"Why Would I Talk To Them About Sex?": Exploring Patient-Provider Communication Among Black Women Experiencing Sexual Pain.

Participants were sampled Phase 2 of the explanatory mixed methods Pain and Pleasure Study. Phase 1 consisted of an online Qualtrics Survey. To be eligible for Phase 1 participants had to be (1) premenopausal, (2) under the age of 50, (3) identify as a cisgender Black woman, and (4) live in Southern region of the US. At the end of the survey participants were asked if they wanted to participate in a 45–60 minute Zoom interview. Participants who reported having a reproductive healthcare diagnosis, sexual pain disorder, high levels of sexual anxiety, no experience of sexual anxiety, and have never had an orgasm (outliers) were invited to participate in Phase 2 of the study. All participants that were invited participated in the interviews n=25. Most participants identified as heterosexual (n = 21; 84%) and they were between the ages of 23–44 (see Table 1 ). Interviews were conducted by the principal investigator (first author), three doctoral students, and a postdoctoral research scholar. Interviews were conducted between January and March 2021 using a semi-structured interview protocol. The semi-structured protocol allowed the interviewers the freedom to ask more detailed questions. After each interview, interviewers memoed about their initial reactions and experiences and shared updates in weekly lab meetings. Participants were asked six questions related to their healthcare experiences that were included in this paper to highlight the full model of healthcare experiences, treatment, and patient-provider communication: (1) How often do you see your doctor or OBGYN. If never, what keeps you from seeing a doctor, (2) what are the identities of your doctor, (3) how does race and sex of your OBGYN influence your sexual communication and comfort with them? (4) are you satisfied with your current medical provider? If so, what do you like about your medical provider? If not, what changes would you like to see? (5) how often does your healthcare provider ask you about sexual difficulties (e.g., pain and lack of pleasure) without you having to bring it up? and (6) have you ever talked to a medical provider about sexual pain? If yes, describe the experience. Who initiated the conversation? What did your healthcare provider recommend? If not, what prevented you from having this conversation? What would make it easier to talk to your healthcare provider about sexual pain? For the purposes of this study, sexual pain was defined as unwanted genital pain during sexual intercourse. Interviews were audio recorded via Zoom and transcribed by a third-party company. All procedures were approved by the University of Kentucky’s institutional review board. Data was analyzed using constructivist grounded theory ( Charmaz, 2014 ). Constructivist grounded theory analysis tells a story about people and social processes ( Charmaz, 2014 ). This analysis is informed by the researchers’ viewpoints as well as the participants’ responses ( Charmaz, 2014 ). The first and second authors individually coded the interview data using active codes in Dedoose and memoed after each coding session. During the coding process, new codes were continuously added into Dedoose as they appeared in transcripts. Differences in coding were discussed between the first and second authors until a focused code was agreed upon. During the second round of coding, axial coding was conducted to model the linkages between categories to show the links between concepts and model of patient-provider communication. To ensure the study’s rigor once the categories were decided on the first and second author met with the fourth and fifth authors to discuss the categories and subcategories. This process provided a clear interpretation of the findings. Saturation of codes occurred when no new categories were observed in the data analysis and the full process of patient-provider communication and the pathway to treatment was exemplified.

From the analysis five key categories emerged which are included in the pathway model: (1) provider preferences, (2) healthcare experiences, (3) reasons for non-disclosure, (4) provider responses to sexual pain disclosure, and (5) treatment for sexual pain. The results of the constructivist grounded theory analysis led to the development of a patient-provider communication model (see Figure 1 ). This model is rooted in the lived experiences shared by Black women. Per this model, having a provider with the preferred demographic (e.g., race, gender, and age) and communication style characteristics (e.g., level of directness, empathy) influence reasons for disclosure and non-disclosure, and impact patient disclosure of sexual pain. Further, our model displays a bidirectional relationship between disclosure and provider responses to disclosure and depicts the two factors as directly linked to the patient’s healthcare experiences, which is also influenced by the patient’s ability to advocate for their own treatment. Finally, provider responses to patient’s disclosure of sexual pain and healthcare experiences both directly impact treatment for sexual pain. The model presents various dimensions of patient-provider communication within the sociopolitical context (which we refer to as minority stressors) that impacts the relationship between Black women and their healthcare providers—namely, medical mistrust, history of reproductive coercion, racial-gendered stereotypes, fat-phobia, provider implicit bias, and anti-Blackness. These minority stressors are rooted in anti-Blackness, which is evident in the participants’ quotes in Table 2 . Next, we will discuss the themes in order that they are presented in the patient-provider communication pathway. The first external factor that influences participant’s disclosure of sexual pain is their preferred provider characteristics including specific demographic characteristics (e.g., race, gender, and age) and communication skills. Most participants in our sample preferred to have a Black woman physician compared to a White one of any gender. Three women specifically reported on their experiences with a Black healthcare provider, while others reported on what they believed their experiences would be like if they had a Black OBGYN. I feel seeing my OB, who is black, who is female and there is more fluid communication that happens. I do feel that my experience is that she takes the time to discuss my symptoms, my test results. She goes the extra mile. Therefore, for Black women having a provider who goes the extra mile is different and more meaningful than a White woman having a provider go the extra mile, because Black women don’t expect non-Black women providers to do that for us. (Janelle, age 31) Janelle drove five hours from her rural town to see her Black provider because her town had predominantly white providers. This is a clear example of the effort and lengths Black women will go through to receive quality care from a provider that looks like them. Participants also expressed what they assumed their interaction would be like if they had a Black OBGYN: If I had an African-American female physician or OB, I just feel like they will be more sensitive to what I’m feeling. And instead of being dismissive, just like with the OB saying, “Oh, your cervix is swollen or whatever,” and not looking into it in more detail than that. Right. Like I opened myself up and was vulnerable enough and as far as it went okay. Versus if I had someone that looked like me would they have done more testing asked more questions? Would it be in like, not necessarily like mommy or auntie like, “Oh, come here, let’s figure out what’s wrong with the baby” type thing. (Denise, age 35) Denise believed that a Black woman provider would be more caring and have a more soothing bedside manner as in fictive kin relationship (people who are not related by birth or marriage that an individual has a close emotional relationship with and are often considered to be part of the family). Brittany (age 32) also endorsed the idea that Black women providers would feel like fictive kin, “with the Black OBGYN, we were just kind of like real sisterly.” Additionally, Brittany felt that she could show up unapologetically as herself, releasing the need to perform and be a knowledgeable and behave like an ideal patient to receive quality care, as she perceived she would have to do with White medical providers. Pea (age 23) reported how she desperately needed and wanted a Black doctor because she felt physically uncomfortable with non-Black doctors and felt that she could not be as vulnerable. Pea’s discomfort with being vulnerable to a non-Black provider could cause delays in treatment and diagnosis: But I didn’t feel comfortable...I was just looking at her like, “I really need a black doctor.” That’s just how I feel. I don’t even like the hospital. But no, that wouldn’t be a doctor [her white OBGYN] I would feel comfortable enough to confide in and speak about different things like that. I would feel more comfortable with black woman. Older age was another characteristic that many of the participants in their 20s mentioned as a barrier to communication with their provider due to feeling that they would be judged and not relatable: “I don’t know, she was older too. I think I probably made this assumption that she would judge me because she was older, but she’s seen it all, so I need to stop thinking like that” (Jhene, age 35). For Zeena (age 24), she still didn’t feel comfortable with her Black woman provider because of her older age: “I don’t feel like I can just talk to them about things, free of judgment. I think that’s the big thing, especially maybe for Black women, judgment in those situations, medical situations in general.” However, for Kris (age 23), her provider being significantly older in age did not negatively impact thier communication. It was more important to Kris that her provider had patients that were close to her age as her provider having patients that were in the same age range as her. I think also age played a huge role in it. Because the white male doctor that I have is significantly older. And so, I felt far more comfortable just being able to be like this is what it... It felt almost like a grandpa that you’re just talking to about stuff…And I’m like, I’m sitting here talking to a 60-year-old white man about... And he’s giving me the best advice. There were also contradictory preferences in the amount of experience a provider had. Some participants wanted physicians that had more experience while others wanted a provider that was “fresh out of medical school.” Additionally, one participant preferred to talk with their primary care provider over their OBGYN and one participant reported feeling more comfortable with a nurse practitioner over a doctor because they were better listeners, explain things thoroughly, and were not dismissive. This shows the overlap between provider demographics and preferred communication skills. For example, having someone that is older or a specific type of medical provider (PCP, nurse practitioner, or OG-BYN) influences Black women’s views of how their medical provider will communicate with them. Overall, the most important demographic characteristic was having a Black woman provider to increase comfort, reduce potential discrimination, and allow vulnerability with discussing pain. There were varying opinions on age. Overwhelmingly participants preferred that their provider had specific skills and approaches to facilitate open communication such as ease of communication, reassurance, soft and inviting tone of voice, listening skills, were not dismissive, and provided detailed responses. Detailed responses from providers meant that Black women received comprehensive answers about their sexual pain from their providers. Like Serena (age 28) said, there was “no stone unturned”: So the reason I left other doctors, even though they were Black women, is I just felt like my questions weren’t being answered thoroughly, or I felt rushed or I didn’t feel any probing. Because I’m not a doctor, so I don’t know everything that is or could be wrong with me. And I expect my doctor to be the one to hear what I’m saying and pull things out of that. And so she does that. She doesn’t leave any stone unturned when it comes to things that I say. And so I really appreciate that about her. This quote shows the overlap between demographics and communication skills. Serena’s desire to have a provider that answered her questions thoroughly outweighed her desire to have a Black woman provider. Highlighting the complex relationship between preferred provider characterisitcs and communication skills. Ease in communication was often influenced by their provider’s tone of voice. Three participants referred to their provider as having a “matter of fact” (Regina, age 41) tone that wasn’t “warm and fuzzy” nor abrasive but just factual. Meanwhile, some participants mentioned how their provider’s tone made them feel comfortable to discuss sensitive topics with them. Amina (age 29) described how her provider’s tone of voice was so soothing and mellow. Her voice is very soothing. Because when you have a doctor that has either a very annoying voice or there’s just something off in their tone, it’s like mmm. Don’t make me pop off on you real quick. But with her, it was like very soothing and it’s almost like a lullaby... In this quote, Amina refers to feeling hyperaware of when there are differences in tone of voice or inflictions that may cause her to become defensive (e.g., “pop off”) and feel the need to verbally defend herself against microaggressions. This defensiveness may occur due to Black women’s experiences of thinly veiled passive-aggressiveness from White people in society. Therefore, these same skills may also be used in the healthcare setting to navigate problematic systems and situations and advocate for their safety and health. Additionally, their providers’ tone of voice used to communicate with them about their sexual pain was important in how the patient would react and if the conservation would continue. Finally, the most important communication skill was having a provider that listened and wasn’t dismissive. “She [general practitioner] listens. Like she, I can just, she had a great bedside manner, great listening skills” (Nicole, age 35). Forty percent (n = 10) of participants reported having a dismissive provider or feeling dismissed (for quotes on dismissiveness see provider responses subtheme). Kayla (age 30) remarked on feeling heard by her white provider, who named that Black women may not always feel heard in healthcare settings: I actually think that we had a conversation, and he started the conversation with me. “But I know what the statistics say, I know that they are not positive towards my thoughts about your body and therefore I want to make sure that you always feel heard.” Literally every time I go see him, I feel so heard. Whatever is the issue, whatever I’m going for, we address it, and he always follows up, “Do you feel like I addressed what you came here f or today? What else would you like to talk about?” Although it would seem like I would not be going to see him, I enjoy him as my OB-GYN. Her White male provider’s acknowledgment of medical mistreatment, implicit bias, and anti-blackness within the medical setting enhanced their patient-provider communication by reassuring Kayla that she would be seen, heard, and her pain would be taken seriously. Provider preferences directly influenced participants’ healthcare experiences. Previous healthcare experiences often shaped what participants perceived their future healthcare experiences would be like. For example, Nikki (age 23) stated: “…it wasn’t until I saw your all’s work that I even thought about oh maybe I should tell a doctor. But doctors have not given a single fuck about me or any of my pain, so I’m like why would I talk to them about sex?” Additionally, their healthcare experiences were shaped by minority stressors including racial-gendered discrimination, anti-Blackness, historical reproductive health trauma, and hypersexualization. Their healthcare experiences directly influenced if they chose to disclose their sexual pain to their provider or if they refrained from doing so. Participants described their healthcare experiences two ways: (1) self-advocacy and the pressure to be knowledgeable and (2) their provider’s focus on risk-based questions instead of overall sexual well-being. Participants (n = 7, 28%) felt that they had to be extremely knowledgeable and come into their doctor appointments with facts for their provider to listen to them and take their pain seriously. This knowledge made them more equipped to advocate for themselves in healthcare settings. Participants often felt like they were constantly advocating for themselves due to their providers being dismissive and the anti-Blackness that permeated the healthcare system. For one participant, her strong belief in self-advocacy developed as a result of her experiences of advocating for her family members in healthcare settings. For example, Jhene (age 35) stated, My experience with doctors and also when you see my mom’s experience with doctors, I felt like they brushed off her concern or... What’s the word? They didn’t take her pain or her complaint about pain seriously. That’s kind of the view I have of doctors and the few times I probably did go to a doctor about a concern that I can remember, they seemed like they just were know it all and just kind of like, “Oh, it’s probably this. Oh, it’s not that serious.” But it’s like hear my concern, hear what I have to say. They’ve talked over me and I’ve seen them talk over my mom and it’s really frustrating. As I was having to take care of my mom and really speak to the doctors on her behalf, having to kind of make them listen to me, it’s like, “Look, I’m the one taking care of her. I know her. This is what’s wrong.” Additionally, Brittany (age 32) mentioned that she felt like she had to advocate for herself harder because she had a White provider: Then when I switched to like my white OB GYN, it was like, “Okay, but these are the things that I know. I’m going to hit you with straight facts, you need to listen to me, and if you don’t, I can leave.” So it’s like, I have to really kind of, I feel like, be more firm in, “This is what I want. This is what I need. And this is what I expect.” The pressure to advocate for oneself made Denise (age 35) feel like it was her fault when she did not receive proper treatment or diagnosis because she did not pushback enough. This need to advocate can cause Black women to internalize their patient-provider interactions and carry the weight of their experiences because they feel that the outcome is the result of how hard they advocated for themselves. Denise stated: “Well, her recommendation, I understood, but it’s just that I think the ball was really dropped on the OBs part. Or maybe it could have been mine. Maybe I’ll pushback enough to say, ‘Hey, okay, I understand that, but like, I’ve just made us statement that doesn’t have anything to do with being and stimulated orally or anything like that without penetration’. Maybe I could have said more to explain the situation so that she could understand where I was coming from.” Participants felt that providers only asked risk-based questions about sexual health including STI history, number of sexual partners, condom use, and other contraceptives. Participants referred to it as a “checklist” of questions regarding their sexual health and reproductive health, but it was rare that they were asked questions about sexual pleasure and sexual difficulties such as sexual pain. They noted that this checklist felt “procedural” (Zeena, age 24). Butta P (age 44) recommended that providers take a more holistic approach to discussing sexual health: “So just someone who takes a holistic approach in engaging in, not just the medical aspect of it, but also to your point, the emotional, the impact that it has on day-to-day life, or if desired, romantic engagements, to take all that into consideration as someone’s OBGYN.” Although some women disclosed their sexual pain to their providers over half did not (n = 13; 52%). Their reasoning for not disclosing their sexual pain impacted their ability to receive diagnoses and treatment. These barriers included dismissing and minimizing their own pain, perceived societal expectations of Black women having a higher pain tolerance, wanting more information, fear of healthcare stereotype threat, and their provider failed to initiate the conversation. Two participants reported that they did not disclose their sexual pain to their medical provider because they dismissed and minimized their own pain. They felt like their pain was not a big deal because they were used to experiencing recurring general pain. Kris (age 23) felt abnormal for having sexual pain at such a young age which contributed to her minimizing her pain. However, she did not feel this same abnormality towards general pain. It is possible that the abnormality she feels about her sexual pain is actually functioning as sexual shame and embarrassment: I think it stems back to that abnormality of, I shouldn’t be having these experiences. Or really even just minimizing my own experience and being like that’s not worth talking about. That’s not a real issue. You know? You get over it. You hang in there. You do what you need to do to get through it, but it’s not worth bringing up to your doctor. Your doctor’s for real things. And I think that, for some reason, there’s a disconnect between your own pain being a real thing for you. You know, I go there when my back hurts and have no problem. But when I’ve experienced sexual pain, I’m just like, oh that’s not something to be... It’s not a big deal. Nia (age 33) described how Black women are conditioned to take pain. As a result, she has internalized society’s expectations of Black women being able to endure more pain and hesitate to disclose the magnitude of her sexual pain to her medical provider and physical therapist, but she feels fully comfortable disclosing to her mental health counselor. The differences in Nia’s level of comfort with her providers highlight the importance of having a biopsychosocial treatment plan for sexual pain, as women may be comfortable with some providers more than others: There’s pain involved. I tend to describe it more as discomfort but I’ve even told my physical therapist that sometimes I wonder if because as a black woman, we’re kind of conditioned to take pain, that I may be downplaying it. You know what I mean? But then, my counselor is like, “Well, it’s relative to you. So, if it hurts to you, then don’t worry about if it would really, really hurt to somebody else.” You know? Even when a provider asked about pain Janelle still refrained from disclosing her pain to her provider. She wanted to figure out the root cause of her pain for herself before her provider created a treatment plan. This shows hesitancy on her part to trust that her provider has her best interest at heart, therefore needing full understanding. Additionally, this could be a way of avoiding the pain by focusing on other things it could possibly be related to versus the symptoms she is experiencing: Yeah. I do think it’s more within a sexual reproductive lens, just the basic ABC questions. She will say, “Are you having any other concerns?” She does open up the floor in that perspective. Do you think I’ve told her yet? Nope, because I’m still trying to identify for myself, I think. Is it sexual anxiety? Is it part of my sexual trauma? Or do I legit have a problem with sexual pain? I think I’m still trying to identify what that looks like and where that lands with me before I’m being prescribed maybe dilators or creams or different medications, and I don’t need that. Healthcare stereotype threat (fear of being labeled as a jezebel for talking about sex because it is not an appropriate topic; Abdou & Fingerhut, 2014 ; Abodu et al., 2016 ) was a barrier to provider disclosure for six (24%) of participants. Tori (age 27) mentioned stereotypes stating, “there are some stereotypes out there regarding Black people in general, but especially Black women. Sometimes people judge us as promiscuous, prematurely promiscuous and things like that. […] I don’t want any assumptions to be made about me. And that affects my care that I get.” One participant noted that although times have changed she feared being labeled as loose. “There’s always this concern that... I mean, we’re in a different generation where people are more sexually free but still, I’m just afraid I’m going to be judged a certain way as a Black woman or stereotyped as being sexually loose, right?” (Jhene) (For more examples of quotes regarding racial-gendered based stereotypes see Table 2 ). The most common reason for non-disclosure was participants wanted their provider to initiate the conversation. In our sample, 13 (52%) of participants had never been asked about sexual pain or difficulties by their provider. I think maybe if they were just like, “How is your sex life? Do you like it? How’s it for you? Are you active?” Just that. Just a simple, how’s it going? How would you rate it or something like that. I feel like maybe that question will then spark a memory, like, “Oh well, you know now that you did say that, this was more painful than normal. Or not even normal, but that’s what happened.” (Lola, age 24) I don’t think any of my OB-GYN’s have really asked me about pain or anything like that. [Providers] focus on that [pap smear], asking me about partners, asking me about if I want to get tested. More of that sort of thing. (Black Velvet, 28) For those that had provider that initiated the conversation they all openly discussed pain with their providers. Keisha (age 25) mentioned that providers could facilitate this conversation by including questions related to sexual pain on their intake forms. However, it should be noted that just including these questions is not enough, as many participants felt their providers never took the time to look at their intake form before entering the room: Even being at this age, it can be weird or awkward to talk about our bodies still, sex and different things like that. Sometimes talking to a doctor can feel like you having that conversation with your mom or something like that. And so when they have it on the intake forms, I feel like it makes it easier for you during the visit because now I’ve probably checked off a box and it’s probably been a line that said explain. So I might’ve dropped a few details and now you mention it in a conversation. You’re initiating it and now that’s not like a point where I have to initiate in a conversation, “Hey, I’m feeling this discomfort.” You know? Thinking like a healthcare provider where that area is supposed to be your specialty, I’m thinking, why wouldn’t that have been one first things they brought up? For Black women, their decision to continue communicating with their provider about sexual pain and disclosing future medical issues with them was dependent on how their provider responded to their initial disclosure. Additionally, the provider’s response to their disclosure influenced the treatment that Black women received for their pain. Providers had varying responses to pain from being concerned and wanting to investigate, to being dismissive. Majority of participants noted that their providers were dismissive following their disclosure of sexual pain (n=17; 68%). For Keisha (age 25), her sexual pain was automatically linked to sexual risk (e.g., STIs). When she discussed the pain she felt during sexual intercourse her provider dismissed her complaints because they didn’t see anything medically wrong instead of believing her and referring her to another provider for a second opinion or potentially a pelvic floor therapist. There was something that was uncomfortable or a type of discomfort. I’d expressed it to my doctors on numerous occasions and they’re like, “No, everything’s fine.” Going through the normal STD checks and stuff like that. And I’m like, “No, it’s not that kind of pain or discomfort.” I’m like, “It’s not like I’m having these problems with urination or any type of hurt or any discomfort going to the bathroom.” I’m like, “It’s actually doing the sexual acts.” And they kept saying no... They didn’t know. It wasn’t anything that I should worry about because it’s nothing medically there they could see. The following participants expressed similar sentiments: “But it doesn’t matter, well I haven’t had anyone Black since I was young but, young, old, all of them have been white, but male, female, it’s all like they legit don’t believe the pain, or that I’m a hypochondriac of some sort if that makes sense.” (Nikki) “But I think as a Black woman going to the doctor, and like telling them you’re in pain, it’s like, ‘Oh, okay’.” (Candy, age 26) The ideal outcome for patient-provider communication about sexual pain is to result in comprehensive, individualized treatment plan. In our sample, treatment plans ranged from providers not treating the problem at all (n=5) to encouraging Black women to have a hysterectomy (n=3) to treat their sexual pain. The women who had a history of fibroids referred to their fibroid removal surgery not only as a prescribed treatment for their sexual pain, but also treatment to ensure that they could have children in the future. Two participants, Regina (age 41) and Butta P (age 44), mentioned that their providers suggested a hysterectomy as the first option for treatment of sexual pain and when one participant refused to have a hysterectomy their provider prescribed oral contraceptives to manage pain. In this case, a Black woman was prescribed the most extreme and invasive treatment instead of receiving a more modest treatment plan first (e.g., oral contraceptives). Participants who had endometriosis, fibroids, or PCOS (n= 14, 56 %) were more likely to have providers that recommended hysterectomies as their form of treatment: The OBGYN that I was seeing at the time, who diagnosed me with endometriosis, he was a male, ironically. I didn’t think about that until we’re talking about it now. So he gave me the different options of Lupron, or having the exploratory surgery where they go in and they can do some stuff, or burn off the cysts, or whatever. So I had the procedure done, and... It didn’t really help. It helped a little, but... I still manage the feelings from endometriosis, just in general, in terms of pain, in sexual encounters in general. (Butta P, age 44) Other treatment plans included telling participants to have babies to cure their endometriosis and reduce pain (n = 1), to use lube (n = 3), to switch positions (n = 1), and to hold on to the side of the bed (n = 1). Some of these treatment plans specifically made women feel dismissed due to the tone that they used as well as being nonchalant and rude. I think that with the doctor, with me talking about having endometriosis. They were like, “Oh, yeah, that’s common.” And that was just kind of the end of the thing. “Oh, that’s common.” And like, okay, “Oh, maybe you should try different positions or using lube.” And it was a really short, like conversation (Candy age 26) The doctor told me, “It looks like you’re okay.” And I remember him telling me to hold on to the side of the bed, like when you’re ready to have... I guess, he was excited that I was able to have children, and so I don’t think that it registered what he was telling me to do, but he basically told me when I start having sex again with my partner, if it’s uncomfortable just hold onto the side of the bed. (Regina, age 41) However contrary to these negative experiences with treatment, some Black women had very positive experiences and felt affirmed: He’s like, “Honestly,” and this was the best advice, even better than my friends. He was like, “The best thing you can do is you use coconut oil.” And I was like, “Really?” He’s like, “Don’t go buy all those expensive lubricants and sometimes those even irritate people.” He’s like, “Coconut oil.” And I’m like, I’m sitting here talking to a 60-year-old white man about... And he’s giving me the best advice about... And honestly, that has been the best thing ever. I tell everybody. Because I was asking my friends, and really I asked him more from, like, “Do you think this is like a hormonal thing? Is there something causing this?” And he’s like, “Honestly, you’re fine. You’re not going into early menopause or anything.” He’s like, “You’re good.” He’s like, “Just use coconut oil.” (Rita, age 44) Additionally, some women reported that their medical providers created biopsychosocial treatment plans that included physical therapists and mental health counselors. Although three women mentioned seeing a mental health counselor for their pain, only one was referred to a mental health counselor by their medical provider. Michelle (age 27) mentioned how she was hesitant that her provider was dismissing her by just referring her to a counselor, but how her counselor has helped her address mental blocks she didn’t know existed: But physically it hurt a lot of time and I’ve gone to the doctor, I’ve gone to OB/GYNs and I’m just like, “Hey, when I have intercourse it hurts, and I don’t know what’s going on.” And they’ve run test and they’re like, “You’re fine, it’s probably a mental thing, it’s probably you’re emotionally blocking yourself from allowing yourself to enjoy it, basically.” I think at first I thought they [providers] were just trying to get an easy way out, they couldn’t find the problem so they were just like, oh, we’re just going to ship you off to a therapist and you deal with it. But now that I’m actually in therapy, and I am working through a lot of that, I’m like, okay, the doctors are probably right, because there isn’t anything … I’ve gone to several doctors, OB/GYNs, and they’re like, “Physically your body is fine.” And so now with my therapist, and we’ve talked about the trauma, we’ve talked about all of that, and she’s like, “This makes sense for you to put up that block to not enjoy it, or to stop, prevent yourself from enjoying that climax or enjoying anything like that.” Michelle highlights mental health stigma in the Black community and how she feared that her provider referring her to a therapist meant that she was abnormal or they were looking for a way out, but once she started therapy, she realized her mental health was actually influencing her sexual pain and she received the proper treatment she needed to process her trauma. Only two participants reported being referred to a pelvic floor therapist. Nia (age 33) mentioned her provider referring her to pelvic floor therapy for her vaginismus: And afterwards she was like, “I think you may have vaginismus, where your muscles don’t relax, or they involuntarily contract.” And you can see a physical therapist for this and she gave me some people that the practice works with, but they were inconvenient. So, she was like, “You could just look, in general, for a pelvic floor physical therapist.” “I still have vaginismus. I go to physical therapy for it but, I still am not fully able to relax those muscles…. Even if they [gynecologist] were farther away, because I don’t live as close to the GYN as I used to, I would still pursue services with them. Just because I feel comfortable sharing things. I feel like they get it. I don’t feel like they’re trying to minimize anything that I’m saying and I really feel like my experiences are validated.” Additionally, Nia reported the wide variety of techniques and strategies her pelvic floor therapist (a Black woman) offered her such as an initial range of motion assessment, yoga poses to stretch her hips, kegel exercises, eight dilators which she described as “un-fun toys,” breathing exercises, and suppositories. Overall women who received combinations of treatments including mental health therapy and pelvic floor therapists felt the most supported, compared to those that received no treatment or treatment from just a medical provider.

This qualitative study explored patient-provider communication as related to Black women’s experiences of and treatment for sexual pain. Given that patient-provider communication can be a critical aspect of receiving quality medical care ( Street et al. 2009 ), a clearer understanding of Black women’s lived experiences of communication with providers about sexual pain offers an opportunity to highlight: (1) the components of patient-provider communication that can facilitate (or deter) effective treatment outcomes, and (2) how, for Black women, patient-provider communication is situated in and influenced by the historical and present-day context of gendered-racism. Using constructivist grounded theory we created a pathway model of patient-provider communication about sexual pain. Our model includes racial-gendered stereotypes and provider implicit bias as part of the sociopolitical context in which patient-provider communication about sexual pain occurs. Similar to Black women in previous studies ( Davis, 2020 ; Sacks 2018b ), women were aware of racial-gendered stereotypes and diligently strived to refrain from reinforcing the negative perceptions of Black women (e.g., healthcare stereotype threat). To receive quality care, Black women felt the need to appear extremely knowledgeable during the healthcare visit and had to be conscious of how their appearance (e.g., dress, hair) may influence their healthcare experiences. As a result, Black women often conducted research prior to their healthcare appointments in order to demonstrate their intelligence and be viewed as credible patients ( Sacks, 2018b ). Additionally, research has shown that Black women sometimes note subtle markers of prestige through their appearance and attire to prevent racial stereotyping ( Davis, 2020 ). Black women should not have to use such non-verbal communication strategies to be perceived as legitimate by their providers and receive quality care. Engagement in these behaviors is not an indictment of Black women; rather, it is reflective of larger systems of inequality these Black women are attempting to navigate in order to receive adequate medical care ( Sacks, 2018b ). This pressure is not only unfair, but can also take a mental and psychological toll, as it reinforces the false narrative that Black women are not inherently worthy of care just as they are. Additionally, these disparities in healthcare can cause Black women not only effect their quality of care but creates medical mistrust of providers and the overall healthcare system ( Arirguzo et al., 2022 ). Another way the healthcare stereotype threat manifest for Black women in our study was through concerns of being labelled as a “Jezebel”. This stereotype which is historically rooted in slavery, depicts Black women as innately promiscuous and sexually aggressive as compared to other racial groups, and has been used to justify harm against Black women in various domains ( Collins, 2002 ; Stephens and Phillips 2005 ; West, 1995 ). Research shows that American women are generally reluctant to discuss sex ( Montemurro et al., 2015 ; Waskul et al., 2007 ), and for Black women in our study, the stigma of this topic is further compounded by this stereotype. As such, the Jezebel stereotype can present an additional barrier to satisfactory patient-provider communication. This stereotype is not only a component of the broader sociopolitical context surrounding patient-provider communication in our model but is also specifically cited under the “reasons for non-disclosure” factor. As such, this stereotype may represent a dual barrier to effective patient-provider communication. For women in our study, having a provider with preferred demographic and communication characteristics was important to the decision to disclose sexual pain. Several study participants shared they either wanted a Black woman medical provider or intentionally worked to ensure they had a Black woman provider. One respondent shared how she drove five hours to access care from a provider with her preferred characteristics, a Black woman provider. This not only demonstrates the lack of access to preferred care, but also speaks to the efforts Black women are willing to go to ascertain quality care. Black women in our study voiced a desire for patient-provider racial concordance, in which the patient shares the same racial identity as the physician ( Shen et al., 2018 ). For Black patients, racial concordance was associated with better non-verbal patient-provider communication, higher ratings of physical participation, longer visits, and better non-verbal behaviors ( Shen et al. 2018 ). As such, racial concordance is a critical aspect of care for Black women that can greatly influence patient-provider communication about sexual pain and lead to treatment. The patient-provider communication model also depicts a reciprocal relationship between sexual pain disclosure and provider responses to disclosure and their direct impact on healthcare experiences. Forty percent (n=10) of women in our study shared that their sexual pain was dismissed or not taken seriously, reflecting the insidious way in which implicit bias among healthcare providers can have serious negative consequences for patient care. Previous research has shown that a substantial number of White medical providers erroneously believe Black people feel less pain than White people; this can result in incorrect pain assessments and less accurate treatment recommendations ( Hoffman et al., 2016 ). Participants in our study reported lived experiences of having their sexual pain symptoms invalidated by healthcare providers, which led to real-life issues of misdiagnosis and delays inappropriate treatment for sexual pain. As a result, women with sexual pain often do not seek care, suffer in silence, and feel that their pain has not been properly assessed or validated by their medical provider ( Sorenson et al., 2018 ). In addition to having their pain dismissed or unaddressed by providers, some Black women in shared experiences of neglecting to take their own sexual pain seriously, citing how sexual pain is normalized among peers/friends. Generational messages, including messages from elders of not disclosing sexual and reproductive health problems with people who may not understand them, often shape Black women’s patient-provider communication ( Aririguzo et al., 2022 ). Previous research has shown that Black women tend to keep their feelings and symptoms to themselves because it’s seen as personal and private, they witnessed generational silence, and they believed that they couldn’t trust their healthcare providers and didn’t believe their providers cared ( Aririguzo et al., 2022 ). These factors along with the Strong Black Woman stereotype—the belief that Black women are inherently strong, self-sacrificing, independent, and resilient ( Donovan & West, 2015 ), prevent Black women from disclosing their pain to medical providers. Although the Strong Black Woman stereotype may be useful schema for coping with the realities and discrimination that come with such oppression, internalized beliefs around hyper-independence and strength (which are also externally reinforced by the Black community) are diametrically opposed to help-seeking behaviors and can thus be detrimental to ensuring Black women receive the care and support they need ( Abrams et al., 2019 ). In dismissing their own sexual pain, Black women may be less likely to understand said pain as a point of concern and attempt to address it with their providers. Thus, the Strong Black Woman schema is a racial-gendered stereotype that is not only present in the sociopolitical context of patient-provider communication, but also represents a reason for non-disclosure that can negatively impact patient-provider communication on the interpersonal level. As such, it is important to emphasize the helpful aspects of the Strong Black Woman schema and relay the message that it is possible to both be strong and seek out medical help for issues related to sexual pain. Additionally, early messages about sexual pain in adolescence has been shown to reinforce the idea that genital pain is normal and expected ( Rubinsky et al., 2020 ; Scott et al., 2022 ). Although Black women mentioned several barriers to non-disclosure and negative healthcare experiences, there were some that experienced quality healthcare when their provider had their preferred characteristics and communication skills. For these participants, providers listened and asked in-depth questions during their visits, worked to understand the context of their sexual pain, and provided treatment plans that were non-invasive and comprhensive. Providers often recommend invasive forms of treatment for sexual and reproductive health issues (e.g., hysterectomies) for Black women before less non-invasive treatments ( Bower et al., 2009 ). Our findings show that similar to previous research ( Rullo et al., 2018 ), biopsychosocial treatment plans (e.g., a treatment plan that consists of medical providers, mental health counselors, and pelvic floor therapists) are the “golden standard” and have a long-lasting impact on treating Black women’s sexual pain. Black women who were provided recommendations such as different types of lube, different sex positions, and were also referred to pelvic floor therapists and mental health counselors often had the best results. Therefore, more providers should create biopsychosocial treatment plans for Black women to intervene on physical, emotional, and mental barriers to having pleasurable non-painful sex. Though this study is the first qualitative paper to explore patient-provider communication regarding sexual pain among Black women, it is not without limitations. First, our sample consisted of Black women who reported having a reproductive health diagnosis (e.g., endometriosis and fibroids) and/or frequent and pervasive sexual anxiety and pain. Thus, our sample was purposively recruited and may not share similar patient-provider experiences as Black women who do not have sexual or reproductive health issues. Whereas some may argue that our sample is not generalizable, we believe our sample warrants attention given the disproportionate rates of reproductive health and sexual pain concerns among Black women. Focused research with this group can elucidate their specific sexual concerns and help to inform changes to patient-provider communication within the healthcare system. Second, communication is a two-way process of sending a message between a source and its intended receiver. Our findings depict Black women as either the sender and/or receiver in the process but offer very limited information about providers’ perceptions. We are unsure if Black women gave feedback to their providers when encountering ineffective verbal and non-verbal communication and misguided medical advice about sexual pain. Future research should qualitatively examine healthcare providers lived experiences working with Black women patients or use dyadic interviews to triangulate findings. This study may serve as a channel to give such advice to medical providers with the intention of improving their response to and treatment of Black women’s sexual pain. It is important to note useful strategies both patients and providers can use to improve communication. In their recent work, Townes and Herbenick (2020) include five tips Black women can use in talking with their healthcare providers: (1) write down questions and concerns and bring them to the appointment; (2) explicitly inform providers of any pain and/or discomfort; (3) ask for the specific sexual health screeners/tests desired and clarify how the results will be communicated; (4) ask the provider to stop and explain what they are saying if things are unclear; and (5) ask about side effects for any offered prescriptions; if said side effects are unacceptable, work with your provider to come up with other options. Armed with the knowledge that it is their right to be fully informed about every aspect of their care, Black women working through issues of sexual pain with their providers may feel more empowered to have conversations necessary to ensure they receive the best possible care. Although Black women can implement these tools to better communicate their needs to their providers, the work of improving patient-provider communication is not solely their responsibility. Given the patient-provider power differential ( Townes et al., 2020a , 2020b ), the historical context of anti-Black medical racism ( Washington, 2006 ), and the understandable distrust some Black women have of the medical system at large, the onus to improve patient-provider communication and ensure that Black women patients are heard and understood is ultimately on providers and the healthcare systems in which they function. To this end, providers can make strides to improve patient-provider communication by (1) initiating conversations about sexual pain and discomfort, (2) recognizing the biases they hold and working to mitigate their impact on patient care by undergoing training on gendered racism in healthcare, (3) adding questions about sexual pain to intake forms, and (4) following up on patient responses to said questions during the actual visit. The results of this study illustrate components of Black women’s patient-provider communication at the individual, interpersonal, and systemic level and provide meaningful implications for improved sexual pain treatment outcomes in this population. First and foremost, it is expected that Black women will receive comprehensive and quality care for their sexual pain from medical providers. To ensure proper treatment occurs, both Black women and providers should be aware of the effects of double consciousness (i.e., feeling as though one’s Blackness is divided into two parts; the “two-ness” of being a Black person and a Black person in America; ( Du Bois, 1903 ) on Black women’s healthcare experiences. The negative consequences of gendered-racism embedded in the healthcare system and internalized by some Black women have caused negative emotions like sexual shame and embarrassment, sexual pain stigma, healthcare stereotype threat, and sexual pain minimization ( Abdou & Fingerhut, 2014 ; Malone et al., 2021 ; Rao, 2020 ; Witzeman et al., 2020 ). To navigate internal conflict related to sexual pain, Black women should receive increased access to resources informing them of how gendered-racism impacts their sexual and reproductive health. Providers can assist Black women in this process by ensuring they take an anti-racist stance as individuals and in their practice setting ( Crear-Perry et al., 2020 ). To eliminate their implicit bias, providers should engage in self-reflexivity activities related to Black women and receive comprehensive, sex-positive, anti-racist education ( Chapman et al., 2013 ). For example, like Kayla’s OB-GYN, providers can share with Black women that they are aware of their statistics, are committed to ensuring they are heard, invite feedback, and collaborate to design a treatment plan. Next, providers are encouraged to extend this education to their healthcare network, including nurses and administration ( Rodríguez et al., 2015 ), so Black women have an improved healthcare experience from check-in to check out. Finally, while all these recommendations are helpful, this study emphasizes the importance of representation above all. More providers who identify as Black women should be available to Black women experiencing sexual pain. White and non-Black providers of color should investigate their referral process ( Kinchen et al., 2004 ) and refer patients to Black women physicians they are aware of. Medical programs and healthcare settings should intentionally recruit, retain, and ensure equitable treatment and pay for Black women physicians as underrepresented minorities in medicine ( Bajaj et al., 2021 ; Rodríguez et al., 2015 ). Combined, these approaches informed by the results of this study will provide improved care for Black women’s sexual pain.

Black women are more likely than their White counterparts to experience reproductive and sexual health concerns such as fibroids, HIV, and other sexually transmitted infections ( Centers for Disease Control and Prevention [CDC], 2018 ). These concerns can lead to pregnancy and birth complications, infertility, and even death. For decades Black women have reported that their reproductive and sexual health concerns have been dismissed by medical providers ( Levy, 1985 ; Prather et al., 2016 ; Taylor, 1999 ; Ward et al., 2013 ). Studies estimate that roughly two-thirds of women distressed by sexual problems do not seek medical help, leading to them being undiagnosed or receiving delayed diagnosis and treatment ( Briedite et al., 2013 ; Shifren et al., 2008 ). Black women’s diagnostic delays are often related to implicit bias and gendered-racism in the healthcare system ( Prather et al 2018 ). Since the medical field is White and male-dominated (56.2% White and 64.1% male in 2019; AAMC, 2019 ), male providers may not relate to or understand the severity of the symptoms being described ( Rao, 2020 ). Black women are viewed as over-exaggerating their pain because they are women ( Hoffman et al., 2016 ; Trawalter et al., 2012 ) and are viewed as “superhuman” because they are Black (see Waytz et al., 2015 ). Additionally, Black women must navigate sexual stereotypes such as being promiscuous and hypersexual that may cause more distress during disclosure of sexual pain ( Jerald et al., 2017 ). Black women who experience chronic pain, pain related to reproductive health, and pain related to sexual difficulties all face the risk of being judged, misunderstood, and misdiagnosed by medical providers ( Rao, 2020 ). Fear of medical mistreatment puts pressure on Black women to attempt to look acceptable based on White standards, prove that they are extremely knowledgeable, and perform as an ideal patient worthy of care ( Abdou & Fingerhut, 2014 ; Sacks, 2018b ). Additionally, medical providers often invalidate patient symptoms; the process of dismissing, ignoring, and not believing patients disclosed symptoms ( Bontempo, 2021 ). Although patient-centered care (e.g., respecting patients, tailoring treatment and care plans to the values, plans, and needs of each patient) is the goal, literature shows that medical providers do not believe that patients are experts in their body ( Bontempo, 2021 ), and that providers often explicitly or implicitly communicate to patients that their symptoms are fabricated and psychosomatic ( Burke, 2019 ; Fischer, 2004). Specifically, as it relates to sexual and reproductive pain, Dr. Colene Arnold, a gynecologist who specializes in pelvic pain disorders states, “there is an assumption that Black women don’t know their bodies, that they do not understand, that they’re not educated about their bodies” ( The Exchange, 2019 ). Disclosing sexual pain takes vulnerability, and the fear of being invalidated only encourages patients to deal with the pain on their own. Research has showed that women with vulvodynia (chronic genital pain) often feel caught in a loop of wanting to discuss their pain but fear that their romantic partners would view their communication as complaining (Hintz, 2019). If this fear exists with intimate partner disclosure, it may be even harder for Black women to disclose their sexual pain to medical providers. Despite the CDC (2021a , 2021b ) and other national organizations ( National Coalition for Sexual Health, 2016 ) having published guidelines for taking health histories and encouraging healthcare providers to routinely have sexual health discussions with all their patients, providers tend to avoid discussing patients’ sexual health ( Sorenson et al., 2018 ). In fact, a 2012 study found that only 40% of obstetricians/gynecologists (OBGYNs) discuss sexual difficulties with their patients ( Sobecki et al., 2012 ), despite most women suggesting that having a provider initiate the conversation about sexual pain would’ve made them more comfortable with disclosure ( Witzeman et al., 2020 ). However, when providers initiate conversations about sexual health, they are more likely to ask questions about birth control use and sexual risk behaviors, than sexual functioning and difficulties including painful sex ( Townes et al., 2020a ). Conversations about sexual pain are often more complicated than conversations about sexual health in general because of the societal normalization of painful sexual intercourse in women ( Witzeman et al., 2020 ). Women often may be too embarrassed, feel shame, or uncomfortable (particularly with male physicians) with discussing sexual pain, so they refrain from disclosing their pain to medical providers. Among a sample of women with endometriosis who experienced dyspareunia (recurring genital pain during sexual intercourse), over half mentioned that their provider never talked to them about sexual pain ( Witzeman et al., 2020 ). Although nearly 78% of women said that they talked to their provider about their sexual pain experiences, there were still barriers to disclosing and having vulnerable conversations about pain including embarrassment, feeling uncomfortable, and not believing that they could be helped ( Witzeman, et al., 2020 ). Finally, once they disclosed their pain to their provider, they felt that the information they received was ineffective ( Witzeman et al., 2020 ). Sexual pain is often stigmatized, poorly understood, and hard for patients to explain, therefore women are more likely to receive inaccurate information or be misdiagnosed because the symptoms are similar to other conditions ( Scott et al., 2022 ). Often patients seek advice from multiple healthcare providers regarding their sexual pain which results in them receiving conflicting information and medical advice ( Abercrombie & Learman, 2012 ; Gunter, 2013 ). Discussing sexual difficulties is an important step in providing treatment for Black women’s sexual pain so they can have pleasurable sex experiences and improve their overall well-being. Patient-provider interactions are structural components of healthcare systems that influence how patients experience healthcare in historically racist and patriarchal systems ( Hossain, 2021 ; Owens, 2017 ; Sacks, 2018a ; Washington, 2006 ). Factors such as power and privilege (e.g., the assumed power dynamic between patient and provider), judgment, discrimination, bias, and marginalization have all been shown to have negative effects on patient-provider communication related to reproductive health among Black women ( Altman et al., 2019 ; Ward et al., 2013 ). Black women have reported that their providers were less warm towards them compared to White patients, and therefore viewed their healthcare experiences through a racial lens of past and current experiences of medical mistrust, dismissive providers, and poor communication ( Cuevas et al., 2016 ). Additionally, Black women reported more discrimination when they felt that their symptoms or problems were discredited by White healthcare providers ( Cuevas et al., 2016 ). In studies exploring Black women’s patient-provider communication in prenatal care found that critical aspects of quality patient-provider communication included active listening skills, asking psychosocial questions, being treated with respect, showing compassion, providing a continuity of care, asking psychosocial questions, delivering information clearly, establishing trust and closeness ( Bennett et al., 2006 ; Lori et al., 2011 ). As a result of discrimination and the heightened death rate of Black women in medical settings ( CDC, 2021a , 2021b ), some Black women prefer to have a Black woman provider to increase their comfort and improve their healthcare experiences, including conversations about sexual health ( Townes et al., 2020b ). However, having a Black woman medical provider is often not an option for those that live in rural and less ethnically diverse areas. Yet, little is known about Black women’s healthcare experiences and patient-provider communication specifically as it relates to sexual pain. Sexual pain can have a major impact on Black women’s quality of life, including their emotional health, social relationships, depression, anxiety, poor self-esteem, romantic relationship dissolution, and infertility ( Thomtén et al., 2014 ; Witzeman et al., 2020 ). The societal normalization of sexual pain compounded with racism and sexism within the healthcare system fails to provide safe places for patient-provider communication for Black women. Additionally, when women with pain disorders learn to avoid or tolerate their pain instead of seeking help their symptoms and quality of life often worsen ( Sanders et al., 2005 ). Scott and colleagues (2002) state that “it is imperative that researchers look for communicative pathways that are formative in the development of help-seeking behaviors for chronic pain and genital pain condition symptoms” (p. 303). Therefore, the purpose of this qualitative study is to explore Black women’s experiences of patient-provider communication about sexual pain (reoccurring unwanted genital pain). Specifically, we aimed to describe the pathway from sexual pain disclosure to treatment.