In honour of endometriosis awareness month, our visiting researcher Vanessa Mantilla Salazar from Autonomous University of Barcelona has written a piece for us based on her doctoral research on ‘therapeutic itineraries’ of women with the condition.
In much of the Western context, pain and discomfort in the menstrual cycle has been “normalized”, which has led to the invisibility of several gynaecological diseases linked to this process. This is the case of endometriosis, a disease related to the menstrual cycle that affects women of reproductive age, from any social or ethnic group.
From the medical perspective, it consists of the growth of endometrial tissue outside the uterus and usually manifests with symptoms such as severe pain during menstruation, pain during sexual intercourse, as well as infertility, physiological dysfunction, and a significant reduction in quality of life (Guidone, 2020; Carmona, 2021). In addition, there is the challenge of diagnostic delay, which is estimated to take between seven and ten years from the onset of symptoms to the final diagnosis (Carmona, 2010).
Although there are no exact data, it seems to have a high prevalence as it is estimated that in Spain 10% of women suffer from it, which means that there may be around two million people affected (Carmona, 2021). Within the Catalan territory we therefore might estimate that of about two million women of reproductive age, about 200,000 women would suffer from the disease.
As a result of this context, in Spain the last ten years have seen the development of different endometriosis guidelines for the management of endometriosis by public health institutions to improve the effectiveness of treatment and approach to this condition.
The management of endometriosis in Catalonia: a brief overview
Spain’s healthcare organization includes the National Health System as an entity that encompasses the state’s healthcare services and benefits. However, in accordance with the principle of state decentralization, healthcare services are the responsibility of each autonomous region. In this sense, Catalonia has the Catalan Health Service (CatSalut), created in 1991, as a public body and the purchasing agent of health services in the region, organized based on several principles, among which we would highlight the value of universal care.
Thus, CatSalut is organized through health regions that are delimited based on geographical, socioeconomic or demographic criteria, which in turn are formed by a set of territorial units where access is provided to the population through primary care centres. Within this organizational landscape of healthcare resources, and as far as today’s topic is concerned, at national level, in 2013 the first professional guideline for endometriosis in Spain was published, the Guide for the Care of Women with Endometriosis in the National Health System. In this guideline, clinical protocols are established and some improvements to be made within the NHS are proposed. It also seeks to correct possible biases in health care and research from a gender perspective (Aranguez-Sánchez, 2018).
In Catalonia, meanwhile, in 2018 the Model of Care for Endometriosis in Catalonia was published, developed by the Departament de Health of the Catalan government, with the aim of making this disease more visible to allow a faster diagnosis, avoiding more complex situations, and addressing it in a comprehensive manner, whilst considering the different levels of care within the health care network of Catalonia. However, associations such as Endo&Cat (the association of endometriosis patients in Catalonia), express concern that guidelines are not always followed in practice or that the professionals, despite having the will and the effort, often do not have the necessary resources to provide diagnosis.
Despite the establishment of these guidelines, another problem encountered by women with the disease is the lack of referral units in public hospitals in Spain. These referral units, as defined in the established guidelines, should have a multidisciplinary team specialized in the care of highly complex endometriosis, but only 3 of the 17 autonomous communities in Spain have these services. In the case of Catalonia, there are only two such units located in the city of Barcelona. This means that many women, in search of a diagnosis and/or a response to menstrual discomfort that may correspond to the disease, in addition to the waiting lists lengthened by the Covid-19, must make long journeys from neighbouring towns to the city of Barcelona, which involves an investment of time and money, bringing with it important repercussions in the experiences of individuals.
A lot of women, in effect, have gone through serious psychological, social and health problems and challenges with accessing appropriate care. Therefore, there is significant need for an anthropological exploration that can analyse, in depth, the Catalan social context to understand in more detail how endometriosis is a public health issue rather than simply an individual problem.
Helping to understand the experience of endometriosis in Catalonia
In this sense, my anthropological doctoral thesis being carried out at the AFIN research group of the Autonomous University of Barcelona, through a qualitative approach, aims to analyse the paths (or what I call “therapeutic itineraries”) that women with endometriosis, or with suspected diagnosis, conduct to get medical treatment. In this regard, it considers some strategies women use to shorten the time of diagnosis by going to specialists in the private sphere, as some of the ethnographic findings to date show:
“I had managed to go to the gynaecologist. I went twice because I went once and insisted to see if that way, I would get them to look at me and no…. Then my mother told me ‘Well, look, pay a private gynaecologist to see if someone will look at what is wrong with you’. This is the one who finds my endometriosis and explains to me that I can go through the public system, I can pay a private mutual insurance company, or I can pay for a private surgery. […]. In the end, I wait… but the pains are so intense, so I start to go through the private mutual insurance company, and I have the surgery through the private insurance company. I have to say that a surgery with quite a lot of medical negligence.” (Carla, 33)
Therefore, in my study I will explore these questions in the Catalonian context for the first time from an anthropological point of view. I consider that the importance of exploring women’s accounts in an in-depth way will help to create new understandings about how the infrastructure of care in Spain, and in Catalonia specifically, impacts on women’s search for medical treatment.
By Vanessa Mantilla Salazar
Vanessa Mantilla Salazar is the recipient of a four-year scholarship from the Spanish state, the “FPU”, that supports the training of future university faculty. Her doctoral research concerns the therapeutic itineraries of women with endometriosis (or with similar/related symptoms), with a particular focus on the different social, biomedical, and political discourses that allow for the construction of the diagnoses. She holds a degree in Nursing (BA), as well as in Cultural and Social Anthropology (BA and MA).
Aranghez- Sánchez, T. (2018). ¿Por qué la endometriosis concierne al feminismo?. Madrid: Dykinson.
Carmona, F. (2021). Endometriosis: La guía para entender qué es y cómo cuidarte. Barcelona: Grijalbo Ilustrados.
Endometriosis UK. (2020). Endometriosis facts and figures. Retrieve from: https://www.endometriosis-uk.org/endometriosis-facts-and-figure
Guidone, H. C. (2020). The Womb Wanders Not: Enhancing Endometriosis Education in a Culture of Menstrual Misinformation. In C. Bobel et al. (Eds). The Palgrave Handbook of Critical Menstruation Studies (pp. 269-286). Singapore: Palgrave Macmillan.
Health Department. (2018). Model of care for endometriosis in Catalonia [Model d’atenció a l’endometriosi a Catalunya]. Barcelona: Departament General de Planificació de Salut.
Spanish Ministry of Health. (2013). Guide for the attention of women with endometriosis in the national health system [Guía de atención a las mujeres con endometriosis en el Sistema Nacional de Salud]. Madrid: Ministry of Health, Social Services and Equality Publications Center.