"I think people should be more aware:" Uterine fibroid experiences among women living in Indiana, USA.

Eligible participants were women (for this paper, ‘woman’ or ‘women’ refers to those assigned female at birth) aged 18 and over, residing within 75 miles of one of the two recruitment locations (Tippecanoe or Marion County) in Indiana, USA with priority given to those who received a fibroids diagnosis within 36 months of their study interview date to minimize recall bias; however, to obtain an adequate sample size the timeframe from diagnosis to interview date was extended to 60 months. Participants were recruited via email through web-based participant recruitment programs: ResearchMatch and All IN Health (Trialx iConnect), a HIPAA-compliant, secure, public-facing research recruitment platform provided by the Indiana Clinical and Translational Sciences Institute. Interested participants were directed to a study website, which contained additional study and contact information. Electronic informed consent was obtained before the start of interviews, including permission to audio-record. Research protocols and procedures were approved by the last author’s institutional review board. We utilized semi-structured interview guides ( Table 2 ) for greater flexibility (i.e., add/modify questions, change question order) and to encourage new or relevant conversations and audio-recorded all interviews. Researchers strategically developed the interview guide to capture a robust understanding of the multi-dimensional factors associated with healthcare for patients with fibroids. We began by reviewing relevant literature, brainstorming a list of potential research questions, including the questions that guided this paper, and identified key interview topics covered by each question. Primary interview questions were selected, followed by creation of secondary probes to encourage deeper conversation. Researchers began interviews with general questions to build rapport, followed by questions related to fibroids diagnosis and treatment, healthcare access, and resulting psychosocial impact [ 29 ]. Interviews lasted approximately 50 minutes (Mean=50.30; SD=11.21; Range=27-74). Following interview completion, participants completed a brief demographic survey and received a $100 gift card incentive. We utilized Braun & Clark’s six-step approach to data analysis [ 30 ]. First, we transcribed interviews verbatim to retain the ‘original nature’ of the verbal accounts [ 30 ]. Then we transitioned into initial phases of analysis by conducting an immersive data content review to ensure uniform familiarity among members [ 30 ]. Next, we used a ‘dualistic’ deductive/inductive approach for codebook development to foster greater representation of the data [ 31 , 32 ]. The codebook was developed based upon interview guides, initial reading of transcripts, and existing literature. Multiple coding rounds were systematically conducted in HyperRESEARCH 4.5.2 until saturation was reached [ 30 ]. Codebook development and coding were led by AL and CD. Weekly team meetings were held to ensure interrater reliability. Data were exported upon coding completion—codes were then collated into potential themes/subthemes and relevant data was gathered [ 30 ]. Two team members (CD and AL) created a thematic map to visually represent the relationships between codes, subthemes, and themes to aid in candidate theme development, which underwent a multi-stage review process to confirm validity [ 30 ]. Thematic development was data-driven and closely reflected participant responses [ 30 , 33 ]. Lastly, we further refined theme content to guarantee data accurately and sufficiently portrayed the ‘essence’ of each theme [ 30 ]. First-order themes captured overall patterns within the data, while second-order themes (subthemes), provided structure and differentiated levels of meaning [ 30 ]. The research team met monthly to discuss analysis progress, evaluate thematic development, and engage in ‘peer debriefing’ [ 33 ]. Final themes resulted from consensus and emerged from continuous analysis and refinement following the overall story conveyed by the data.

A total of 20 participants aged 18 years or older (Mean=38.1±10.4 years; Range=23-60) completed interviews. Most participants were Black or African American (n=15, 75%), while the remaining were White or Caucasian (n=5, 25%). The majority self-identified as heterosexual (n=18, 90%); others self-identified as bisexual (n=1, 5%) or other (n=1, 5%). Participants reported having either public insurance (n=10, 50%), insurance through an employer (n=9, 45%), or private insurance outside of employer (n=1, 5%). Nearly all participants initiated or completed a post-secondary degree (n=19, 95%) and 19 (95%) were actively employed at the time of the interview. See Table 1 . Four themes emerged from the data: 1) Symptoms, disparities, and resources; 2) Daily disruptions and supports; 3) Treatment options, decision-making, and outcomes; and 4) The future of fibroids. Each theme is noted below with subthemes and representative participant quotes. Quotes are followed by participant age. Table 3 provides additional quotes. Before diagnosis, participants reported experiencing heavy bleeding and pelvic pain during menstruation: “ I had extremely painful periods. And I didn't understand why I had them (46).” Other women recalled bowel or fertility disturbances and pelvic pain, which was the triggerto finding medical care, “ I was under excruciating pain, chronic pain, that was when I went to seek medical help (24).” Many women perceived symptoms as abnormal, “ Um, I was scared because, it was completely just out of the blue, but I knew something wasn't right (41).” While others considered theirs as normal, “ I thought it was normal maybe having heavy flows, painful heavy flows (25).” Participants also reported psychological disturbances: “ It’s like you sometimes you get mood swings. Because pain is crippling (60)” and sexual disturbances: “… at times [during sex] you feel like you are becoming a mini lake (30).” Women also worried about unpredictable symptoms, “ I feel like there's always in the back of my head of when it's going on flare up again (41).” Participants felt dismissed when healthcare providers (HCPs) deemed their physical symptoms as ‘normal’ menstruation pain: “Like feminine problems don't count as actual problems in the medical field…and like no one would believe me (30).” One woman questioned if she would have received better care under a Black provider, “ But I just feel like possibly that it could be more informative. If my doctor was maybe African American female (46).” Participants reported a multitude of barriers including long wait-list times: “It would have taken weeks or months to see someone (30),” inadequate insurance coverage: “In terms of the cost it’s a bit hard for me, considering I don't have any insurance coverage (24),” and travel distance: “[HCP] is two hours away from my place by a bus…When I don’t schedule my day so well, I end up getting late to get there (36).” Many participants received information from an affected relative or friend about symptoms and treatment before diagnosis: “Yeah, my mother had them too. I think they led to her having a hysterectomy fairly young (45).” In contrast, some participants were completely unaware of fibroids before diagnosis: “ I don’t think I ever heard about fibroids until I was diagnosed (46).” Many women turned to the internet for information: “ I first learn[ed] about uterine fibroids from some article in Google (29).” Others relied on the internet for additional information after diagnosis: “He [HCP] gave me the diagnosis told me a little bit and then I went home and dug a little deeper (41).” A few participants recalled addressing what they found on the internet with their HCPs while others preferred not to rely heavily on internet information. Participants described how fibroids symptoms negatively influenced daily life. Symptoms often restricted social engagements: “ I had to leave them at the party and go back home because I was in so much pain (36).” Participants also discussed having to miss work and fears of career regression: “ It’s so demoralizing because I see that is just, my work has gone down. And that time I’m away, I feel so bad, I feel so down (30).” Daily activities were also affected due to the frequency of needing to change sanitary supplies, “ The worst part about it is nothing can go on for about a week, I have to lay in bed changing and changing, cleaning out this mess, keeping everything in control (23).” Family and friends were the most frequently discussed support systems: “Mother has been, has been my biggest support system. She has been there for me every time, there to support me, physically, emotionally (36).” One participant mentioned tapping into her spirituality, “I talk to God (60).” However, not all participants relied on their families for support: “And then with my family, we like don't talk about reproductive health. We barely talk about health. We're close, but we're not open in that way (30).” Many participants sought mental health services, including therapy or medication, to manage negative feelings from fibroids, “I was able to get some anti-depressants (29).” Additionally, online support groups provided participants a sense of community and reassurance: “I felt relieved that I wasn’t alone in the journey of battling fibroids. I felt, um, like this sisterhood, so to speak, of women who have made the same journey (46).” The pandemic had varying effects on patients with fibroids. Some found it challenging to visit HCPs: “ I think with COVID it’s kind of harder to get in to see a doctor versus like doing virtual visits and stuff like that (48).” However, other participants described how the pandemic provided greater flexibility and eased the burden of fibroids management, “ It’s a lot easier to be having a heavy period at home than it is running in or out of the bathroom at the office, right ? (30).” Participants discussed a myriad of fibroids treatment options. Some opted for hormonal treatments: “I have been taking some hormonal drugs…progestogen receptor modulators to regulate maybe the hormones to ease the symptoms (25).” Others relied on pain medication as their primary treatment: “My gynecologist prescribed Tramadol to get me through days where it was just so much that I couldn’t take it (46).” Alternatively, some sought natural treatments: “I would rather heal myself through my diet and my gut than taking a lot of medicine (46).” Overall, many participants described a similar, conservative approach to treatment, starting with hormonal and/or pain medications before escalating to more invasive surgical options and preferred to treat only symptoms that were hindering daily life: “The medication was the first thing and then they did the procedure (47).” Fertility goals often influenced treatment decisions: “ The big conversation was do we remove it before starting a family, before trying a pregnancy or go ahead and try a pregnancy with the fibroid (45).” Many women prioritized fertility-sparing treatment options, “ [I] just had a surgery that removed the fibroids without, you know, harming the uterus in any way, because I’m still in my reproductive years and I would like to have a baby (24).” For women desiring future childbearing, fertility concerns dominated treatment conversations with HCPs: “ She [HCP] told me all my choices, plus, she kept in mind that I still wanted to try to have kids…we kept the childbearing in mind (46).” In contrast, an absence of fertility concerns also influenced the fibroids treatment decision process: “ I decided to have a hysterectomy because I thought that was the best option for me, since I wasn’t considering to have any other child …I’m comfortable with my two (36).” Many participants voiced personal autonomy after being sufficiently informed of treatment options: “ He [HCP] let me make the decision. He just he just provided the options. It was solely and strictly my decision (46).” One woman described how patient-centered communication positively impacted her treatment decision, “ I felt like I was listened to and I was able to ask questions and get answers. I feel good about my decision. And it definitely was my decision. I don’t feel like I’m being forced or anything like that (48).” Others preferred provider-led decision-making: “ Yeah, I just went with whatever the doctor told me. You know at that point I was kind of fed up with the issue and I just wanted it to be fixed. So, whatever they were telling me I was ready to go for it (37).” Similarly, one woman recalled, “I knew he [HCP] wouldn’t do anything to harm me and he wishes me the best, so when he told me myomectomy is okay I went ahead to do it (25).” Participants voiced a spectrum of emotions regarding treatment decisions and outcomes. Many shared positive remarks: “ My surgery [ovary-sparing 2hysterectomy] went really, really great…I was a little nervous about prolapse, urinary incontinence…But honestly, I had a very, very smooth recovery. I couldn’t have had like asked for a better experience with that (39).” However, others expressed disappointment in treatment results, “ It [uterine fibroid embolization] didn’t really work. Because I was still experiencing the same side effect, the same symptoms, but worse (46).” Participants reported varying effects of treatment on their psychological wellbeing with some expressing fear and uncertainty and others showing more positive changes in their emotional state: “ Just have the uterus removed and live a happy life, despite the disadvantage that are with the hysterectomy, the hormonal changes, but the moment everything is ok, I feel okay, I’m not feeling any pain anymore (36).” Many participants expressed the need for greater awareness: “ Providing some brochures, random people make the shopping centers about the same. At least one can grab one and can read about them (25).” Similarly, some participants advocated for targeted awareness initiatives, particularly for at-risk groups, “ Getting information and awareness out there to the communities that are most affected by uterine fibroids, which is the African American community (46).” Recommendations primarily focused on patient-provider communication networks and strategies, as one woman described the need for, More centralized records…[and]…physicians communicating a little better with the specialists that they were sending me to or even within their own practice so I didn’t feel like I was having to give the information over and over again (45). Another proposed, “ Believing people when they say they hurt…spending time with your patient as people instead of just like, a set of organs to be examined would be nice (30).” Similarly, one woman suggested providers educate more thoroughly, “ Explain what the symptoms are so that people know I might be experiencing this because of the fibroids because I don't really know what those symptoms are (47).” Lastly, many participants recommended asking providers more questions: “ I also think that women need to ask questions and ask as many questions as possible with their gynecologist (46).” To conclude the interview, participants were asked to share any information they wish they had known or wished their provider had discussed. One woman shared: I wish that 10 years ago or even five years ago, my doctor would have looked at my symptoms and considered fibroids were the cause. Instead of it just being like maybe endometriosis or it’s just a really bad period (39). Some wished they had better fibroids knowledge before diagnosis: “Maybe I wouldn’t be so afraid when I knew I had symptoms, when I thought maybe it was something deadly (36).” Others desired more information regarding treatment options: “ I guess I wish I had known…there were other treatment options because all I heard was we can remove them but that's a major surgery (47).” Lastly, some women wished for the scientific unknown: “ I wish that going forward, we could find out why they grow (46).”

The purpose of this paper was to explain the healthcare experiences of patients with fibroids across the continuum of care and identify how the social determinants of health impact fibroids experiences. Through a series of 20 interviews with patients with fibroids, we uncovered symptoms interpretations varied from normal to abnormal, and many experienced disparities in receiving timely, quality healthcare and fibroids-related information. Women often sought support from family, friends and/or support groups to cope with physical symptoms negatively impacting nearly all aspects of daily life, including psychological and sexual disturbances. Treatment options, decision-making, and outcomes were guided by clinical and non-clinical factors, with fertility dominating many patient-provider conversations. Overall, participants advocated for greater fibroids awareness, communication, diagnosis, and treatment initiatives. Obstacles for women with fibroids included inequalities in healthcare access, particularly in rural, health professional shortage areas, including far travel distance [ 14 ] and longer wait times which may delay care or result in patients leaving before receiving care from HCPs. While general HCPs can diagnose and pharmacologically manage fibroids, many patients with fibroids will require more specialized care from OBYGNs who are surgically trained to perform fibroids-related procedures. Additionally, our study was consistent with recent research describing how women utilize the internet to further search their condition after receiving a fibroids diagnosis [ 34 ]. Thus, women should have sufficient e-health literacy to find, understand, and appraise web-based information [ 35 ], as well as have digital literacies to avoid information overload [ 36 ]. Regardless, the web-based search result later initiated patient-provider discussion in search of reliable information. To ease the burden on patients with fibroids, systemic improvement inside and outside clinical settings, should be taken to reduce the gaps in accessing affordable, quality healthcare. Consistent with current literature, participants reported that managing fibroids infiltrated many aspects of daily life. First, women recalled fibroids negatively impacting their social lives, often canceling social outings and missing major life events due to symptom severity, leaving many feeling isolated from their social networks [ 8 , 37 ]. Second, women reported missing work and expressed fears of career regression in the workplace [ 37 , 38 ]. Inevitably affecting economic stability and resiliency of patients with fibroids due to the burden of fibroids medical expenses, which average $11,750 yearly [ 39 ]. Third, not all women relied on their family and friends to talk about their health. Women also sought mental health services to cope with negative feelings related to fibroids. These findings highlighted the importance of integrating mental health services and resources into the fibroids continuum of care. Lastly, during the COVID-19 pandemic some women voiced difficulties making appointments and had to meet virtually with their providers. The COVID-19 pandemic hindered women’s access to healthcare, [ 40 ] particularly when they need to see specialists [ 41 ]. Treatment options, decision-making, and outcomes were heavily influenced by a meshwork of clinical and non-clinical factors. Clinical features of fibroids (e.g. size, number, location) impacted treatment options, which included non-surgical and surgical options, consistent with prior literature [ 7 , 8 , 12 , 18 ]. Many participants described a similar, conservative treatment strategy, trialling less invasive choices before advancing to surgical options, reflecting recent medical advancements in non-invasive fibroids management [ 12 , 17 , 42 ]. Among all non-clinical/personal factors, fertility concerns most frequently influenced treatment decision-making and dominated conversations with HCPs, emphasizing the importance of patient-centered disease management and patient-provider communication in fibroids treatment decisions. Understanding the impact of fertility on fibroids treatment may help HCPs better navigate treatment conversations and meet patients’ individualized needs [ 43 ]. Further, participants recalled various decision-making styles ranging from a preference for personal autonomy to physician-led. Regardless of decision-making style, women described how patient-centered approaches to care positively impacted their treatment decision, in alignment with current fibroids decision-making research [ 16 , 26 ]. Collaborative patient-provider communication and shared-decision making, among other evidence-based best practices, should continue to serve as the gold standard for fibroids treatment [ 44 ]. Participants were strong advocates for improved fibroids awareness and communication. Many women suggested avenues to increase fibroids awareness, ranging from disbursement of pamphlets in retail settings to planned educational campaigns at high schools. Awareness measures should focus on fostering basic fibroids knowledge and creating more accessible education tools, especially among Black and rural populations who are more likely to experience treatment delays and increased burden of disease [ 2 , 14 , 45 - 47 ]. Improved disease recognition for all women could expedite treatment intervention and reduce psychosocial disturbances associated with diagnosis, extending the limited body of qualitative research on the emotional impact of fibroids [ 48 - 50 ]. Furthermore, participants voiced the need for improved patient-provider education and communication during diagnosis and treatment. One woman suggested clinicians provide patients with “high-yield” talking points essentially serving to summarize basic fibroids symptomology. Intervention efforts could model prior educational approaches which utilized explanatory diagrams and images during consultation for fibroids treatment to serve as a communication tool in patients’ consumption of medical information [ 27 ]. Many participant challenges reflect social determinants of health disparities within each corresponding level of the SEM, aligning with prior literature demonstrating the impact inequities have on fibroids healthcare quality, access, and outcomes [ 51 - 54 ]. Within the individual level, participants expressed various influences on fibroids care stemming from personal, demographic, and/or socioeconomic factors. Individual preferences (e.g. fertility preservation, economic stability) most frequently impacted fibroids decision-making experiences, emphasizing the need for improved recognition of patients’ individual needs and overall life circumstances to reduce barriers and improve QOL. At the relational level, participants relied on a complex interplay of family, friends, and HCPs for emotional, physical, and occasionally financial support, accentuating the importance of having a strong social network to combat described disturbances throughout fibroids care. Intervention efforts should focus on ensuring women have optimal social support systems in place and access to mental health services to help offset the fibroids burden. Within the communal level, the positive impact of internet resources, social media, and online support groups proves to be a significant avenue for intervention. Many women recalled internet searches as their primary source of information, demonstrating a lack of fibroids knowledge, and sometimes, a disconnect in patient-provider communication on fibroids education. HCPs should strive to better educate patients and encourage open communication to improve health literacy and provide additional information resources to reduce fibroids-related stress and empower future treatment decisions. Furthermore, participants involved in support groups voiced a positive impact, demonstrating the strong potential for greater involvement. Enhanced collaboration between HCPs and social media-based support groups (e.g., Facebook or Reddit groups) could better guide patients to existing avenues of support. Lastly, interventions at the societal level should strategically target health disparities within rural and low socioeconomic (SES) regions addressing healthcare access and education, travel distance, cost, and insurance coverage. Professional societies such as the Uterine Fibroids Foundation, perhaps in partnership with Planned Parenthood or low-cost medical organizations, could work together to promote greater fibroids awareness, initiate early interventions, and expedite referrals among at-risk populations. Additionally, these institutions could implement community-based education programs within low SES areas to improve women’s knowledge regarding fibroids to address misconceptions of what is ‘normal’ menstruation and promote healthcare-seeking behaviors. The present study is among the first to utilize qualitative methodology to explore fibroids experiences to encourage open communication and capture a robust understanding of fibroids patient experiences. However, results should be interpreted in light of some limitations. Due to limited geographic recruitment, this study may not be generalizable across all locations or sociodemographic groups. Interviews may have been subject to social desirability and recall biases; however, researchers sought to minimize biases by ensuring participant responses were anonymous and prioritizing newly diagnosed women. Future research should consider investigating these topics amongst a larger, qualitative study to capture broader patient experiences and further investigate fibroids healthcare disparities among low SES and rural populations. Results offer rich insight into the patient experience with fibroids, highlighting many areas of potential improvement within fibroids care. Resulting data yields practical recommendations for not only OBGYNs, but any general HCP who diagnoses and/or treats fibroids, to improve clinical care standards and patient health outcomes for affected women. Translation of research to practice was guided by combined SEM and social determinants of health framework for development of strategic, theory-based interventions aimed to target various aspects of fibroids care within each level. This study creates new knowledge exploring the patient experience across the continuum of care, from early symptoms through diagnosis, treatment, and management, and practically contributes to the limited body of qualitative fibroids research.

Uterine fibroids (fibroids)—benign masses of the uterus—have an estimated prevalence of 4.5% - 68.6% depending on study population [ 1 ]. Based off ultrasonography, estimated cumulative incidence of fibroids is up to 70% of White and 80% of Black USA reproductive-aged women by age 50, making it among the most common and costly ($17-30 billion annually) reproductive health conditions [ 2 - 6 ]. Patients with fibroid symptoms most commonly present with heavy menstrual bleeding, pelvic pressure and/or pain, bowel and/or bladder complaints, or infertility [ 7 , 8 ]. Many risk factors have been associated with fibroid development, including biological (early menarche, family history, hypertension), demographic, and lifestyle (nulliparity, obesity) factors [ 9 - 13 ]. Additionally, Black women have a three-fold greater risk of fibroids than White women [ 1 , 10 , 12 ], indicating a significant health disparity. Black women with fibroids often experience earlier onset, worse symptoms, and are more likely to require a hysterectomy than other races [ 1 , 2 ]. Compared to White women, Black women significantly delay seeking treatment, resulting in experiencing symptoms for an additional year before treatment and report needing additional information about fibroids, treatment options, and treatment outcomes [ 2 ]. Geographic diversity has also been shown to affect healthcare access, particularly in rural, health professional shortage areas [ 14 ]. Twenty-four out of 92 counties in Indiana have no OBGYN (Obstetrics and Gynecology) specific service, [ 15 ] significantly restricting women’s access to more specialized fibroids healthcare (apart from healthcare provided by general HPCs). Limited research has explored geographic differences in fibroids symptoms, diagnosis, treatment, and outcomes, [ 16 ] highlighting a critical need to better understand how geographic (e.g., rural vs. urban) and demographic characteristics (e.g., race/ethnicity) impact fibroids care. Fibroids awareness is low with half of women at the time of diagnosis being unaware of fibroids and what health issues are associated with them [ 5 ]. This lack of awareness results in late patient recognition of disease and delayed clinical diagnosis, reducing the success of non-surgical and minimally-invasive intervention approaches to lessen symptoms. Remaining treatment options (e.g., hysterectomy) are not only financially costly, but also have significant quality-of-life consequences, negatively impacting relationships, self-image, and physical and emotional wellbeing [ 5 , 17 ]. In asymptomatic women, fibroids are often diagnosed incidentally during clinical exams or imaging [ 18 ]. Women who are asymptomatic, or do not recognize their symptoms as abnormal, receive little clinical attention and remain undiagnosed [ 19 , 20 ]. If left untreated, fibroids may incur debilitating complications such as ureter obstruction and infertility [ 21 ]. The social determinants of health are embedded in a larger framework, the Social-Ecological Model (SEM) ( Figure 1 ). The social determinants of health are shaped by historical, social, political, and economic factors, which help explain the relationship between one’s environment and health outcomes, including quality of life (QOL) [ 22 ]. Embedding them within the SEM, which conceptualizes health broadly through overlapping individual, relational, communal, and societal levels will allow us to better understand barriers and facilitators to fibroids-related decisions, behaviors, and outcomes [ 23 ]. This framework approach will also guide us toward sustainable solutions for individuals and communities disproportionately impacted by fibroids. While women report varied patient experiences [ 2 , 3 , 24 , 25 ], little is known about sociocultural contexts in which women find information and make decisions about fibroids, or the impact of non-physical symptoms on treatment decision-making [ 26 , 27 ]. Exploring healthcare experiences and treatment plans is particularly important given recent developments in non-surgical medical treatments [ 28 ]. Research in this field has called for a patient-centered approach to better understand women’s experiences, preferences, and needs for treatment and/or management [ 16 , 26 ]. Current information on the topic includes mostly quantitative approaches, which do not capture women’s personal experiences and stories [ 2 , 8 ]. Therefore, this paper seeks to answer the following questions: 1) what are the healthcare experiences of patients with fibroids across the continuum of care, from early symptoms through diagnosis, treatment, and management; and 2) how do the social determinants of health impact patients with fibroids.