I have undergone three separate abdominal surgeries after six years of awaiting treatment for chronic pelvic pain. In the first, I was diagnosed with endometriosis; in the following two I had an organ removed and large masses of my pelvic cavity excised and biopsied for endometrial growth. It was not until the third surgery that the extent of my endometriosis was discovered after being doubted by the previous surgeon and a multitude of doctors who attributed my symptoms to dysmenorrhea, sending me home with a pack of paracetamol. For the last six and a half years, I had been searching for help from medical professionals only to be routinely let down. I felt isolated and alone, so I sought out an online support group and from there discovered the vast and colourful endometriosis community and witnessed their communal nature of sharing experiences and resources. I have absorbed much knowledge and wisdom from the material circulating within the community; material that is omitted in medical research due to its emotionally charged nature. As one of the many who relied on these vernacular materials for survival, I believe they deserve to be studied. This dissertation is dedicated to the endometriosis community.
The experience of suffering from endometriosis relies on visual material because of its invisibility. Endometriosis shows little external measurable evidence with the exception of extreme bloating or “endo belly”. Post-surgery, that evidence includes scars. But as bloatedness can be fleeting and scars concealed, endometriosis sufferers tackle the daily challenge of proving their pain to skeptics. This is amplified by the history of accused hysteria behind gynecological illness, and this history has left scars on modern perception of AFAB (Assigned Female At Birth) people’s pain. So, not only must endometriosis patients fight for treatment and understanding without visual measurable evidence, they must do so whilst combatting the historical trope of female hysteria.
In a poll of 104 participants, I asked how they came to learn about endometriosis: from a medical or academic source such as a doctor or a health course in school, or from any other source such as media or word of mouth. Out of responses from participants who varied widely in terms of age, class, and nationality, 97 responded that they had learned from a non-medical or academic source while only 7 said they had learned about endometriosis from such a source. I then invited the 97 responders to state their specific sources. Most replied saying they had come across endometriosis by word of mouth from a family member or friend; the next most common source was social media content; the next independent research from sufferers after seeking help from doctors with no success; and finally, from popular media such as books and films. This data sheds light on how significant these non-academic sources are or become once medical sources provide little to no help in treating a societally gendered disease. In a report by the All Party Parliamentary Group on Endometriosis, a patient is quoted as saying “There was no mention of endometriosis despite me saying I do not have regular periods but am still in agony all the time. Endometriosis was only explored when I researched my symptoms online and found a support group.” Being forced to resort to non-traditional sources stimulates a marginalised wealth of information which self-sustains by feeding on personal first-hand experiences. Artistic representation is found at the forefront in the endometriosis community due to its ability to communicate less tangible but no less crucial knowledge of the endometriosis experience, knowledge that has been left out of the medical dogma entirely: emotional tolls, visceral pain descriptions, and impacts on daily life.
Endometriosis is a disease in which tissue similar to that of the uterine lining is found elsewhere in the body. This tissue cycles in the same way as the uterine lining, shedding and bleeding monthly and causing extreme pain and inflammation. Although it is thought to affect 10% of people with a uterus, there is a lack of research and funding dedicated to understanding and relieving endometriosis. Treatment of endometriosis is highly inaccessible for a number of reasons: firstly, the deficiency of trained gynecological surgeons or general gynecologists with the knowledge of symptoms needed to give the patient appropriate referrals; secondly, the mistrust of AFAB pain by medical professionals due largely to the history of “hysteria”; and thirdly, the failure of education to enable AFAB people to validate their own pain and seek help.
Currently, the most common method of measuring pain is the 10-point pain scale which was developed in the 1970s. This scale includes correlating symbolic facial expressions as well as a colour scale from green (no pain or mild) to red (extreme pain). This employment of such a grossly simplistic visual tool in diagnosing pain has been criticised in contemporary research. A call for a multifaceted approach to measuring pain has given rise to new techniques such as the McGill Pain Questionnaire (MPQ), published as early as 1975; and yet little progress has been made since then. This early initiative demonstrates some understanding within the medical field that sensational and emotional sites of diseases are significant and accessing them is crucial for treatment. Yet, this understanding has never progressed into actions. Rather, patients of invisible chronic illnesses such as endometriosis are dealt treatment according to entirely impersonal and unemotional methods of symptom measurement, such as asking to identify one’s pain on a 1-10 scale. In many cases, inability to take the emotional site of endometriosis within a patient’s experience into account can lead to misdiagnosis (the most common being IBS or simply crediting symptoms to anxiety) or no diagnosis at all. For this reason, among others, it takes an average of eight years to achieve proper diagnosis of endometriosis in the U.K. As endometriosis can only be diagnosed by laparoscopy and, depending on the surgeon, by either visual confirmation or biopsy, diagnosis is often delayed due to the invasiveness and the high expense. A recent report by Chronic Illness Inclusion, submitted to the Department of Health and Social Care’s Inquiry into Women’s Health and Wellbeing, found that their results “paint a shocking picture of stigma, neglect, and woefully inadequate health and social care provision for disabled women with ELCI [energy limiting chronic illnesses] and chronic pain,” with endometriosis identified as one of the conditions in need of treatment reform. The study illumates the extent of which the trope of the “hysterical woman” influences patients’ treatment and wait times:
This scapegoating of physical pain as psychological and the subsequent dismissal of symptoms stems from a history of AFAB mistrust by medical professionals. AFAB complaints of physical symptoms have been and continue to be seen as exaggerated or connected to psychological disturbances. In many instances psychological trauma can indeed manifest itself as a physical ailment, as explored by Sigmund Freud and Josef Breuer in Studies on Hysteria. This research continues to be cited as pioneering text advocating for the validation of physical symptoms of mental trauma. However, it has many faults: the physical symptoms discussed are attributed to hysteria alone; although the text does not identify hysteria as a condition exclusive to women, it only includes AFAB case studies; and further, it was commonly used within erroneous contexts to identify diseases of the body such as endometriosis as, instead, the effect of a psychological cause. According to research conducted by Camran Nazhat, M.D. and associates, “we were able to uncover substantial, if not irrefutable, evidence that hysteria, the now discredited mystery disorder presumed for centuries to be psychological in origin, was most likely endometriosis in the majority of cases.” As long as a patient is denied diagnosis and treatment due to distrust of their word based solely on sex, their pain will remain invisible and immeasurable as it did for so many in history.
Imagine how that so-common story of eight painful, undiagnosed years may change if medical professionals took visual material into account. Three examples of photographic practices circulate throughout the online endometriosis community: firstly, selfies. Hospital selfies, mirror selfies showing off bloated “endo bellies”, and photographs of scarred abdomens are commonly shared in safe spaces such as online support groups as a call for empathy and community. They illustrate an intangible site of pain and this site, while integral in determining proper treatment, is rarely accessed by medical professionals. Secondly, expressive language and metaphors can uncover wealths of tangible medical knowledge about the physical sites of endometriosis in the body, as well as the emotional site. Colourful adjectives such as “stabbing” and “shooting” give clues to lesion positions in relation to nerves and organs while accompanying metaphors can open the caregiver’s eyes to the sensational experience of this pain, such as the common “battery acid” description. Thirdly, the wide and rapid circulation of easily absorbed media such as informational graphics, illustrations, and memes aid the spread of awareness whilst also contextualising the word “endometriosis” within the life of the content sharer. The viewer of these pieces of media locates the emotional site of endometriosis within the sharer’s experience, promoting empathy and understanding.
I argue that to fully understand a patient’s experience, one must access the three “sites” of endometriosis. Firstly, one must visit the impersonal, clinical site of the idea of the disease itself, which manifests from the word “endometriosis” and its associations. Secondly, discussion of the physical site of endometriosis, the site of the lesions within the body, is crucial. And finally, the emotional site must be identified; the site which, catalysed by the first two sites, embodies the patient’s experience with the disease.
These methods of mapping endometriosis pain supplement patients with their own communal transferring of knowledge when the medical field fails them. Many patients have claimed to know more than their doctors and specialists about their condition, even witnessing medical professionals Googling for answers in the exam room. The physical and mental toll of endometriosis motivates their desperation to find answers and management strategies, as patients have no other choice than to suffer. Thus, the most accurate source of information and wisdom is in the community itself and the experiences of sufferers. Social media support and activist groups have recognised and activated this self-fueling machine of empowering knowledge and communal support, allowing for real sufferers to use the best tools they see fit to accurately describe their journey. Many of these tools–first-hand narratives, photographs, art, comedy–are dismissed in the doctor’s office as they offer no valid empirical data. This is a grave oversight when regarding the future of medical knowledge as connected to the sensational and mental experiences of the patient. When that emotional knowledge is omitted, the understanding of the impact upon the standard of living of endometriosis patients is lost. I am not advocating for the replacement of scientific and empirical data with emotional knowledge, as relying on emotional knowledge alone holds its own dangers. I am advocating for a holistic approach which includes scientific and emotional evidence in order to paint a well-rounded picture of the patient’s specific case. The omission of emotional accounts and data is enforced by a legacy of medical misogyny which dismisses pain relating to female reproductive organs as “normal” under the assumption that women must simply deal with it, and to object to this fate is to sentence one’s self to the title of “hysterical woman.”
Included below are some of my attempts in tapping and expressing these three sites of my endometriosis experience.