Citizen science “from the margins”: epistemologies of ignorance in the Movement of Women with Endometriosis in Mexico

ABSTRACT

This paper analyzes, from the perspective of feminist epistemologies of ignorance, the case of Endometriosis México: an association of women with endometriosis that denounces different types of ignorance produced around their disease. I examine how the unveiling and analysis of the production of ignorance has become a central element of their struggle and the driving force behind the creation of new knowledge. This is a case of citizen science made “from the margins” that does not fit the typical citizen science instrumental or democratic discourse. In this sense, it proposes new directions for discussing public participation in science and technology. The work accounts for the process of production of ignorance identified by the Association in the light of three forms suggested by Nancy Tuana: (i) “knowing that we do not know, but not caring to know,” (ii) “we do not even know that we do not know,” and (iii) “they do not want us to know.” I propose a citizen science “from the margins” as a form of public participation in science and technology based on an epistemology of ignorance.

RESUMO

Este artigo analisa, desde a perspectiva das epistemologias feministas da ignorância, o caso da Endometriosis México: uma associação de mulheres com endometriose que vem denunciando os diferentes tipos de ignorância produzidas em torno de sua doença. Examino como o desvelamento e a análise da produção da ignorância se tornaram um elemento central de sua luta e o motor da criação de novos conhecimentos. O caso nos mostra uma ciência cidadã feita “às margens” que não se identifica com o típico discurso instrumental ou democrático da ciência cidadã. Nesse sentido, propõe novos caminhos para a discussão sobre a participação pública em ciência e tecnologia. O trabalho dá conta do processo de produção da ignorância identificado pela Associação à luz de três formas sugeridas por Nancy Tuana: (i) “saber que não sabemos mas não importar em saber,” (ii) “nem mesmo saber que não sabemos,” e (iii) “quando não querem que saibamos.” Proponho aqui uma ciência cidadã “das margens” como forma de participação pública em ciência e tecnologia baseada em uma epistemologia da ignorância.

RESUMEN

Este artículo analiza, desde la perspectiva de las epistemologías feministas de la ignorancia, el caso de Endometriosis México: una asociación de mujeres con endometriosis que ha venido denunciado los diferentes tipos de ignorancia que se producen en torno a su enfermedad. Examino cómo el desvelamiento y análisis de la producción de la ignorancia se han convertido en un elemento central de su lucha y en el motor de la creación de nuevos conocimientos. El caso nos muestra una ciencia ciudadana hecha “desde los márgenes” que no se identifica con el típico discurso instrumental ni democrático de la ciencia ciudadana. En ese sentido, plantea nuevos derroteros a la discusión sobre la participación pública en ciencia y tecnología. El trabajo da cuenta del proceso de producción de la ignorancia identificado por la Asociación a la luz de tres formas sugeridas por Nancy Tuana: (i) “saber que no sabemos y que no importe saber,” (ii) “ni siquiera saber que no sabemos,” y (iii) “cuando no quieren que sepamos.” Propongo aquí una ciencia ciudadana “desde los márgenes” como una forma de participación pública en ciencia y tecnología basada en una epistemología de la ignorancia.

KEYWORDS:

• Citizen science
• feminist epistemologies of ignorance
• patient groups and health movements
• Endometriosis México

PALAVRAS-CHAVE:

• Ciência cidadã
• epistemologias feministas da ignorância
• grupos de pacientes e movimentos de saúde
• Endometriose México

PALABRAS CLAVE:

• Ciencia ciudadana
• epistemologías feministas de la ignorancia
• grupos de pacientes y movimientos en salud
• Endometriosis México

1. Introduction

The Fundación Mexicana para el Apoyo a Mujeres con Endometriosis A.C. (hereafter, Endometriosis México or Association) is an association of women with endometriosis that seeks to give public visibility to the disease through the dissemination of information to relevant actors: girls, adolescents, and women of reproductive age; specialists from all three levels of the medical care system (see Vignolo et al. 2011); public and private health institutions; and the general population. In achieving this objective, however, problems have led them to disseminate existing knowledge about the disease to unveil everything that is still not known about it, as well as to acutely reflect on the dynamics, causes, and actors through which this “non-knowledge” is actively constructed and sustained.

Endometriosis is a chronic inflammatory disease, classified as gynecological, characterized by the abnormal presence of a tissue very similar to the endometrium (the tissue that lines the inner uterus) in places outside the uterus – mainly, the pelvic area (exterior uterus, ovaries, fallopian tubes, bladder, intestines, and rectum). This tissue behaves like the endometrium: each month, in response to the hormonal cycle, it becomes inflamed and bleeds. However, because this blood and excess tissue is outside the uterus it cannot leave the body through menstruation. This forms lesions, adhesions, or tumors in various organs, nerves, ligaments, and walls of the pelvic cavity in which the tissue is “trapped.”

Despite significant advances in the understanding of the disease in the past decades, it is still frequently described by both specialists and patients as “an enigma” (Whelan 2007; Culley, Law, and Hudson 2013; WHO 2021a; WES and WERF 2022). While some women do not experience symptoms, others report intense menstrual pain (dysmenorrhea), pain during sexual intercourse (dyspareunia), pain during urination (dysuria), pain during defecation (dyschezia), chronic pelvic pain, and difficulty in achieving pregnancy: the so-called 6 Ds of endometriosis clinical diagnosis (Endometriosis México 2021).

The disease is often accompanied by a series of concomitant diseases, conditions and/or alterations¹ that, together with the disease’s wide and varied range of symptoms, generate a confusing symptomatology that leads to variegated misdiagnoses. This creates a delay curve in its correct diagnosis and treatment: from 4 to 11 years from the onset of the first symptoms to the laparoscopic surgical diagnosis, which is currently the gold standard for diagnosing the disease (Agarwal et al. 2019). Once positively diagnosed, women face several problems associated with the different medical opinions that exist for their clinical and/or surgical treatment. A lack of standardized protocols and of an institutional body that regulates and monitors good clinical and surgical practices means treatments vary greatly across patients, with generally low efficacy (WES and WERF 2022).

Furthermore, the origin of the disease has diverse theories, none of which is fully accepted by the scientific community (WHO 2021a; WES and WERF 2022). This explains, in part, why the disease currently has no cure. Its management is based on clinical and/or surgical treatment of what are considered its two main symptoms: pelvic pain and infertility. It is estimated that 85% of chronic pelvic pain and 40% of infertility cases in women of reproductive age are due to endometriosis (INPER 2022a). According to the World Health Organization (WHO 2021a), endometriosis affects approximately 10% (190 million) of girls, adolescents, and women of reproductive age worldwide. Nevertheless, 6 out of 10 cases of endometriosis go undiagnosed (Agarwal et al. 2019). This makes the disease a serious public health problem, but one that very few countries are even aware of. The ignorance surrounding the disease faced daily by women suffering from it (misdiagnosis and late diagnosis, controversy and low efficacy in clinical and surgical management, unknown etiology, and unknown cure) demonstrates theoretical and technical limitations that are not fortuitous.

In this paper, I examine how for Endometriosis México it is the production of ignorance – not knowledge – that has become the central element of struggle. Thus, it is not in its influence on the production of (bio)medical knowledge that the importance of the case lies, as is often the case in foundational literature looking at citizen science, e.g. the “instrumental” (Bonney 1996) or “democratic” (Irwin 1995) perspectives. To explain this phenomenon, I turn, rather, to feminist epistemologies of ignorance (Tuana and Sullivan 2006). Specifically, I will present how three of the six types of production of ignorance proposed by Nancy Tuana (2006) are relevant to this case: (i) “knowing that we do not know, but not caring to know,” (ii) “we do not even know that we do not know,” and (iii) “they do not want us to know.” I will furthermore show how in public participation – especially when it comes to women’s health and bodies – a feminist perspective is indispensable to broaden and renew the scope of discussions within Science and Technology Studies (STS).

2. Methodological note

This article is the result of a research project focused on two cases of public participation in Mexico in the field of the body and health, and its link to classic discourses of citizen science. I focus here on the case of Endometriosis México, which I integrated into this research because of my own closeness in recent years with activist movements related to the body and women’s health, and because of its relative institutional stability. The latter concerns the constancy of Endometriosis México’s activities over the years; the ample, detailed, and accessible documentation it has made of each of its activities; and the recognition it has achieved in the context of public and private health institutions involved in the treatment of endometriosis. The case is based on qualitative social research that I conducted from March 2018 to February 2019 (from Mexico City), and resumed from November 2021 to March 2022 (from Morelia),² and that contemplated the following activities:

1. Weekly monitoring of the Association’s Facebook account and posts. Although the Association has several social networks (Instagram, Twitter, YouTube), Facebook is the preferred social network for the creation, reproduction, and dissemination of content, as well as the main textual, photographic, and audiovisual archive of its activities. The use of the Facebook Live tool to carry out interviews and round tables coordinated by the Association is a standout characteristic.

2. Weekly monitoring of the Association’s national WhatsApp group through tags created based on recurring topics (e.g. “side effects of hormonal treatments,” “alternative treatments,” “unnecessary and/or poorly performed surgeries”).

3. Monthly monitoring of the Association's webpage updates: https://endometriosismexico.com, which did not register important changes until the COVID-19 pandemic period, during which updates and graphic and web redesign were carried out.

4. Fifteen semi-structured interviews conducted with women from the Association and with members of its Medical Council, and with physicians and authorities from the three levels of health care. For the interviews, I used a snowball sampling strategy, starting with the first contact with Claudia Lacorti, coordinator/spokesperson of the Association in Mexico City.³

5. Participant observation in three medical conferences on endometriosis and in about ten events, both face-to-face and virtual, organized by the Association.

6. Consultation of various internal documents of the Association, as well as the two bibliographic publications it currently has (Endometriosis México 2013 and 2015).

3. Citizen science “from the margins”

Over the last two decades, “datification” processes in various domains of life have occurred (Couldry and Yu 2018). Activities of voluntary data collection, classification and/or analysis by members of the public, in collaboration with scientific research projects, have now developed rapidly and successfully across the Global North under the name of “citizen science” (Bonney 1996). This conception of citizen science has positioned itself as a new vision for discussing and managing public participation in scientific research (Piña-Romero 2017).

In the field of STS, however, this type of citizen science has produced a series of critiques of the type of participation that these projects assume: because participants are not taken into account to define the research questions, objectives or methodologies; because their contributions are used for purposes that are not of their choice; because participation is understood as free labor; or because participation is conceived as part of the project of neoliberalization of science (Levina 2010; Lave 2012; Mirowski 2017; Kimura and Kinchy 2016; Piña-Romero 2017). In this sense, the field has sought to vindicate and promote a type of citizen science that is closer to the forms of participation studied by STS: a science that is both complemented and put into practice by citizens themselves through the contextual knowledge that originates outside conventional scientific institutions (Irwin 1995).

The double meaning of the term accounts for the two disciplinary and geopolitical discourses in which citizen science projects are inscribed nowadays (Irwin 2015; Cooper and Lewenstein 2016; Eitzel et al. 2017; Kuchinskaya 2019): on the one hand, an instrumental discourse, mainly used in the field of science datification, focusing on the production of data and emphasizing the value of public participation in the collection, classification, and/or analysis of data for scientific research projects; on the other, a democratic discourse, used in the field of STS, which emphasizes the value of contextual knowledge and bottom-up participation in scientific research, processes of deliberation, and public policy-making. Despite their evident differences, both traditions share something fundamental: public participation is conceived in terms of traditional epistemology, in terms of what “citizens” or “affected/concerned groups” can contribute to the construction of scientific knowledge and related public policy (e.g. Fiske, Del Savio, and Prainsack 2018; Epstein 2008).

Both schools, however, do not allow for another type of citizen-led work: unveiling and studying the production of ignorance that, especially in the field of body and health, is carried out by activism and resistance movements. I propose it is fundamental to incorporate new lenses to the study of public participation that report on such practices. Here I identify three types of work that account for the important role that patient groups and health movements have played in studying the production of ignorance: the work developed within an “agnotology” framework (Proctor 1995; Proctor and Schiebinger 2008); work developed as “undone science” (Frickel et al. 2009; Hess 2016); and finally, work developed as “epistemologies of ignorance” (Mills 1997; Tuana and Sullivan 2007). It is on the latter that I will dwell most, particularly on its feminist perspective.

Influenced by the agnotological perspective of Proctor and Schiebinger (2008) and indebted to feminist and other libertarian perspectives on the study of ignorance, Tuana and Sullivan (2006) bring together a series of papers that draw on the experience of anti-racist, anti-classist, and feminist social movements and activisms to show how practices of ignorance are often intertwined with practices of oppression and exclusion linked to gender, race, and class biases. Tuana (2004 and 2006) relates how in the 1970s and 1980s, in the context of the second wave of the women's liberation movement, the Women’s Health Movement spread across the USA. This movement was characterized not only by demanding greater access to basic medical knowledge about women's health and bodies, then reserved exclusively for health professionals, but also by unveiling and analyzing the dynamics, causes, and actors through which certain knowledge and technologies had been hidden, denied or suppressed; as well as by the epistemological resistance work that led them to examine and recover such knowledge and technologies, and to develop new knowledge freed from traditional biomedical frameworks. Tuana calls this first effort “epistemologies of ignorance” and the second “epistemologies of resistance.”

Feminist epistemologies of ignorance start from the premise that to achieve a robust theory of knowledge it is not enough to study and understand why something is known but it is also necessary to study and explain why something is not known (Tuana and Sullivan 2006). Knowledge always has a counterpart or correlate: ignorance. However, ignorance has not earned the right to be studied, precisely because it has not been defined in its own terms, but always in terms of a “gap or void” of knowledge. Studying the practices of production of ignorance is essential since ignorance, like knowledge, can also be fabricated, maintained, and disseminated (Proctor 1995).

I propose a citizen science “from the margins” as a form of public participation in science and technology based on an epistemology of ignorance. Despite its important degree of epistemic involvement and being very present in social movements of resistance, this type of participation has been marginalized by the mainstream literature on public participation (see, for example, the classifications of public participation by Bucchi and Neresini 2008 and Invernizzi 2020). The reason I outline here is that this literature has assumed a traditional epistemology whose lens allows capturing only the type of participation that occurs in terms of a direct production of scientific knowledge and relegates to the periphery other types of epistemological projects, such as those focused on an inverse production of knowledge – knowledge around ignorance – that often go hand in hand with other types of social projects, such as feminism, anti-racism, decolonialism, and other liberatory projects.

4. Institutional setting: uncovering the production of ignorance about endometriosis

Endometriosis México officially began its activities in March 2009, with the launching of the website https://endometriosismexico.com/, being constituted as a non-profit civil association a year later. However, its first efforts began in 2000 in Monterrey, Nuevo León, with an email chain that founder and current president Elizabeth Rosales sent to family, friends, and acquaintances requesting information and testimonials from women who had also been diagnosed with endometriosis and were facing the same lack of institutional information and public policies to treat it. Over the years, women from different parts of the country came together and formed a small group that, using the Internet, e-mails, and occasional face-to-face meetings, accumulated experiences, documented themselves, approached associations of women with endometriosis in other countries and, after a long journey, managed to establish contact and ally themselves with the few endometriosis specialists in the country to form an association.

Endometriosis México has around 1500 registered members, with a Medical Council made up of 20 specialists, mostly in Mexico City, Guadalajara, and Monterrey. These cities also host the Association’s main activity nodes, with an added presence of other groups of women with endometriosis. The Association is governed by a simple and relatively horizontal structure composed of a General Presidency, a Medical Council advisory board, and registered members. The latter volunteer to participate in the different activities of the Association and/or as regional coordinators/spokespersons (Cfr. Lacorti 2020, 47). The basis for the functioning of the Association is thus voluntary and reliant on unpaid work of its members.

It is now plausible to speak of a Movement of Women with Endometriosis in México composed of around a dozen groups and collectives of women with endometriosis – albeit with different degrees of institutionalization, visibility, human, technical, and economic resources. Among them are groups with greater constancy in their activities, such as Asociación Iberoamericana de Endometriosis para una Vida Plena and Endowarriors México; as well as other smaller Facebook-centered groups such as Unidas en la Endometriosis, Endometriosis Awareness México and Endometrosis Ilumínate de Corazón. Endometriosis México is, however, the oldest collective, it has the largest registered membership and following, the greatest constancy in activities and, importantly, it is a formally constituted civil association. In that sense, it is a reference association for endometriosis activism in Mexico.

In the following sections, I focus on my analysis of Endometriosis México and the resulting findings on ignorance production, ordering the results, as a first approach to the subject, around the first three categories in the taxonomy of ignorance proposed by Tuana (2006): (i) knowing that we do not know, but not caring to know; (ii) we do not even know that we do not know; (iii) they do not want us to know; (iv) they do not know and they do not want to know; (v) not knowing as a consequence of the construction of epistemically disadvantaged identities; and (vi) accepting what we cannot know.

5. “Knowing that we do not know, but not caring to know”: knowledge not linked to current interests

Frickel et al. (2009) argue that there is a systematic tendency in scientific knowledge production to be based on the cultural assumptions and material interests of privileged groups. Tuana (2006) emphasizes the role that gender plays in this configuration of interests by taking the example of male hormonal contraceptives. She ponders how it is possible that more than 40 years after the release of the first contraceptive pill for women, and the wide deployment of hormonal contraceptive products that followed, male contraceptive options are still reduced to condoms and vasectomy. She argues that pharmaceutical companies have deemed research and development in hormonal contraception for males to be unprofitable due to sexist and androcentric beliefs. She characterizes this as an ignorance of the type to know that we do not know, but not caring to know – the need to develop male hormonal contraceptives is known; however, this is not considered important in the context of the androcentric values that underlie the pharmaceutical companies’ economic interests.

In the case of endometriosis, this type of ignorance abounds, for example in terms of its calculated incidence. Real world endometriosis incidence remains highly uncertain: official international statistics suggest that 10% of women of reproductive age suffer from it (WHO 2021a). However, this is a 30-year-old figure produced with diagnostic techniques that are now known to be highly inefficient. Dr. Santiago, a member of the Association's Medical Council, explained:

Back in the nineties, when this incidence was calculated, ultrasound and magnetic resonance imaging were methods that did not have the quality and diagnostic capacity they now have. Technology is advancing, knowledge about the disease is advancing, and the number of specialists is increasing – although it is still insufficient. So imagine: thirty years ago that was our diagnostic power and with that we understood that 1 in 10 women had endometriosis. Now we know that there are many more. The problem is that we still do not know how many. (Face-to-face interview)

In Mexico, the international incidence is generally assumed to be 10%, equal to 13 million girls and women of reproductive age (Endometriosis México 2022). However, a study by the National Autonomous University of México (UNAM) and the National Institute of Perinatology (INPER) gives an incidence of 15% (Romero 2021); while some specialists such as Dr. Armando Menocal, member of the Association’s Medical Council and president of the Mexican Federation of Gynecologic Endoscopy Colleges and Associations, estimate around 20% (Montoya 2022).

The problem in estimating the true incidence of the disease lies, fundamentally, in the problem that exists in diagnosing it correctly. For most women with endometriosis the road to the correct diagnosis of the disease is a long one, full of cultural and institutional barriers, as well as multiple misdiagnoses:

You go to a general doctor, then to another general doctor. You see your gynecologist, he sends you to a gastroenterologist, then to an endocrinologist […] And so on, a pilgrimage of doctors [Prologue]. (Endometriosis México 2015, 11)

Based on the results of a survey of 150 women with endometriosis, the Association concluded that it takes on average nine years for a woman in Mexico to be correctly diagnosed, after five specialist consultations and three operations related to the disease (Endometriosis México 2013). Clearly, we know that we do not know how to diagnose the disease in a timely manner, but the question is: why don’t we care to know?

According to members of the Medical Council of the Association who were interviewed, the reasons for the diagnosis problem include the standardized implementation of a diagnosis based on a minimally invasive surgical procedure (laparoscopy), which in Mexico continues to be the spearhead method, and in spite of which “diagnostic overzealousness” is incurred (Pérez and Gérvas 1999);⁴ a lack of protocols and qualified specialists to generate a clinical diagnosis without resorting to laparoscopy;⁵ and a lack of qualified radiologists and of high technology equipment to detect cases of deep endometriosis by means of imaging studies.⁶

While the Association’s Medical Council centers the diagnosis problem on the lack of clinical protocols, training, and equipment, for Endometriosis México members the main problem involves two gender biases: the cultural normalization of pain imposed on women in the gynecological-obstetric field, and the high psychologization of the disease (Ballweg 1997), derived from the fact that it is women who suffer from it. These biases operate in the family, social, and medical spheres. Lupita Bustos, one of the first activists to expose endometriosis in Mexico and president of the Medical Council of the Association, comments on the family bias:

If your grandmother, your mother and most of the women in your family have had strong menstrual cramps, what follows is that if it hurts you they will tell you: “it is normal,” “being a woman hurts,” “it will go away when you get married and start your sex life,” “you are very sensitive to pain,” “don't exaggerate,” or “you are somatizing.” And then there’s the litany of advice ranging from “oregano tea” to “go to a psychologist.” (Virtual interview)

Claudia Lacorti comments that these gender biases have been operating historically in the medical field as well:

If you read the history of endometriosis, women who had menstrual cramps and couldn’t be diagnosed were called hysterical, crazy, or told they were possessed by the devil; they were sent to psychiatric wards, in straitjackets; they were subjected to leech ‘treatments,’ and many other horrible things. Why? Because no one believed that their pain was real. What is surprising is that in the 21st century they still do not believe us and continue to send us to the psychologist. (Face-to-face interview 1)

There is, then, a social and medical delegitimization of menstrual pain. Whelan (2007) comments that the scant social science and nursing literature on endometriosis documents that physicians often judge endometriosis patients’ accounts as hysterical or hypochondriacal versions of “normal” menstruation. Barker (2002) argues that when the lived experience of illness does not find objective confirmation, as in the case of pain, others – especially physicians – may doubt the experience, creating an “epistemological purgatory” that is shared by people with chronic illness, and especially women with persistent pain.

For Elizabeth Rosales, denormalizing menstrual pain requires both patients and physicians. She comments that the Association’s commitment is to spread the word so that all women and the general population know what endometriosis is; so that any woman, of any age and social condition, who presents disabling menstrual pain⁷ knows it is abnormal and seeks specialized medical attention. However, this effort needs to go hand in hand with that of institutional medicine:

We need doctors to know about endometriosis as well. If we fail as a civil association, patients will never reach gynecologists because they have normalized their pain; and if they fail as physicians and tell patients that their pain is normal or that it will go away when they get pregnant, our first efforts were useless. We are committed to not failing; we hope they are too. (Virtual interview)

Thus the members of Endometriosis México are not only identifying that there is a knowledge gap regarding the diagnosis and actual incidence of the disease, but they are going a step further: they are creating non-existent statistics for Mexico on endometriosis diagnosis delay (Endometriosis México 2013); they are also providing explanations complementary to medical ones, based on the testimonies of hundreds of women on the reasons for this delay: the cultural normalization of pain imposed on women and the high psychologization of the disease (Endometriosis México 2015). They are, in short, creating quantitative and qualitative knowledge about the ignorance surrounding their disease.

6. “We do not even know that we do not know”: how current interests or knowledges block other knowledges

The second type of ignorance, we do not even know that we do not know, happens when current interests, beliefs, and theories block the development of another knowledge. Tuana (2004 and 2006) uses the case of clitoral anatomy to suggest that the historical ignorance that exists about this organ is attributable to the reproductive bias that prevails in the study of female genitalia. This bias has blocked the development of other types of knowledge about the female sexual organs, their fluids, and processes, specifically those that refer to pleasure: the clitoris, ejaculation, and the prostate. Today, it is not even publicly and medically known that female ejaculation or the female prostate exist (Torres 2015), while the basic anatomical structure of the clitoris is barely known.

In the case of endometriosis there is also a reproductive bias that permeates the field of gynecological knowledge. Dr. Leopoldo, member of the Association’s Medical Council, described how gynecologists in Mexico do a four-year specialization: the first two dedicated to obstetrics (pregnancy treatment, childbirth, and puerperium); the third to gynecology (treatment of various gynecological diseases such as endometriosis); and the fourth to field clinic and dissertation writing (face-to-face interview). A recurring complaint from specialists is that training is mostly devoted to obstetrics, with the “broader” gynecological approach being relegated to the background:

In our training, at least in a large part of it, we are taught to see only pregnancy; if you are lucky, you will have seen endometriosis in one or two classes during the entire specialty. (Dr. Héctor, member of the Association’s Medical Council, face-to-face interview)

In the context of high specialty, according to Dr. Armando Menocal (2021), Mexico has 153 sites for specialty training in gynecology and obstetrics, and only 10 offer high specialty postgraduate courses in gynecologic endoscopy and formal training programs in laparoscopy and hysteroscopy⁸ that last only one year. Beyond these postgraduate programs, “presently, there is no hospital in the country that has training in endometriosis surgery per se,” Menocal comments.

This reproductive bias persists even in “broader” gynecological training. The gynecologist is educated to deal with the misnamed “female reproductive system” and its three “internal” organs: uterus, ovaries, and fallopian tubes. This reduces gynecology to the reproductive sphere, relegating a vast system of organs, ligaments, cavities, orifices, and fluids of the female genitalia, which have functions and affectations not necessarily linked to their reproductive dimensions. These functions and affectations can be associated, for example, with pleasure, as in the case of the clitoris, vaginal lips, breasts, and other glands and fluids (Tuana 2004), or with pain, as in the case of endometriosis. This is clearly perceived by the Association:

I feel that everything that has to do with pleasure and pain is not so important for gynecological issues, at least if it does not have to do with reproductive issues. And I believe that this is the part we must build as women. From the Association we have made progress on the issue of the denormalization of menstrual pain, but an issue that perhaps we still have pending is to start talking about the importance of relating in another way with our body and our pleasure. We do not know ourselves, and many times we do not accept ourselves. Perhaps because many of us grew up with the culture of “being a woman hurts,” and if being a woman hurts, then I don't like being a woman. (Claudia Lacorti, face-to-face interview 2)

Another fundamental problem is that endometriosis, because it is an endometrial-like tissue that responds to hormonal stimulation, has historically been relegated to the gynecological field. However, today we clearly know that it is a multiorgan and multisystemic disease (WHO 2021a). That is, it can affect any organ, system, nerve or ligament of the pelvic area, and even extra-pelvic areas,⁹ beyond the traditional gynecological field. Its diagnosis and treatment therefore require a comprehensive medical approach that goes beyond the knowledge and skills of the obstetrician-gynecologist and contrasts with the “compartmental” approach that characterizes the epistemological and practical foundations of scientific medicine:

I believe that medical education has divided the body into parts, and it is as if each doctor owns one of them. Gynecologists have been given the uterus, the ovaries, and the tubes. And if they touch the rectum, it belongs to someone else; and if that someone else has only studied colorectal surgery, he sees only the rectum, and if he touches the uterus, it is not his but someone else’s, and so on. (Vanessa, volunteer partner of the Association, face-to-face interview)

In this way, the reproductive bias has become a barrier to the knowledge of other parts of our body and other functions and affectations that occur beyond the triad of “internal” reproductive organs, or “the realm of the external, the accessory, the peripheral, the unnamable” (Torres 2015, 19). Dr. Karina, a first-level care general practitioner, referred to endometriosis as follows: “It is one of these so-called ‘rare’ diseases, which are those that affect very few people; I believe they do not reach 5% of the world's population. Its low incidence explains why there is no research on it” (face-to-face interview). However, endometriosis is not truly a “rare disease” because its incidence is much higher and its symptomatology and characteristics much more consistent than those of a rare disease (WHO 2021b).

The above testimony illustrates an unfortunate reality: most physicians do not even know that they do not know about endometriosis. This is true beyond first-level medical care, as in the case of Dr. Karina. At a second level of care, Dr. Ramiro Cabrera, a member of the Association’s Medical Council, referred to the poor surgical practice to treat endometriosis focused on the triad of reproductive organs:

[…] it is never just a complex ovarian cyst. It is not just an endometrioma; up to 85% of patients have more diseases that are not attended because the gynecologist does not even have an idea that there are more diseases; we are talking about peritoneal lesions, deep lesions, rectal nodules. (Cabrera 2021)

Thus, while specialists become increasingly expert in the reproductive dimension of the uterus, ovaries, and fallopian tubes, there is simultaneously an obscuring of the non-reproductive dimensions of these same organs and other parts of the pelvic area. In this section, I have illustrated the reproductive bias that exists in gynecological training as identified jointly by the members of the Association and its Medical Council. However, unsatisfied with this unveiling of ignorance, Association members have also made visible at least two crucial issues associated with this bias: medical training “by compartments,” and the consequent need for a more comprehensive medical approach to treat the disease; as well as the need to look at endometriosis through two contrasting lenses historically denied to women: the right not to feel pain and the right to feel pleasure.

Surprisingly, 40% of infertility cases are due to endometriosis (INPER 2022a). Because it is associated with the reproductive sphere, one might assume endometriosis would have greater public visibility and more funding for research and treatment, since it puts at stake the fundamental social value of reproduction. However, in Latin America, due to the financial and operational crisis of public health systems, issues such as infertility have been displaced from the public agenda of medical care and research because they are considered “luxuries’ (González-Santos 2020). The private sector has shown little interest in investigating the relationship between endometriosis and infertility, possibly because the driving force of the assisted reproduction market is, precisely, infertility. A different type of ignorance described in the previous section comes into play here: the knowledge that we do not know how to cure or treat endometriosis because it is convenient for those who monetize the disease through assisted reproduction. Preserving reproductive value is central but doing so in the most profitable way possible – through a greater number of in vitro fertilizations (IVF), for example – is better.

7. “They do not want us to know”: deliberately cultivating ignorance within specific groups

Feminist epistemologies of ignorance also invite reflection on knowledge that is considered dangerous, and to identify the kind of people who, by holding such knowledge, become dangerous also, as well as to examine the institutional structures that often turn these dangerous people into “ignorant” ones. This type of ignorance considers cases in which certain types of knowledge or technologies are clearly known but are kept secret through strategies put in place to keep specific groups ignorant. This is the classic type of ignorance in agnotological analysis. To illustrate this, Tuana (2006) takes the case of the side effects of the contraceptive pill that many women denounced in the 1970s, ten years after its commercialization and distribution in the USA had been approved. She argues that the medical establishment and pharmaceutical companies were perfectly aware of the dangers of the estrogen-based contraceptive pill but that, by concealing them, they were deliberately cultivating public ignorance to protect profit margins.

In the case of endometriosis, this type of ignorance operates through pharmaceutical companies’ promotion of oral hormonal treatments as a cure for the disease. Endometriosis is a disease that currently has no cure, but it is treated and managed surgically and clinically. Surgical treatment can remove cysts, adhesions, and other endometrial tissue found in organs, ligaments, nerves, or walls of the pelvic cavity. However, its success depends on many factors since lesions can recur even after successful removal. Clinical management consists of (anti)hormonal, anti-inflammatory, and analgesic drugs. In general, pharmacological (anti)hormonal treatment is indicated to reduce the concentration of estrogen or to increase that of progesterone to alter the hormonal environments that favor endometriosis. Anti-inflammatory and analgesic treatment is indicated to control the inflammatory process and the pain inherent to the disease.

The first World Consensus on Endometriosis (Johnson and Hummelshoj 2013) dictates a high quality, comprehensive treatment for the disease, consisting of surgical, hormonal, analgesic, physiotherapeutic, and psychological management, alongside lifestyle changes (anti-inflammatory diet, limiting alcohol intake and cigarette consumption, etc.). Despite this, and according to Association volunteer partner Marisol Serrano,

Medical laboratories try to sell hormonal treatment as the cure for endometriosis, because at an economic level they obtain millions of pesos from the sale of hormonal [medications]. And if there is one thing we have wanted to communicate from the Association, it is that no hormonal treatment cures endometriosis. (Face-to-face interview)

Elizabeth Rosales recalls that shortly before Endometriosis México became a civil association, she received an email from one of the largest international laboratories inviting the Association to participate in a focus group that the Laboratory would conduct as part of a market study for the introduction of a new hormonal drug for endometriosis in Mexico. The Association agreed to participate in the study and, after that first contact, the Laboratory proposed that Elizabeth cede the Endometriosis México website rights to the Laboratory. The argument was that “they” had the drug that cured endometriosis, the Association had the patients who needed that drug and “what better than to make that match!” Elizabeth recalls:

I told them that it was not like that, and that was precisely why we had formed a civil association, because there is still no cure for endometriosis; and although there are several medications on the market, none of them cure it. I would never go and tell a patient “this medicine has taken away my endometriosis,” because that is not true. It is totally dishonest and the idea behind the Association is precisely to combat all the misinformation. (Face-to-face interview)

The hormonal drug finally arrived in the Mexican market in 2014 and was promoted as “the drug that cures endometriosis.” However, like all hormonal drugs, it is only capable of controlling its symptoms, but not without a series of side effects that are not widely known. About them, Vanessa reports:

I was induced into menopause when I was in my early twenties – all my twenties were spent in menopause! It was horrible: sweating, very strong mood swings, tiredness all the time, hair loss – I would come out of the bath with strands of hair in my hand, sometimes lack of orientation and memory loss. I felt like I was going crazy … and maybe I did go crazy in those years. (Face-to-face interview)

Dr. Ramiro Cabrera expands on this panorama by pointing out that the withholding or misrepresentation of information by laboratories for profits has been cultivated for a long time and, therefore, there is an urgent need to standardize medical treatment:

I perfectly remember, years ago, medical representatives coming to my father’s office with Visanette or some other type of medication, such as GnRH analogs, and telling him “This cures endometriosis.” The sad thing is that this is still going on and many doctors still believe it. Nowadays many of these drugs are of delicate use. They are used in very specific cases, because of the irreversible side effects they can have. (Cabrera 2022)

In this way, pharmaceutical companies have been deliberately cultivating ignorance by obscuring the therapeutic – and not curative – scope of their drugs as well as their side effects. Seaman (2003) correctly states that the pharmaceutical industry’s medical policy on the use of hormones in women has been “shoot first and apologize later.” This is akin to experimenting on people who have not given their consent to participate, in this case on women's bodies.

We see here how the members of the Association, together with the members of its Medical Council, have clearly identified the ignorance that certain pharmaceutical companies have tried to cultivate – overtly or covertly – about the scope and side effects of their medications. The members of the Association, moreover, have tried to document related symptoms through the constant conversation they engage in, mainly in WhatsApp groups, about the side effects of the various hormonal drugs. This has resulted in a sort of “epistemological paradise” – as opposed to the “epistemological purgatory” of which Barker (2002) speaks – in which they find referents and resonances that strengthen the credibility of their symptoms. This has also led them to develop alternatives of resistance to traditional hormonal drugs, among which the food route stands out. In this regard, Lupita Bustos comments: “We have been discovering that a radical change in diet has achieved the same or more than many hormonal treatments” (virtual interview).

8. Final reflections

When I chose to study the case of Endometriosis México as a form of public participation associated with the democratic discourse of citizen science, I imagined that I would find in it forms of (co)production of expert and lay knowledge about endometriosis similar to those I had read in Irwin (1995), Epstein (1996), and Callon’s (1999) classic works, expressed, for example, through the active participation of patients in the collection of biological samples, in the monitoring of the clinical evolution of the disease, and in therapeutic trials and the evaluation of their results. These preconceptions kept me thinking that I had not chosen a “good case,” or that perhaps in countries like Mexico, for different reasons, the objectives of movements and activism in the area of health were reduced to a struggle for the dissemination of and access to established medical knowledge. I thought that their incidence was, therefore, more geared towards the public policy sphere of dissemination and access, rather than in the epistemological sphere of knowledge (co)production.

In contrast, feminist epistemologies of ignorance allowed me to conceptualize the participation of health movements and activisms in terms of the construction of an inverse knowledge, that is, knowledge about the ignorance surrounding certain parts, functions, and affectations of the body. Through this perspective, it was possible to make sense of the type of discourses that appeared in the interviews, public statements, bibliographic collaborations, and content in the Association’s networks. This is a discourse in which questions abounded, such as why there is no research on the disease, why it takes so long to diagnose us, why it involves so many operations, why no cure has been found for the disease, amidst sharp reflections on the biases, practices, and actors behind these questions.

This implied recognizing that the problematization generated by the production of ignorance can eventually be transformed into scientific knowledge of a social order. Of course, there is a fundamental distance between patients’ dissatisfaction with the lack of information, misdiagnosis and poor treatment, and the unveiling and reflection on the fact that these deficiencies are not fortuitous but are actively produced through practices linked to gender biases. The work of the Association is clearly located in the second plane, in which we can find the contribution of a citizen science based on an epistemology of ignorance. In the end, the co(production) of lay and expert knowledge that I expected to find happened, but around the ignorance surrounding the disease and only indirectly around endometriosis. Thus, the members of the Association and the members of its Medical Council locate themselves around complementary – and not opposing – discourses, which accounts for the creation of a “hybrid forum” (Callon, Lascoumes, and Barthe 2009) in which expert and lay knowledge are co-produced around ignorance.

My conclusion from these four years of work in the case is that it is necessary to bring new theoretical lenses to the literature on public participation that allow us to see forms of participation that, although “marginal” in the literature, are often inherent to social movements of resistance, and especially those that develop in the field of women’s bodies and health. This would allow us, first, to strengthen theory on public participation by accounting not only for how one participates in the production of knowledge in a traditional sense, but also how one participates in the unveiling and study of the production of ignorance. Second, it would also allow us to take advantage of available experiences of public participation, revaluing forms of knowledge that are generated from resistance and within the framework of alternative social projects.

Table 1. Interviews cited in order of appearance in the text.

Name	Source	Date and place
Dr. Rodolfo (pseudonym)	Medical Council, Endometriosis México	Face-to-face: Monterrey, Nuevo León October 29, 2018
Claudia Lacorti(real name)	Coordinator/spokesperson for Endometriosis México in Mexico City	Face-to-face 1: Mexico City, September 13, 2018 Face-to-face 2: Mexico City, October 3, 2018
Elizabeth Rosales(real name)	Founder and current president of Endometriosis México	Virtual: September 21, 2018 Face-to-face: Monterrey, Nuevo León October 29, 2018
Dr. Santiago(pseudonym)	Medical Council, Endometriosis México	Face-to-face: Morelia, Michoacán February 19, 2022
Lupita Bustos(real name)	President of the Endometriosis México Medical Council	Virtual: February 8, 2019
Dr. Leopoldo(pseudonym)	Medical Council, Endometriosis México	Face-to-face: Torreón, Coahuila October 27, 2018
Dr. Hector(pseudonym)	Medical Council, Endometriosis México	Face-to-face: Mexico City November 28, 2018
Vanessa(pseudonym)	Volunteer partner of Endometriosis México in QGeneral Practitioner of the Mexican Social Security Institute (IMSS)	Face-to-face: Mexico City April 4, 2018
Marisol Serrano(real name)	Volunteer partner of Endometriosis México in Mexico City	Face-to-face: Mexico City August 13, 2018

Acknowledgments

I thank the women members of Endometriosis México for their encouragement of this research; Arturo Vallejo and the anonymous reviewers for their sharp and generous comments; and Luis Reyes-Galindo for his wonderful work in reviewing and editing, as well as for his support in translating the text.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by the Nacional Council of Science and Technology of Mexico (Conacyt-México).

Notes on contributors

Julieta Piña-Romero

Julieta Piña-Romero (PhD Candidate in Philosophy of Science, UNAM) is a Professor of Science and Technology Studies at the National School of Higher Education, Campus Morelia (ENES – Unidad Morelia, UNAM). She was an Editor-in-Chief of C+TEC, the science communication journal of the Science and Technology Council of Michoacán, México. Her research focuses on science and public participation, particularly in the context of health activisms.

Notes

1 That is, they occur in parallel to endometriosis, but are not caused by endometriosis, nor do they cause endometriosis. Some of them are chronic fatigue syndrome; gastrointestinal problems such as irritable bowel syndrome; and autoimmune problems such as hypothyroidism, arthritis, diabetes, fibromyalgia, among others (Dr. Rodolfo, member of the Medical Council of the Association, face-to-face interview).

2 Field work was resumed in this period due to the rise in activities experienced by the Association after the COVID-19 pandemic.

3 In most cases, I use the real names of those women from the Association who, after having read this manuscript, gave me their explicit authorization to do so, indeed through their own expressed interest in having their real names appear in the results; that is, as a minimal form of recognition and retribution. The names of the physicians were anonymized, except when I used publicly available sources. To make it easier to follow the testimonies, at the end of the article I attach a table of the interviews cited and the dates when they took place (see Table 1).

4 Defined as a series of unnecessary but consensual medical procedures among specialists, for which there is no unappealable scientific basis and there is always an alternative; in the case of endometriosis diagnosis by laparoscopy the alternative is clinical diagnosis, which has proven to be quite efficient when proper protocols are followed.

5 From the perspective of the Association’s Medical Council, the so-called 6 Ds of diagnosis, referred to in the introduction of the paper, provide a relatively solid basis for suspecting the disease and, in that sense, a good benchmark for diagnosing it.

6 According to Dr. Rodolfo (face-to-face interview), there are two types of endometriosis: deep or multiorgan/multisystemic, which infiltrates organs and systems; and superficial, which is when it is at the peritoneal level or is very small. The first can only be diagnosed by imaging methods, such as specialized ultrasound and magnetic resonance imaging; the second can only be diagnosed by surgical methods (ideally, minimally invasive surgery such as laparoscopy; although, generally, this type of endometriosis ends up being diagnosed by laparotomy, that is, by open surgery that derives from erroneous diagnoses such as appendicitis, gallbladder problems, etc.).

7 Members of Endometriosis México and members of its Medical Council defined “disabling menstrual pain” in interview as “pain that prevents you from performing any of your daily activities.”

8 Gynecologic endoscopy is a relatively recent type of specialty in medicine – also known as “minimally invasive surgery” – that deals with the diagnosis and treatment of various gynecologic pathologies, including endometriosis. It consists of the introduction of an optical system (endoscope) through the vagina (hysteroscopy) or through small incisions in the abdomen (laparoscopy).

9 The presence of endometrial tissue outside the pelvic area, in places such as the lungs, diaphragm, and brain, has been reported; these cases, however, are considered uncommon (INPER 2022b).