Endometriosis: The One in Ten
/It’s March, which means it is officially Endometriosis Awareness Month! Endometriosis Awareness Month takes place across the globe every March, with a mission to raise the profile of endometriosis. I know what you’re probably thinking – Endometri-What?
Let’s break it down: Endometriosis is a painful, chronic inflammatory condition, which is characterised by the presence of tissue similar to the lining of the uterus growing outside of the uterus, often on the pelvic organs and tissues (Carbone et al., 2021; O’Hara et al., 2021). Endometriosis is commonly characterized by life-altering pain (Culley et al., 2013). Endometriosis has been associated with a wide variety of pain symptoms, including severe pelvic pain, pain with menstruation, pain with vaginal penetration during sexual activity, pain with urination, pain with defecation, pain with ovulation, and lower back pain (Kennedy et al., 2005; van Poll et al., 2020). Other symptoms of endometriosis may include prolonged menstrual bleeding, gastrointestinal symptoms (e.g., bloating, nausea, diarrhea), subfertility (reduced fertility with prolonged period of unwanted non-conception) or infertility (inability to conceive after a year or longer of unprotected sex), and chronic fatigue (Dunselman et al., 2014; Ek et al., 2015; Kennedy et al., 2005).
So, how many people ‘have’ endometriosis? Prevalence data on endometriosis are limited due to many factors, including needing to have tissue surgically removed and sent to the lab for special analyses, the existence of microscopic (tiny) endometriotic tissues that are rarely diagnosed, and the barriers faced by those looking for a diagnosis (Carbone et al., 2021). With these limitations in mind, endometriosis affects approximately 10% of women of reproductive age (1 in 10), and up to 50% of women with chronic pelvic pain (CPP) or fertility problems; global estimates suggest a prevalence of approximately 200 million women (Adamson et al., 2010; As-Sanie et al., 2019; Dunselman et al., 2014).
I just listed statistics for women, so that must be the Endometri-Who, right? Nope! While most individuals diagnosed with endometriosis are adult women, there is evidence of endometriosis in cisgender males (Makiyan, 2017; Rei et al., 2018), the human fetus (Schuster & Mackeen, 2015; Signorile et al., 2010, 2012), gender diverse people (Cook & Hopton, 2017; Yergens, 2016), and females (pre- and post-puberty) who have never menstruated (Gogacz et al., 2012; Houston, 1984; Marsh & Laufer, 2005; Suginami, 1991).
You’re probably thinking, if there is evidence of endometriosis in individuals other than adult women, why do we only have prevalence rates for this subgroup? The answer is two-fold: first, not much is known about the pathophysiological mechanisms which cause or put individuals at risk for developing endometriosis. Many theories have been proposed, however, many hypotheses regarding how endometriosis develops are highly debated (Guidone, 2020). This leads me to my next point: In the past, endometriosis was known as the “career woman’s disease” based on the assumption that the disease predominantly affected childless, white, affluent, educated women (Carpan, 2003; Nezhat et al., 2012). This assumption still holds today despite increasing evidence of the existence of endometriosis in people of various genders, ages, menstrual status, and social locations.
So, Endometri-Why?
Traditionally, the field of medicine tended to center men as the gender-neutral ‘standard’, while women were viewed as gender specific. Thus, (white) male bodies were viewed as the norm, and all other bodies were pathologized. The field of medicine also tended to view bodies through the lens of essentialism (that certain attributes—an “essence”—characterize people and objects); from this perspective, people who menstruated were automatically defined as ‘women’ and were assigned a primary function of reproduction. This, in turn, has caused medical professionals to attribute reproductive bodies with endometriosis, and only offer treatment options that revolve around the reproductive system, neglecting other areas of impairment. In a nutshell, sexism distorted scientific knowledge (Guidone, 2020). However, issues such as menstruation, pregnancy, childbirth, and menopause are not inherent, nor confined, to women—individuals who are not women can and do experience these processes. Hence, using the term ‘gendered’ to indicate that endometriosis can occur in all genders, rather than ‘gynecological’ or ‘reproductive’ to describe endometriosis is important—endometriosis is a gendered, whole-body, condition.
Now that you know the Endometri-What, the Endometri-Who, and the Endometri-Why, let’s move onto the Endometri-How.
Endometri-How do I get a Diagnosis?
Unfortunately, receiving a diagnosis of endometriosis can be a lengthy and non-linear process. The average length of time worldwide from the onset of symptoms to a diagnosis of endometriosis is estimated to be around 7.5 years (Bullo, 2020). Delayed diagnosis is a huge source of stress for people with endometriosis, and can result in large psychological impacts (Guidone, 2020). But, why is there such a long delay?
There are many reasons for diagnostic delays; for example, the invisibility of endometriosis requires invasive surgical procedures such as laparoscopic surgery, rather than identification in a more straightforward, non-invasive fashion (Hsu et al., 2010). Moreover, worldwide, people with minimal access to resources, or limited health coverage, may experience significant barriers to diagnosis (Cromeens et al., 2021). Furthermore, misinformation about endometriosis continues to be pervasive, permeating the healthcare and public sectors (Guidone, 2020). For example, in the healthcare sector, healthcare practitioners frequently dismiss and normalize women’s pain as part of their menstrual cycles (Bullo, 2018). In addition, a general lack of public education regarding pelvic pain persists (Guidone, 2020). For example, women with endometriosis have delayed seeking help for their symptoms due to the belief that their symptoms are a part of ‘normal’ menstruation experiences, with the assumption that clinicians may dismiss their pain as ‘all in their heads’ (Bloski & Pierson, 2008). Thus, this dismissal and normalization of pain may prolong referrals for diagnostic treatments (Bullo, 2020).
Transgender and gender non-conforming individuals may face additional barriers. On top of the experience of being misgendered and discriminated against, trans men and nonbinary individuals often face ignorance and hostility from clinicians (Jones, 2020). In addition, lesbian health has been historically subsumed under heterosexual women’s health (LaVaccare et al., 2018). Very few self-help resources for endometriosis mention LGBTQ+ issues; when they do, inclusion is framed around barriers to conceiving. Indeed, lesbians postpone accessing gynecologic care in order to avoid heterosexist microaggressions, such as pressuring them about birth control, or asking about sexual practices in heteronormative ways (Sabin et al., 2015). For example, the standard yearly gynecological exam is derived from premarital examinations done to ‘prepare’ (heterosexual) women for penetrative sex with their spouses. Given the fact that pain with sex, clinically stipulated as “recurrent or persistent genital pain upon penile penetration” (Olive, 2005, p. 135) and infertility are the hallmark symptoms of the endometriosis, lesbian women are likely underdiagnosed. Thus, due to historical biases and an abundance of misinformation in the medical sector, many individuals who may have endometriosis are not receiving appropriate medical care.
The spread of misinformation about endometriosis has recently made it into the media-sphere as well; in season 18, episode 10 of Grey’s Anatomy (aired March 3, 2022), many inaccuracies about endometriosis were reported. For example, in the show, endometriosis was reported to be composed of cells that line the inside of the uterus and it was also reported that it was treatable. Unfortunately, endometriosis is an incurable disease, and while there is a ‘gold standard treatment’, it’s notoriously hard to access.
What is this ‘gold standard treatment’, you ask?
Being that there is no known cure for endometriosis, treatment commonly consists of managing chronic pain (Arafah et al., 2021). When pain medication and/or hormonal therapy are not producing sufficient relief for individuals with endometriosis, laparoscopic excision surgery, the gold standard, becomes an option (National Health Service, 2017). However, a recent meta-analysis found no significant difference in pain relief in women who underwent surgery or medical treatment in the form of analgesics and/or hormones (Chaichian et al., 2017). Thus, further research is needed to understand the etiology, presentation, and treatment of endometriosis (Arafah et al., 2021).
The Endo-Effects
Although further research is needed, we do know that endometriosis and the associated symptoms have a substantially negative social and psychological impact (Missmer et al., 2021). Affected aspects of life include self-esteem, affective and emotional stability, private and professional relationships, sexuality, and the social and working functioning of affected people. The large burden of the symptoms causes distress and a substantial lowering of quality of life, and lowering of sexual quality of life (Friggi Sebe Petrelluzzi et al., 2012). Moreover, gender norms categorizing who does and doesn’t get or have endometriosis impedes abundant opportunities to detect endometriosis in individuals who do not menstruate (Guidone, 2020). Studying individuals who do not menstruate, as well as sexual and gender/sex minorities, and emphasizing endometriosis as a whole-body condition, could radically transform and improve medical knowledge about endometriosis.
What Can I Do?
Now that you know more about this condition, you may be asking, what can I do to help? First, you can help spread (accurate) information, and increase awareness about this condition. Second, you can advocate for others in your life who may have endometriosis—remember, 1 in 10 – which is most likely an underestimate! Third, if you have endometriosis, you can participate in the study (click HERE and if you decide to not participate, please share it; the study examines resilience and vulnerability factors associated with sexual outcomes in individuals who have been diagnosed with, or believe they may have, endometriosis. At SexLab, we are passionate about raising awareness and bettering the quality of life of those who are affected by endometriosis.
One lab, one blog, one month, one in ten.
We will fight with you, Endo Warriors.
Sam Levang (she, her, hers)
M.Sc. Student, Clinical Psychology, Sexual Health Research Lab, Queen's University
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