racial and Ethnic Health Disparities\ntrainees who hold false beliefs about the biological differ -\nences in pain between patients based on race [ 20]. Stereo-\ntypes about Black people having “thicker skin” -- which \nhas roots in slavery– can interfere with pain management \nstrategies for Black patients promoting health discrimina -\ntion and endangering health [20]. Further, Black women are \nstill diagnosed with endometriosis and CPP less often than \ntheir White counterparts [ 3, 4, 12] and have lower referral \nrates to pelvic pain specialists 35, despite having significant \npain severity and interference, and an equal willingness to \ntry medical, surgical, and alternative therapies[28].\nThere are also well-researched gender-related disparities \nin the management of pain between men and women. In the \nED, only 38% of women receive any kind of analgesic for \npain complaints compared to 47% of men, demonstrating \nthat female pain is often overlooked and undertreated [15].\nThe collective contribution of multiple marginalized \nidentities, such as race, gender, and class, and their effect \non bias is known as intersectionality, a term coined by Kim-\nberlé Crenshaw [5]. As a result of intersectionality in health-\ncare, Black women are at the brunt of the conjoined effects \nof both racial and gender disparity described above, making \nit exceedingly more difficult for their pain to be validated \nand managed appropriately. Further, the intersectionality \nof race, gender, and class in institutions such as hospitals \ncan classify Black women as lacking “competence” when \nit comes to their care, which is merely an imposed social \nstandard [7]. It crucial for clinicians to not only adopt an \nintersectional lens when considering CPP in Black women \n[24], but to remember that there is no correct presentation \nof chronic pelvic pain; no patient is more deserving of care \nbased on their behavior or descriptions of their condition \n[7].\nWhile the International Federation of Obstetrics and \nGynecology and the International Pelvic Pain Society have \ncommitted to universal health coverage for gynecologic \ncare, there has been little research done in this area and few \nadvances to make this goal realized 34. Even less has been \ndone from the point of view of Black women experiencing \nthe effects of racial and gendered biases. As a result, this \nstudy aims to document the knowledge and subjective expe-\nriences of Black women diagnosed with CPP to elucidate \nbarriers, stigma, and discrimination in the CPP diagnostic \nand management processes that may be present due to bias.\nMethods\nStudy Design\nFrom January 2022 to June 2024, we recruited self-iden -\ntified Black women who presented chronic pelvic pain in \nthe setting of fibroids, endometriosis, adenomyosis and \nother CPP diagnoses. Patients were included if they were \nbetween the ages of 18–65, assigned female at birth, Eng -\nlish-speaking, and managing CPP for 3 months or longer. \nPatients were excluded if they were pregnant, incarcerated, \nor had cognitive impairment as their designations as pro -\ntected populations necessitate additional protections and \nIRB procedures that go beyond the scope and resources of \nthe present study.\nPatient recruitment followed a three-pronged approach. \nFirst, we developed paper fliers with study information to \nbe displayed in the Minimally Invasive Gynecologic Sur -\ngery (MIGS) and Reproductive Endocrinology and Infertil-\nity (REI) departments at Northwestern Memorial Hospital. \nSecond, MIGS physicians identified prior patients meeting \nthe inclusion criteria, and an investigator (SLC) connected \nwith potential participants via phone. Lastly, MIGS physi -\ncians introduced the study to new patients coming to their \nclinics for an investigator (SLC) to interview during their \nappointment. Participants were recruited using purposeful \nsampling [28, 29] with ages ranging from 18 to 65 years. \nThis was to ensure a diverse range of perspectives, while \nmaintaining representation of the patient population with \nthe highest prevalence of these conditions. Finally, each \npatient was rewarded with a $25 gift card for their participa-\ntion, funded by the discretionary research funds provided by \nthe attending physician overseeing the study. The incentive \nwas approved by the Institutional Review Board and was \nintended to compensate participants for their time.\nWe conducted semi-structured interviews to understand \nthe experience with their CPP, their perceptions of their \nmanagement, barriers to care, and experiences of racism \nand/or sexism in the context of seeking care for their CPP. \nWe iteratively developed an interview guide with input from \na multi-disciplinary team of experts that treat various condi-\ntions associated with Pelvic pain. Interviews were completed \nin person and/or by phone, based on patient convenience.\nWe originally planned to interview 30 women with \nthe option to recruit beyond these numbers if thematic \nsaturation was not reached at this sample size. This study \nwas approved by Northwestern University’s Institutional \nReview Board (STU00219565).\nData Analysis\nWe conducted a thematic analysis, which allowed us to sys-\ntematically organize and identify patterns across the inter -\nviews. Patients were contacted via phone number in the \nelectronic medical record or during their visit to the North -\nwestern Complex Gynecology Office in Chicago IL [ 6, 23, \n30] Verbal and written informed consent was obtained. Each \ninterview followed an interview guide (Table 1) modified \n1 3\n\nJournal of Racial and Ethnic Health Disparities\ndepending on the participant’s answers. Interviews ranged \nfrom 10 to 137 min for an average of about 74 min and were \nconducted from October 2023 to December 2024. Partici -\npant demographics, particularly age and insurance status, \nwere collected after interviews via the electronic medical \nrecord under IRB-approved access. Participant ages ranged \nfrom 20 to 56 with an average age of 38, and roughly 2/3 \n(63%) had private insurance vs. public (27%) or no insur -\nance (10%).\nResearchers (SLC, AZ) developed a codebook based \non the interview guide that acted as a framework for stan -\ndardized identification of repeated concepts, known as \n“codes,” across interviews [6, 23, 30].Interviews were then \nde-identified, transcribed, and input into Excel where the \nresearchers manually extracted lines of transcript that evi -\ndenced each code. Related codes were grouped to estab -\nlish major themes that were organized by “relevance,” \nwhich was determined both quantitatively and qualitatively. \nTable 1 Interview guide questions\nCategory Question Subquestion/Probe\nGeneral \nUnderstanding\nWhat is your current diagnosis that gives you chronic pelvic pain? What do (fibroids, \nPCOS, endometriosis, etc.) mean to you?\nBefore treatment/management, what did you know about endometriosis, if anything at \nall?\nWhat are the most important things you have learned about endometriosis regarding \nits cause and mechanism in the body?\nAre you aware of the risk factors that are associated with endometriosis?\nPath to \nDiagnosis\nWhen did you first start feeling symptoms of endometriosis? Can you describe what these symp-\ntoms felt like and their severity?\nBefore seeking medical intervention, what did you originally believe these symptoms \nwere?\nWhen these symptoms first appeared, how long did it take (in days, months, years, \netc.) for you to go to the doctor’s office?\nWhat made you seek treatment for \nendometriosis?\nWas endometriosis the first diagnosis that you received? If not, what were other potential \ndiagnoses that were in the running?\nHow long did it take from the time you started feeling symptoms until you were diag-\nnosed with endometriosis?\nBefore your diagnosis, how was your pain perceived by you, healthcare providers, and \nfamily members?\nSocial and Eco-\nnomic Barriers\nDid you experience any barriers that prevented you from receiving medical care for \nyour symptoms?\nIf so, can you describe these \nbarriers? How did you manage to \nresolve these barriers, if at all?\nIn general, what social barriers did you face in receiving endometriosis care?\nIn general, what economic barriers did you face in receiving endometriosis care?\nHave you experienced any stigma when trying to find care for your endometriosis? If so, explain.\nHow can structural racism affect your or other Black women’s access to endometriosis \ncare and outcomes?\nTreatment \nPhase\nHow are you currently treating your endometriosis? Have you found these current treat-\nments easy to manage?\nHow did you decide which therapies to utilize in your endometriosis?\nWhat are your perceptions of each treatment technique? (Surgeries, medicines, alter-\nnative therapies, etc.)\nWhat methodologies (Surgeries, medicines, alternative therapies, etc.) have you tried \nin the past to manage your symptoms?\nWhich of these did you find \nbeneficial? Which of these did you \nfind ineffective? Which of these, if \nany, did you think aggravated your \nsymptoms?\n1 3\n\nJournal of Racial and Ethnic Health Disparities\nThroughout some of the interviews, including these above, \nparticipants were using terminology and language not typi -\ncally expected of any layperson. From discussing correla -\ntions with fertility to accurately defining the definition of \nfibroids to even explaining the predominant theories on the \npathophysiology of endometriosis, these women are operat-\ning on a level close to or matched by a healthcare provider \nwithin the field of women’s health.\nSubjective/Experiential Familiarity with CPP\nIn addition to demonstrating familiarity with empirical defi-\nnitions and research on CPP, participants often recognized \ntheir own symptoms through shared experiences with others \nfacing similar conditions. One participant (19), for example, \nin response to being asked about how she learned the risk \nfactors of her adenomyosis, stated,\n“Through my mother… She had very difficult periods \nand a very rough time with the three pregnancies that \nshe had that were successful. I’m glad to be here, but \nit was very much so an accident and I did not give her \nan easy pregnancy whatsoever. And even then she was \nshowing signs, but they didn’t know what it was.”\nAnother participant (24) echoed a similar sentiment,\n“So I knew a little bit because my mom had fibroids \nlike…. So we try to be pretty open about like medical \nstuff that’s going on. So I knew that it was something \nthat was causing her pain and something that she had \nto get removed with surgery. That’s all I really knew \nabout them.”\nBoth participants highlighted, in the absence of a medical \ndiagnosis, the importance of shared familiarity with CPP.\nSimilarly to these participants, others discussed seeing \ntheir female family members struggle with CPP diagnosis \nfirsthand. As a result, they were easily able to quote some \nsymptoms, and treatments experienced by their mothers, \nsisters, and aunts before even experiencing it themselves. \nSubjective understanding works in tandem with objective \nunderstanding because it can help patients differentiate \nbetween normal and pathologic symptoms of menstruation, \nwhich is an established barrier to swift CPP care [ 8]. Fur-\nther, prior familiarity with these diagnoses provides patients \nwith a solid educational background that can better inform \ntheir management decisions [11, 13].\nAll in all, the theme of Correct Diagnosis Understand -\ning (Objective Understanding)  came up 33 times while \nAwareness of CPP condition (Subjective Understanding)  \nappeared 51 times throughout the 30 interviews. This is \nQuantitative “relevance” was determined by the frequency \nthat that theme appeared across interviews, while qualitative \n“relevance” was meant to identify themes that were novel to \nthe existing literature.\nResults\nBlack Women Truly Understand CPP Diagnoses\nAcross interviews, participants spoke at length about famil-\niarity and knowledge regarding their CPP diagnoses. This \nwas demonstrated by participants reporting facts or experi -\nences that align with accepted definitions and diagnoses of \nCPP in the medical literature. Knowledge was discussed in \ntwo ways by participants: (1) understanding of CPP diag -\nnosis and (2) subjective/experiential familiarity with CPP \ndiagnosis.\nUnderstanding of CPP Diagnosis\nParticipants frequently mentioned risk factors, etiologies, or \noutcomes of CPP diagnoses, that have been well-established \nin current literature. One participant (25), when asked about \nwhat she has learned about her diagnosis stated,\n“And that’s pretty much what I know. Like some folks \nthink it’s caused by retrograde menstruation. Which is \nlow-key kind of crazy because I don’t know that they \ncan go in reverse. But who knows?”\nThis participant outlined the current leading theory on the \netiology of endometriosis and demonstrated an understand-\ning of the disease matching current healthcare profession -\nals’ knowledge. Another participant (21) mentioned,\n“So there are a lot of risks. I mean, the biggest one is \nlike infertility for me. I’m interested in having kids. \nThat has been a barrier for me to have kids with hav -\ning fibroids. I think another concern is just that they’ll \ncome back [after you] have them removed.”\nSimilarly, a separate participant (9) echoed,\n“I’m told that they’re very common in Black women. \nBut I’m also told that like non-Black women, up to \n70% get them…I know it could, it could interrupt fer-\ntility…everything I've done is to kind of preserve…\nwell, it absolutely is to preserve fertility” \nBoth participants were familiar with the potential chal -\nlenge that fibroids may have on fertility and pregnancy. \n1 3\n\nJournal of Racial and Ethnic Health Disparities\nuntil the symptoms changed or worsened. Here, it is clear \nthat there is a conflation of normal and pathologic pain \noccurring which contributes to patients pushing their pain \n“to the side.”\nProvider Reception of Pain\nIn this context, we included all quotes from participants that \ndemonstrated their concerns about being ignored by a nurse, \nphysician of any specialty, or other healthcare provider that \nthey interacted with during their CPP diagnosis and man -\nagement journey. Unfortunately, this category exhibits the \nhighest frequency of instances of both dismissal and nor -\nmalization with a total of 37 quotes categorized under this \nsubtheme (Table 4). Many participants discussed how CPP \naffected everyday functioning difficulty participating in \nwork, school, or other activities, which demonstrates sever-\nity. However, despite this, their symptoms were still not met \nwith concern, or even belief. One participant (16) discussed\n“I had an IUD perforate in my uterus, and nobody \n******* believed me for a year and a half… I had no \nquality of life. I was not able to go to work. I was not \nable to go to school and I was delirious from blood \nloss….”\nFurther, the responses show several instances of providers \nchalking up the CPP symptoms as a normal part of menses, \nmenopause, and/or puberty; one provider even discussed \nthis from a religious perspective. Participant (12) shares.\n“I was told, and I quote. It hurts [me] so bad because \n“Eve ate the apple.” By a white family practice person \nthat did my paps. That's what she told me.”\nMost concerningly, this subtheme demonstrates that par -\nticipants are aware of stereotypes that providers use against \nthem when determining the level of attention and concern \nput towards their CPP and exploring appropriate manage -\nment options. Participant (30) says.\n“I was constantly fighting… The medical industry \nassumes that Black women’s skin and everything is \ntougher and thicker. And there is a history behind \nthat… we were cut open and experimented on based \non falsehoods. So that some of the doctors, even of \nmy own skin tone, were kind of just dismissive of it \nand it hurt.”\nAll responses from all three subthemes demonstrate that \nBlack women face their symptoms being ignored in every \ncontext. That, along with the use of racial stereotypes that \nimportant because oftentimes, education regarding particu -\nlar diagnoses and their associated symptoms can make the \ndifference between seeking/not seeking care, especially in \nminority populations, and influences treatment decisions \n[8, 11, 13]The saturation of these themes within the inter -\nviews demonstrates that the Black women in this study are \nwell educated on these topics even when there is not much \ninformation available online [19], indicating that education \nabout CPP diagnoses such as endometriosis, fibroids, and \nadenomyosis is likely not the only barrier for Black women \nreceiving timely care.\nCPP Dismissed and Normalized\nAlthough aspects of CPP were well understood by the \nparticipants, there was still apattern of dismissal and nor -\nmalization of Black women’s experiences related to their \nCPP diagnoses. The themes “dismissed” and “normalized” \nappeared a total of 70 times across all 30 interviews, and \nwere divided into 3 subthemes: Social/Familial Reception, \nPersonal Reception, and Provider Reception of the Partici -\npant’s CPP:\nSocial/Familial Reception of Pain\nIn this context, we included all quotes in which participants’ \npain symptoms and concerns were ignored by family mem-\nbers, friends, coworkers, or other individuals they engage \nwith during their everyday lives. Table 2 lists a total of 10 \nresponses that fit this subtheme. Participants discuss an \narray of negative responses to their pain from coming up \nwith explanations other than menses, to being told to eat \nchocolate, it’s just a bad period. Several participants recall \nemotional harm done by this minimization. On the whole, \ntheir CPP is not met with urgency or concern, resulting in \nexpressed emotional harm from the participants.\nPersonal Reception of Pain\nThis context included all examples in which the patient \ndismissed or normalized their pain, which while present, \nis not very commonly found, only appearing a total of 9 \ntimes across interviews (see Table 3). One participant (27) \nmentions.\n“I just thought it was just a part of [menses], like I just \nthought ‘oh, I’m just going to be cramping really bad and \nbleeding really bad like for this little time.’ But then it \nstarted getting to the point where it was like when I was \nhaving [periods], like multiple times a month. And I'm like, \nI thought it was only one time. What's going on?”\nThis sentiment echoes other participants; they assumed \nthat their pain was normal and therefore didn’t seek help \n1 3\n\nJournal of Racial and Ethnic Health Disparities\nPerceived Need for Self-Advocacy in Health Care \nSettings\nThe final significant thematic finding discovered during the \ninterviews and qualitative analysis was “self-advocacy,” \nappeared a total of 16 times across interviews, led to emo -\ntional distress and hurt for many of the women interviewed. \nEmotional and physical states of wellness are known to be \nwell intertwined, and as a result can play a detrimental role \nin a patient’s holistic well-being [11].\nParticipant (11): So I didn’t think that was normal, right? And I’d always had painful periods, and I was \nalways told it was normal. My mom would tell me oh, I had painful periods at your age too. Oh, just take \nibuprofen. Go take a hot bath. Have some chocolate. You’ll be OK. Right? But very suddenly it was in \nmaybe 2017 I just started bleeding every couple weeks, sometimes every other week, and I was thinking.\nParticipant (11): It was completely new to me and I talked to my parents about it. My mom said ‘Oh, \nyou’re probably just sleeping wrong.’ I’ll get you a foam mattress pad and probably that’ll make it better \nand just…it felt a little dismissive, but like I don’t. I don’t think sleeping in a funny position at night \nwould cause you to have bleeding more frequently. That’s what happened as well. Yeah. Yeah, I forgot \nabout that.\nParticipant (11): Because the pain was that severe at that point, well…I just said at that point, repeating \nmyself a little bit, but yeah, the pain was so severe and it was messing with my job and my mom was in \nthe car and she was agreeing with the gynecologist that I should go see a therapist and a psychologist and \njust like, are you serious? You believe this lady? When it’s my body, I’m telling you what’s going on? I’m \nyour daughter. And you’re agreeing with some stranger that you’ve never met before about what’s going \non with me. And I was just– upset. Very, very upset.\nParticipant (11): And so I kind of wish, he said that to my mom a little bit because she’s still treats me \nthat way with recurrence of symptoms that I have that I happen to mention to her. And just like reminds \nme of that time back in 2017 and I told you I didn’t like that. That wasn’t very good, but maybe that’s \njust 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 \nworry about it. Maybe.\nParticipant (11): Yeah, I don’t. I don’t know why the male gynecologist, gynecologists that I’ve seen have \ntreated me way better than the women. But that’s interesting. That is I would always think it would, or \nI always thought that it would be the opposite because it’s just like, oh, you have similar parts you can \nkind of relate, right? But No, in my experience they were more dismissive. Not only the doctors, but my \nfriends and my family too, because I’ve had friends and we were talking about issues and they’re just like \noh, that’s normal. Why did you get surgery for that? Why are you even treatment for that? It’s just. It’s \njust 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 \ntelling my male friends like my period issues.\nResearcher: So to clarify what you’re saying, you’re saying that. Even people in your life are like ohh \nyeah, it was just a bad it’s just bad period pain.\nParticipant (15): Yeah, just bad period pain. Not really knowing or understanding what it is or what it \nstems from, or what it could be, you know. More than just a bad cycle or just cramping.\nParticipant (16): Over like my whole life and my family didn’t really explain periods and take me to the \ndoctors. And then when I saw doctor, they then explained in full. So I basically was in a cloud but not \nunderstanding what was happening or why. But even have the capacity to ask that it was just happening.\nParticipant (16): Well my I was raised by my grandmother. Who really didn’t believe in doctors. And I \nfeel like she’s a little bit narcissistic. So she was just like man, I used to have really bad periods too and \nwould like step over me and then go back to doing whatever she was doing. So like, you know. Just be \nlike. Yeah, I get what you’re going through, but like, there wasn’t the bridge of, like, take this person to \nthe doctors. They have something wrong.\nParticipant (16): When my mother did get involved, I don’t even blame her for not understanding what \nwas happening because it was a generational thing where like now, like, I feel like my mother had, like, \na lot of health problems that were dismissed. And so I feel like that made her unable to care for herself, \ntherefore unable to advocate for me because. She does advocate when she has the knowledge, but like if \nyou don’t even know something’s a problem.\nParticipant (19): And my mom felt very bad because she was. She’s trying to like, you know, tough me \nthrough 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 \nball 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 \nin a ball on her bed. Like, no, this is this is bad.\nAnd so that’s kind of when I. Knew. This should not be as bad as it is, especially now that I’ve had sisters \nand their periods were easy like. I’m like ‘what? What? What do you mean? You should be in pain right \nnow.’ And like they still go out and do stuff and everything. But no, that that first period was like, you \nknow, this is weird and it only got worse and it would, like, get worse, plateau out. And we, which I was \nlike, OK, it’s crappy, but I’ll handle it. And then it would get worse again and it plateaus up. My uterus \ndoes not like me whatsoever\nTable 2 Social/Familial reception \nto patient CPP\n \n1 3\n\nJournal of Racial and Ethnic Health Disparities\nbelieved from my doctor. So I knew I had to do my \nown research. I knew I had to….”\nIn this response, the participant discusses how she felt com-\npelled to investigate her diagnosis herself because her pro -\nviders were not knowledgeable about endometriosis and \n“refused” to give [her] diagnostic imaging.\nJust like this participant, several others turned to the \ninternet for information, which this participant (21) echoed:\n“I have again advocated for myself. I have been very \nintentional about the doctors that I have, who have \nmy best interests so…It’s just, yeah, I do my research. \nI was recommended to Doctor M. But like, I also \nlooked him up. I also looked at his reviews. When I \nwhich, in this study, includes examples and responses of \nany time participants’ actions and words were used to try to \nleverage themselves to get a better outcome for their pain. \nThe first example is the previous participant (30), who uses \nthe phrase “I was constantly fighting…” when discussing \nher time in the doctor’s office, painting a picture of obliga -\ntory combativeness that she feels she must take on to have \nher concerns heard. Another participant (3) mentions\n“Without having access to scholarly articles…I am \nvery far from a medical student but I felt like I had to \n[do endometriosis research]. Yeah, there wasn’t any -\nbody else who was going to do it for me. So I had to \ndo it for myself…Unfortunately, the medical-indus -\ntrial complex is not built for me. And I wasn’t being \nTable 3 Individual reception of pain\nParticipant (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 \ncramps, 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 \nwhat 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 \nof pain or I was, but it you know it wasn’t like the worst pain. I could be in.\nResearcher What? What did you think about your pain?\nParticipant (2): I thought it was normal or, you know, just the.\nResearcher: Sure. And did other people, like healthcare providers, family members like kind of go along with that story or were they the ones \nwho encouraged you to kind of get help?\nParticipant (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.\nResearcher: 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 \nfolding in on itself how was your pain perceived by you like? What did you think your pain was?\nParticipant (3): It was just hurting real bad and I just got tired of it. Like it was mental and it was stressful.\nResearcher: And so where did you originally believe that these symptoms were? You just thought they were bad periods,\nParticipant (6): Just bad. That’s what I’ve been told all my life that I just had. Bad periods.\nParticipant (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 \nknew 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 \nI 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 \ntoo. 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. \nIt 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 \ncertain 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. \nThat 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 \nstill 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, \nlike, 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 \nimpact. Of the hybrid. OK.\nResearcher: OK. OK. And then what about you? How did you perceive your pain?\nParticipant (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 \ntime, 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 \naround. 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 \nit wasn’t really that bad. Like I said, it has intensified once I moved back.\nResearcher: 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 \nbeginning of when you first started feeling the symptoms, what did you originally believe that they were when you started feeling them as a \nteenager?\nParticipant (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 \nthat would never really like help. So.\nParticipant (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 \ncramping 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-\ning them, like multiple times a month. And I’m like, I thought it was only one time. Like, right? What’s going on?\nParticipant (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 \nsomething 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 \nit 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 \nto hurt or not, whether it’s normal to hurt or not, it shouldn’t hurt. It’s not supposed to hurt.\n1 3\n\nJournal of Racial and Ethnic Health Disparities\nParticipant (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 \nbefore 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 \nthe 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. \nAnd 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 \nI 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 \ndoctors like you.\nParticipant (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 \nthey probably should. They should have listened, you know, it was a bad idea like, where’s this urine going? If I can’t pee?\nParticipant (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 \ncomputer 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. \nI 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 \ntell 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 \nbleeding…\nParticipant (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 \nher 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 \nyou 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 \nnot 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 \nare 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 \ndid 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 \ncontrol pills. So that was the end of that appointment and I picked up a prescription for oral contraceptives for the next month.\nParticipant (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 \nknow 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 \nanymore. 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 \nhe thought that it was my bladder…\nAnd 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-\ncologic 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.\nParticipant (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 \nso bad because “Eve ate the apple.” By a white family practice person that did my paps. That’s what she told me.\nResearcher: And was fibroids the first diagnosis that you received once you started going to your own doctors?\nParticipant (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.” \nSo 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-\ning her my issues and she was the first one to dive into it and tell me I had fibroid.\nParticipant (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 \nolder, 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 \nlike, 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 \nhere 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.\nResearcher: 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 \nand it was that Doctor that said I actually think it might be something else.\nParticipant (13): Exactly.\nPatient (13): Right. Yes. OK. And in Nashville, they’re very dismissive.\nParticipant (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 \nchild. 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 \nand 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 \nbreathe.” And then when they are done, nobody is thinking what happened. They came in here with a my bad and they left the room.\nParticipant (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-\ntion for it to fibroids in Nashville. It was always warm compresses. Take a Motrin, take a Tylenol. Everything was always related to getting older.\nParticipant (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 \nyour 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 \nAdvocate Christ and I could barely walk. I was in pain. So I’m like, if I’m coming to the hospital, can\nbarely 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, \nyou know, there’s just something women go through and they kind of just prescribe me they did only prescribe me pain medication.\nParticipant (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 \ndefinitely 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 \nnot 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, \nlike, 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, \na reason that I’m living like this because, like everyone else around me is not.\nResearcher: Have you experienced any stigma when trying to find care for your pain?\nParticipant (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 \nexperience. 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 \nnecessarily 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 \nfeel 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 \nperforating through my uterus. They couldn’t find those notes and didn’t necessarily believe me.\nTable 4 Provider perception of pain\n1 3\n\nJournal of Racial and Ethnic Health Disparities\nParticipant (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 \nbefore 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 \nthe 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. \nAnd 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 \nI 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 \ndoctors like you.\nParticipant (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 \nmental 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 \nfeel 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 \nI 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 \ndifferent 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 \nI 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 \nthe 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 \ndoctor. 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 \nwhich harms me more to get that taken off of there.\nParticipant (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. \nI’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-\nously about it.\nParticipant (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-\ngist 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 \ntelling 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 \ndoctor 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 \ndoctor can harm you and ignore your problems…\nParticipant (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 \ndoesn’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 \nI 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 \ndehydrated, 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 \nbacterial 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 \nlike, everything might just be fine.\nAnd 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 \nbeing the. Just in the future and I’m like, how do I get care?\nResearcher: Say more about that [doctor being confused]\nParticipant (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 \ndon’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 \nand 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-\nnitely blind at several points with being. And so. When I saw my other gynecologist. Because I think my mom took me to her first.\nParticipant (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 \nwas 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 \none 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 \nanymore, 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 \nknow, 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.\nParticipant (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 \nof 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 \nprocedure, 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 \nI 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 \nas 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 \nthat, 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 \nexperiencing the pain that I that I Said I was.\nParticipant (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 \nhappens 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 \ntelling 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 \nwhen 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 \nbirth control. Or here’s another ibuprofen prescription and see you later.\nParticipant (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 \nand 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 \nlike, 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 \ntold them that nothing’s really wrong with me, I guess. I guess there’s nothing I can do because. Nobody else believes that. Yeah.\nParticipant (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 \nlater 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 \nwent to the ER because they were so bad that I couldn’t focus on anything else. I mean was just horrible pain.\nYou 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 \nbloody stools too. Just a couple but I called the nurse on the back of the Blue Cross Blue Shield.\nTable 4 (continued)\n \n1 3\n\nJournal of Racial and Ethnic Health Disparities\nto ensure that she would be safe in his hands. Another strat-\negy is discussed by another participant (9) here:\n“My pain is minimized. I have done a lot of work \nto make myself be seen…I talk about my advanced \nmet him, I asked questions. So like there’s a lot that \ngoes into it….”\nInstead of researching her diagnosis, this participant’s ver -\nsion of self-advocacy was to heavily research her provider \nParticipant (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 \nbefore 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 \nthe 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. \nAnd 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 \nI 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 \ndoctors like you.\nParticipant (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 \nmy 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 \nto 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 \ngynecologist 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 \nbirth control giving something I’m not super comfortable with right now just because birth control (combined contraceptives) in my past has…I’ve been \nsuicidal when I was on birth control. It’s also caused a decrease in libido, vaginal dryness and. And weight gain.\nParticipant (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 \nso dissatisfied. I have located for myself and just was doing some research about endometriosis specialists in Chicago. Which is how I found this complex \ngynecology 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-\ncologist 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 \nabout, 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…\nParticipant (25): OK. Yeah. Family members were, you know, obviously concerned. The healthcare providers were kind of I just…Well, my primary care \ndoctor, 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 \nthis 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 \nshe 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 \nthought to myself like maybe I am making this stuff up, you know like I am.\nParticipant (25) You know, just because I my experiences weren’t being validated by medical professional and I was like maybe psychosomatic because \nI 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 \nstarted crying because it made me feel like. I wasn’t making things up.\nI 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 \nthat I was experiencing so much.\nParticipant (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, \nis 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 \nthat I already tried, it’s not working and it’s like..\nResearcher: OK. And before your diagnosis, how was your pain perceived by you already talked about you, but how was it perceived by healthcare provid-\ners and then also family members that you told about?\nParticipant (28): Dismissive, dismissive.\nParticipant (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 \nabout 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 \ndidn’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 \nSchool 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 \nknow, 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.\nParticipant (28): So I established care completely. With the USC healthcare clinic and I remember telling my primary care doctor, hey, you know, I’m \nhaving 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. \nConversation 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 \nto protect yourself during having sex. And I\nwas like, what? I’m not even having sex. Like you’re completely like missing the point of what I’m trying\nto 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. \nDon’t feel safe. She gave me a bag of condoms. And was like, godspeed. That’s literally how she treated me.\nParticipant (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. \nAnd 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 \nschool 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.\nParticipant (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 \nwas 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 \nof dismissive and passive about it because.\nParticipant (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 \nextremely 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-\nern 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.\nTable 4 (continued)  \n1 3\n\nJournal of Racial and Ethnic Health Disparities\nnormalizing symptoms can contribute to delays in diagno -\nsis, prevent women from seeking health services, and ulti -\nmately result in poor management and poor outcomes [26]. \nOur study establishes that this same pattern exists for Black \nwomen with CPP in the US. However, one significant find-\ning from this study is that health literacy and understanding \nof their diagnoses was not a significant factor in why Black \nwomen were not receiving appropriate care. Rather, the \nnormalization and dismissal of pain experienced by Black \nwomen in this cohort is instead tied to racist medical stereo-\ntypes and the choice by providers to ignore the experiences \nof Black women.\nFurther, we emphasize the importance of self-advocacy, \nand its role in Black women’s struggle for access to medical \nresources. While this is a novel theme for medical literature, \nthis concept was first discussed in Tressie McMillan Cot -\ntom’s essay “Dying to be Competent.” As in this study, the \nessay argues that Black women are forced to demonstrate \nand prove their “knowledge” as a mechanism to be helped \nor merely validated in healthcare settings [ 7]. Examples \nof this are abundant in our interviews, from conducting \nonline searches for diagnoses and providers to mentioning \nadvanced degrees during appointments. Black women face \nnumerous challenges in navigating the healthcare system \nand obtaining adequate care. Existing studies have linked \nchronic pain to emotional distress, psychiatric issues, and \nfeelings of helplessness [ 32] The dismissal and normaliza -\ntion of pain, coupled with the need for self-advocacy, adds \nemotional labor during medical visits, increases stress and \nmental load, and steepens the already uphill battle to finding \nrelief from what may be a lifetime of pain.\nLimitations\nThis study has some limitations. First, the sample comes \nfrom a purposeful sample of patients from one academic \nresearch institution in Chicago, Illinois. Further, the demo -\ngraphic data collected on the participants in this study is \nlimited to age and type of insurance, which is only a rough \nproxy for socioeconomic status [27]. Education and income \nlevel were not outright documented.Therefore, the par -\nticipants of this study may not be representative of Black \nwomen across the country. This is important when con -\nsidering information in relation to barriers to care. While \nfamiliarity with and knowledge about CPP diagnoses were \nprevalent in this study’s population, we must not exclude \ninformation access as a barrier to diagnosis and treatment \nfor the population of Black women as a whole.\nWe also recognize that selection bias can occur during \nevery step of the research process. We attempted to mitigate \nthis by using multiple forms of recruitment and multiple \ninterview modalities for participant convenience. However, \ndegrees or education to kind of elevate my, I guess, \nsocial status to make it seem like I’m not someone who \ncan just be passed over. I’ve also asked better ques -\ntions and follow up in a way that I didn’t before….”\nIn this example, the patient discusses some of the “tactics” \nshe uses to prevent being dismissed in the healthcare set -\nting, as a way to make her seem more important and “wor -\nthy of attention,” as this same participant mentioned later in \nthe interview.\nWhile this only appears in just under 30 instances \nthroughout the interview, this is a novel theme that outlines \na change in behaviors and the way that Black women act in \nthe healthcare space as a mechanism for equal treatment. \nBlack women are aware of the way that their identities \ncould play a role in their lack of treatment and feel obligated \nto “take matters into their own hands” as a last-ditch effort \nto circumvent it.\nDiscussion\nOur study reveals that the challenges Black women face in \naccessing appropriate care for CPP stems not just from a lack \nof health literacy or poor understanding of their gynecologic \nconditions. Rather, these barriers arise from racialized and \ngendered biases that serve to normalize and dismiss their \npain. Additionally, the need for self-advocacy in healthcare \nsettings serves as an additional barrier. This study is one of \nthe first to examine Black women’s subjective experiences \nwith CPP with findings highlighting instances of dismissal, \nmedical racism, and the resultant necessity for self-advo -\ncacy regarding pain, which has been identified in perinatal \nsettings [ 31]. Our analysis illustrates that Black women’s \nexperiences of severe symptoms –often impacting their \ndaily physical and social functioning --are frequently dis -\nmissed as mere concessions to be made or habits that must \nbe changed [14].\nDiscriminatory racial biases have been used to inform \ndecisions about healthcare for Black women, both histori -\ncally and contemporarily [9]. These biases have shaped the \nway that Black women have been perceived and treated by \nhealthcare providers, at times leading to less-than-ideal out-\ncomes [17]. While the dismissal and normalization of pain \nhave been documented previously, this study specifically \naddresses how these experiences manifest for Black women \nwith CPP, and links established stereotypes to these themes. \nOur data reveal that these stereotypes can shape how Black \nwomen’s pain is perceived by healthcare professionals.\nPrevious research demonstrates the stigma regarding \nendometriosis pain. In a study completed in Latin America \nand the Caribbean, researchers found that dismissing and \n1 3\n\nJournal of Racial and Ethnic Health Disparities\nprefer that their sexual health provider be of the same race \nand gender if available and have high rates of satisfaction \nand trust in their care when this concordance occurs [2, 33]. \nInterestingly, one of our participants, in contrast to existing \nliterature, noted that she has received biased treatment from \nproviders of color. This highlights that increasing diversity \namong our healthcare workforce may be critical to further \nimproving the experiences of Black women seeking care \nfor CPP, but it is not a cure-all. Further, this patient’s expe-\nrience emphasizes the need for improved bias training as \noutlined above. Lastly, there is data that demonstrates the \nbenefit of patient narratives in clinical pain assessment and \ngenito-pelvic pain therapy [ 1] It is imperative that subjec -\ntive experience as well as mental and emotional stressors \nbe incorporated into pain care alongside medical and surgi-\ncal interventions to create a more holistic treatment model, \nespecially for patients who already experience devaluation \nin the healthcare space. By prioritizing these strategies, the \nhealthcare system can begin to dismantle the barriers Black \nwomen face and foster equitable, compassionate care for all \nindividuals experiencing CPP.\nAcknowledgements We extend our deepest gratitude to all the \nremarkable women who participated in this study. It has been a privi -\nlege to hear your stories and amplify your voices. By contributing to \nthis research, you have not only helped advance our understanding of \nendometriosis, fibroids, and other chronic pelvic pain diagnoses but \nalso empowered future generations to address disparities and create a \nmore inclusive and equitable healthcare system.\nAuthor Contributions Sydney Love Cush : Conceptualization (lead); \nformal analysis (lead); investigation (lead); writing–original draft \n(lead); writing-review and editing (equal). Alithia Zamantakis : \nMethodology (lead); formal analysis (supporting); writing—review \nand editing (equal). Magdy Milad: Supervision (supporting); resourc-\nes (equal); writing—review and editing (equal). Linda Yang: Super-\nvision (supporting); resources (equal); writing—review and editing \n(equal). Taylor Keys: Writing-review and editing (equal). Oluwa-\nteniola Brown: Conceptualization (supporting); writing—review and \nediting (equal); resources (equal); supervision (supporting). Melissa \nSimon: Conceptualization (supporting); resources (equal); writing—\nreview and editing (equal); supervision (lead).\nFunding This study was partially supported by discretionary research \nfunds provided by Dr. Melissa Simon. The funding source had no role \nin study design, data collection, analysis, or manuscript preparation.\nDeclarations\nEthical Approval The study protocol was approved by the Institutional \nReview Board of Northwestern University (STU00219565).\nConsent to Participate  Informed consent was obtained from all the \nsubjects involved in the study.\nDisclosures The authors have no conflicts to disclose.\nCompeting Interests The authors report no potential conflicts of interest.\nwe acknowledge that physician recruitment and fliers in the \nMIGS and REI offices led to lower recruitment of those with \nless healthcare engagement. Further, because we interviewed \nparticipants about previous healthcare and personal experi -\nences, our data is subject to recall bias and may include some \ninaccuracies. Lastly, we chose to exclude pregnant women, \nthose who were incarcerated at the time of interviews, and \nthose with cognitive impairments. These exclusion crite -\nria limit the diversity of our study population, particularly \namong those who experience unique barriers to care.\nConclusion and Future Steps\nThe findings of this study highlight the urgent need to \naddress the systemic inequities that Black women face in \nmanaging CPP within healthcare. Given our data, some \nsolutions lie in decreasing the immense mental load associ-\nated with expressing pain and receiving treatment for pain \namongst Black women, which is often compounded by \nsocietal biases and the minimization of their symptoms. A \nfoundational step involves fostering a clinical environment \nthat validates patients’ experiences and treats their reports \nof pain with the seriousness they deserve. This requires a \ncultural shift within the medical community, emphasiz -\ning empathy and trust in the patient-provider relationship, \nwhich has been shown to improve health outcomes for \npatients with chronic conditions [10, 21].\nFurther, this work adds to the conversation surrounding \nthe use of racial stereotypes surrounding the pain experience \nof Black patients [ 6], which can lead to under-treatment/\nmanagement of pain. As a result, widespread anti-racism \ninterventions can be implemented nationwide, with a focus \non understanding systems of oppression and the history \nbehind stereotypes, along with encouraging administrative \nand leadership buy-in [18]. A particular focus on remedying \nimplicit bias specifically encourages strong relationships \nbetween Black patients and their providers.\nBeyond individual attitudes, systemic solutions are essen-\ntial. Hospitals, clinics, and health professions schools must \nimplement comprehensive bias training programs, such as \ninteractive modules or scenario-based workshops using real \npatient experiences and barriers to care, to help providers \nrecognize and combat stereotypes that may unconsciously \ninfluence care decisions. While evidence of the efficacy of \nthese trainings is mixed, the presence of data supporting \nthe use of implicit bias trainings suggests that when imple -\nmented according to evidence-based practices, these train -\nings can result in meaningful changes for patients [16].\nMoreover, current literature discusses the potential ben -\nefits of racial and gendered concordance in gynecologic \ncare. 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