by Sophie Wagner
“Have you ever been told that your pain is imaginary?”. With this provocative opening, the author, journalist and activist Tracey Lindeman, begins her debut book Bleed. Destroying Myths and Misogyny in Endometriosis Care published by ECW Press, Canada in March 2023. Being told that one’s pain is imaginary probably signals one of the most reported injustices experienced by endometriosis (endo) patients during health care encounters. Through this question, Lindeman sharply exposes the reality that living with endometriosis or other menstrual difficulties means to be met with disbelief: Is it really that bad? Menstrual pain is natural. Everybody experiences pain. Maybe you should change your diet. Maybe you should take hormonal birth control. The list of advice given to people living with endometriosis is long but, more often than not, unhelpful.
Lindeman herself suffers severely from endometriosis and in Bleed, she advocates for an improvement of care surrounding the disease. Drawing from lived experience, she not only shares her personal endo story but builds meaningful connections to the subjective experience of patients by which she grants large space to the disease’s multifaceted physical and psychological symptoms.
As of 2025, the World Health Organization (WHO) defines endometriosis as a “chronic disease associated with severe, life-impacting pain during periods, sexual intercourse, bowel movements and/or urination, chronic pelvic pain, abdominal bloating, nausea, fatigue, and sometimes depression, anxiety, and infertility”. It is assumed that more than 200 million people worldwide suffer from endometriosis, next to a supposedly tremendous number of unrecorded cases, with no known cure currently available. Medically speaking, endometriosis entails the growth of endometrium-like tissue outside of the uterus with no reference to how the condition emerges or develops. Since gynecological ultrasound examination is unable to detect the condition, laparoscopic surgery remains the sole definitive medical diagnostic procedure. Hence, the first and main indicator determining the disease is the often-excruciating pain expressed by patients.
In Bleed, Lindeman finds an entry-point to the mistreatment of endometriosis by tracing its roots back to the beginning of the 20th century when one of the most influential figures in gynecological research on endometriosis, John A. Sampson (1873-1946), a former president of the American Gynecological Society, describes endometriosis as originating from retrograde menstruation 1. Here, she notes that before Sampson’s particular theorization, endometriosis had most probably already been documented by ancient Greeks and Egyptians as forms of “female hysteria”. Although Lindeman’s book shows that Sampson’s theory is highly flawed and much contested, his work became instantly canonized. As a result, Lindeman argues, the missing medical consensus together with Sampson’s unverified theory contributes to an understanding of endometriosis as a mere menstrual issue. This is of crucial consequence for how endo patients experience care because, first, the disease is now mainly framed within stereotypical conventions that either understand menstrual pain as natural or trivial, and second, endometriosis can come with a wide range of symptoms regardless of menstruation. Lindeman formulates her politics around the idea that viewing endometriosis merely as a menstrual issue not only fails to guarantee sufficient care but also worsens the suffering of patients.
Later, the author achieves to draw parallels between the disbelief or disregard of menstrual pain in gynecological care and the substantial numbers of misdiagnosis in particular of Black, racialized, trans and non-binary people with endometriosis. At this point, Lindeman’s book rightfully questions whether gynecology, as the primary field of medical engagement, can satisfy the needs of endometriosis patients if it does not start to strictly eliminate misogynist and racist ideas of the body.
In opposition to inadequate medical research and care on endometriosis, Lindeman’s work conceptualizes the disease through a lens of dismissed female pain, exacerbated through intersections with race, body size, disability, transness, or age, the pathologization of menstrual pain and the sexualization of the female body based on its reproductive function.
Lindeman paves her path into this intersectional feminist analysis with one fundamental acknowledgement that is substantial for endo patients to hear: being cared for by a system that eventually “doesn’t care about us” severely diminishes the life quality of the millions affected by endometriosis. Here, Lindeman argues that the desperation arising from the prolonged diagnosis of gendered chronic pain conditions, such as endometriosis, is not a failing of the patient but a symptom of systemic shortcomings in health care.
As a wider consequence, many endo sufferers turn to social media platforms in order to find support. While digital communities can offer a high amount of medical information, providing comfort and advice for those concerned, Lindeman likewise criticizes the emergence of a vast amount of advertisement that falsely prompts endometriosis patients to improve their condition through “healthy lifestyles”. As endometriosis has become increasingly visible, Lindeman concludes, the condition has attracted corporate interests that prioritize profit over actual improvements in health care for endo sufferers. In light of corporate advertisement, digital communities and online activism on endometriosis, Lindeman summarizes that endo sufferers’ engagement on social media demonstrates an incredible force in order to share frustration and connect over communal experiences as well as to “reach populations who’ve been traditionally excluded from healthcare systems and movements”. However, the prevalence of “misinformation, hyperbole, and clickbait” highlights the unfortunate consequences of mainstreaming the condition without fostering “effective, empathetic patient-doctor communication” that would bridge knowledge gaps and address uncertainties.
Lindeman’s groundbreaking book manages to explain the complexity of endometriosis without having to rely heavily on medical terminology. By doing so, her book is accessible and inclusive. Lindeman uses concepts like the “sick role” in order to explain how and why so many endo patients report to experience excessive self-doubt or feelings of “acting crazy” when presenting their pain to doctors. Research on the “sick role” suggests that societal and medical expectations of how patients should behave influence perception and treatment of diseases. With this concept in mind, Lindeman exposes that a general societal trivialization of female pain concerning the uterus or menstruation produces patients that “behave inappropriate” the moment they complain about pain deemed “normal” by doctors. While the condition is often regarded as invisible and usually not confirmed before surgery, Lindeman makes important interventions by uncovering the serious gaslighting frequently conducted by medical personnel. Furthermore, Lindeman continues her argument by demanding endometriosis to be considered a reproductive rights issue, exposing the fact that endo is treated more seriously when it affects fertility or a patient’s wish for children while others who seek pain relief instead of pregnancies are often refused the same medical treatment. Despite disturbing statistics that display endometriosis as an under-researched and under-financed disease, Lindeman’s book overall presents the audience with the sad but incontrovertible truth about medical and political practices which systematically disregard female pain.
Being an endo patient myself, I personally know how difficult it can be to comprehend contrasting medical information while also being punished for asking a simple question which, most of the time, no answer is given to: Why am I in pain? In medical research, origin and progression of endometriosis are still unknown and medical stage systems that aim to categorize the condition do not necessarily correspond to specific endo symptoms. For example, you could have your abdominal cavity full of endo tissue but only feel pain during menstruation, or you could have only a small amount of endo tissue at your bowel but experience pain throughout your menstrual cycle. Albeit the differences in symptoms might impede care, medicine takes years to acknowledge the pain of endo sufferers through diagnosis. However, even after the diagnosis doctors still treat the condition as a “mysterium” and mostly still cannot provide sufficient information or offer adequate treatment. Bearing this in mind, self-education remains a necessity for people living with endo and Bleed successfully manages to provide readers with much greater knowledge on this multifaceted disease, creating an impressively holistic picture that explains, at least to some extent, the historical continuities of mistreatment and suffering in relation to endometriosis.
Reading Lindeman’s book, it felt like just the right mixture of in-depth analyzed medical and cultural research combined with an autobiographical and patient-centered approach. The author curates the book through a focus on patients and their stories, following a simple but useful feminist approach: everyone knows their own body best. Lindeman switches from academic research to patients’ stories, blurring lines between the scientific and personal storytelling. With this, she creates an atmosphere that prioritizes the diverse experiences of endo patients over insufficient medical theorization of the disease. Lindeman offers us the sort of intersectional and multifaceted analysis one would wish for in medical research and care in the 21st century.
Bleed will make you understand better how discrimination and health care are intertwined; how frustrating it can be to work within and against an unfair system that increases the suffering of endo patients who are already trapped in a state of chronic pain. Lindeman’s analysis is much needed and stands out in terms of inclusivity, political demands and a historical analysis of injustice in endometriosis care. It was a relief to feel heard while reading this book and I can only recommend it to everyone, regardless of whether or not they suffer from endometriosis.
- Retrograde menstruation is a process in which menstrual blood flows backwards through the fallopian tubes into the pelvic cavity. “Retrograde menstruation has been defined as a universal, physiological phenomenon that occurs similarly in about 90% of menstruators during the reproductive period” (Viganò et al. 2024). Sampson proposed that the endometrium cells which flow backwards into the pelvic cavity as part of the retrograde menstruation process implant themselves and later become endometriosis. His theory today is often described to have offered unique insights, however substantial increase in technological development and research tools today still could not verify retrograde menstruation as the origin of endometriosis (Lindeman 2023; Seear 2014). ↩︎
References
Lindemans, T. (2023). Bleed: Destroying myths and misogyny in endometriosis care. ECW Press.
Seear, K. (2014). The makings of a modern epidemic: Endometriosis, gender, and politics (1st ed.). Routledge.
Viganò, P., Caprara, F., Giola, F., Di Stefano, G., Somigliana, E., & Vercellini, P. (2024). Is retrograde menstruation a universal, recurrent, physiological phenomenon? A systematic review of the evidence in humans and non-human primates. Human Reproduction Open, 2024(3). https://doi.org/10.1093/hropen/hoae045
World Health Organization (WHO). Endometriosis. Retrieved January 23, 2025, from https://www.who.int/news-room/fact-sheets/detail/endometriosis
Sophie Wagner is a graduate student at the Gender Studies Research Master program at Utrecht University with a background in Cultural Studies and Linguistics. She started learning about endometriosis years ago based on her own chronic pain experience. This led to her current research and advocacy work on the topic. Right now, her main focus relies on visual and literary narratives that counter hegemonic concepts of bodies suffering from endometriosis and other illnesses.
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