Endometriosis, period health, and valuing women’s experience

Dr Andrea Ford

Andrea Ford is a Research Fellow at the Centre for Biomedicine, Self and Society at the University of Edinburgh Medical School. She received her PhD in Anthropology from the University of Chicago in 2017. Her research is at the intersection of reproductive and environmental health and justice — building out from her doctoral work on childbearing in California, she has conducted qualitative research on endometriosis and period tracking, with additional interests in endocrine disruption and hormones. Her manuscript, Near Birth: Californian Values, Bodies, and Futures, is under review.

I began my PhD research in anthropology with a sense of wonder about the body, about women’s bodies specifically, and their creative power. I wanted to explore what it meant for one body to multiply, what that was like and why. This meaning is highly dependent on culture, which for my purposes was that of the California Bay Area around 2015. I became a birth doula to conduct this research, and loved the attentive equanimity that being a doula requires: supportively bearing witness to a transformation. Intellectually, I enjoyed untangling the cultural knots near birth. These knots tie together autonomy and dependence, vulnerability and responsibility.

Women’s reproductive health is constrained by such cultural ideas. They shape how we think about women’s bodies and their capacities, and they determine what is considered important, what gets seen. Indeed, the very idea of ‘women’s reproductive health’ foregrounds childbearing – reproduction — among the many functions and effects of female anatomy. And as fascinating and important as childbearing is, this foregrounding is damaging to women’s health. Reproduction is tangled terrain: abortion and contraception, fertility and infertility, maternal mortality and perinatal depression, the infant’s first 1000 days and the inadequate social support for daycare, nutrition, and parental leave. Throughout, the actual needs and experiences of the women in question are overshadowed by social expectations around motherhood, femininity, and family-making. By looking to the side of reproduction itself, we can see these issues in a new light. I am persuaded that one of the keys to improving women’s reproductive health is via a topic that has no direct relation to reproduction, yet which requires women’s embodied experiences to be valued and taken seriously.

Endometriosis is a disease that causes chronic and debilitating pain. Because it is related to disordered menstruation, it has been overlooked and dismissed in misogynistic ways. Directing research and policy attention, as well as funding, towards endometriosis should be a priority for those concerned with women’s reproductive health. Because the present abysmal state of endometriosis care stems from and reflects damaging attitudes about women’s bodies, changing this treatment will have repercussions throughout all that pertains to women’s health and women’s rights.

How women are currently underserved

My postdoctoral research has focused on endometriosis and period health. Compared to childbearing, which receives so much cultural and medical attention that tensions and stalemates about the ‘right’ way to do things can overwhelm new parents, the quotidian problems and pleasures of periods are relatively off-radar. Endometriosis, or ‘endo’ as it is commonly called, affects around ten percent of women and girls. This is a similar proportion to diabetes and over four times the total number of those with HIV/AIDS, yet endo is widely viewed as a niche and private issue – when people know about it at all (i). It overwhelmingly affects women, though also trans men and non-binary people, and on rare occasions cis men (ii).

Endometriosis involves tissue similar to the uterine lining (the endometrium) forming elsewhere in the body, where it undergoes cyclical bleeding. It is commonly found around the ovaries and bowels, though has been found as far afield as the diaphragm, lungs, and brain. The pain caused by endometriosis can be constant, and is often more intense during or leading up to one’s period. It manifests differently in each person, and can make bowel movements, urination, and sex excruciatingly painful (iii). This chronic pain can have devastating effects on people’s ability to pursue work, maintain a social life, and build intimate relationships. Despite these debilitating symptoms, the average time to diagnosis in the UK is eight years. Sufferers are often told their symptoms are period pain, and ‘normal’ or ‘in your head’ (iv). Over time, the pain, misrecognition, disbelief, and compromised abilities contribute to anxiety and depression that can be severe (v).

Diagnosing endometriosis involves surgically looking for lesions of the out-of-place tissue. Not only is this invasive, but the presence and size of the lesions does not correlate with the severity of pain people experience. There are no non-surgical ways of diagnosing endometriosis, and available treatments are likewise invasive, disruptive, and often ineffective. They include hormonal and pain-relieving pharmaceuticals, which have many side effects and often become less effective over time, as well as surgically removing the lesions which only reduces symptoms in a subset of patients and is not a permanent cure. Endometriosis is a disease that is poorly understood and heterogenous, with hormonal, inflammatory, and neurological aspects (vi).

Endo has a complicated relationship with fertility. It is one of the leading causes of infertility, often due to lesions forming around the ovaries and ovarian tubes (vii). Pharmaceutical hormones are a common treatment, and effectively constitute birth control, which means that those trying to conceive must abandon a treatment program that may have been keeping their pain at manageable levels. It is not uncommon for hysterectomy to be recommended as treatment, foreclosing the possibility of biological children. Meanwhile, suffering women are often told that having babies is a treatment or cure, whether or not they express any desire for children. Those who do bring up conception as a goal often find themselves taken far more seriously than when they complained about pain and the inability to manage daily life, leading to their justified feeling that women’s bodies are viewed primarily as vehicles for childbearing.

There are other relatively common conditions linked with menstrual cycles, including myometriosis, pelvic inflammatory disease (PID), polycystic ovarian syndrome (PCOS), and premenstrual dysphoric disorder (PMDD). These can be painful, cause mental health crises, correlate with infertility, and have effects on weight, hair growth, energy, and mood. Collectively, period-related disorders are responsible for huge amounts of women’s suffering, yet this suffering largely falls beneath public and medical awareness. This is an unresolved conflict between current public health approaches and women’s needs and lived experiences. As the most debilitating of these conditions, endometriosis deserves focused attention to bring about change.

Barriers to change

Poor resourcing is an issue at all levels, from funding research to supporting accessible and well-informed primary care and relevant specialist oversight. Clinician researchers report extraordinary difficulty winning funding for topics related to menstruation, a reflection of the devaluation of women’s experience more broadly (meanwhile, funding for infertility treatments and egg-freezing ventures is much less difficult to come by, indicating both a prioritisation of childbearing and a downstream, profit-centric approach instead of an upstream, preventative one). GP awareness of endometriosis is low, and the referrals process between relevant specialisms is complex and inefficient. Both clinicians and patients report difficulty communicating with each other and trusting in mutual respect (viii).

Shame and shaming around menstruation are extremely relevant to poor endometriosis treatment and the lack of resources to improve it. This shame is inbuilt into institutional histories and ‘ways of doing things’, which echo long legacies of ‘hysteria’ in medical thought (ix). Even though the term hysteria is long out of use, any period suffering, whether pain or mood or acne or tenderness, is frequently either deemed a ‘normal’ part of being a woman or ‘imagined’ by the sufferer. Both are patronizing dismissals of women’s concerns.

Even among well-intentioned care providers, such dismissals are a consequence of lack of medical knowledge about women’s menstrual health, due to historical and ongoing neglect in research and education. This ignorance is exacerbated by the cultural pressure put on doctors to ‘know the answer’. While people suffering from endo desperately want effective treatment, those I have spoken with would emphatically prefer being told ‘we don’t know’ over being given the run-around, or worse, being dismissed. The cultural and historical weight given to medical expertise over medical humility is a barrier to good care and institutional change.

Finally, at a more fundamental level, the institutional history of segmenting ‘women’s reproductive health’ as a discrete domain perpetuates certain problems. It reinforces the medical and cultural focus on childbearing issues as central to women’s health, as mentioned above. It also minimizes the importance of men’s reproductive health (x). If periods are systemic phenomena, a ‘fifth vital sign’ influencing and indicating the health of a wide variety of systems and functions in the body, then women’s health would be served by centring periods (xi). The trick is to do so without centring childbearing. I believe such a reframing would require – and engender – valuing women’s everyday lived experience over our reproductive capacities. In turn, this would provide a framework for improving reproductive healthcare.

Solutions: a nested reframing

Recently, endometriosis has been classified as a ‘systemic’ disease instead of a gynaecological one (xii). This is an important shift. While there are biological and physiological mechanisms that justify this terminology, here I am concerned with the way medical terms are also analogies, frames of reference that shape – and are shaped by — broader culture. Above and beyond whatever impacts a systemic view might have on understanding disease pathways and researching treatments, the term indicates a change of perspective that could alter how women’s bodies are approached: medically, in policy, and in society broadly.

With this in mind, I suggest reframing endometriosis, starting with reorganizing treatment around symptoms instead of a recognized disease. This effort would encourage prioritization of patient experience, and would have effects that spiral outwards towards a truly womancentred approach to health. In turn, this would reverberate throughout the way reproduction is managed for people of all genders.

Focus on symptoms

Physicians have begun advocating for approaching endometriosis as a syndrome, which would refocus treatment away from surgically removing lesions and towards multidisciplinary care for complex symptoms such as chronic pain (xiii). Some clinics are already organized around pelvic pain, instead of endometriosis (xiv). Establishing multidisciplinary pelvic pain clinics to which referrals can be made would avoid passing patients around from specialism to specialism, department to department, with doctors hesitant to act outside their area of expertise: an abyss into which many endometriosis patients find themselves dropped. A systemic condition requires being treated as though the body is not a machine with a broken part, but a whole entity, and an entity which is deeply affected by the social conditions in which it exists.

Specialists affiliated with the clinics would include not just gynaecologists but gastroenterologists, urologists, neurologists, and reproductive endocrinologists. The team should comprise psychology and psychiatry to treat the mental health issues that so often accompany (and exacerbate) chronic pain (xv). Ideally, it would also include nutritionists, physiotherapists, and acupuncturists, which have been shown effective at symptom management. Finally, medical humanities and social science affiliates could advise and develop comprehensive supports for patients and staff. Positive change happens when diverse perspectives are brought to bear on a problem, and such centres would facilitate not only exchange of perspectives but collaborative problem solving.

Patients’ care would have centralized management by sympathetic professionals. Those working at such centres should be particularly well trained in respectful and evidence-based treatment of women and menstrual issues. This would both influence and be supported by upstream shifts in medical education to reflect these values, producing doctors well prepared to function in such an environment. Training could include systemic, social thinking about health conditions, nip nascent positivism in the bud, counter implicit and explicit bias, and encourage humility. Introducing interdisciplinary teaching teams into medical schools, with humanists and social scientists having prominent roles alongside clinical and scientific expertise, would help accomplish this.

Woman-centred care

Most importantly, these combined changes would foreground and respond to women’s experiences. Moving the gendered dimension to the background would also allow non-binary people and trans and cis men to receive care comfortably, overall facilitating the holistic treatment of a problem people are experiencing, whether or not it fits into historical divisions of expertise. As endometriosis is such a heterogenous condition, flexible and listening care is required; a woman-centred approach recognises that even well-intentioned health professionals cannot stand in for women’s voices. Humility on the part of clinicians would enhance solidarity with patients. This could have dual effects: on one hand, motivating research to restore formal expertise, while on the other, encouraging patients reclaim their own expertise in a healthcare setting that validates their embodied knowledge and agency (xvi).

Because endometriosis is not a condition anyone has chosen to have, focusing on it could start to shift how the contentious concept of ‘choice’ is seen in women’s reproductive health more broadly. Women have the right to autonomy, as well as to supportive conditions, because the freedom to make a choice is worth little if there are no viable options from which to choose. Attention to the lives of those with endometriosis could foreground the importance of providing good options and seeking solutions upstream. In turn, this could alleviate some of the tensions between individual and population health.

One of many possible examples is the issue of workplace provisions. Accommodations for endometriosis sufferers overlap with those for other disabling conditions, including generous sick leave and flexible working patterns. Yet they also raise questions about ‘period leave’ more generally, and the way that most people’s ability to work fluctuates over their lives for any number of reasons, including bearing and rearing children or experiencing abortion, miscarriage, and infertility treatments, as well as ageing, menopause, and chronic illness. While disability is a more fixed identity for some, it is also a capacious category that could draw attention to the structures and expectations that make some ‘choices’ possible for some people, and not for others. Using endometriosis as a springboard to design accessible workplaces and work patterns could help bridge disease, disability, and reproduction as factors that shape most people’s work trajectories and options.

Concluding thoughts

Focusing attention and resources on endometriosis would draw on a wide network of supporters and build upon a groundswell of interest in the condition. This includes all the patients, clinicians, and researchers currently dealing with this disease (and their representative bodies, like patient advocacy organization Endometriosis UK and physician group World Congress on Endometriosis), but also recent social movements aimed at reducing shame and stigma around periods. Endometriosis public awareness campaigns have been gaining momentum, and health education in primary and secondary schools is starting to reflect this. Recent government initiatives include the All Party Parliamentary Group on Endometriosis and the Scottish Parliament’s campaign against period poverty (xvii). Endometriosis can bridge both ‘sides of the aisle’ when it comes to conservative versus liberal views on women and childbearing, as endometriosis is a barrier both to healthy fertility and motherhood and to accomplishing one’s academic, career, and creative ambitions. Soon national public health bodies and medical education oversight boards could join in.

The transformative implications of prioritising endometriosis are large, with an almost unlimited potential to scale. While it might not be immediately feasible to source NHS resourcing for generating centres across the UK, there are many small, concrete changes that could shift things in this direction with minimal upheaval. For example, employing a pelvic pain manager at major hospitals prior to forming a centre there, or implementing a continuing education training for GPs about respectful, evidence-based care for menstrual health. The ideas proposed here are part of an innovative approach that should be taken up by organisations with the resources to develop, test and scale ideas in the real world.

References

i Approximately 176 million women worldwide have endometriosis (~10%), compared to approximately 38 million people globally living with HIV in 2020. See https://www.unaids.org/en/resources/fact-sheet, accessed 19 October 2021, and Horne, A, P Saunders, I Abokhrais, and L Hogg. “Top Ten Endometriosis Research Priorities in the Uk and Ireland.” The Lancet 389 (2017).

ii Al-Obaidy, Khaleel I, and Muhammad T Idrees. “Endometriosis With Cystic Degeneration: A Rare Disease of Males.” International journal of surgical pathology 27, no. 3 (2019): 311–14.

iii Drabble, Sarah J, Jaqui Long, Blessing Alele, and Alicia O’Cathain. “Constellations of Pain: A Qualitative Study of the Complexity of Women’s Endometriosis-Related Pain.” British Journal of Pain (2020): 204946372096141.

iv Krebs, Emily, and Kelsea V Schoenbauer. “Hysterics and Heresy: Using Dialogism to Explore the Problematics of Endometriosis Diagnosis.” Health Commun 35, no. 8 (2020): 1013–22.

v Culley, Lorraine, Caroline Law, Nicky Hudson, Elaine Denny, Helene Mitchell, Miriam Baumgarten, and Nick RaineFenning. “The Social and Psychological Impact of Endometriosis on Women’s Lives: A Critical Narrative Review.” Hum Reprod Update 19, no. 6 (2013): 625–39.

vi Montgomery, Grant, and Linda Giudice. “New Lessons About Endometriosis — Somatic Mutations and Disease Heterogeneity.” New England Journal of Medicine 376, no. 19 (2017): 1881–82.

vii Garcia-Fernandez, J, and J Garcia-Velasco. “Endometriosis and Reproduction: What We Have Learned.” YJBM (2020):

viii Zale, Madalene, Emily Lambert, Marianna D LaNoue, and Amy E Leader. “Shedding Light on Endometriosis: Patient and Provider Perspectives on a Challenging Disease.” Journal of Endometriosis and Pelvic Pain Disorders 12,
no. 2 (2020): 69–76.

x Jones, Cara E. “Wandering Wombs and “Female Troubles”: The Hysterical Origins, Symptoms, and Treatments of Endometriosis.” Women’s Studies 44, no. 8 (2015): 1083–113. / Nezhat, Camran, Farr Nezhat, and Ceana Nezhat.
“Endometriosis: Ancient Disease, Ancient Treatments.” Fertil Steril 98, no. 6 Suppl (2012): S1–62. / Dinsdale, NL, and BJ Crespi. “Revisiting the Wandering Womb: Oxytocin in Endometriosis and Bipolar Disorder.” Horm Behav 96 (2017): 69–83.

x Almeling, Rene. GUYnecology: the missing science of men’s reproductive health. Oakland, California: University of California Press, 2020

xi Care, ACOG Committee on Adolescent Health. “Menstruation in Girls and Adolescents: Using the Menstrual Cycle as a Vital Sign.” Obstetrics and gynecology 651 (2015):

xii Taylor, HS, AM Kotlyar, and VA Flores. “Endometriosis is a Chronic Systemic Disease: Clinical Challenges and Novel Innovations.” Lancet 397 (2021): 839–52.

xiii Hickey, M, S Missmer, and AW Horne. “Reclassifying Endometriosis as a Syndrome Would Benefit Patient Care.” BMJ (2020):

xiv Such as the University of Edinburgh’s ‘Excellence in Pelvic Pain and Endometriosis Care and Treatment’ (EXPPECT) centre. https://www.ed.ac.uk/centre-reproductive-health/exppect-pelvic-pain

xv Reis, FM, LM Coutinho, S Vannuccini, S Luisi, and F Petraglia. “Is Stress a Cause or a Consequence of Endometriosis?” Reprod Sci 27, no. 1 (2020): 39–45.

xvi Krebs, Emily, and Kelsea V Schoenbauer. “Hysterics and Heresy: Using Dialogism to Explore the Problematics of Endometriosis Diagnosis.” Health Commun 35, no. 8 (2020): 1013–22.

xvii APPG. “Endometriosis in the UK: Time for Change: APPG on Endometriosis Inquiry Report 2020.” https://www.evidence.nhs.uk/document?id=2301041&returnUrl=search%3fpa%3d1%26q%3dbowel%2bprep%2bf
or%2bcolorectal%2bsurgery%26s%3dDate

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