According to As-Sanie et al (2019), women with endometriosis make an average of seven visits to their primary care provider before receiving a specialist referral, three fourths are misdiagnosed, and two thirds of primary care providers are not comfortable in diagnosing and treating patients with endometriosis symptoms. Similar statistics can be found for other women’s sexual health issues in numerous other studies and reviews. Contemporary studies in cultural and medical anthropology, public health, and psychology highlight the tremendous need for better education in the medical industry and general population regarding women’s sexual health, the dire need for more and better treatment options, and the need for greater understanding and compassion regarding these issues.
Personally, I have been diagnosed with several women’s health issues. Over the past 15 years, my conditions have been dismissed, overlooked and misdiagnosed by doctors and physical therapists who were inexperienced or unknowledgeable in women’s sexual health despite having specialties in gynecology, urology, and pelvic floor muscles and nerves.
While similar in thought, biological anthropologists look at behavior as an adaptation that evolved through time. However, medical anthropologists look at how cultures adapted to stave off certain diseases. In medical anthropology, the ethnomedical system refers to a “basic set of underlying beliefs in response to questions about health causation, what it means to be healthy, how we know when someone is not healthy, what are illnesses or diseases that represent not being healthy, and how does one remedy a disease?” (Edberg ,2020, p.75). Ultimately, this system shows that the “healing behavior” of a group and their individual behaviors dictate whether or not someone goes to a doctor, healer, or any other qualified medical personnel for help (p.75).
Anthropological knowledge has also aided public health knowledge. Public health educators address local beliefs, help patients and providers adopt different styles of communication, monitor the response of communities to health messages over time, and expose and remove possible health stigmas (Miller 113). In this blog post, I will address the symptoms and golden standard for diagnosing endometriosis, the effects of dehumanization that medical doctors and patients suffer from, and also the feelings of isolation and guilt caused by this debilitating disease.
Is Endometriosis a Disease?
In ethnomedicine, disease is termed as a “biological health problem that is objective, universal, such as a bacterial or viral infection or a broken arm” (96). According to Nature.com, Australian data has shown that chronic pain has been one of the top five health concerns and affects well-being and emotional health.
Endometriosis is a disease. One of the most commonly misdiagnosed female diseases that is most often not taken seriously. The endometrium is the most superficial lining of the uterus that sheds every month to produce what we call menstruation or getting one’s period. Areas of endometrial tissue are found as implants outside of the usual locations. Symptoms that occur with endometriosis include: Dysmenorrhea (painful cramps), nausea, gastrointestinal distress, infertility, vomiting, burning with urination, lower abdominal pain, lower back pain, hip pain, rectal pressure, diarrhea, and also pudendal nerve and sciatic nerve dysfunction (Graffia 2019). Pain from tampon usage can also be quite common and can manifest as other painful conditions surrounding the genital area known as vulvodynia, pudendal neuralgia, and provoked/unprovoked congenital neuroproliferative or hormonally-mediated vestibulodynia. The pain can be so intense that women may pass out or be debilitated until the pain subsides. Commonly, endometriosis pain starts before a woman’s cycle begins, even weeks before, and continues even after the cycle has ended.
How Endometriosis is Commonly Diagnosed:
In “Endometriosis: The Psychosocial and Emotional Lived Experience of College-Aged Women” (2019), the author states that there are several ways to diagnose endometriosis but the gold standard is through a laparoscopy. A good provider will want a full history and a physical examination which includes pressing on the tender nodules located in the posterior vaginal fornix, uterine motion tenderness, as well as tender adnexal masses (located close to the uterus) (Graffia 2019).
However, most providers know that even with the physical exam, there can still be endometriosis present even if there are no tender nodules. After the exam, most providers will prescribe either a transvaginal ultrasound or pelvic MRI with contrast, but even those tests can miss endometriosis. The for sure guaranteed way to get a good diagnosis is to have a laparoscopy with a trained specialist endometriosis specialist who we call NOOK doctors in the United States. NOOK doctors have met a criteria of completing over 1500 surgeries, sometimes with the DaVinci Machine (robotic).
Dehumanization and Patient Care: The Doctor’s Point of View
It is important to note why women may receive worse care than others. In the 1980s, women with pelvic pain sought gynecological counseling as they suffered from what was believed to be “ psychosomatic pain,” with no physical evidence of lesions (Levitan, Eibschitz, de Vries, Hakim, & Sharf, 1985).
With medical providers who appear to care more for the patients, their treatments are much more highly respected and sought out. One obstetric mentions that as they went through medical school, the whole process of their education made them feel inhuman. The rigorous structure makes them feel inhuman. One student says, that “by the time you get to residency, you end up not caring about anything beyond the latest techniques you can master and how sophisticated the tests are that you can perform” (1987,299). While this quote is from the 1980s, people that still experience medical school describe it as brutal.
In a study in 1987, it was revealed that Western Obstetrics and Gynecology only appeared to care about the delivery of the baby and not the quality of the mother’s experience. One obstetrician said, “I couldn’t sit over there with a woman in labor with my hand on her belly, and still see 20 patients a day” (1987, p.291).
In contemporary times, some doctors see as many as 40-50 patients a day, and on average have a maximum of 10-15 minutes per patient, which includes understanding the patient and the issue, making a diagnosis, performing an exam, and recommending further treatment and medication. While more providers are becoming interested in ensuring their patients have better care and more time to ask questions, most providers still do not go out of their way to ensure that the patient has a full understanding of the risks and benefits of the recommended treatments explained.
Endometriosis and Institutional Violence: Stigma, and Submission in Hospital Settings
It has been shown that women with endometriosis feel a large amount of guilt for being unable to contribute to their daily tasks such as childcare, work, and errands as they suffer from pain.
In Cultural Anthropology in a Globalizing World, Barbara Miller highlights the term somatization, where the body absorbs” social stress and manifests systems of suffering” (Miller 97).
In The Experience of Illness of Women with Endometriosis Narratives About Institutional Violence by Paulo Alexander de Souza et al (2017), the authors reveal the sociocultural issues revolving around guilt, gender/institutional violence as well as issues with physician tensions. Throughout this paper, the difficulty and access to receiving care becomes revealed by the authors. The authors aim to discuss the experiences that women go through as they resort to receiving health care services (3024).
In the study, women submitted themselves to care practices that were not necessarily deemed as comfortable or utilizing the best practices. In the case of violence in certain hospitals, the rationale of opposition occurs on the “dominant” and much stronger side of science/health (regardless of gender), while on the other side, women are weaker, submissive and dominated (3024).
According to the authors, a dichotomy exists between coexisting with an unresolved tension between exaltation or disqualifications, and also unassured access to treatment. One woman describes her experience as: “There’s a great expectation when you schedule an appointment. You cannot sleep, and when you are in the consultation, you stand before a cold person. I came home, kind of desolate because he (the doctor) did not want to examine me (3026). Ultimately, in these hospital and medical spaces, institutional violence, and discrimination occur towards women. Violence is termed as a way to reduce women to “defective machines.”
In Practices and Attitudes Concerning Endometriosis Among Nurses Specializing in Gynecology (Bach et al, 2016), the authors suggest that culture influences the nurses’ attitudes towards patients suffering from endometriosis. The nurses’ professional understanding of endometriosis was less influenced by ethics and values but by their own experiences with illness and disease perceptions.
One nurse said, “It’s really hard, I think, with endometriosis . . . when you only know a little about it. The more I get to know about it . . . the greater my understanding gets, that it’s something physical that makes it mentally difficult. Initially, I thought the opposite..” (Bach et al 2016:5).
Alternatively, one wrote that, “when you meet an acute patient who arrives in pain in the middle of the night, whether they have endometriosis I couldn’t say, psychosocial and somatic pain, you just can’t find any obvious reason for their pain” (2016:5). This quote reveals that pain is still dismissed and found to be less important among even nurses who are responsible for providing care. Overall, the authors wish for the nurses to implement more opportunities for self-reflection and to train with more holistic approaches.
Endometriosis and Guilt
Guilt can manifest in many ways while suffering from endometriosis. Women who take off work, nap or rest too much, skip class or cancel social gatherings feel as if their pain is controlling their day, and feel guilty for not being able to participate in their daily life. Certain women often describing their days as being curled up with a heating pad, taking over the maximum in NSAIDS and/or tylenol, and drinking constant peppermint or ginger tea to control their pain. Often, women will feel sad about not being able to take better care of their children or provide the physical and emotional intimacy that they feel their partner or spouse needs. With the rise in Covid-19 cases in the last year, women expressed their guilt in taking up hospital beds or scheduling surgeries despite the amount of pain they have been in.
Endometriosis and Isolation
The disease also has isolating effects. Most women feel as if their friends, family, and even significant others do not support them in their health journey. There are many commons myths that people with endometriosis will say their medical providers, friends, and family have said to them at one point, such as “that it is normal to suffer in pain, the pain is in your head, just take ibuprofen or “that the pain can’t be that bad.” Female pain being dismissed has such isolating effects for suffers of this disease. Often times, women feel as if they do not have the time to pursue other friendships or relationships due to fear of being dismissed or not having time to do so. I
Significance in Anthropology
While very similar in theory and thought, anthropologists look at what it means to be human, and how cultures are structured and relate to each, and how behaviors adapt to different institutions. Public health and anthropology are very closely related to each other, and go hand in hand.
More specifically, medical anthropology offers a way to understand behavior and culture, and how individuals, groups and societies act in a certain setting. What does it mean for someone to be endometriosis free? What are the symptoms that women associate with being endometriosis-ridden? Why do so many women still feel as if their doctors are dismissing and ignoring their pain?
According to Susan Bordo in Food and Culture (1991), our bodies, no less than anything else that is human, are constituted by culture” (Bordo, p. 165). As women become more independent and assert themselves politically and socially in contemporary times, more research has shown how individuals feel about themselves and the medical industry as they deal with symptoms of pelvic pain and endometriosis. Stigmas still exist surrounding menstrual pain and discussion of periods and blood. As a current sufferer from pelvic pain, there is the hope that women’s health will continue to progress.
Further Resources for Sufferers
As a side note and as a pelvic pain sufferer, I would like to include a good resource for anyone that may be experiencing pain. Nancy’s Nook Endometriosis Education is a research-based group on Facebook created by the former nurse Nancy Peterson. She compiled all of her best endometriosis information and all of the doctors who are best able to perform laparoscopy and excision. As mentioned above, doctors who meet the NOOK criteria have performed over 1500+ surgeries and are skilled at removing and discovering endometriosis in different locations all over the body. It is recommended one find a more experienced and qualified doctor to perform this surgery as they are less likely to miss endometriosis and are able to resect it well.
References:
As-Sanie et al. (2019). Assessing research gaps and unmet needs in endometriosis. Am J Obstet Gynecol, 221(2), 86-94.
Bach, A. M., Risoer, M. B., Forman, A., & Seibaek, L. (2016). Practices and Attitudes Concerning Endometriosis Among Nurses Specializing in Gynecology. Global Qualitative Nursing Research. https://doi.org/10.1177/2333393616651351
Bordo, Susan. “Anorexia Nervosa: Psychopathology as the Crystallization of Culture.” In Food and Culture: A Reader. Edited by Carole Counihan and Penny Van Esterik. 2nd ed. Routledge, 1997 (1991).
Edberg, Mark Cameron. 2020. Essentials of health behavior: social and behavioral theory in public health.
Graffia, Brianna, “Endometriosis: The Psychosocial and Emotional Lived Experience of College-Aged Women” (2019). Syracuse University Honors Program Capstone Projects. 1099.
https://surface.syr.edu/honors_capstone/1099
Jean Hailes for Women’s Health. Women’s Health Survey 2016: Understanding Health Information Needs and Health Behaviours of Women in Australia, https://assets.jeanhailes.org.au/Research/Womens-Health-Survey-Report-2016.pdf (2016).
Levitan, Z., Eibschitz, I., de Vries, K., Hakim, M., & Sharf, M. (1985). The value of laparoscopy in women with chronic pelvic pain and a “normal pelvis.” International Journal of Gynecology & Obstetrics, 23, 71–74. doi:10.1016/0020-7292(85)90016-5
Miller, B. D. (2017). Cultural anthropology in a globalizing world. Boston: Pearson.
São Bento PAS, Moreira MCN. The experience of illness of women with endometriosis: narratives about institutional violence. Cien Saude Colet. 2017 Sep;22(9):3023-3032. Portuguese, English. doi: 10.1590/1413-81232017229.03472017. PMID: 28954153.
