“Es que tú eres una changa”: stigma experiences among Latina women living with endometriosis

We conducted a cross-sectional study with a qualitative design using focus groups techniques composed of women with a diagnosis of endometriosis. This design was chosen to obtain a detailed description of their experiences, opinions, perceptions and beliefs that are needed to comprehend the phenomenon of stigma [ 39 ]. All participants ( n = 50) were recruited during four different educational activities for women with endometriosis, organized by the Fundación Puertorriqueña de Pacientes con Endometriosis (ENDOPR) and promoted through its webpage, email listings, and social media. ENDOPR is a patient advocacy foundation in Puerto Rico with a mission to educate and provide support for women living with endometriosis and their relatives. ENDOPR is not a member-based association. Participation in the focus groups was voluntary and were conducted as part of these educational activities. Participants were: (1) women older than 21 years of age, (2) diagnosed with endometriosis by surgery, and (3) identified themselves as Puerto Rican. The research team was composed of faculty members (IF, ER) and advanced clinical psychology doctoral students (YM, AS). Before beginning our study, the research protocol and informed consent forms were approved by the Ponce Research Institute Institutional Review Board (IRB). After the approval, the educational activities were promoted using flyers through ENDOPR’s webpage and social media. All participants of the ENDOPR educational activities were invited to take part in the study. Those interested were explained that they could still participate in the focus groups even if they did not want their verbalizations to be used for the research study. All participants agreed, for a 100% response rate. We approached a total of 50 women with endometriosis and each group was composed of 10–12 participants. Once informed consent forms were signed, one-time focus groups sessions were conducted. Five focus groups of approximately one hour of duration were conducted. These groups met only once and there was no follow up from the participants. No personal information was gathered from participants to encourage participation and preserve anonymity of data. The focus groups were conducted in three municipalities around Puerto Rico [San Juan and Metro area (2), Ponce (1), and Mayagüez (1)]. We chose different municipalities to reach participants outside the metropolitan area of San Juan. The moderators of the groups were advanced clinical psychology students at the time (YM, AS). Focus groups were conducted using a semi-structured interview guide developed by the researchers ( Table 1 ). The verbalizations that emerged in the focus groups were about women’s individual experiences of living with endometriosis arising from discussions guided by questions from the interview guide. We conducted a thematic analysis to interpret the data obtained by audiotaping the focus group discussions. Thematic analysis is a method for systematically identify, organize and offer insight of patterns in a data set [ 40 ], which allow us to explore and make sense of the participants experiences. Our analysis was framed on Braun and Clarke’s six-phase approach, which allow us to: (1) familiarize with the data, (2) generate initial codes, (3) search for themes, (4) review potential themes, (5) define and name themes, and (6) produce the report. Audiotapes were transcribed by advanced clinical psychology students (YM and AS). This process allowed them to become familiarized with the collected data. After this process, all the members of the research team read the transcripts individually and then in group in order to identify aspects of the data that were of interest and themes related to stigmatization processes. After developing an initial list of potential themes, the research team extracted from the transcripts the texts that evidenced each theme. After group discussions regarding the adequacy of the verbalization and the themes, only those themes in which all members were in agreement remained for an 100% inter-rater reliability in the analysis [ 41 ].

The main thematic finding that emerged from the data was that of “ changuería ”. “ Changuería ” is a cultural saying and a label traditionally applied in the Puerto Rican context to someone who is perceived to be excessively whining or complaining without apparent reason. Despite the lack of research about this concept in Puerto Rico, it has been suggested that “ changuería ” is a label often used as “an exercise of power to appease foolishness and silence an insistent claim” [ 42 ]. There are different definitions of “ changuería ” in Latin America that include drunkenness, whimsical or prissy, a prank, gesture or grimace [ 43 ]. In our findings, “ changuería ” was applied repeatedly across multiple social contexts in the lives of women living with endometriosis. Below, we present three of these social interactions: (1) family interactions, (2) health-care interactions, and (3) social interactions. In this context we included verbalizations related to participant’s opinions, beliefs and experiences on how their family members perceive them as women living with endometriosis. One of the first issues emphasized by participants was that they were labeled as “ changas ” by spouses and family members who shared the notion of pain as something “normal” that has to be endured as part of women’s everyday lives. One participant explained: In my house, they called me “the hermit” [patient cries], because I do not leave the bedroom. When I go out [of the bedroom] … the same “show”, that I seem to be dying because I’m out of the bedroom… well because that’s the way I feel [like dying]. (Focus group of Ponce, 2018) In this case, the participant explains how she is rejected because her endometriosis symptoms do not allow her to go out from her house, something that seems to be conceptualized from the perspective of the observer as something that makes her socially different (hence the term “hermit”). Her perception is that her family cannot understand how she feels and while the pain is so severe that she felt “like dying”, her family members perceived she is putting on a “show” or exaggerating her symptoms. Another participant also echoed her family’s lack of understanding of her feelings: The most common thing is that people say: ‘oh, everybody has menstruation, you’re not the only one’ … and I have heard that comment from people in my family. I had aunts who told me: “that’s normal”. (Focus group of San Juan, 2018) Linked to this view of pain as something “normal” that has to be endured as part of women’s everyday lives, another participant further expressed the implications of not ascribing to this sense of “normalcy” of enduring pain: “In a situation, an aunt said ‘you are like changuita , every month you put yourself changuita , and that does not help’”. Along this same line, another participant expressed: He (her husband) used to tell me ‘girl, that’s just changuerias because (as a paramedic) every day I take care of girls like you that call from the University, who have pain and what they put on you is a IV and then it’s gone; that is changuerías ’. (Focus group of Ponce, 2018) In this example, a participant’s partner (a paramedic) emphasized the same idea of pain as usual for women, while also minimizing the participant’s specific pain related experience by comparing her to his patients. In my case, it caused my divorce…because he (her husband) told me: ‘why yes before and not now [referring to sexual intercourse]; those are your excuses’…and not being able to please him. He did not want to understand, he said that I was a changa … to the point that he came to me and said: “if you do not want me, then you have someone else at work. (Focus group of San Juan, 2018) In this case, the patient explained that her husband perceived that her unwillingness to have sexual intercourse with him was because she had another partner, rather than related to the pain she experienced during intercourse. Participant’s verbalizations emphasize that they are labeled as “ changas ” when they do not behave as expected by their partners or other family members. Strained intimate relationships, including causing the divorce, as a result of endometriosis have been previously documented in the literature [ 6 , 44 , 45 ]. Unfortunately, this pattern persists in other social interactions. In this second context, participant’s verbalizations emphasized being labeled as “ changas ” by health professionals when discussing their symptoms and treatment. One participant mentioned: I already have three (3) specialists. Sometimes they thought that I was going for pain medication. One of them laughed and said it was muscular… “it’s that you are a “ changa ”. That word is so common. (Focus group of Ponce, 2018) Another participant echoed this experience and further linked it with her avoidance of seeking healthcare: It happened with a specialist, who after every operation told me that I was a “ changa ”. I have not been to a gynecologist for more than a year. I’m “fugitive” because it’s frustrating. (Focus group of San Juan, 2017) In these verbalizations, participants expressed how they are being labeled as a “ changa ” by their doctors because of the endometriosis related pain. The use of this label meant that their symptoms were dismissed by those who are supposed to provide them with healthcare. Similarly, another participant expressed: The gynecologist tells me that these are gases, that I have nothing… and I’m like “doctor, they are not gases, the pain I have is too strong, I have something”. “No, you have gas, I’ll explain”, and then he draws something and then dispatches me. (Focus group of San Juan, 2018) The participant’s verbalizations suggest how physicians (a male gynecologist in this case) normalize symptomatology, limiting them to receive treatment for their symptoms and therefore, reinforcing that notion of normalcy. In addition, there is an exercise of power when the gynecologists dismiss the experience of the participant and proceeds to explain her in a condescending way what she is supposedly experiencing. This example was also echoed by another participant who recalls a similar experience from her childhood and how it impacted her well-being: Frustrating that at 9 years old my mom took me to the gynecologist and that he told me that it was impossible to feel so much pain. Every time I had my period, I preferred to stay in the house and not go to school. I preferred to lock myself in my room and do nothing. There came a point that I asked myself: “And who will help me now?”. (Focus group of San Juan, 2017) These verbalizations evidence how patient-provider interactions among women living with endometriosis are mediated by power imbalances that sometimes dismiss their experiences and puts them at increased vulnerability by pushing them away from healthcare treatment. In this third and last context, verbalizations focus on participant’s perspectives and experiences in other general social contexts beyond family and healthcare (i.e. at work or with friends). Also, they verbalized examples of how the media and society at large perceive endometriosis vis-à-vis other conditions. One participant mentioned: You feel totally misunderstood… you feel that many times people do not understandyou, because many times people know more about cancer than about a disease likeendometriosis. (Focus group of Ponce, 2018) In this example, the participant shared her perception that others view endometriosis as less serious than other chronic health conditions, and how it creates a separation between them and other patients. Another participant expressed: This is so disabling, …I would say that like muscular dystrophy…, because it reaches the point where you cannot move. And yet right now there is even an advertisement for sanitary napkins, that says, “do not let your period prevent you from doing anything” and they show these super women, one cooking, the other doing exercises, [doing] 20 thousand things. Look, people are seeing that, and they do not know… we are back to the same thing… that you are a changa , because they [the woman in the ad] can, and you cannot. (Focus group of Ponce, 2018) In this verbalization, the patient expressed her feelings about how the portrayal of women in the media perpetuates the stigma and reinforces the discourse and sense of normalcy of how women are supposed to experience menstruation. Another key issue that emerged was the impact in the workplace. As one participant explained: Nobody understands, nobody understands. Yesterday the boss called me, threatening me of abandonment of employment, that I will go through legal services. As I mentioned, I am a teacher. I already sent the excuse, the medical certificate, I talked to him, I told him that I have Endometriosis type 4, nothing to do… as you say, for them [I am putting on a] show. (Focus group of Ponce, 2018) Similar to the previous examples, although in this case implicit, the view of endometriosis as a “ changuería ” seems to be ever-present and damaging to the person’s well-being. As with this example, this view puts women living with endometriosis in a vulnerable position, in this case at risk for being unemployed.

Our findings suggest that stigmatization among Puerto Rican women living with endometriosis is an ever-present barrier that impacts them across multiple social interactions in their everyday lives. This study is one of the first contributions regarding the potential role of endometriosis stigma in the health and healthcare of Latina women living with endometriosis. These findings are similar to those documenting the potential negative impact of stigma among people living with other chronic pain diseases [ 46 ], including women living with endometriosis [ 33 ]. It is crucial to understand the impact of stigma in women with endometriosis as it can foster high-level stress situations, act as a barrier to care, contribute to a delay in management and treatment, and ultimately increase the severity of the symptoms of the condition. Our results show that the notion of menstrual pain as normal is commonly presented by families, health care professionals and society. This could be related to what literature has already documented regarding the stigmatized status of menstruation in itself, which leads to a poor understanding and a communication taboo of the topic [ 47 ]. Thus, the production and reproduction of invalidation (rejecting or denying someone’s emotions and experiences) and lack of understanding, can lead women living with endometriosis to conceal their symptomatology and suffer in silence. Refraining to disclose their endometriosis symptoms could be a strategy to avoiding the stigmatization that stems from openly talking about the experiences of a condition poorly understood by the general population. Consistent with the scientific literature, due to the notion that is “a woman’s lot to suffer” [ 33 ], we found that relatives, partners and health professionals, perceive having pain during menstruation and during sexual intercourse as something women should be able to manage, producing a sense of inability to disclose the extent in which these women might be suffering. Dismissing and normalizing endometriosis-related pain and symptoms at any of the aforementioned contexts, can potentially continue to delay diagnosis and act as a barrier for healthcare service seeking, which might in turn lead to poor treatment management and patient outcomes. To the best of our knowledge, the cultural weight and label of “ changuería ” assessed in our study, has not been previously documented for patients living with another health condition in Puerto Rico. It would be interesting to identify if other labels with the same or similar connotations are used to stigmatize women with endometriosis in other countries, contexts and cultures. In our results, the stigma emerging from the verbalizations used the concept of “ changa ” to refer to women living with endometriosis as complaining about their pain without any apparent reason. This label was frequent, not only in the family context, but in interactions with physicians, health-care professionals, friends and coworkers. That is, it was similarly applied to exert control in multiple social contexts. Literature has coined the term “stigma power” to describe how people use stigma as a resource to keep other people “down” (dominate them), “in” (control them) or “away” (exclude them) in order to obtain the ends they desire [ 48 ]. As evidenced in our results, “ changuería ” can be understood as a mechanism through which women living with endometriosis are kept “down” (i.e. enduring pain during sexual intercourse), “in” (i.e. dismissing symptoms in patient/provider interactions) or “away” (i.e. workplace insecurity). One of the implications of these findings is that it creates multiple scenarios where women living with endometriosis can experience high levels of stress due to the stigma and discrimination, something that according to literature could further exacerbate their symptomatology [ 33 , 49 , 50 ]. Similar to what we found in the literature, in our results the label of “ changuería ” is often applied to women living with endometriosis as a response when opening up and talking about their symptoms, which silences their experiences. Therefore, the cultural weight of this label in the Puerto Rican context can have a detrimental impact on social relationships, well-being, healthcare seeking and treatment outcomes. There are some limitations in this study. First, we did not collect demographic data of the participants in the focus groups, such as the length of time with endometriosis and severity of the symptoms, which limited our discussion of the findings. Because this study represents, to our knowledge, a preliminary effort to gain a deeper understanding of how stigma impacts the lives of Latina women with endometriosis, our focus was on documenting the patients’ experiences. An ongoing quantitative study using validated instruments will address this gap. Second, the recruitment was made during educational activities organized by ENDOPR, and patients who participated in the study might be more affected by the disease, or open to talk about their condition compared to patients who are under treatment or feeling well. We acknowledge that women participating in the ENDOPR activities may not be representative of the wider population of women living with endometriosis. In spite of the limitations, our findings evidence frequent stigmatizing experiences across multiple scenarios in the daily lives of women living with endometriosis in Puerto Rico. Based on the literature, we argue that women from other cultural contexts could have experienced stigma by families, partners and professionals, which could also negatively impact their treatment, wellbeing, symptomatology and treatment outcomes.

Health care, family and social interactions seem to be particularly impacted by stigmatizing attitudes according to participant’s experiences. These results emphasize the need to further address stigma as an important psychosocial variable impacting the diagnosis, treatment, social relations, and ultimately, the health and wellbeing of women living with endometriosis. As shown in our results, stigma is a variable that impacts the health of these patients, contributing to the delay in diagnosis, and acting as a barrier to treatment, possibly creating stressful scenarios that could worsen endometriosis symptomatology. Based on these findings, the emotional well-being of these patients is impacted by invalidation, stigma, and discrimination, which could have detrimental consequences (i.e. not receiving treatment) for their condition. Therefore, there is an urgent need to address these manifestations of stigma and their impact on the mental and physical health of Latina women living with endometriosis. In addition, there is a need for public health interventions to address public and institutional stigmatizing policies. One example is the current labor laws in Puerto Rico which do not allow for workplace related accommodations for patients living with this chronic gynecological condition [ 51 ]. Considering the broad impact that the symptomatology has in multiple contexts it is key to develop tailored interdisciplinary interventions at the individual, interpersonal and socio-structural level that foster greater understanding of endometriosis and promote health and well-being for those living with this condition. Finally, as stated previously, this is one of the first research efforts to explore specifically the stigma experiences of Latina women living with endometriosis. Our results highlight the need to increase research efforts on stigma in diverse social and cultural populations, including other Latinas (i.e. Mexican, Cuban, Dominican, etc.), in order to better understand the cultural variables that might be impacting endometriosis life experiences and the outcomes of feeling stigmatized as women living with a chronic and invisible condition. This knowledge will allow us to address the current gap in the scientific literature of endometriosis by moving beyond the traditional biomedical literature explanations of the phenomenon and developing tailored interventions to improve the physical and mental health as well as the quality of life of this population.

Endometriosis is a chronic and inflammatory disease in which endometrium-like tissue grows outside the uterus [ 1 ]. Although symptoms may vary, the most typical are dysmenorrhea (menstrual cramps), pelvic pain unrelated to the menstrual cycle, dyspareunia (painful sexual intercourse), and infertility [ 2 ]. Some women also experience gastrointestinal (dyschezia, diarrhea, constipation) and urinary (dysuria) symptoms, and other less well recognized symptoms such as back and leg pain, nausea/vomiting, and fatigue. It is estimated that endometriosis affects 176 million women worldwide, which represents approximately 5–10% of women of reproductive age of all ethnicities [ 3 ]. Despite decades of research, there is still a lack of clear understanding regarding endometriosis etiology and treatment leading to uncertainty, distress, and feelings of hopelessness [ 4 – 6 ]. Women living with endometriosis report substantial diagnostic delays (7 years in average), misdiagnosis, and ineffective treatments [ 7 ]. The very reasons for the observed diagnostic delay – normalization of symptoms by health providers and others; lack of disease awareness; menstrual taboos and etiquette [ 8 ] – contribute to a general sense of not feeling understood or believed in, that is commonly reported by women with endometriosis. The painful and disabling symptoms of endometriosis are generally experienced during the time of life in which women are expected to be healthier and most productive [ 9 , 10 ]. The negative impact of endometriosis in many aspects of the lives of patients – social relationships, work/study, intimacy, motherhood – is well documented in diverse populations of women living with the disease by quantitative [ 9 ] and qualitative studies [ 5 , 11 – 15 ]. These difficulties are further impacted by poor coping skills and social isolation, hypothalamic-pituitary-adrenal (HPA) axis disturbances, as well as deterioration of physical and mental [ 16 – 20 ]. To date, little research has specifically addressed the question of whether women with endometriosis experienced stigma, and to what extent this may impact on their physical and mental health, quality of life, and their sense of wellbeing. Stigma has been identified as an overlooked social determinant of health that plays a key role in the health status of people living with chronic diseases through the production of inequities and stress [ 21 , 22 ]. Stigmatization is a complex process of social control in which human differences are labeled and rejected [ 23 ]. Scientific literature has extensively evidenced the detrimental consequences of stigmatization for those living with chronic diseases such as HIV/AIDS [ 24 ], mental illness [ 25 ], obesity [ 26 ], and cancer [ 27 , 28 ]. Stigma is known to foster social exclusion, interfere with help-seeking behaviors, lower self-esteem, increase exposure to stressful situations [ 21 ], act as barrier to regular healthcare access and, therefore, impact quality of life [ 29 ]. Furthermore, recent evidence suggests that stigma is layered and often intersects with other human differences, such as gender [ 30 ]. Studies addressing endometriosis-related stigma have argued that the secrecy and shame around menstruation that exists in some cultures, can position women as discreditable individuals, hampering the disclosure of key irregularities experienced in their menstrual period. In fact, it has been suggested stigma could potentially explain the diagnostic delays observed in endometriosis [ 8 , 31 ], and that menstrual blood could be considered as a stigmatized mark [ 32 , 33 ]. It is suggested, that women could be experiencing communication taboos related to stigma, due to the notion that “it is a women’s disease”, that pain during menstruation is normal and “it’s a women’s lot to suffer” [ 33 ]. This suggests that stigma could limit women’s willingness to seek care, leading them to hide their illness and the symptoms, delaying the diagnosis and treatment, ultimately causing exacerbations of symptomatology [ 32 – 34 ]. In previous qualitative studies, women with endometriosis have reported criticism from employers, partners and family members, who perceive menstruation irregularities as a normal and non-pathological process. Some other studies showed that patients did not feel validated or believed about the magnitude of the pain; often, those around the patient normalized the symptoms and sub estimated their impact [ 35 , 36 ]. Moreover, women with endometriosis reported being treated with disbelief regarding their symptoms by health professionals [ 37 ]. In order to manage the stigmatization in health, it is vital to document and describe how this process manifests in people with chronic diseases, such as endometriosis. To the best of our knowledge, there are limited studies to address stigma among women (and also transmen and gender non-conforming populations) with endometriosis despite being a common gynecologic disorder that negatively impacts many aspects of a woman’s life [ 13 ]. Furthermore, although recent research has suggested that disease-related stressors, but also psychosocial factors can negatively impact the quality of life and wellbeing of endometriosis patients [ 35 , 38 ], little research to date has examined the experiences of women living with endometriosis from diverse populations, including Hispanic/Latinas, regarding their sense of how their particular societal and cultural expectations of life events impacts their self-esteem, wellbeing and relationships. Thus, the purpose of this study was to explore and document experiences of stigmatization among women living with endometriosis.