{"paper_id":"a448a456-d211-4247-8edb-0dd088030c7b","body_text":"269\nCHAPTER 22\nThe Womb Wanders Not: Enhancing \nEndometriosis Education in a Culture \nof Menstrual Misinformation\nHeather C. Guidone\nThe  e ndomeTriosis  e nigma\nDescribed as “a riddle wrapped in a mystery inside an enigma” (Ballweg \n1995, 275; Wilson 1987, 1), endometriosis is defined by the presence of \nendometrial-like tissue found in the extra-uterine environment (Johnson  \nand Hummelshoj for the World Endometriosis Society Montpellier \nConsortium 2013). The disease elicits a sustained inflammatory response \naccompanied by angiogenesis, adhesions, fibrosis, scarring, and neuronal \n infiltration (Giudice 2010). The gold standard for confirmation of diagnosis \nis laparoscopy (D’Hooghe et al. 2019).\nCharacterized by marked distortion of pelvic anatomy (Kennedy \net al. 2005), development of endometriomas and high association with \n© The Author(s) 2020 \nC. Bobel et al. (eds.), The Palgrave Handbook of Critical Menstruation  \nStudies, https://doi.org/10.1007/978-981-15-0614-7_22\nThe vernacular of endometriosis is rooted in classic scholarship and the topic of \nmenstruation itself is often cited as an example of biological reductionism: the \nmedicalization of women and standardization of bodies (Rodríguez and Gallardo \n2017). Hence, the author acknowledges that the terms “women” and “women’s \nhealth” are enforcers of hetero-cisnormativity, gender binarism and gender \nessentialism. For the purposes of this chapter, incorporation of such terms is \nintended only as a theoretical framework, inclusive of all bodies who struggle with \nendometriosis and have suffered from the bias, negligence, misdiagnosis and medical \nmisogyny which so often characterize the disease; such use is not intended to trivialize, \nequate or otherwise limit the scope of the condition to only lived experiences of those \nessentialized categories of “females.” Furthermore, although often associated with the \ndisease, “menstruation” is not synonymous with “endometriosis.”\n\n270  H. C. GUIDONE\ncomorbidities (Parazzini et al. 2017), endometriosis can result in significantly \nreduced quality of life. Although considered ‘benign,’ the disease may also be \nassociated with higher risks of certain malignancies and shared characteristics \nwith the neoplastic process (Matalliotakis et al. 2018; He et al. 2018).\nEndometriosis is estimated to affect nearly 176 million individuals glob-\nally (Adamson, Kennedy, and Hummelshoj 2010), and ranks high among the \nmost frequent causes of chronic pelvic pain (van Aken et al. 2017). A lead-\ning contributor to infertility, gynecologic hospitalization, and hysterectomy \n(Yeung et al. 2011; McLeod and Retzloff 2010; Ozkan et al. 2008), systemic \ninfluences of the disease can significantly impair physical, mental, emotional, \nand social health (Marinho et al. 2018). Definitive cause remains elusive, as \ndoes universal cure or prevention, and much of the discourse surrounding \netiology and treatments remains ardently debated. Endometriosis imposes a \nstaggering healthcare burden on society, with associated costs soaring into the \nbillions (Soliman, Coyne, et al. 2017).\nThe complexities of this multidimensional condition remain poorly elu-\ncidated in current scientific works and little progress has been made toward \ndeciphering endometriosis. Although research seems omnipresent, much of \nit is redundant in nature and the few qualitative studies conducted on the \n realities of living with the disease lack rigor (Moradi et al. 2014).\nThough classically viewed as a ‘disease of menstruation,’ a uterus and \nroutine menses are not de rigueur to diagnosis. The condition has been \ndocumented in post-hysterectomy/postmenopausal individuals (Ozyurek, \nYoldemir, and Kalkan 2018; Soliman, Du, et al. 2017), rare cis males \n(Makiyan 2017, et al.), gender diverse people (Cook and Hopton 2017; \nYergens 2016) and the human fetus (Schuster and Mackeen 2015; Signorile \net al. 2010, 2012). Nevertheless, many continue to link the condition to \nsimply ‘painful periods’ despite its profound impact far and apart from  \nmenses.\nComprehensive review of treatments for endometriosis, and the ensuing \ndebates encompassing each, is outside the scope of this writing. However, \ntimely diagnosis and multidisciplinary, integrative treatment are necessary to \nMuch of what is communicated about endometriosis, particularly in the scientific \nliterature and media, reflects a stagnant belief system that perpetually confounds the \ndiagnostic and treatment processes. Whilst medical knowledge, clinical experience and \ntherapies are ever-evolving, the condition remains fundamentally mired in outdated \nassumptions that invariably lead to poor health outcomes. If we are to achieve real \nprogress, we must strive towards an ideology which is truly reflective of modern \nconcepts in order to elevate the condition to the priority public health platform it \nwell deserves. To that end, though not intended as exhaustive or all-encompassing, \nthe author has endeavored to incorporate the most current, authoritative facts about \nendometriosis herein—some of which run contrary to public doctrine.\n\n22 THE WOMB WANDERS NOT: ENHANCING ENDOMETRIOSIS EDUCATION …   271\neffectively manage the condition—yet universal access to quality care remains \nlimited in many settings, due in large part to dismissal of symptomology.  \nIn brief:\nLaparoscopic excision is one of the most effective therapeutic options \n(Donnellan, Fulcher, and Rindos 2018; Franck et al. 2018; Pundir et al. \n2017), affording biopsy-proven diagnosis and subsequent removal of lesions \nat the time of the surgical encounter. However, accuracy of diagnosis and \ntreatment depends on ability of the surgeon to adequately identify the tissue \nin all affected areas.\nSecondary to surgery are medical therapies. No drugs for endometriosis \nare curative; all have potential side effects (Rafique and Decherney 2017) and \nsimilar clinical efficacy in temporary reduction of pain. Menstrual suppres-\nsion—which does not treat endometriosis, only symptoms—further supports \nthe perception that menstruation is ‘unhealthy’ and requires pharmaceutical \nintervention.\nDespite over 100,000 hysterectomies being performed annually as of this \nwriting for a primary diagnosis of endometriosis and approximately 12% of \nindividuals with the disease eventually undergoing hysterectomy as ‘treatment,’ \nthere is an approximate 15% probability of persistent pain after hysterectomy, \nwhich may be due to incomplete disease removal, and a 3–5% risk of worsen-\ning pain or new symptom development (Rizk et al. 2014). Nor is menopause \nprotective, with an estimated 2–4% of the endometriosis population being post-\nmenopausal (Suchońska et al. 2018). In fact, postmenopausal endometriosis \nhas demonstrated a predisposition to malignant change, greater tendency for \nextrapelvic spread, and development into constrictive and/or obstructive lesions \n(Tan and Almaria 2018).\nDerived from the misogynist, antediluvian belief that painful menstrua-\ntion was ‘ordained by nature as punishment for failing to conceive’ (Strange \n2000, 616), pregnancy has long been suggested as a treatment or even cure \nfor endometriosis. Nonetheless, pregnancy is not a ‘treatment’ option in any  \ncurrent clinical guidelines (Young, Fisher, and Kirkman 2016), nor does  \nit prevent or defer progression of endometriosis (Setúbal et al. 2014). \nMoreover, the disease is linked to infertility, miscarriage, and potential \n complications in obstetrical outcomes (Shmueli et al. 2017) and ectopic \n pregnancy (Jacob, Kalder, and Kostev 2017).\nFinally, adjuncts like pain management and pelvic physical therapy are \nalso often recommended post-surgically to address secondary pain gener -\nators common with endometriosis that is, pelvic floor dysfunction. Other  \nalternative and complementary measures may also be considered.\nd efying  d ogma : ‘Killer  Cramps ’ a re  n oT  n ormal\nClassic presentations of endometriosis include but are not limited to abdomin-\nopelvic pain, infertility, dyschezia, dyspareunia, dysuria, physiologic dysfunction, \nand significantly reduced quality of life. Extrapelvic disease, while less common \n\n272  H. C. GUIDONE\n(Chamié et al. 2018), may manifest in a variety of ways for example, catamenial \npneumothorax. Among the most widely recognized of endometriosis symptoms \nis incapacitating menstrual cramping (‘dysmenorrhea’).\nIndeed, menstrual pain without pelvic abnormality (“primary dysmenor -\nrhea”) is among the most common of gynecological disorders. Though accu-\nrate prevalence of dysmenorrhea is difficult to establish, it is estimated to \nimpact up to 93% of adolescents (De Sanctis et al. 2015) and between 45 and \n95% of all people with periods. When interviewed by Writer Olivia Goldhill \n(2016) for her heralded Quartz article on the lack of research into dysmen-\norrhea, Professor John Guillebaud went on record stating “period cramping \ncan be almost as bad as having a heart attack.” Though some have questioned \nthe notion that any degree of menstrual pain is “normal” (Dusenbery 2018, \n221), primary dysmenorrhea generally maintains a good prognosis.\nConversely, severe pain failing to respond to intervention (“secondary dys-\nmenorrhea”) is typically associated with conditions like endometriosis and \nwarrants timely intervention (Bernardi et al. 2017). Moreover, a link between \ndysmenorrhea and the future development of chronic pelvic pain has been \nsuggested (Hardi, Evans, and Craigie 2014), though symptoms are rou-\ntinely misdiagnosed or otherwise dismissed (Bullo 2018). As a result, those \nsuffering may be disparaged as ‘menstrual moaners’ or portrayed as simply \nunable to ‘cope with normal pain’ (Ballard, Lowton, and Wright 2006)—yet \nnearly 70% of adolescents with intractable dysmenorrhea or pelvic pain that \nfails to respond to initial therapy will later be diagnosed with endometriosis \n(Highfield et al. 2006).\nDelays in the diagnosis of causative gynepathologies persist at the \n individual and medical level. To that end, healthcare professionals must  \nengage patients in conversations which remain sensitive to cultural context, \nperceptions, and attitudes, yet draw out possible menstrual issues early so \nindividuals are treated in timely and effective ways that harmonize with their \nspecific needs.\ne mbodied  e xperienCe\nA widespread lack of public education about pelvic pain and \n menstrual-related disorders persists. As a result, endometriosis remains \nunder-diagnosed, inadequately treated and frequently marginalized. \nInappropriate diagnostic tests, poor history taking, provision of temporary \nanalgesics or hormonal suppression to merely treat symptoms—but not the \ndisease itself–creates confusion in diagnosis, postponement in diagnostic con-\nfirmation and mismanagement (Riazi et al. 2014). Only a minority of studies \nadds to the contextual information required to understand what it means to \nactually struggle with endometriosis.\nMisinformation about the disease remains ubiquitous, saturating the \nhealthcare and public sectors. Affected individuals may delay seeking care for \n\n22 THE WOMB WANDERS NOT: ENHANCING ENDOMETRIOSIS EDUCATION …   273\ntheir symptoms, believing them to be a part of ‘normal’ menstruation, and \nhealthcare workers may in turn dismiss their pain as “imaginary” (Bloski and \nPierson 2008). To that end, healthcare encounters have been expressed as \ndouble-edged, both destructive and constructive; affecting not only the per -\nception of the individual’s physical condition, but her self-esteem, body, and \nsexuality (Grundström et al. 2018) as well. As a result, those with the con-\ndition must often become ‘expert’ or ‘lead’ patients; that is, those who are \n proactive with respect to their health and possess knowledge of their disease \nand symptoms in order to effectively direct and manage their own care.\nIndividuals with the endometriosis from all backgrounds have long \ndescribed journeys characterized by ignorance, disbelief, and lack of knowl-\nedge on the part of their doctors and the public. Encountering attitudes that \nthey ‘exaggerated or imagined their symptoms or [have] low pain thresh-\nolds’ and further insinuation that “psychological factors or former abuse \nenhanced the symptoms” (Grundström et al. 2018, 8) may compound feel-\nings of vulnerability and anxiety. Many “feel angry and frustrated when they \n[have] experiences with doctors who misdiagnosed, did not diagnose, delayed \ndiagnosis of endometriosis, or just generally did not listen to their concerns, \nsymptoms, and experiences” (Moradi et al. 2014). Not surprisingly, some \npeople with endometriosis may resort to maladaptive coping strategies as a \nresult (Zarbo et al. 2018).\nClark (2012, 83) has described the impact endometriosis may have on a \nwoman’s sense of identity: “self-doubt plagued many . . . where they ques-\ntioned their perception of the severity of the symptoms and ultimately their \nown sanity; mainly due to not being believed by medical practitioners and \nother lay people.” Yet as Culley et al. demonstrated (2013), the distress so \ncommonly experienced by those with endometriosis is in fact related in large \npart to dissatisfaction with care for the disease. The authors correctly sug-\ngest the negative social and psychological impacts of the condition could be \nimproved by a number of strategies; not least of which include practitioner \neducation efforts and raising awareness via education through schools and \nsupport groups.\np andora ’s  Jar : The  i mpaCT  of  The  Wandering  Womb  \nand  h ysTeria  on  e ndomeTriosis\nFrom Greek hysterikos (‘of the womb’), assumptions on the ‘wandering’ \nuterus have long influenced attitudes about women’s health. Since the genesis \nof gynecology arose from the mythical first woman, Pandora, the womb was \nbelieved to have ‘no natural home.’ Identification of Pandora’s jar (pithos) as \na uterus has been widely represented in Hippocratic gynecology and Western \nart; its subsequent opening brought forth ‘a range of evils including disease’ \n(King 1998, 2, 47–48, 58).\n\n274  H. C. GUIDONE\nAnxiety, sense of suffocation, tremors, convulsions, or paralysis and \nmore have been attributed to the ‘migratory uterus’ (Tasca et al. 2012). \nHippocrates remains largely credited for grouping such issues under the  \nsingle designation of “hysteria,” though King (1998) challenges such ascrip-\ntion (227, 237). Nonetheless, early physicians suggested that ‘hysteria’ could \nbe counted among the ‘… symptoms of menstruation.’ Some advised that \nwomen who frequently displayed nervous or hysterical symptoms in relation \nto menses ‘ought to be incarcerated for their own safety and the good of \nsociety’ (Strange 2000, 616); a tenuous correlation might even be drawn to \ntoday’s menstrual huts.\nNezhat, Nezhat, and Nezhat (2012) further suggest there is irrefutable \nevidence that “hysteria, the now discredited mystery disorder presumed for \ncenturies to be psychological in origin, was most likely endometriosis in the \nmajority of cases …” and as Jones (2015) proposes, discourse about the dis-\nease is “at least related to if not influenced by the social forces that shaped a \ndiagnosis of hysteria” (1084).\nThough ‘hysteria’ has been largely abandoned in modern nomenclature, \nthe legacy of its impact persists. Today, symptoms of endometriosis may dis-\nmissed not as hysteria but ‘somatization’ (Pope et al. 2015). Women’s pain is \nroutinely under-treated, labeled inappropriately as having a sexually transmit-\nted infection, told their symptoms are ‘in their head’ (Whelan 2007) or too \noften, simply not heard (Moradi et al. 2014).\nEndometriosis also remains tethered to psychological profiling, with those \nsuffering routinely described as high risk for anxiety, depressive symptoms, \nand other psychiatric disorders. In fact, however, it has been demonstrated \nthat the presence of pain—versus endometriosis per se—is associated with \nsuch psychological and emotional distress (Vitale et al. 2017). Whelan (2007) \nfurther asserts what those with the endometriosis well know: “[c]ertainly, \nmedical experts’ ways of representing endometriosis often undermine the \ncredibility of patient accounts . . . patients have often been represented in the \nmedical literature as nervous, irrational women who exaggerate their symp-\ntoms” (958). Indeed, endometriosis is very much a corporeal condition with \nno regard for race, religious, sexual, socioeconomic, or mental health status.\ns ampson  and  The  i TineranT  UTerine  TissUe\nReminiscent of the migrating womb, much of the dogma guiding endo-\nmetriosis treatment and research today is rooted in the archaic supposition \nthat the disease is caused by normal endometrium that has ‘roamed’ to dis-\ntant sites. Just as the uterus does not wander, however, nor do fragments of \nentirely normal uterine tissue simply meander idly hither and yon resulting in \nendometriosis.\nThe premise of the condition arising from wholly normal albeit peri-\npatetic endometrium sustains a century-old concept based on the works  \n\n22 THE WOMB WANDERS NOT: ENHANCING ENDOMETRIOSIS EDUCATION …   275\nof Dr. John Sampson (1927). Essentially, he considered endometriosis \nlesions to be comprised of ordinary endometrial cells; in fact, while some-\nwhat resembling native endometrium, they are not identical (Ahn et al. \n2016)—an important distinction. An abundance of differential invasive, adhe-\nsive, and proliferative behaviors have been demonstrated in the eutopic and \nectopic counterparts of endometrial stromal cells in patients with the disease \n(Delbandi et al. 2013), and the tissue is functionally dissimilar (Zanatta et al. \n2010).\nContrary to Sampson’s Theory, there is also evidence of endometriosis in \ncis males (Rei, Williams, and Feloney 2018, et al.), the human fetus (Signorile \net al. 2009, 2010, 2012), females who have never menstruated (Suginami \n1991; Houston 1984), and premenarcheal girls (Gogac et al. 2012; Marsh \nand Laufer 2005). The premise of ‘retrograde periods’ also fails to account \nfor extrapelvic endometriosis in most cases. Moreover, though reflux men-\nses is very common among people with periods, not all develop endometrio-\nsis; the incidence of disease is small compared to the occurrence of backflow \nexperienced by most menstruators (Ahn et al. 2015). Similarly, as Redwine \n(1988) confirmed decades ago, endometriosis lacks the characteristics of an \nautotransplant (Khazali 2018).\nUndeniably, pathogenesis remains rife with contention. Differing theo-\nries on varied mechanisms abound; stem cells, genetic polymorphisms, dys-\nfunctional immune response, and an aberrant peritoneal environment have \nall been suggested in the establishment of endometriosis (Sourial, Tempest, \nand Hapangama 2014). The evidence also favors embryologic origins, with \nadditional cellular and molecular mechanisms involved (Signorile et al. 2009, \n2010, 2012; Redwine 1988). Nevertheless, no unifying theory to date \naccounts for all of described manifestations of endometriosis (Burney and \nGiudice 2012).\nUnremiTTing  m isinforma Tion , m ensTrUal  Taboos , \nand  d iagnosTiC  d elay\nMuch of society’s derogatory view of menstruating individuals, including \nwithin the political sphere (‘blood coming out of her wherever …’), remains vir -\ntually unchanged, and the very normal physiological process of menstruation \nremains linked to unfavorable attitudes in all cultures (Chrisler et al. 2015). \nPeriods are still considered taboo in many parts of the world, with persistent \nknowledge gaps resulting in part from poor puberty guidance (Chandra-\nMouli and Patel 2017). Research on menstrual cycle-related risk factors is \nlacking (Harlow and Ephross 1995), and the media continues to reinforce \nmisconceptions around social captivity, restrictions, professional inefficiency, \nphysical, and mental discomfort (Yagnik 2012) related to menses. Menstrual \nbleeding continues to be portrayed as “messy, inconvenient, and [an] unnec-\nessary phenomenon to be controlled or possibly eliminated” (McMillan and \n\n276  H. C. GUIDONE\nJenkins 2016, 1). Yet, with a nod to Bobel and Kissling (2011): “menstru-\nation matters:” menstrual history is a key component in a comprehensive \nwomen’s health assessment and an increasingly important variable in disease \nresearch (McCartney 2016).\nFor many, persistent taboos and perpetuation of ‘period shaming’ come \nat a high price: menstrual pain specifically, such as that often accompanying \nendometriosis, is routinely dismissed. Hence, the path to diagnosis is largely \ndependant upon the individual’s own “knowledge and experience of painful \nmenstruation and other symptoms and whether they know other people who \nhave been diagnosed” (Clark 2012, 85).\nDelayed diagnosis serves as a high source of stress responsible for an \nimportant psychological impact on individuals with endometriosis. Average \ndiagnostic delays worldwide hover around 7.5 years (Bullo 2019) or even \nlonger, with continued resistance to timely intervention and referrals. Indeed, \nseveral clinicians consider themselves inadequately trained to understand and \nprovide psychosocial care for patients with the disease (Zarbo et al. 2018). \nConversely, earlier diagnosis and efficient intervention decreases productivity \nloss, quality of life impairment, and healthcare consumption, consequently \nreducing total costs to patients and society alike (Klein et al. 2014).\nStudies reveal a relationship between ambivalent sexism and more nega-\ntive attitudes toward menstruation, which may also lead to reticence to report \nmenstrual cycle-related symptoms (Marván, Vázquez-Toboada, and Chrisler \n2014). Others may deliberately conceal concerns for fear of stigmatization,  \nfurther leading to diagnostic delay (Riazi et al. 2014). Still others may seek \nto reduce stigma associated with menstruation through ‘menstrual  etiquette’ \n(Seear 2009), perpetuating social rules and normative expectations of \n menstruating persons and fearing that disclosure would result in embarrass-\nment or perception that they are ‘weak’ (Culley et al. 2013). The literature  \nfurther suggests some patients may simply fail to seek timely medical help due \nto their own inability to identify symptoms as ‘abnormal’—a failing of our \nmenstrual education system.\nTo navigate the experiences of menstruation, endometriosis, and other \n episodes related to pain or vaginal bleeding, individuals “require factual and \nsupportive information that enables them to differentiate between healthy \nand abnormal bleeding, to understand and take care of their bodies or those \nof dependents who may require assisted care, and to seek health advice appro-\npriately” (Sommer et al. 2017, 2). Yet, menstrual teachings remain hampered \nby deficient cycles of misinformation. Education and perception are primarily \ncommunicated by mothers, sisters, or friends who themselves may lack accu-\nrate understanding (Cooper and Barthalow 2007), with resulting poor body \nliteracy regarding reproductive anatomy, female hormones and their func-\ntions, effect of hormones on the menstrual cycle, ovulation, and conception \n(Ayoola, Zandee, and Adams 2016).\n\n22 THE WOMB WANDERS NOT: ENHANCING ENDOMETRIOSIS EDUCATION …   277\nLikewise, menstrual health education programs in school and community \nsettings remain deficient, particularly in low income settings, with many girls \nviewing school education about menstruation as “inaccurate, negative, and \nlate” (Herbert et al. 2017, 14).\nConqUering  The  p revailing  e Thos  of  m ensTrUal  s haming  \nTo  e ffeCT  p osiTive  Change\nThe perpetuation of menstrual shaming (for example, ‘The Curse’) has led \nto a prevailing ethos of generational taboos and lack of body literacy. There \nare consequences for such persistent bias, poor information systems, and \npractices; the resulting lack of education leads to delayed diagnosis and qual-\nity treatment of endometriosis and other gynepathologies with subsequent \nimpact on fertility, loss of libido and pleasurable sex, chronic pain, diminished \nquality of life, loss of sense of self, body-negative thoughts, and more.\nWhile disease knowledge has evolved, the deeply entrenched cultural \nnorms surrounding both endometriosis and menstruation must continue to \nbe challenged. Existing gaps must be bridged in order to eliminate the endur-\ning barriers that persist. How and when girls learn about menses and its asso-\nciated changes can impact response to the menstrual event and is critical to \ntheir knowledge, autonomy, and empowerment. Hence, it is necessary to \novercome persistent myths, increase authoritative awareness of endometrio-\nsis, and articulate effective strategies to develop more robust literacy on the \n condition than presently exists.\nCooper and Barthalow (2007) previously established the need for men-\nstrual education in schools, with the topic being offered even before \nmenarche in order to better prepare girls for the experience and continu-\ning throughout their educational career so that students can build upon \ntheir basic knowledge of the many themes involved with menstrual health. \nA  three-pronged approach has been suggested (Subasinghe et al. 2016) to \nbetter inform individuals about dysmenorrhea specifically: having the school \nnurse provide educational leaflets to increase familiarity with the condition; \nencouraging health professionals to be more proactive in asking patients \nabout the topic so that young menstruators with dysmenorrhea may be \nmore likely to disclose their pain and symptoms; and finally, joint promotion \nby health professionals and schools of reliable, authoritative websites, and \nresources for additional guidance.\nOni and Tshitangano (2015) previously proposed that school health teams \nmay also consider screening students for menstrual disorders in order to help \ndiagnose underlying pathological causes and attend such issues accordingly. \nSimilar findings on the need for adolescent education on the effective man-\nagement of dysmenorrhea suggest that extending the educational program to \nparents and school leaders is beneficial as well (Wong 2011).\n\n278  H. C. GUIDONE\nEvidence demonstrates that consistent delivery of a menstrual health \n education program in schools specifically increases awareness of endometrio-\nsis (Bush et al. 2017). Two successful examples of such programs are already \nunderway:\nThe Endo What? Documentary team School Nurse Initiative (https://\nwww.endowhat.com/school-nurse-initiative), founded by Shannon \nCohn, is a collaborative effort to provide endometriosis education and \nawareness among school nurses and their students and\nThe New Zealand model and the first of its kind in the world, developed \nover two decades ago by Deborah Bush, MNZM, QSM, Dip Tchg. \nLSB, Chief Executive of Endometriosis New Zealand (http://www.\nnzendo.org.nz/how-we-help/all-about-me). Both efforts have served to \neducate countless individuals.\nBuilding on the examples above, clinicians and the public alike will benefit \nfrom better understanding of endometriosis, thereby improving patient expe-\nriences and leading to improved outcomes. We must incorporate correct dis-\nease information along with ethical, social, cultural, economic, and diversity \nperspectives in emerging menstrual education curriculum.\nIn order to ensure appropriate intervention and reduce costly, unproven \nprotocols, like-minded collaborators from practitioner, allied and mental \nhealth and others need to engage in associated efforts. There must be an \nemphasis placed on optimal pathways, evaluation of modern concepts, and \ncross-collaborative strategies. It is imperative that all individuals know when, \nwhere and how to obtain help when symptoms of menstrual-related disor -\nders first arise, and it is vital that the public, including but not limited to, \nlegislators, hospital administrators, gynecologists, and subspecialists become \ninvolved in these efforts.\nMoreover, in that mothers often traditionally teach their daughters, we \nmust rectify misperceptions and offer instruction on menstrual practices and \ndisorders like endometriosis by providing compulsory education at school, in \nclinics, and kinship settings in order to encourage story-telling narratives and \nbreak the legacy of silence, misinformation, and fear. We must better eluci-\ndate the parameters of normal versus abnormal bleeding, pain, and related \nsymptomology in order to recognize disorder and pain signaling throughout \nthe cycle.\nTo address difficulties faced by low resource and medically underserved \ncommunities, use of participatory/community-based efforts, integrated mes-\nsaging during clinic visits, and use of Information Technology (IT) and digi-\ntal health tools where applicable can improve access to healthcare services and \ninformation in ways that enhance patient knowledge and self-management, \nthereby positively impacting health outcomes.\n\n22 THE WOMB WANDERS NOT: ENHANCING ENDOMETRIOSIS EDUCATION …   279\nThrough stakeholder partnerships, we can foster new menstrual educa-\ntional programs to produce high-quality educational materials and afford \nbetter outcomes for all. A strong public health agenda for menstrual/ \nendometriosis education must include a collaborative interface among public \nhealth, community and non-healthcare sectors.\ns Ummary\nEndometriosis has the propensity to take away so many of an affected \n individual’s choices: when and whether to engage in sex, when or if to  \npursue fertility, whether or not to undergo invasive procedures or to choose \n oft-ineffective menstrual suppressives that alter her cycle and more. We must \nstrive toward early recognition and diagnosis, better understanding of patho-\nphysiology and pain mechanisms, increased translational research and dissem-\nination of authoritative facts on a widespread basis, starting with menstrual \neducation among youth.\nThe current deficiency in quality menstrual education leads to confusion, \ninaccurate beliefs about and negative views on menstruation and related \nconditions. Though steps forward have been made, many individuals lack \nunderstanding of what constitutes menstrual dysfunction and when, where \nand how to seek care. It is imperative that patients and health professionals \nalike become better educated on the clinical characteristics of endometrio-\nsis, not least general practitioners and school nurses, who play crucial roles \nin early diagnosis. This is achievable through menstrual education programs \nthat incorporate the disease as a leading cause of pain. Outlining optimal \ncare pathways, encouraging timely recognition, improving research priorities, \naccepting modern concepts and emphasizing appropriate, cross-collaborative \nstrategies to optimize outcomes can transform endometriosis care and reduce \nthe role of ‘menstrual silence’ in its diagnosis and treatment.\nEmbarking on robust educational programs which begin in the primary \nsetting and are shared across varied resources will enhance literacy on pain-\nful menstruation and gynepathologies, thereby affording access to better, \nearlier care and improving the lives of the millions suffering. By revitalizing \nmenstrual communication and key conversations, we can put an end to the \nsecrecy, silence, shame, and pain.\nr eferen Ces\nAdamson, D., S. Kennedy, and L. Hummelshoj. 2010. “Creating Solutions in \nEndometriosis: Global Collaboration Through the World Endometriosis Research \nFoundation.” Journal of Endometriosis and Pelvic Pain Disorders 2 (1): 3–6.\nAhn, S. H., K. 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If material is not included in the chapter’s Creative Commons license and \nyour intended use is not permitted by statutory regulation or exceeds the permitted \nuse, you will need to obtain permission directly from the copyright holder.","source_license":"CC0","license_restricted":false}