‘It’s like a knife is plunged into me’: how good care is done for chronically painful vulvas

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‘It’s like a knife is plunged into me’: how good care is done for

chronically painful vulvas

Maya Lane

Student Number: 12567515

Supervisor: Dr. Rebeca Ibáñez Martín Second reader: Prof. Jeannette Pols

MSc Medical Anthropology and Sociology University of Amsterdam

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Abstract

Vulvodynia is a chronic vulval pain condition with no singular identified cause or treatment. It primarily effects sexual relations, particularly penetrative sex, but can also have other far reaching implications for everyday life. As yet, it has no cure, and treatments are often a trial and error approach, with many living and managing the condition for years. This thesis investigates how those with vulvodynia live and care for themselves and others, asking how is good care done? Through a focus on practices, I explore the ways in that those with vulvodynia are active in ‘doing’ their care, underpinned by the political aim of elevating the oft-silenced and gendered practices of care. I use a material semiotics lens, informed by Science and Technology Studies, that attends to the multiple ways that good care is shaped by people, knowledges, technologies and processes, therefore moving away from the ‘ideal’ of care and nuancing the conversation on how good care is done. Through a focus on

multiplicities, I can explore the numerous ‘goods’ that arise within any one care practice, as well as discussing the normativities that inform such practices. Chapter one frames good care as work, exploring the planning and preparation that go into caring for vulvodynia, as well as how particular relationships inform workload of care. Chapter two looks at particular

practices of ‘processing’ care, referring to the active management of the self through care in order to come to terms with vulvodynia pain. Chapter three takes the Dutch conception of vulvodynia as pelvic floor tension and focuses on how relaxing care are done, informed by different conceptions of ‘relaxing’.

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Plagiarism declaration

I hereby declare that this thesis meets the rules and regulations for fraud and plagiarism as set out by the Examination Committee of the MSc Cultural and Social Anthropology at the University of Amsterdam. This thesis is entirely my own original work, and all sources have been properly acknowledged.

Maya Lane

17/07/2020

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Acknowledgements

My biggest thanks go to all the people who chose to speak with me about their vulval pain, and the medical professionals who took time out of their busy schedules to be interviewed. I know how emotionally taxing and upsetting it can be to talk about vulvodynia, and how it may have been a

disappointment to find out I was a medical anthropologist and not a medical professional! As a result, I am very grateful to those who agreed to delve into their pain with me. Doing this research has only made me more in awe of those living with chronic vulval pain and the numerous inventive and creative ways in which they care for themselves. I hope that this thesis is a small step towards acknowledging the care that is done, and that further projects are carried out that look into making life for those with vulvodynia better.

I would like to thank those who supported and guided me through the process of doing the fieldwork and writing this thesis. Annemarie Mol for the original inspiration of writing about care. Bregje de Kok, for giving such engaging and well-planned classes on how to conduct fieldwork, as well as meeting with me numerous times and listening to all my ideas. Patrick Brown for supporting me in understanding theory, and supplying me so judiciously with articles when I asked. My biggest thanks go to my supervisor, Rebeca Ibáñez Martín, who has gently guided, challenged and cared for me during this process. Reading the description of her work on wastewater prior to the potential fieldwork presentations, I immediately knew I wanted to work with her. She was supportive whenever I needed her, checking in regularly during quarantine, even as I know she was juggling her own caring and academic work. I learn something new every time I speak with her, and she has supported me so much as I took my first steps into the Science and Technology Studies way of working.

Finally, I have so much appreciation for my family and friends during the ups and downs of writing my thesis. My particular thanks go to my parents, who had to deal with their adult daughter living again at their house during quarantine, changing their routines and demanding care, attention and celery. Without your patience, love and support I would never have been able to do this. To Sia, sorry for crying so much on the sofa, and thank you for being a steadfast, calm, loving and supportive partner. To my best friends in London, thanks for meeting up with me on our one permitted daily walk, for providing a sounding board to my ideas and just generally being on hand when I was struggling. To all my anthropology friends and my AMS family, thank you for providing intellectually stimulating conversation as well as fun times, dinners and mini-breaks. I’m sad our time together got cut short by Covid-19.

Lastly, I would like to thank all the carers and medical professionals working hard to care during the Covid-19 pandemic.

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Introduction

It’s 2017 and I am at the physiotherapist’s office, lying on the examination table naked from the waist down. I am calming myself with slow, deep breaths. The physiotherapist has her finger in my vagina, and she is pressing on various spots. “How much does this hurt?” she asks me. Through gritted teeth, I answer “a lot, maybe an 8”. I have a burning, searing, ripping pain in my vagina. She probes a bit more, before removing her hand. “Ok, it’s clear,

you have vulvodynia.” It’s the first time I’ve heard this word in the eight years I’ve spent

searching for a diagnosis and treatments that could help. “It’s a chronic condition

unfortunately, but there are some things you can do to help the pain” she tells me, taking off

her gloves. I wait until I have left the clinic and burst into tears. For weeks after I am in a state of relief, finally having a name for my pain, and despair-it’s supposedly incurable. I throw myself into researching how to help myself.

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Fast forward to 2019 and I find out I have got into the master’s in Medical Anthropology at the University of Amsterdam. I am happy, but I am also in the middle of a terrible pain flare. I am currently undergoing psychosexual therapy, taking medication, massaging my vulva daily, eating an anti-inflammatory diet, avoiding cycling and sex, moisturising and getting acupuncture. I am an avid user of vulvodynia forums. I am interested in these online communities, and idly wonder whether I will focus on vulvodynia in my masters.

*****

It’s January 2020 and I am a third of the way through my masters. Whilst I have decided that I will research vulvodynia, I still haven’t decided my focus; do I want to add to the discussion of gender in chronic vulval pain? Do I want to try and define vulvodynia as either a chronic pain condition or a female sexual dysfunction, a gap identified in my literature review? Not really- I have a sense of unease contemplating these foci. They don’t fit with my personal experience and those of the people I have met online; yes, our lives are greatly impacted by vulvodynia, but we are not necessarily defined by it. We work around pain flares, and invent creative solutions for symptoms, taking advice from different people and situations, active in

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our pain management. I am sitting in the ‘materialities in practice’ winter school at my university. Annemarie Mol is talking about care practices and the doing of care. I learn that there is not a singular static entity of vulvodynia that can be ‘known’ but rather multiple vulvodynias which are enacted, meaning constantly constituted in practice (Driessen, 2019:9). Mol talks about the endless process of care, and its ‘messiness’. She introduces me to the concept of ‘tinkering’ in care- of constantly trying to find the best way to live with illness. This resonates with me. I learn to focus on how care practices are always situated within specific webs of relations, actors and technologies. Finally, I learn that there is not one conception of ‘good care’, but rather multiple goods that are highly contextual and enacted in practice. With this in mind, and the desire to position those with vulvodynia and those that treat it as active ‘doers’ of care, I set out to carefully tease apart “what is good vulvodynia care?”

“It’s like burning, literally burning, as if you were dragged behind a car on the highway with

your naked bum, like that. Or a parmesan cheese grater on it. It’s excruciating.”

(Tina, interview extract)

The above quote from my fieldwork viscerally describes vulvodynia, a chronic vulvar pain condition that can have severe mental and physical repercussions. Vulvodynia was first recognised as a diagnosis in 1983, however it is being increasingly reported in clinic (Masheb et al, 2000). The diagnosis ‘vulvodynia’ means chronic discomfort and pain in the vulvar area that lasts longer than 6 months and, in many cases, years (Harlow and Stewart, 2003). There are various subtypes of vulvodynia- occurring spontaneously or provoked by certain

activities, and many pain manifestations, caused by yeast infections, neurological causes, autoimmune issues and allergies (Masheb et al, 2000:6; McKay, 1998; Thomason, 2006). Therefore, vulvodynia can be seen as a ‘blanket term’ that encompasses many diverse manifestations of vulval pain. Vulvodynia has a huge effect on those living with it, and typically affects both mundane activities such as cycling, sitting and walking, as well as penetrative sex (Masheb et al, 2000:3). There is an increased incidence in mental health conditions and decreased sexual satisfaction, with many sufferers experiencing feelings of shame and guilt related to their bodies (Santerre-Baillargeon et al, 2018), as well as negative

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impacts on their intimate and sexual relationships (Santerre-Baillargeon et al, 2018, Farell and Cacchioni, 2012).

Vulvodynia is an under-researched condition, and the little ethnographic data that exists is limited to heterosexual women in the USA and the UK (Blair et al, 2015). It is difficult to define, and this confusion around the aetiology of vulvodynia, as well the lack of

management guidelines, mean that vulvodynia is defined by some as a chronic pain

condition, and by others as a female sexual dysfunction (FSD), categorisations which affect the treatments advocated, as well as influencing which doctors are called upon as the

‘experts’ in treating it (Shallcross et al, 2013; Masheb et al, 2000). Such separate definitions were not important in the lives of those I interviewed. Vulvodynia is neither only a chronic pain condition nor only an FSD, rather, these classifications are constituting and intersecting. What is relevant is how to live with vulvodynia, what to do when you have a pain flare, how to manage despite the pain. The existing literature, in attempting to define vulvodynia, has tended to separate chronic pain from FSD at the expense of detailed analysis into dealing with vulvodynia in daily life.

Jeannette Pols writes that when illness chronifies, care practices that help make life bearable become crucial (2012). Vulvodynia is chronic and has a grim outlook. There is no identified cure, and patients are told they have to learn to manage. Such semantics can shape the experience of those with vulvodynia, informing their world as is and as it will be (Driessen, 2019:7), meaning vulvodynia can feel hopeless. However, vulvodynia still has to be lived with. Resonating with Pols, there are calls within the medical community for further research into life post diagnosis, looking at how to live with and manage vulvodynia (Shallcross et al, 2016).

This research looks at how good care for vulvodynia is done in a variety of settings, including self-care at home, and in the biomedical encounter. By taking the material semiotics lens as used in Science and Technology Studies (STS) that vulvodynia is not a stable condition, but rather constituted within relations, I tease out the messy complexities of good care practices and draw attention to the specificities of care. As a chronic condition, the aim of vulvodynia care practices is to make life as enjoyable as possible with such pain (Mol, 2008:4).

Conducting fieldwork in the Netherlands, interviewing people with vulvodynia and professionals that treat it, I focus on practices of care, and in doing so, subvert the idea of

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care being done to or for someone. Instead, care is active, situated within an ever-changing web of interdependent relations, materialities and situations. It requires skill and knowledge and has not received the attention it deserves. This study moves away from attempting to define vulvodynia and instead highlights the multiple approaches to doing ‘good care’, paying attention to the tensions present in what is considered ‘good’. In tracing these particular material-semiotic webs of care practices I elevate the oft-silenced and gendered work of caring and visibilise these undervalued practices. The stories I present here build on the tradition of putting into words the “irreducible specificities of care” (Turrini, 2011:73) and nuance the conversation about what is ‘good care’ for vulvodynia.

Outline

Chapter one briefly introduces vulvodynia in medical and social sciences literature, as well

as describing the STS frame of care I use. I touch on my positionality as an ethnographer with vulvodynia, as well as describing my research methodologies.

Chapter two discusses the work of doing ‘good care’, a concept which underlies all the care

practices discussed in this thesis. I draw on the feminist tradition of moving away from romanticised ideals of care to describe the daily slog of care practices including planning and preparatory care practices, and the concept of ‘sex work’ for care.

Chapter three looks at ‘processing care’ practices and the various ways that those with

vulvodynia come to terms with their vulvodynia, transforming their understanding and in turn, the self.

Chapter four focuses on active ‘relaxing care’ practices, demonstrating how muscle tension is

‘known’ through various technologies, measurements and dilation. I finally discuss how different expectations of good care clash through ‘relaxing care’ practices in the clinic and at home, showing how good intentions don’t necessarily equal good care.

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Chapter 1- Vulvodynia in context

This chapter discusses how both medical texts and social science texts have approached vulvodynia, before elaborating on the theoretical approach I will be using to frame this research.

Various ‘vulvodynias’: FSD or chronic pain

Medical professionals know that vulvodynia is “likely the result of a multifactorial process” (Bornstein et al, 2019:1680), and therefore treatment needs to be varied. However, defining what vulvodynia actually is is another issue. In 2019, medical professionals wrote to the World Health Organisation (WHO) to ask that vulvodynia be included in the International Classifications of Diseases, as it fulfils the conditions of a chronic pain condition (ibid). However, at the same time, vulvodynia is also classed as a Female Sexual Dysfunction (FSD) and sometimes diagnosed as a ‘genito-pelvic pain disorder’ as defined by the Diagnostic and Statistical Manual of Mental Disorders (DSM) (Viera-Baptista and Lima-Silva, 2016). As such, literature exists that relates to both these definitions.

Vulvodynia as Chronic Pain

Chronic pain is considered a “...particularly rich subject for anthropology…” (Good et al, 1992:169); as it presents an “epistemic puzzle” for biomedical practitioners due its ‘invisibility’ and lack of neuro-biological markers, as well as “run(ning) counter to

objectivity sought by modern medicine…”(Gotlib, 2012:51). Vulvodynia sufferers follow a similar illness trajectory and people who have it share experiences with those with other chronic pain conditions, including the loss of identity, (Kaler, 2006), lack of language to discuss pain (Scarry, 1985; Labuski, 2013) and loss of certainty and security (Good et al, 1992:202). The cause of chronic pain cannot be located in either the body or the mind; they are integrated and mutually constituting (Honkasalo, 2000:198), thus chronic pain challenges the mind-body dualism prominent in biomedicine. Chronic pain has a profound effect on sense of self and identity, disrupting the “taken for granted world of everyday life” situated in

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and perceived through the body (Good et al, 1994:103), and those with vulvodynia often question their bodies (Kaler, 2006:53). Given the invisibility of vulvodynia pain, sufferers are often told that their pain is psychosomatic, meaning many experience feelings of doubt and trust in their embodied experience (Plante and Kamm, 2008). Additionally, those with chronic pain conditions experience perceived gendered stereotyping as doctors see a

‘hysterical’ exaggeration of pain for female presenting patients (Nguyen et al,2013). Clinical research on vulvodynia concludes that it is essential to diagnose vulvodynia as a chronic pain condition to understand its multi-dimensional nature, psychosocial and economic

repercussions (Masheb et al 2000; Nunns , 2015)

Vulvodynia as Female Sexual Dysfunction (FSD)

As mentioned earlier, when vulvodynia is defined as an FSD it is recognised in the DSM as symptomatic of a mental disorder or dysfunction. Medical literature defining vulvodynia as an FSD focuses on the inability to engage in pain-free penetrative sex, and how that affects mental health. It is sometimes suggested the vulvodynia is caused by sexual trauma (Plante and Kamm, 2008), or from repressed emotions manifesting as vulval pain (Ventegodt et al, 2006). As such, treatments can involve exposure therapy, psychotherapy and couples’ therapy.

However, social scientists that investigate vulvodynia as FSD often utilise a feminist perspective that investigates the ‘deviant’ female body in relation to sexual practices. Vulvodynia as FSD draws attention to the exclusion of people from notions of womanhood on the basis of (non)-doing of specific sexual practices, demonstrating that female bodies that are not penetrable are experienced as ‘deviant’, both by vulvodynia sufferers and their

partners (Labuski, 2013, Kaler, 2006). Vulvodynia is considered a useful lens to theorise the interplay of gender and sexual identities, as it complicates women’s ability to engage in penetrative sex -the “paradigmatic heterosexual act” (Kaler, 2006:51), although such a lens excludes non-heterosexuals and minority gender identities.

Instead of being symptomatic of a mental disorder, Labuski argues that vulvodynia can interrogate how phallocentricism is negotiated within heterosexual relationships (2013:252),

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whereas Wallace says that vulvodynia challenges a universal categorisation of sex as penile-vaginal, and through diagnosis, the pain becomes a ‘sexual problem’ (2007:18-19). Through these feminist perspectives, the wider discourse on female bodies is investigated. Vulvar pain draws attention to the ‘absent vulva’, the vulva typically being ignored in medical and

popular discourse due to ideas on the female body as dirty, ‘leaky’ and associated with shame (Sanabria, 2011). Labuski terms this societal ‘vulvar dis-ease’ (2013:254), silencing people from talking about female genitalia. The presence of vulvar pain in this context therefore serves as a catalyst for people to start engaging with the vulva (Danylevich, 2017). However, vulvodynia as FSD focuses solely on painful intercourse, and ignores the distressing effects of the condition on other facets of everyday life.

This thesis does not attempt to define vulvodynia or treat it, but rather considers the everyday experiencing of living with and managing vulvodynia.

Theoretical Inspirations

Situating Care in STS

Care is essential to maintain daily life and is found in the most mundane of practices that are nevertheless crucial: cooking, washing, sleeping, caring for children and relatives, shopping. However, care has not had the attention that it deserves in scholarship (Mol et al, 2010:7). Although essential for the reproduction of life, care has long been seen as non-productive, and thus undervalued work (Puig de la Bellacasa, 2012; Martin et al 2015; Graham, 1983). This devaluation is amplified by the fact that care is a gendered, classed and racialised practice, often performed by women, those from lower classes and people of colour- care comes ‘from below’ (Harding, 2008). Such intersectionalities have meant that care has been a prime subject for feminist scholarly work, looking at the gendered undervalued labour of care (Murphy, 2004; Federici, 1979). It has also been discussed in relation to institutionalised healthcare and the biomedical models utilised ( Kleinman, 1981; Engel, 1997); the ethics of care in work on disabilities (Kroger, 2009; Pfeiffer, 2000) and yet the mundane everyday

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Following scholars in Science and Technology Studies (STS), this thesis recognises that a sensitivity to analyse how heterogenous elements of particular contexts come together in care practices is important. STS analysis focuses on how the elements unfolding in a given

context, (composed of materialities, doings and different actors), must be understood relationally (Law, 2008). Such elements mutually shape and inform one another, meaning that care should be thought of as a collective of actors, technologies and practices (Mol, 2003:61).Through putting such practices into words, the status of care is elevated (Mol, 2010:229; Moser, 2011) and the reader is encouraged think with care about their own care practices (Van Dooren, 2014).

In order to understand each collective and how they interrelate, a focus on practices is key (Law, 2008:1). This thesis focuses on the practices of care, emphasising the doing. Puig de la Bellacasa asserts that care is always active, it is a practice, an enactment and a doing

(2011:89). Through focusing on the doings of care for vulvodynia, I am able to tease out the various materialities, relations, concerns, expectations and situations present in each

particular web and in doing so, highlight the multiple ways that good care for vulvodynia is done.

STS scholars also call for care as a practice of critique and argue that our own research and scholarship should be approached care-fully (Van Dooren, 2014:293; Puig de la Bellacasa, 2012). In this respect, researching something that you truly care about can be key in ensuring your work is truly care-full. Indeed, Haraway has stated “I will critically analyse…only that which I explicitly love” (1997:151). I apply such insights to my own research here; I see the work produced as a practical act of care, asking readers to be curious and concerned about vulvodynia, and as a directive to a willingness to respond to these matters of care.

Multiplicities

In order to understand the specificity necessary for STS analysis, a focus on the contingent and the contextual is key (Atkinson Graham et al, 2015:739). Within each context there is never one stable ‘truth’ or ontology that can be known, but rather multiple ontologies at work simultaneously, constantly developed within situated networks of actors and objects in

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practice. Such ontologies are always ‘in-the making’, constantly enacting, translating and transforming realities (Asdal and Moser, 2012:293). Vulvodynia is therefore not one known object, but rather exists as multiple entities, each translated into contextually specific bodies and experiences through varying modes of action. Ibáñez Martín and de Laet, in their study on fat waste management, show how different modes of citizenship are enacted through fat waste management, and how such modes are never static (2018:703).Whilst the mode ‘good citizenship’ may be enacted through particular waste practices, one is never a ‘good citizen’ for ever. Multiple modes of action co-exist and create realities constantly; one may be a good citizen one day and a re-user the next through the practices they engage in. Similarly, care practices as modes of action enact various vulvodynias.

Multiplicities are often acknowledged as a starting point for inquiry within STS (Netz et al, 2019), and in order to ‘know’ such multiplicities, attention must be paid to the context specific practices that make them. A multiplicities approach can rupture and transform previous ‘taken for granted’ categories and draw careful attention to new ways of opening up such categories (Van Dooren, 2014:293). No one category is seen to exist objectively, in an abstract ‘out there’, but rather is done and enacted in practice. By acknowledging that there are multiple ways of ‘doing’ categories, and in this thesis ‘doing’ the category of vulvodynia, comparisons of different contexts and values can be done (Pols, 2014 in Netz et al, 2019). Such an approach does not necessarily make for easy analysis, often further complicating issues, however, in heeding Haraway’s call to “stay with the trouble” (2012) a multiplicity approach, however messy, is necessary to understand the full facets of good vulvodynia care.

In this thesis, I am not attempting to offer an overall definition of ‘good care’, but rather sensitise the reader to particular relational webs and moments in which multiple conceptions of ‘good care’ are enacted. There is not one ideal of ‘good care’, but rather multiplicities of care that are being shaped, moulded, invented and adapted time and time again (Mol et al, 2010:5) as well as multiple ‘goods’. In Mol’s study on good food in a Dutch nursing home (2009), she shows that different ‘goods’ arise through the practice of feeding and eating, including nutritional value, cosiness and taste. Such goods have complex relations,

sometimes complimenting and at other times contrasting. In attending to the multiplicities of ‘goods’, I can open up analysis to how ‘goods’ coexist within practices, without privileging certain practices or knowledges, thus nuancing the conversation on ‘good care’.

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Multiple ontologies are relational; they collaborate, intersect and even depend on one another (Mol, 1999:83), and in doing so, create varying realities. If there are multiple realities that exist, then multiple bodies also exist and are enacted within these realities. The ‘body multiple’ approach sees bodies not individuals bound by skin, but rather as many bodies existing in constant communication with others, technologies, objects and practices that make up what it is to have a body (Blackman, 2008:1). A condition like vulvodynia which affects the body cannot be known as a stable entity, but rather is ‘known’ differently within the clinical context, or at home. Those suffering from and those treating vulvodynia live and enact these multiple realities at the same time. Whilst I explicitly focus on the practices of doing ‘good care’ for vulvodynia, it is important to acknowledge that through such practices the vulvodynia body multiple is enacted, and indeed throughout my fieldwork bodies such as the muscular body, and the hormonal body emerged.

Feminism and care

Feminist STS scholars have engaged with care as an ethically and politically charged practice performed by women, or those gendered female, to little or no recognition, traditionally articulating the underarticulated (Driessen, 2019:10). Law (2019) says that feminist material semiotics researchers ask themselves what political work they want to do through the

weaving of their chosen material semiotic web. Care practices, and particularly those of self-care, have been seen as an act of political warfare for those that often face structural

oppression and disenfranchisement; women, people of colour, the LBGTQ+ community and those living with disabilities (Hobart and Kneese, 2020). Knowing how to care for bodies not accepted in the mainstream has been theorised as an act of feminist resistance (ibid). Through DIY Gynaecology workshops teaching those with vulvas how to examine their own cervixes and 3d print their own speculums, feminist collectives such as GynePunk aim to reclaim bodies through self-care and liberate gynaecological technologies.1_{Murphy discusses the rise}

1_{GynePunk are a feminist collective who see the body as a technology that can be ‘hacked’, moving away from} traditional notions of sex and gender. Through DIY gynaecology workshops, they aim to ‘decolonize’ the female body and teach self-care practices for those that cannot access the biomedical gynaecology system (Bierend, 2015). For further information, see https://pechblenda.hotglue.me/?transhackfeminism_en/ and https://gynepunk.tumblr.com/).

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of vaginal self-examination within feminist circles in the 1970’s (2015); teaching women how to care for their own vaginas was seen as a way of divesting power from patriarchal structures in gynaecology. Materialities such as speculums carried connotations of patriarchal control over the female body, as well as symbolising knowledge of the female body only available to those with biomedical training. Learning how to use them was taught as a self-care practice, seen as an antidote to the pathologisation of bodies in the medical system and of reclaiming knowledge.

Graphic given as a present to C. Downer, an active member of feminist consciousness raising movement in the 1970’s. Downer was charged with practicing medicine without a licence after teaching women how to do their own gynaecological examinations. She was given this after she was acquitted. The ‘AMA’ stands for American Medical Association. (Source: https://artsandculture.google.com/asset/with-my-speculum-i-am-strong-i-can-fight/lQGhQhwBPoZ0Dg)

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It is also well documented in feminist medical anthropological literature that many women, or those with vulvas, feel they do not receive ‘good care’ within biomedical institutions (Jordan, 1997, Martin, 1987, Werner and Malterud, 2003). Conditions that affect the vagina have been seen as particularly problematic (Sanabria, 2015) as they are linked to gender identity, sexual expression and reproduction, and create a deviant female body. Finally, an STS feminist perspective draws attention to the messiness of care, dispelling the romanticised ‘ideal’ of care as a loving, traditionally ‘female’ act (Peters, 2011). Care can be boring, painful, difficult, smelly and hard work, as will be further explored in the chapter on ‘good care as work’. In this thesis however, ‘good care’ emerges as an overlapping, contrasting and complimenting set of practices.

In line with Mol and colleagues (2010), I am attentive to the practices of care; the tinkering, adapting and adjusting that goes into doing ‘good care.’ I discuss how care practices explore different ways, and find the least-worst way, of living with chronic vulval pain (Law,

2019:11). By putting vulvodynia care practices into words and asking what is ‘good care’, I am making an original contribution to the field and hope to incite others to care for this under-researched and undervalued condition.

In the field

Covid-19

When Covid-19 was shimmering on the horizon of Europe, I had already started my fieldwork and conducted around nine interviews. Some of my interviews had already been via Skype, so moving all my interviews online didn’t have a huge impact. It was a little more difficult to build rapport over Skype than it would have been in a café, and some non-verbal expressions of care would have been nice, but my positionality and understanding of

vulvodynia helped to bridge this.

However, Covid-19 did greatly impact the writing of this thesis. I returned to London and was initially quarantined in a small house with no desk. Trying to make sense of the data, my

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new quarantine reality and what felt like the loss of my previous life was extremely difficult. Stress is well known to impact pain, and I experienced my worst pain flare for years. I felt that my body was in overdrive, and I could not get an appointment in the flailing UK health system. Instead, I embarked on a host of new (and potentially ludicrous) care practices in an attempt to care for myself and my pain. One of these- drinking celery juice, is described in the chapter two. During this time, I feared I wouldn’t be able to finish my thesis; I was struggling with pain and the associated symptoms of anxiety and insomnia. However, I slowly processed my situation and, with the help of my supervisor, my partner and my parents, was able to write this thesis, aptly demonstrating how care always involves others.

I had hoped to observe care practices in action, however Covid-19 meant I could not do this. Participant observation or ‘deep hanging out’ (Wogan, 2004) is often cited as a way of seeing what people do, as opposed to what they say they do, giving the ethnographer a full sensory experience. I was not able to do any ‘deep hang outs’, but my positionality as someone with vulvodynia and researcher means that I still had a ‘whole-of-body experience’ (Madden, 2010) of fieldwork without actually conducting any participant observation in person. Instead, I observed my own care practices during quarantine, looking inward to turn myself into one of the objects of analysis (Hoppe, 2012) and articulating what I understand to be ‘good care’ for vulvodynia.

Methodology

The purpose of this research is to understand the diverse care practices engaged in by those living with and treating vulvodynia, in order to make some semblance of an answer to the research question: What is ‘good care’ for vulvodynia? Law argues that STS scholarship works through case studies (2008:2) as this enables close attention to the varying but overlapping methods, sensibilities and concerns in empirical-and-theoretical practice (Law, 2019). The majority of my research comprises 18 in depth semi-structured interviews. These are complimented by observing my own care practices; analysis of information on personal blogs; watching Youtube videos; reading medical articles and information distributed by vulval pain organisations.

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Initially, my concern was finding participants, given that I don’t speak Dutch and the general vulvar dis-ease (Labuski, 2013) that inhibits people from talking freely about the vulva in pain. I began reaching out to varying organisations to recruit interlocutors in November, but many ignored me, or responded negatively. I realised I had never met anyone in person who had vulvodynia. How could I find people like me, managing vulvodynia on a daily basis? I sent my call out through the newsletters of two big patient global advocacy organisations, the National Vulvodynia Association and the Vulval Pain Network, specifying I was looking for people in the Netherlands, as well posting in online vulvodynia support groups.

Following these call outs, around 25 people contacted me for an interview. I completed 18 interviews with 3 medical professionals and 15 people with vulvodynia, ranging in length from 45 minutes to 2.5 hours. I conceived of each interlocutor as subjects-who-know (Pols, 2011), appreciating their subjectivities as part of the wider ontologies of vulvodynia care. The majority were heterosexual, with 3 identifying as queer/lesbian and one other as having had relationships with other women. One person identified as non-binary, and whilst I did not explicitly ask the others their gender identity, their language made it clear they identified as women. Most participants were white, from varying European countries, and all interviews were conducted in English. One participant has African and Middle Eastern roots. Given that I am tracing care practices related to vulvodynia, I did not have a set fieldwork site, but rather situated care practices. All my interlocutors but one lived in the Netherlands. Prior to the interviews I sent each interlocutor an information sheet detailing the aims of my study, as well as informing them of data procedures. Each interview was recorded with consent, and all interlocutors have been given pseudonyms.

My decision to recruit through vulvodynia organisations and online communities limited potential interlocutors to those already active in the care of their vulval pain. However, interviewing people who are already actively pursuing good care is beneficial for my

research. My call-out highlighted I wanted to speak to anyone who suffered with vulvodynia, vulval pain, pain during sex or pelvic pain, diagnosed or undiagnosed. I kept this as broad as possible to reflect the ongoing fuzziness of defining vulvodynia (Masheb et al, 2000). I also kept the call-out gender neutral, stating I wanted to speak to anyone with vulvodynia to ensure that non-binary and trans people could be included if they wished. It has been noted that previous work on vulval pain overwhelmingly centres on cis-gendered, heterosexual

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women, (Shallcross et al, 2019) and I wanted to ensure that I opened the possibility for a more diverse group of people.

During the first few interviews, many weighty issues were discussed including thoughts on gender and sexual expression and identity, trust in medical professionals, mental health issues, body image and biomedical discrimination. Although important issues, the breadth of topics discussed was overwhelming. I wondered how I would condense so many important issues in a thesis that was focusing on care, eventually realising I had to start discussing more minute (and potentially ‘mundane’) details of everyday management of vulvodynia in order to answer my research question. From my own experience of this condition, I am aware of the emotional toll of having vulvodynia and was conscious that asking interlocutors to detail the exact way they apply a particular cream was potentially not what they felt to be most pertinent. In order to manage expectations, I started to explain to interlocutors that for the sake of this research project and the time allotted, I would be focusing on management and care of vulvodynia and therefore may be asking questions that may seem basic. The

interviews following this tended to focus more on practices.

I am also never quite out of ‘the field’, currently writing my thesis and having forgotten my ‘special’ pillow, I am in pain. Sometimes when reading through my interview transcripts, I find myself wondering whether to try a particular treatment described by an interlocutor. My ‘self in pain’ interacts with my anthropology self. It is both of these selves which write this thesis2_{. I see having both these selves present as a strength as I avoid the ‘navel-gazing’} sometimes present in auto-ethnography (Hoppe, 2012) and my STS approach can encompass these multiplicities and multiple realities that are enacted in every care practice. My voices are added to the other voices that make up the messy multiplicities of understanding good care practices.

2_{Whilst writing, I struggled with what to include in this thesis. My ‘self in pain’ wanted to focus on the} biomedical encounter as a site where a perceived lack of care is experienced, and the subsequent trauma of being denied adequate biomedical care. This ‘lack of biomedical care’ was discussed over and over again in my fieldwork. However, I also wanted to stay true to my research focus of the doing of ‘good care’, and amplify these practices, particularly self-care, thus interrogating the conversation on care. However, I believe that the biomedical encounter as a site where different understandings of ‘good’ and different doings of care clash for vulvodynia is a particularly pertinent future research project.

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Positionality

My experience of living with vulvodynia for the past 16 years catalysed this research. Whilst this is not an auto-ethnographic thesis, my positionality as a person with vulvodynia created a form of inter-subjectivity with my interlocutors, giving us a shared language that may not be available to other ethnographers without vulvodynia (Hoppe, 2012). I was eager to know how interlocutors engaged with their vulvodynia, positioning them as experts of their own care. I have spent years working out how best to manage and care for my pain, and I had so many questions, motivated by my desire to understand how people actively engaged with

vulvodynia through care practices, and when they didn’t.

As a feminist researcher, I am aware that my political beliefs may influence my research and writing. My aim is to draw attention to a body part steeped in shame and stigma, as well as visibilising the work of care. However, whilst I see myself as an intersectional feminist, it is important to shed light on the whiteness of my participants, and my own positionality as a white, able bodied, middle class woman. There have been calls for further research into the prevalence of vulvodynia in people of colour, with the majority of research done focusing on white heterosexual women in the USA or the UK (Blair et al, 2015). It is essential that people from different ethnic and racial backgrounds are included in the conversation around

vulvodynia, however nearly all my interlocutors who self-elected were white. My sample is therefore not racially diverse and there is still much research to be done with people of colour with vulvodynia.

Finally, my dual positionality as medical anthropologist and person with vulvodynia impacted my research, meaning interlocutors wanted to connect on an emotional level, as two people sharing a subjective yet similar experience, and referring to me as medical objective ‘expert’ who could potentially give them information on treatments. After my research ended, I sent round a list of recommended doctors and treatments discussed in interviews to all interlocutors as a way to ‘share’ care.

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Vulvodynia as a political issue

Pain is often silenced; and when the pain is located in the vulva and vagina, body parts shrouded in shame, the silence is overwhelming. Whilst I was motivated to draw attention to vulvodynia in the hope that some medical attention is directed towards this under-researched condition, I was also driven by the wish to make this debilitating, embarrassing, shameful, painful condition public, rooted in a feminist ideology that seek to destigmatise the vulva and vagina and address the pervasive vulvar dis-ease, a wish that was reflected by my

interlocutors, outspoken people passionate about awareness of vulvodynia.

Most of the care practices described in this thesis are self-care, done by oneself to the self. Whilst I have not necessarily analysed how power influences care, the political dimensions of care practices cannot be ignored. Foucault’s work on ‘technologies of the self’ demonstrates the relationship of self-care and power. ‘Technologies of the self’ are a series of practices through which one tries to work out, and subsequently transform, the self in order to attain a certain mode of being (Bakardijieva, 2011). Whilst these may be private acts of self-care, they are subject to powerful normativities (Vogel, 2016:25). ‘Technologies of the self’ are always interrelated with other technologies such those of power or production (Foucault, 1988), functioning together to inform which skills and practices are considered necessary. Thus, whilst ‘technologies of the self’ are practices done with the aim of transforming the self in line with expectations and norms (Savoia, 2010), they are also shaped by dominant

normativities. For example, Vogel (2016:19-25) shows how ‘technologies of self’ analysed in work on obesity focus on how the body is tamed and ‘made docile’ by particular norms of consumption and dieting. However, ‘technologies of the self’ present a “dialectical

opposition”; they are practices established in a powerful social order and can reproduce it, but they also involve conscious practice and agency (Bakardijieva, 2011:402).

The self-care practices described in this thesis always navigate dominant social orders such as scientific discourse, heteronormativity and biomedicine. ‘Technologies of the self’ used for vulvodynia care can transform expectations in line with these orders, for example dilators suppose that the body can and should be penetrated, and that in turn becomes desired by the self. However, as Vogel argues (2016:21), a ‘technologies of the self’ approach that solely looks to how power and normativities dominate the self risks not exploring other ways the

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self is created and informed by more marginal practices, such as the care practices described in the thesis. Therefore, through this thesis I see the care practices described as ‘technologies of the self’, always embedded in societal norms, but also underpinned by the potentially liberating question: what techniques do we need to practice in order to become the self that we most desire?

Ethics

The main ethical challenge of my fieldwork was ensuring the psychological and emotional health of my interlocutors who live with vulvodynia. The subject matter is very delicate, and talking about such intimate pain can be difficult and even triggering for further pain, as I found out myself. After them I was always physically and mentally drained, and I believe my participants were too.

Despite having and understanding vulvodynia, some interviews were still upsetting.

Vulvodynia pain is on a spectrum and fluctuates greatly; a few interlocutors had their entire lives erased by pain. Whilst I have experienced extreme pain and disruption from vulvodynia, I was conscious that this was not on a par with those who had lost partners, jobs and

independence from it. My experience of vulvodynia could not relate with the severity of theirs, and several of these conversations involved tears as I struggled to emotionally support them through the computer screen. I thought about these interviews for weeks after.

I am also aware that speaking about vulvodynia may be felt as something that they ‘have’ to do in order to make having this condition worthwhile. How can they make their pain count towards something positive? I tried to create an interview space that was welcoming and open. Elis argues that by interviewing people about emotional experiences you are acting as a witness, validating their experiences and making them better able to cope with their

circumstances (2016). Whilst I do not suggest having made interlocutors feel better through interview, I know it can be positive when another person reflects and legitimises your experience. Indeed, two of my interlocutors mentioned their decision to participate in the research was motivated by a desire to help themselves come to terms with vulvodynia, whilst others appreciated having a space to speak.

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Data analysis

My positionality as a both someone with vulvodynia and a researcher definitely smoothed my entry to the field. However, it also somewhat hindered my fieldwork and analysis, meaning I was approaching the interviews and data with the potentially jaded eyes of someone who has built assumptions, emotions and experiences around the condition over years. When listening back to my interviews I find myself annoyed that I didn’t press interlocutors to further

explain something in detail. Often, interlocutors would say laughingly “oh you know how it is….you know what doctors are like…know what it’s like when you can’t

sit/walk/masturbate”, and I laughed along, accepting this before moving onto other

questions. I drew partially on my own experienced instead of using the mindset of the curious ethnographer. I was responding emotionally as someone with vulvodynia to the potential detriment of asking them to further describe care practices. However, by using my auto-ethnographic data combined with interviewee data I believe a rounded understanding of doing good care can be reached.

In order to do analyse how vulvodynia is managed in practice, attention has to be paid to the ‘doings’ discussed in the interviews. What are the care practices that people engage in, and how are they valued? Each interview was transcribed and coded according to various ‘doings’ of care, such as eating, massaging, taking pills, stretching, etc. I grouped these ‘doings’ together, focusing on particularly interesting stories in each group. I then paid attention to how and why these ‘doings’ were valued or not, carefully analysing the situation, the type of pain present, whether anyone else was implicated in this type of care, and the impact of this care on the person’s life. Why was eating a particular diet valued as good care in this situation, and in another was written off as something unsustainable?

The process of writing is in itself a form of methodology and analysis (Green and

Thorogood, 219), and I recognise that my methods have effects; they make differences; they enact realities; “…and they can help to bring into being what they also discover” (Law, 2004:393). Through writing, I consciously selected the stories that relate to my research question. By paying attention to the small details and reading between the lines when

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have presented both the most oft-cited caring practices, as well as those which may only have been mentioned by one or two interlocutors, but which present interesting ways to think about ‘good care,’ or indeed, a lack of ‘good care’. However, no care practice stays ‘good’ forever and it is important to note that what is good today may not be good tomorrow. What is considered ‘good care’ is highly specific to the situation (Pols, 2012:83), therefore none of the practices that I describe are set in stone. Instead, this research can be viewed as a snapshot of particular ‘good care’ (or lack of) practices that were engaged in at a specific time by specific people and materials, but themselves situated constantly shifting transient web of multiple realities (Law, 2019)

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Chapter two: Good care as work

“The pain is manageable, but you can never turn it off. I would always compare it a suitcase of three kilos that you are carrying around, at the beginning it's not too much, you could do that. But if you have to carry it for one week, and you cannot put it down, then it is so heavy and so painful. And then you have to do it for a month, and then two months, it’s

exhausting… You can't see it, it’s very invisible but we are suffering every day all the time…”

(Tina, interview extract)

Chronic pain conditions are hard work. Those with chronic pain live in a continual state of uncertainty- how will my pain be in an hour/tomorrow/after I’ve eaten this food/done this exercise? Such fluctuations can be an “ontological assault” (Good et al, 1994:103), and to deal with this, those with vulvodynia have to work hard. They have to do daily care practices aimed at maintaining the vulvodynia body at an acceptable level of pain, including

identifying their pain triggers, and then preparing and planning for them. Similar to any kind of work, good care practices can be boring, time-consuming, frustrating and expensive, not to mention the fact that they may not ‘work’, and pain can still occur.

This chapter frames good vulvodynia care as ‘work’, drawing on the feminist tradition of analysing care practices, often done by women in the domestic sphere, as a form of labour or work to legitimise the skills and effort that went into them (Finch and Grove,1983; Federici, 1974). Feminist theorists fought a theoretical and political struggle to move from the

romanticised ideal of care as something that is innate in the female disposition (Peters, 2011), to framing it as ‘work’ with material, financial and societal consequences. Focusing on housework, a form of domestic care, Federici argued that it has been transformed into a practice that is “…supposedly coming from the depth of our female character” (1974:76). By theorising care as work, the skills, time and effort put into it is acknowledged, as with any other form of work.

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In more recent feminist texts, the idea of care as a primarily affective practice, equated solely with positive, loving feelings is transformed, and the ‘darker’ side of care is explored

(Murphy, 2015). Conceptualising care as work does not negate caring as nurturing, but it acknowledges that caring is not always about loving and positive emotions (Martin et al. 2015). To nuance the conversation on care, feminists looked at experience of alienation, discomfort, unease, pain or labour in care (ibid.) In a similar vein, I hope that by framing good vulvodynia care as work I will acknowledge and visibilise the often unseen daily grind of living with a chronic pain condition and reveal the daily labour of care that is required to craft ways to make life more bearable with pain (Mol, 2008:46).

I define work as necessary practices that need to be done to maintain vulvodynia, and

therefore the body, in a state that is manageable, meaning that the person can live in the most enjoyable way possible. Good vulvodynia care as work is not necessarily about making the body better, but rather what is necessary to be done to be in the ‘least-worst’ state (Law, 2019). Those with vulvodynia do the work of ‘planning’ and ‘preparing’ in order to ready themselves for possible contingencies or prepare for a known pain flare. I also look at Cacchioni’s concept of ‘sex work’ (2006) to frame particular care practices specific to those with vulvodynia.

Planning and Preparing as good care

When one lives with something as inherently fluctuating and temperamental as vulvodynia,

planning and preparing become key care practices. Planning is part of everyday life. In order

to function we have numerous routines- alarms set, keys in bags, food in the kitchen – that help us achieve the simple goals of everyday life. However, the vulvodynia body is

unreliable. Even if every step is planned to achieve a goal, at the last minute pain may flare and plans have to be abandoned. These ‘contingencies’ can often occur during “ordinary and everyday achievement of planning and organising copresence with other people and with material objects” (Peters et al, 349:2010). Pain flares are a contingency that has to be prepared for, and preparatory practices that aim to cope with the ‘existential uncertainty’ of vulvodynia form part of care as work (Denny, 2009:991).

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The stories presented here show that good vulvodynia care always incorporates

contingencies. They might be plans that rely on the person’s knowledge of their pain triggers or aim to alleviate symptoms in the longer term, or sometimes they are simply about

physically and mentally preparing yourself to manage the day ahead. They all, however, demonstrate the full-time work of living with and managing chronic vulval pain. I start with a story of my own planning and it’s temperamentality, during lockdown in London.

******

I find myself thinking about ‘good care as work’ a lot these days. I am in the middle of a pain flare during lockdown in London, feeling hopeless and throwing myself into all sorts of new care practices. I don’t feel I can trust doctors at the moment, and anyway, I can’t go and see one because of the pandemic. The pain is so bad that I literally cannot wear knickers, so I guess it’s good that I’m not really allowed out of the house. I have started a celery juice diet, recommended to me by my herbalist- supposedly it helps alkalinise the body. I have no idea whether it is going to have any positive effect on me, but because I trust her and I’m feeling desperate I decide to give it a go. She tells me what to do, and it’s a lot of work. I have to drink the juice of a whole head of celery every morning on an empty stomach, and I shouldn’t eat or drink anything for at least thirty minutes after. This means that if I want to eat

breakfast at the same time as my parents and do exercise in the morning, I will need to get up earlier than normal and drink the celery juice to give it time to settle in my stomach. Or, I could not do my exercise in the morning, and do it later in the day, but usually I am tired by the afternoon. If I have to get up earlier, I must also go to bed earlier as a lack of sleep can be a trigger for pain. That means I will need to start cooking earlier and eat dinner earlier. The temporal characteristics of my whole routine has to change, and I spend some time working it all out.

Once I have planned the timing of my drinking, I now need to make it. How to do this? The juice must be pure. My herbalist tells me that a juicer is the best option. I ask my mum whether we have a juice, she points to a dark cupboard, and as I am looking for it, I think about how sometimes technologies are necessary to do good care, or at least lighten the burden of caring. At the very back I find an old model, covered in dust. I wash and assemble it. I carefully wash each celery stalk separately and feed them through the juicer. Dark green juice spurts into the waiting jug but also, unfortunately, all over me and the counter. The

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juicer is sort of broken, but still useable. However, it’s very messy and I absolutely hate washing up. It seems too much like hard work to have to juice the celery and try to hold the juicer together at the same time. I’ll have to experiment.

Next day I try again with a blender. I put the celery in the blender with a small amount of water. According to my herbalist, I shouldn’t add water but I think the blender might not be able to handle the celery without water. I think about the different aims behind these choices, I am balancing the ‘good’ of maintaining the machine to be able to make celery juice in the long term, against the ‘good’ of only drinking the purest undiluted juice. I blend up the celery until it is a smooth paste, and then pour it into a waiting sieve over a jug for the juice to drip out. The blender doesn’t fit the whole bunch of celery at one time, so I have to do it in batches. I use a spoon to push down the celery pulp in the sieve to ensure I don’t miss any juice. This whole process takes around 10 minutes and is tedious. I drink the juice. It’s disgusting.

I have to drink celery juice every day for at least thirty days on an empty stomach, meaning I need a ridiculous 7 bunches of celery a week! Where am I going to get that much celery from? My local shop only stocks one or two bunches each day, and it’s not organic, which it ‘should’ be. I wonder whether it is better to drink non-organic celery juice every day, than organic celery juice just a few days a week. I walk to a few different shops in my

neighbourhood looking for celery. It has to be the right kind, not too many leaves as they are very bitter, juicy stalks and not too stringy. I finally manage to find four adequate bunches, but this is not enough to last me all week. I have to repeat this process a couple of times, meaning I must get to the shops before they close, donning covid-19 gloves and mask to go shopping, and decontaminating when I return. When I see I don’t have much celery left, I make a mental note to go get some when I go on my daily ‘allowed’ walk. That means I will have to change the route of my daily walk away from the marshes towards the shops. Sometimes, the shop has run out. The supply chain has been disrupted because of the pandemic. In the end, my parents offer to help me by ordering the celery in their vegetable box, and it gets delivered. I am relieved- at least it’s one chunk of work being cut out. In order to do this care practice, I need to make a plan that involves the celery itself, the organisation of others in space (the shop-keeper, the customer, the celery coming from afar),

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I plan when and where I am going to get my celery from, what type I will buy, what time I am going to get up, how I am going to make it and then the actual work of drinking the disgusting juice. I will do this for thirty days before I have any idea whether it has ‘worked’ or not, whatever that means. Maybe my pain will have lessened, maybe I will feel more in control, maybe I will have spent lots of money and time and will feel no discernible difference. Right now, I feel it is important that I take steps towards caring for myself and feeling better, particularly as I have so little control over what is happening right now. However, it is hard work and, in the end, all my planning might be for nothing.

******

My celery juice vignette illustrates the necessity of planning. As with any other care practice, planning involves specific relations and doings between materialities, actors, locations and concerns. In my fieldwork, travelling emerged as something which required a lot of planning, but for those with vulvodynia it can be difficult. Pain can change how you walk and thus affects temporalities: it takes longer to get places, and you are late to theatre; it can be painful to sit on certain hard surfaces, so you have to stand whilst taking a coffee. It even has

financial repercussions: you can’t cycle to the cinema with your friends but have to pay for an uber. These examples, and many more, were cited by my interlocutors. Plans have to be made.

Sanne and I have a Skype interview, my first interview back since I’ve moved to London for quarantine. Sanne is a young Dutch woman, also a student, and currently in lockdown in Utrecht. She originally trained as a medical doctor, and has many thoughts about what ‘good care’ is for vulvodynia from this dual perspective. She has pain in her vulva and vagina which means that penetration can be impossible, and she also has problems with her bladder, a common co-morbidity with vulvodynia (Nguyen et al, 2012). Sanne has issues with needing to use the toilet, she tells me that the urge to pee can come across her so quickly that she physically cannot hold it. “I have this urge, like an urge complaint. It feels like I have to pee

sooooo badly that as if I didn't go for hours.” It’s not the same as people with a ‘normal’

bladder, who can hold their urine. Instead, if she is not able to plan ahead she sometimes wets herself. “It’s really really stressful and really has consequences for my daily life. And if I

don't go, I have to pee in my pants. So it's not that I let go of everything, but it is something, and it happens weekly, but not so much. But it’s so stressful and shaming, uncomfortable”. In

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the past Sanne has had botox injections into her bladder which relaxed her muscles and meant that she could hold her urine more easily and be able to make it to the toilet in time. “It was

so nice but really confronting for me as well,” she tells me, “I didn't lose any urine at all for a couple of weeks. It was like, this is how normal people feel when they have to pee! It was nice, but also like oh my god, I have such a difficult problem.” Whilst it’s obvious during the

interview that this really affects Sanne, she still has to live her life and work around such issues. Sanne knows that she will inevitably need to wee whilst she is out and about. She tells me how she works hard to plan so that she can avoid such incidents as much as possible.

Sanne travels to Amsterdam from Utrecht regularly for her studies. However, the train from Utrecht can take between 25-45 minutes, and the urge to pee might come on at any minute.

“There are two different types of trains in the Netherlands” she explains to me, “the intercity and the sprinter.” The intercity is faster, and has toilets. “The sprinter doesn’t have any toilets onboard, so I wouldn’t get that train. I always get the intercity. I want to make sure that there is always a toilet near, it doesn’t really happen to me that there isn’t one”. By

planning in advance and utilising prior knowledge, Sanne trains herself and her surroundings to ensure that she can nearly always expect there to be a toilet. Once she’s off the train, and in the city, she also plans to make sure that she has one near. “When I go to city centre, I always

scan the area to see if there is a toilet and make sure one is near, like in a café or

restaurant.” She has no qualms about asking to use the toilet if she needs it, but it doesn’t

mean that it’s easy for her. I feel her frustration: “But it’s so complicated, so much time, so

much stress. Sometimes I am so fed up with it. It’s admin3_{to just get your body to be working}

as it should.” Sanne’s pre-plans her daily routines with care around this need to pee.

There is no respite from the on-going work of such self-care practices. Once Sanne has found a toilet in a café, she will inevitably drink more liquid and have to go again. She tells me she tries to mitigate this by not drinking much water, especially when she’s out, but this in turn makes her symptoms worse as she should drink water to flush her bladder. She balances the short-term urge to use the toilet, with the longer term health symptoms. Ironically, this

careful planning only becomes visible when the care doesn’t work, and Sanne doesn’t get to a

3_{By admin, I understand that Sanne is referring to the idea of ‘life administration’, meaning the small, boring} but necessary tasks that have to be done to ensure that life continues as it should. Normally, these involve bureaucratic tasks, for example paying bills, getting insurance etc. However, in the context of chronic illness, ‘admin’ often refers to the small everyday tasks that have to be done to look after and care for the chronic

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toilet in time. Through abstention from drinking, in this case a ‘technology of the self’ (Foucault, 2000), Sanne intervenes in and transforms her body in order to correspond with the necessary rules of society- that of using the toilet rather than wetting herself. She also adjusts her temporal-spatial routines (Martin et al, 2015:628) to work around such

contingencies. Sanne draws on her past knowledge of her body, as well as certain locations that toilets can be found. This takes skill, forward thinking and organisation, but is invisible to others.

Travelling is one of many practices that is planned, measured and adjusted accordingly to care for vulvodynia pain. However, people with vulvodynia also have to be prepared for the fact that pain may occur at any time and plans go awry. ‘Preparatory care’ not only

encompasses the physical work of doing the care, but also the emotional work of mitigating the constant expectation that the unexpected may happen. Lulu’s account below is one instance of ‘preparatory care as work’, but those with vulvodynia and those treating it are constantly engaged in ‘preparatory care’, either preparing themselves physically and mentally for living with a day of pain, or for treating those in pain. Ironically, the best care is the one which is not utilised, as it means that pain hasn’t arisen. The care work that has gone into preparing may not be necessary, but at least they know they are ready for pain.

I speak with Lulu about sudden pain flares. Lulu is a young Dutch woman who contacts me through Facebook. She works at an LBGTQ+ organisation and is a lesbian. When we speak on Skype she is quite upbeat, she hasn’t had a pain flare in a few weeks, but she is always a bit anxious that it may happen again. Lulu has had vulval pain since the first time she tried to insert a tampon. She has also been diagnosed with vaginismus and endometriosis, as well as vulvodynia. As a result, she can have sudden pain flares and has attended ER twice with vulval pain. I ask her what the pain felt like and she answers: “Like extreme burning and very

sore, but very sharp at the same time. It feels like someone is putting a knife in my vagina and turning it around.” It was so bad that at times she wasn’t sure if she could continue living

with such pain. These pain flares can come out of nowhere and can be completely debilitating. I ask Lulu how she deals with this and she describes two essentials that she always has in her bag as preparation: an electric hot water bottle and some very strong painkillers that she was prescribed when she had an accident. “The most important thing has

become my electric hot water bottle. That you can charge within 5 minutes and its hot. I have it with me EVERYWHERE. People laugh about it. but it's always with me…it's a way for me

‘It’s like a knife is plunged into me’: how good care is done for chronically painful vulvas