Endo Impacts People with Uteruses, Not Just Women

 


Central Consideration for this Article: How does perceiving endometriosis as a gendered illness further delay diagnosis and treatment for transgender and gender non-conforming patients? 

Endo Impacts People with Uteruses, Not Just Women – Implications of the Diagnosis and Treatment of Endometriosis as a Gendered Illness

Endometriosis is an illness that affects nearly one in ten people born with uteruses worldwide. It occurs when cells similar to the endometrial lining found inside the uterus grow outside the uterus, on the ovaries, fallopian tubes, and other nearby areas. As the cells grow, patients can experience a variety of symptoms including, but not limited to, severe abdominal pain, migraines, hot flashes, and fatigue [1]. This may also cause infertility [2]. Despite endometriosis impacting so many people, the average time for a patient to be diagnosed after the onset of symptoms is eight to ten years [3]. A patient may see at least eight different doctors before receiving the proper diagnosis [1]. Endometriosis as a gynecological condition is highly gendered, which means it is mainly associated with impacting patients of one sex. The experiences of transgender (trans) and gender non-conforming (GNC) endometriosis patients exposes the realities and problems of what it means to navigate a gendered disease when one does not identify with the gender binary (as a woman or man).

Despite endometriosis impacting so many people, the average time for a patient to be diagnosed after the onset of symptoms is eight to ten years

Crippling pain is often a major symptom of endometriosis. A patient recalled her pain as similar to “somebody cutting my hip off with a dull blade repeatedly” [4]. Endometriosis can cause pain so severe that it makes performing tasks as basic as walking and sitting difficult. Patients report that symptoms, such as excruciation pain, can hinder their education goals and participation in the workforce, as well as interfere in friendships and romantic relationships [1].  When reporting these symptoms to heath care providers (HCPs), patients may receive a variety of responses. There is a spectrum to how familiar HCPs are with the elusive nature of an endometriosis diagnosis. Since endometriosis is unidentifiable with standard diagnostic tests (such as MRIs, CAT scans, ultrasounds, endoscopies, colonoscopies, or blood work) HCPs may be hesitant in attending to a patient’s reported pain [4]. The symptoms are highly variable between patients, and many symptoms resemble those of other medical conditions.  Pain is often confused with symptoms of irritable bowel syndrome (IBS), which is a gastrointestinal issue. Therefore, patients may be referred to gastroenterologists, who prescribe treatments for IBS that are ineffective. The only way to diagnose endometriosis is to obtain a biopsy during surgery. In the HCP’s office, a personal testimony of medical complaints may be the only clue to an otherwise seemingly invisible disease [1].

Gender identity is one’s experience of gender. It is a personal conception of oneself as male or female (or sometimes both or neither). It makes up a major component of identity and influences the core ideas that a person holds true for themselves.  Gender also greatly informs and prescribes how people interact. Gender identity can correlate with assigned sex at birth, or can differ from it. The gender binary is the classification of sex and gender together as two distinct forms: feminine/female and masculine/male are separated. Cis-gender refers to people who demonstrate the gender binary. For example, someone who is cis-gender identifies as both feminine (gender) and female (sex) or both masculine (gender) and male (sex). Trans-gender means someone’s gender does not correspond with their birth sex in the eyes of the gender binary. GNC refers to if someone does not identify with a gender (feminine or masculine) [10]. The specific experiences of intersex individuals (who have anatomy not associated with that of female or male) are beyond the scope of this article.

Endometriosis is a gynecological condition and is therefore highly gendered.

In the first sentence of this article I describe how endometriosis impacts “people born with uteruses”.  I withheld using the word “women”, because as much as gynecological illnesses are gendered (which means associated with cis-female patients), such conditions can still impact trans or GNC patients. Endometriosis is a gynecological condition and is therefore highly gendered. So, what happens if the patient with endometriosis is not a cis-gender woman?  Trans and GNC patients describe an erasure from and invisibility in the endometriosis community that adds an extra challenge to seeking proper medical treatment and support systems. Many support circles for endometriosis patients involve members identifying as “endo sisters” with femininity at the forefront of their shared experiences and support. This is not the ideal support environment for patients who do not identify this way. Their experiences with endometriosis will not be intimately linked to experiences of femininity as it is for some cis-gender patients. Additionally, trans and gender-nonconforming patients with female anatomy are often left unstudied by the medical community. Therefore, minimal research has been done on the specific health care needs of the trans male population [10]. This translates into a lack of data on their experiences and diagnosis and treatment process, which is crucial to provide proper care. This is problematic because trans or GNC patients with female anatomy experience their own unique health challenges and hurdles in the diagnosis and treatment of endometriosis [8].

Non cis-gender patients may delay care because of fear of discrimination. Only as recently as 2013 did the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-5) eliminate the term “gender identity disorder” used since 1980 to describe people that do not identify with their anatomical sex from birth [9]. Considering this information, it may come as no surprise as to why trans and GNC patients may delay, or all together avoid, seeking medical attention. In fact, many people who identify as trans and GNC report not seeking out a HCP until absolutely necessary, such as in the case of a medical emergency. Experiencing non-inclusive healthcare decreases the help-seeking behaviors of trans patients. Research has shown that trans men and GNC patients are not receiving standard primary and gynecologic care [10]. As the average time for a patient to be diagnosed with endometriosis after the onset of symptoms is eight to ten years, the time to receive the proper diagnosis for this specific patient population can be substantially longer.

Gynecological care often necessitates that the status of one’s gender identity becomes known to the HCP. This is especially true for trans patients who have undergone a process of transition [11]. For example, some patients can be perceived as female-bodied without having to reveal their male gender identity when receiving health care services.  A study on trans patients seeking gynecological care revealed that these patients are more likely to experience discrimination than those who did not reveal their trans status [11]. In a national survey about trans discrimination in healthcare that included over GNC 6,400 respondents, researchers found that 28% of participants reported postponing needed medical care because of fear of discrimination. Of these participants, 19% reported being refused care because of their gender identity in the past, 28% reported being subjected to verbal harassment, and 2% reported being victims of physical violence in medical settings. Researchers also found that 50% of respondents indicated that they had to teach their medical provider about basic trans information. Another study found that trans patients were worried that if they shared their gender identity, service quality might be compromised by means of substandard care, problematic notes written by providers in their medical records, or discriminatory referrals to other medical providers on the basis of one’s trans identity. For example, although being recognized and addressed as the gender with which people who are trans identify is an essential issue for trans people, medical providers and clinic staff often persist in using incorrect pronouns (i.e., misgendering) or challenging the individual’s gender identity [11]. Even if a proper endometriosis diagnosis is made, there are still barriers for patients to receive the proper treatment.

In a national survey about trans discrimination in healthcare that included over GNC 6,400 respondents, researchers found that 28% of participants reported postponing needed medical care because of fear of discrimination.

Even if an HCP is sensitive to and respectful of the intricacies of the experiences and medical concerns of trans and GNC patients, concern over access to health care can still be a pertinent concern. Trans or GNC patients still face barriers to health care despite the Affordable Care Act necessitating that insurance companies cannot deny coverage based on gender or health history.  For certain services, health insurance companies have specific codes and need patients to identify with a gender. Often, patients are eligible only for services that go with that code.  For example, services such as mammograms and prostate exams are labeled with a corresponding “female” or “male.” A service can be denied if the gender registered with one’s health insurance does not match with that of a service.  This especially poses a dilemma to a patients who are trans. Someone born with a uterus may not identify as female and someone with a prostate may not identify as male.

One patient, transitioning from female to male, changed all his legal identification to male, but kept his health insurance ID as female, because he had not yet gotten a hysterectomy.  He did not want to fight his insurer over gynecological services. Advocates say their goal is to add new categories, such as “transgender man,” or “transgender woman,” onto insurance application forms [9]. Such inaccessibility to care can further lengthen the already drawn-out process of receiving an endometriosis diagnosis. It can also prevent patients from receiving proper treatment, such as for pain management. Additionally, because of discrimination in society, and specifically within the workplace, trans individuals unproportionally may face unemployment and lack of health insurance, which limits their access to health care [10]. Such barriers place extra obstacles to receiving an endometriosis diagnosis and to accessing and pursuing treatment of endometriosis symptoms.

The way that people conceptualize their bodies is complex. For some patients, the body is equal to the self (‘I’m sick’). For others, the body is depicted as foreign and a burden to the self. Nonetheless, for each of these patients, bodies are a fundamental source of self, puzzlement, understanding, critique, and more … all at once [5].  Endometriosis, as a gendered illness, highlights the role that gender identity plays in accessing health care. This is especially pertinent to patients who do not fit into the gender binary as they navigate the diagnosis and treatment processes of an illness that already has a drawn-out process of diagnosis and treatment.

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Citations:
  1. Cohn, Shannon. Endo What? Documentary Film, 2015.
  2. Buck Louis, Germaine M. “Women’s Reproductive History Before the Diagnosis.of Incident Endometriosis” in Journal of Women’s Health, 1021 – 1029.  Larchmont, N.Y.,.2016.
  3. Riazi, Hedyeh. “Clinical diagnosis of pelvic endometriosis: a scoping review” in.BMC Women’s Health, 1-12. 2015.
  4. Ghazi, Negar. “HNMR- based metabolomics approaches as non-invasive tools for.diagnosis of endometriosis” in International Journal of Reproductive Biomedicine, 1-8. 2016.
  5. Whelan, Emma “No One Agrees Except for Those of Us Who Have It: Endometriosis Patients as an Epistemological Community” in Journal of Sociology of Health and Illness, 957 – 982. 2007.
  6. Moradi, Maryam “Impact of Endometriosis on Women’s Lives: A Qualitative Study” in BMC Women’s Health. 2014.
  7. Chesak, Jennifer “Chronic Pain Isn’t a Side Effect We Should Have to “Just Live With” in HealthLife. 2017.
  8. Yergens, Ashley. “Endometriosis and Gender Nonconformity” in Huff Post Blog. 2017.
  9. Gillespie, Lisa. “Transgender People Still Denied Health Services Despite Affordable Care Act” in PBS News Hour. 2015.
  10. Dutton, Lauren “Gynecological Care of the Female-to-Male Transgender Man” in J Midwifery Womens Health, 331-337. 2008.
  11. Seelman, Kristie. “Transgender Noninclusive Healthcare and Delaying Care Because of Fear Connections to General Health and Mental Health Among Transgender Adults” in Transgend Health, 17 – 28. 2017.
  12. Fox, Luke. “Endometriosis and Being a Trans Person: Beyond Gendered Reproductive Health” in Hormones Matter. 2014.
  13. Zheng, Juan “Activin A Stimulates Aromatase via the ALK4-Smad Pathway in Endometriosis” in BioMed Research International, 1 – 10.
  14. Liu, Ji-Long.  “A PubMed-wide study of endometriosis” in Genomics, 151 – 157.  San Diego, 2016.
  15. Riazi, Hedyeh. “Perception and Experiences of Patients with Endometriosis about Pain: A Qualitative Study” in Journal of Mazandaran /University Medical Science, 57 – 69. 2015.
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